oversight

SSI Children: Multiple Factors Affect Families' Costs for Disability-Related Services

Published by the Government Accountability Office on 1999-06-28.

Below is a raw (and likely hideous) rendition of the original report. (PDF)

                 United States General Accounting Office

GAO              Report to Congressional Committees




June 1999
                 SSI CHILDREN
                 Multiple Factors Affect
                 Families’ Costs for
                 Disability-Related
                 Services




GAO/HEHS-99-99
      United States
GAO   General Accounting Office
      Washington, D.C. 20548

      Health, Education, and
      Human Services Division

      B-276532

      June 28, 1999

      The Honorable William V. Roth, Jr.
      Chairman
      The Honorable Daniel Patrick Moynihan
      Ranking Minority Member
      Committee on Finance
      United States Senate

      The Honorable Bill Archer
      Chairman
      The Honorable Charles B. Rangel
      Ranking Minority Member
      Committee on Ways and Means
      House of Representatives

      This report, entitled SSI Children: Multiple Factors Affect Families’ Costs for Disability-Related
      Services (GAO/HEHS-99-99), responds to the mandate in Public Law 104-193, the Personal
      Responsibility and Work Opportunity Reconciliation Act, that we report on the disability-related
      expenses incurred by families of children on Supplemental Security Income (SSI) that are not
      covered by federal, state, and local programs serving children with disabilities. In this report,
      we provide data on families’ total annual disability-related costs and the factors that influence
      the level of such costs. We also identify factors affecting families’ receipt of disability-related
      services from other programs.

      We are sending copies of this report to The Honorable Kenneth S. Apfel, Commissioner of
      Social Security; The Honorable Richard W. Riley, Secretary of Education; The Honorable Donna
      E. Shalala, Secretary of Health and Human Services; and others who are interested. We will also
      make copies available to others upon request.

      Please contact me on (202) 512-7215 if you or your staff have any questions concerning this
      report. Other GAO contacts and staff acknowledgments for this report are listed in appendix III.




      Cynthia M. Fagnoni
      Director, Education, Workforce, and
        Income Security Issues
Executive Summary


             The Congress established the Supplemental Security Income (SSI)
Purpose      program, which is administered by the Social Security Administration
             (SSA), in 1972 to provide cash payments to aged individuals and blind and
             disabled adults and children with limited income and resources. Families
             of children receiving SSI benefits may spend these cash payments for any
             purpose that meets a child’s current and future needs, including food,
             clothing, shelter, and utilities, as well as disability-related services.1 In
             addition to these cash payments under the SSI program, families can obtain
             disability-related services through other programs. From the end of 1989
             through 1996, the number of children younger than 18 receiving SSI
             disability benefits more than tripled, from 265,000 to 955,000, and benefit
             payments increased from $1.2 billion to about $5.2 billion. This growth in
             the rolls, and allegations that some parents were coaching their children to
             feign disabilities in order to receive SSI benefits, caused concerns about the
             children’s component of the SSI program.2

             In this context, during the debate that led to the passage of the Personal
             Responsibility and Work Opportunity Reconciliation Act of 1996 (P.L.
             104-193, commonly referred to as welfare reform), some members of the
             Congress expressed uneasiness about how families of children on SSI used
             their cash benefits and introduced provisions substituting
             disability-related services for the cash benefits. As ultimately enacted, the
             law did not replace cash benefits with services for children. Instead, the
             law mandated that GAO study and report on the disability-related expenses
             incurred by families of children on SSI that are not covered by federal,
             state, and local programs serving children with disabilities. In response to
             this mandate, GAO (1) examined the disability-related costs that families of
             children on SSI incur and the factors that influence the level of such costs
             and (2) identified factors affecting families’ receipt of disability-related
             services from programs.3



             1
              In most cases, a disabled child’s SSI benefit is paid on behalf of the child to a “representative payee,”
             such as a parent or relative. The representative payee is responsible for determining the child’s
             needs—defined as the immediate and reasonably foreseeable essentials for living—and for using the
             payments only for the child’s use and benefit. Representative payees must submit reports accounting
             for the use of benefits when SSA asks them to do so.
             2
             For GAO’s report on the issue of coaching, see Social Security: New Functional Assessments for
             Children Raise Eligibility Questions (GAO/HEHS-95-66, Mar. 10, 1995).
             3
              Disability-related services are services or items attributable to a child’s disability, such as a ramp to
             the home of a child in a wheelchair, mobility equipment, specialty medical services, or special
             recreation. Families’ disability-related costs are nonreimbursed expenses for disability-related services
             that families purchase in whole or in part out of their SSI or other family income. “Program” refers to
             public and private organizations and agencies providing services for free, on a sliding fee scale, or for a
             small copayment or deductible, to, among others, children with disabilities.



             Page 2                                             GAO/HEHS-99-99 Supplemental Security Income
                                               Executive Summary




                                               In 1998, about 885,000 children received about $4.9 billion in federal SSI
Background                                     payments, with an average monthly amount of about $430 per child.
                                               Children may qualify for SSI if they are unmarried and meet the applicable
                                               SSI financial and disability requirements. To be considered disabled, a child
                                               younger than 18 must have a medically determinable physical or mental
                                               impairment that results in marked and severe functional limitations and
                                               that has lasted or can be expected to last for a continuous period of not
                                               less than 12 months or that can be expected to result in death.

                                               An array of federal, state, and local programs offer a range of services and
                                               assistance to children with disabilities and their families.4 Table 1
                                               describes major public programs and details whether they give special
                                               consideration to children on SSI.


Table 1: Major Public Programs Serving Children With Disabilities
Program                                   Purpose                                                  SSI link
Medicaid                                       To pay for medically necessary health care Most children receiving SSI are
                                               services.                                  automatically eligible for Medicaid.
Medicaid’s Early and Periodic Screening,       To identify and treat children’s health      Children receiving Medicaid, including
Diagnostic, and Treatment (EPSDT)              problems before they become complex or those receiving SSI, are entitled to EPSDT
                                               disabling and require more costly treatment. services.
Medicaid’s Home and Community-Based            To offer community-based long-term care             Children receiving SSI are not given
Services Waiver                                services in order to prevent or postpone            special consideration.
                                               institutionalization.
Early Intervention (part C, Individuals With   To enhance development and minimize                 Children receiving SSI are not given
Disabilities Education Act)                    and perhaps preclude later need for                 special consideration.
                                               special education services or
                                               institutionalization.
Special Education (part B, Individuals With    To ensure that all children with disabilities Children receiving SSI are not given
Disabilities Education Act)                    have available to them a free appropriate     special consideration.
                                               public education, through special
                                               education and related services designed to
                                               meet their unique needs.
Children With Special Health Care Needs        To provide and promote family-centered,             Children younger than 16 receiving SSI are
(title V, Social Security Act)                 community-based care, including care                to be referred for rehabilitation services to
                                               coordination services, and to aid in                the state agency administering the title V
                                               developing community-based systems of               program.
                                               care; to provide rehabilitation services to
                                               children younger than 16 receiving SSI.
State family support programs                  To support families in their efforts to raise       Children receiving SSI are not given
                                               their children with disabilities in the family      special consideration.
                                               home.



                                               4
                                                Although Medicaid serves children and adults without disabilities, GAO included the program in this
                                               group because, in most states, children on SSI are automatically eligible for Medicaid.



                                               Page 3                                           GAO/HEHS-99-99 Supplemental Security Income
                   Executive Summary




                   Recent survey data show that families obtain from public programs many
Results in Brief   disability-related services for their SSI children. However, these programs
                   do not cover the cost of all such services—families pay for some services
                   out of their own income, which includes their children’s SSI payments.
                   Although nationwide data are not available to calculate the precise level of
                   these expenditures, survey data on Florida families with SSI children shed
                   some light on this question. About 87 percent of the Florida families
                   surveyed in 1996 reported that they incurred disability-related costs. About
                   three-quarters of these families spent $3,000 or less and half spent $1,000
                   or less on disability-related services over the past year. About 90 percent
                   of the families in the Florida survey who incurred disability-related costs
                   incurred total annual costs that were less than the maximum allowable SSI
                   payments for the year, and about 10 percent reported costs that exceeded
                   the maximum payments. Such data, however, do not reflect whether a
                   child’s service needs have been met. Data on expenditures do not reflect
                   services that families needed but did not purchase because they could not
                   afford them. Whether a family can afford to purchase services, and the
                   need to purchase certain types of services, is affected by a family
                   member’s decision to work or stay at home to care for a child with a
                   disability.

                   A variety of factors may affect families’ ability to obtain services through
                   other programs. First, SSI beneficiary status generally does not entitle a
                   child to a program’s services. Because of certain aspects inherent to the
                   design of a program—such as eligibility criteria, the number of available
                   service slots, and whether a program covers needed services—some SSI
                   children do not receive services from programs. Second, because of
                   difficulties in identifying which children need services and what services
                   they need, some children who need services may be overlooked. Third,
                   once a child’s service needs are identified, gaining access to some program
                   services can be difficult because of the shortage of service providers in
                   some areas and program officials’ concerns about the cost of providing
                   some services. Finally, families play an important role in obtaining
                   services for their children. But some families’ limited knowledge of
                   programs and services, limited ability to proactively pursue services to
                   which they may be entitled, or lack of transportation or other supports
                   hinders their ability to obtain services for their children.




                   Page 4                              GAO/HEHS-99-99 Supplemental Security Income
                              Executive Summary




Principal Findings

Families Incur a Wide         Families with children on SSI obtain a broad range of disability-related
Range of Disability-Related   services. Some they obtain from programs and some they purchase
Costs                         themselves. Data from the 1994 and 1995 National Health Interview Survey
                              and a 1996 Florida survey show that, collectively, families with children on
                              SSI purchased a broad range of disability-related services.5 In particular,
                              about 87 percent of the Florida survey families reported purchasing
                              disability-related services for their children and incurring a wide range of
                              costs. The remaining 13 percent of families did not report or did not incur
                              any disability-related costs. Families in the Florida survey reported total
                              disability-related expenditures ranging from $10 to more than $26,000 per
                              year. Although SSI payments may be used for any type of expenditure
                              (such as food, clothing, or shelter) that meets the current and future needs
                              of the disabled child, to provide a perspective on the magnitude of these
                              costs, GAO compared annual total costs with the maximum SSI payments a
                              family could receive for a child for a year.6 About 90 percent of the
                              families in the Florida survey who incurred disability-related costs
                              incurred total annual costs that were less than the maximum allowable SSI
                              payments for a year, and about 10 percent reported costs that exceeded
                              the maximum payments.7

                              While it might seem from the expenditure data that SSI payments are
                              sufficient to cover disability-related costs for most families in Florida,
                              such data do not indicate whether a child’s disability-related needs have
                              been met or whether or the extent to which families might have purchased
                              additional needed services had they not faced constraints on their income.
                              Moreover, the data do not allow GAO to assess the extent to which families
                              make tradeoffs between purchasing disability-related services and
                              purchasing basic necessities for the entire family. In this regard, data from
                              both surveys show that nearly 40 percent of the respondents reported that
                              they needed but did not obtain one or more services for their children.


                              5
                               Data are from the National Center for Health Statistics’ 1994 and 1995 National Health Interview
                              Survey, including the Disability Supplement and Disability Followback Child’s Questionnaire, and the
                              1996 University of Florida’s Institute for Child Health Policy survey of children with special health care
                              needs.
                              6
                               The monthly maximum SSI payment in 1996 was $470. This amount for the year was $5,640.
                              7
                               GAO also compared families’ total annual costs with the mean annual SSI payment for children in
                              Florida in 1996, which amounted to $5,181 as of December 1996. GAO found that about 86 percent of
                              the Florida families who incurred disability-related costs incurred total annual costs below the mean
                              annual SSI payment.



                              Page 5                                             GAO/HEHS-99-99 Supplemental Security Income
                           Executive Summary




                           And these data are likely to underestimate the extent to which families
                           were unable to obtain needed services because the surveys generally
                           asked about the need for services that were not obtained at all but rarely
                           asked about the need for additional services that were obtained but in
                           insufficient quantity.

                           From GAO’s analysis of survey data and information from site visits, GAO
                           found that a variety of factors, aside from a child’s particular service
                           needs, influence the purchase of disability-related services and, hence, the
                           level of a family’s costs for them. A key reason that some families do not
                           purchase such services is that they cannot afford them. In the Florida
                           survey, about 60 percent of families who were unable to obtain one or
                           more needed services for their children reported that they did not obtain
                           the services because they were too expensive. Another factor is
                           employment: A family member’s decision to work or stay at home to care
                           for a child with a disability affects not only the family’s income, and thus
                           the ability to purchase services, but also the need to purchase certain
                           services, such as some types of specialized day care, that the family
                           member at home may now be able to provide. For example, nearly
                           40 percent of the families participating in the Florida survey reported that
                           caring for a child’s special needs caused someone in the family to not
                           work. And about 40 percent of Florida survey respondents reported that
                           family income decreased after the birth of a special-needs child.

                           Finally, whether families are able to obtain services from programs also
                           affects their disability-related costs. Survey data show that public
                           programs were widely cited as a source of full or partial funding for many
                           of the services that families obtained for their SSI children. For example,
                           families generally cited Medicaid and the school system as sources of full
                           or partial payment for medical care, educational services, and
                           therapies—such as physical or respiratory therapy. Moreover, data from
                           both surveys show that while some programs, including Medicaid,
                           provided certain types of services to some families, other families reported
                           purchasing the same types of services.


Program, Service, and      A variety of factors may affect some families’ receipt of services through
Family-Related Factors     programs. First, SSI beneficiary status generally does not entitle a child to a
Affect Some Families’      program’s services. As an illustration, children with mental
                           impairments—that is, 64 percent of all children receiving SSI—do not meet
Receipt of Services From   the eligibility criteria of the title V programs in 25 states, even though
Programs                   children on SSI are to be referred to the state title V program for



                           Page 6                                GAO/HEHS-99-99 Supplemental Security Income
Executive Summary




rehabilitation services.8 Even when a child meets a program’s eligibility
criteria, the child still may not be admitted to the program because the
number of available slots may be filled. And once a child has been
admitted, his or her service needs may still not be covered. Or, if the
program covers the services, the child may not fulfill the requirements to
receive them.

Second, because of difficulties in identifying which children need services
and what services they need, programs may miss an opportunity to serve
children. The process of identifying a child’s service needs is generally
separate from the process of determining that a child has a disability.
Making decisions about the type and amount of services a disabled child
needs is difficult: The decisions are inherently complex, and standardized
methodologies to aid in making some decisions are lacking. Another
difficulty, according to the results of research studies and site visit
interviews with program officials and case managers, is that some service
providers have an insufficient understanding about childhood disability.
For instance, although teachers play a key role in identifying students in
need of services and contributing to the process of determining what
services they need, research results and findings from site visits indicate
that some teachers are not fully prepared to play this role. Yet another
difficulty concerns the screening for EPSDT services. Studies show that
state Medicaid programs are not screening children for needed EPSDT
services at the frequency recommended by the Secretary of the
Department of Health and Human Services (HHS), which means that some
children may have disability-related service needs that these programs
have not identified.

Third, gaining access to some program services can be difficult, even when
a child’s service needs are identified. A child’s family may have difficulty
gaining access to services because some providers—and the services they
offer—are either unavailable or in short supply in some communities. For
example, among national survey participants who were unable to obtain
one or more needed services, about 40 percent responded that they did not
obtain the service because it was unavailable. Additionally, concerns of
program officials about service cost can affect a child’s receipt of special
education services such as technology devices. Moreover, some program
officials provide only limited information to families about community
resources or do not see themselves as responsible for providing
information about services available from other programs.


8
 A child with a mental impairment, such as mental retardation, could qualify for a title V program if he
or she has a qualifying secondary physical impairment.



Page 7                                            GAO/HEHS-99-99 Supplemental Security Income
                     Executive Summary




                     Overall, families play an important role in obtaining services for their
                     children but some are hindered by limited knowledge of programs and
                     services, limited ability to proactively pursue services to which they may
                     be entitled, or a lack of transportation or other supports. For example,
                     some families do not know about program services such as respite care. In
                     addition, case managers described some families as being hesitant to
                     assert their rights to services because they fear retaliation against their
                     children.


                     GAO provided copies of a draft of this report to SSA, the Department of
Agency Comments      Education, and HHS and components within HHS for their comments.
and GAO’s Response   Education said that the report provides a balanced treatment of the status
                     of children receiving SSI and their families. SSA generally concurred with
                     the draft report and noted that it is currently designing a survey of SSI
                     children that, when completed, will collect nationwide data regarding
                     costs of care and service utilization. SSA also said that the report provides
                     useful information on disability-related expenditures for children with
                     disabilities. However, the agency questioned the way in which GAO
                     compared disability-related costs with SSI benefits. Although SSI payments
                     may be used for any type of expenditure benefiting the child, GAO used
                     maximum allowable SSI payments as a means of comparing
                     disability-related costs across families. SSA expressed concern that the
                     results of this comparison could be taken out of context, or they could be
                     misinterpreted because many children (about 32 percent nationwide) do
                     not receive the maximum payment. Because GAO shared these concerns,
                     GAO presented the results of its comparison within a discussion of the
                     limitations of the data and methods GAO used. GAO used the maximum
                     allowable benefit amount because the survey data did not include
                     information on the exact amount of a family’s SSI payment. Moreover,
                     about 68 percent of SSI children nationwide receive the maximum benefit,
                     and families who receive less than the maximum benefit for a child usually
                     have additional sources of income. GAO also added to the report a
                     comparison of total annual costs with the mean annual SSI payment for
                     children in Florida in 1996. GAO found that using the mean annual SSI
                     payment yielded little or no difference in results in comparison with the
                     results obtained from using the maximum allowable benefit. Regardless of
                     the comparison measure used, or the representativeness of the cost data,
                     such a comparison does not indicate whether a child’s disability-related
                     needs are met or whether families with SSI children might purchase
                     additional needed services and, thus, incur greater costs if their incomes
                     were higher.



                     Page 8                               GAO/HEHS-99-99 Supplemental Security Income
Executive Summary




SSA, Education, and components within HHS, including the Health Care
Financing Administration and the Maternal and Child Health Bureau, also
provided GAO with technical comments. GAO has modified the report to
reflect these comments where appropriate.




Page 9                            GAO/HEHS-99-99 Supplemental Security Income
Contents



Executive Summary                                                                                    2


Chapter 1                                                                                           12
                        SSI Provides Cash Benefits to Children Who Have Disabilities and            12
Introduction              Limited Income and Resources
                        Other Major Programs Provide Disability-Related Services                    15
                        Objectives, Scope, and Methodology                                          20

Chapter 2                                                                                           25
                        Families Purchase a Broad Range of Services                                 25
Families Incur a Wide   Families’ Costs Vary Widely                                                 29
Range of                Multiple Factors Affect Families’ Level of Costs                            31
Disability-Related
Costs
Chapter 3                                                                                           39
                        Program Design May Affect Whether Children Receive Services                 39
Program, Service, and   Difficulties in Identifying Eligible Children and Their Needs May           42
Family-Related            Hinder Families in Obtaining Services
                        Gaining Access to Needed Program Services Is Sometimes                      45
Factors Affect            Difficult
Families’ Receipt of    Limited Program Knowledge and Other Circumstances Impede                    48
Program Services          Some Families From Obtaining Program Services

Appendixes              Appendix I: 38 Disability-Related Services Used in Collecting and           50
                          Analyzing Site Visit Data
                        Appendix II: Disability-Related Services Covered by Selected                53
                          Programs
                        Appendix III: GAO Contacts and Staff Acknowledgments                        57

Related GAO Products                                                                                60


Tables                  Table 1: Major Public Programs Serving Children With                         3
                          Disabilities
                        Table 1.1: Selected Demographic Characteristics of Children                 13
                          Receiving SSI in December 1998
                        Table 1.2: Major Public Programs Serving Children With                      16
                          Disabilities




                        Page 10                             GAO/HEHS-99-99 Supplemental Security Income
Contents




Table 2.1: Percentages of SSI Children in the NHIS Who Received           26
  Disability-Related Services and Whose Families Paid for Them
  Over the Past Year
Table 2.2: Percentages of SSI Children in the Florida Survey Who          27
  Received Disability-Related Services and Whose Families Paid for
  Them Over the Past Year
Table 2.3: Percentages of SSI Children in the NHIS Who Received           34
  Disability-Related Services and the Public and Private Sources
  That Paid for Them Over the Past Year
Table 2.4: Percentages of SSI Children in the Florida Survey Who          36
  Received Disability-Related Services and the Public and Private
  Sources That Paid for Them Over the Past Year
Table 3.1: Factors Affecting Families’ Receipt of Services From           39
  Programs




Abbreviations

CSHCN      children with special health care needs
EPSDT      Early and Periodic Screening, Diagnostic, and Treatment
HCFA       Health Care Financing Administration
HHS        Department of Health and Human Services
HSRI       Human Services Research Institute
IDEA       Individuals With Disabilities Education Act
IEP        Individual Education Program
NHIS       National Health Interview Survey
SSA        Social Security Administration
SSI        Supplemental Security Income
VA         Department of Veterans Affairs


Page 11                           GAO/HEHS-99-99 Supplemental Security Income
Chapter 1

Introduction


                        The Congress established the Supplemental Security Income (SSI)
                        program, which is administered by the Social Security Administration
                        (SSA), in 1972 to provide cash payments to aged individuals and blind and
                        disabled adults and children with limited income and resources. Families
                        of children receiving SSI payments may spend them for any purpose that
                        meets a child’s current and future needs, including food, clothing, shelter,
                        and utilities, as well as disability-related services.9 In addition to SSI, a
                        number of other federal and state programs provide assistance to children
                        with disabilities.


                        Children may qualify for SSI if they are unmarried and meet the applicable
SSI Provides Cash       SSI disability, income, and financial asset requirements. To be eligible, a
Benefits to Children    child younger than 18 must have “a medically determinable physical or
Who Have Disabilities   mental impairment which results in marked and severe functional
                        limitations, and which can be expected to result in death or which has
and Limited Income      lasted or can be expected to last for a continuous period of not less than
and Resources           12 months” and must have limited income and assets.10 Once a child is on
                        the SSI rolls, eligibility continues until (1) death, (2) SSA determines that the
                        child’s medical condition has improved to the point that he or she is no
                        longer considered disabled, (3) the family’s finances no longer meet SSI’s
                        eligibility requirements, or (4) SSA determines that the child, upon reaching
                        age 18, is not disabled according to adult disability criteria.11

                        Children on SSI receive cash benefits from the federal government.
                        Additionally, most states provide a supplemental cash benefit to these
                        children. In 1998, about 885,000 children received about $4.9 billion in
                        federal SSI payments, with an average monthly amount of about $430 per
                        child. Thirty-four states currently provide a supplemental cash benefit to
                        children receiving a federal payment. These states’ total state



                        9
                         In most cases, a disabled child’s SSI benefit is paid on behalf of the child to a “representative payee,”
                        such as a parent or relative. The “representative payee” is responsible for determining the child’s
                        needs—defined as the immediate and reasonably foreseeable essentials for living—and using the
                        payments only for the child’s use and benefit. Representative payees must submit reports accounting
                        for the use of benefits when SSA asks them to. We use “family” synonymously with “representative
                        payee.”
                        10
                         The definition of childhood disability is found in 42 U.S.C. 1382c(a)(3)(C)(i). SSA considers the
                        parent’s income and assets when deciding whether a child qualifies for SSI.
                        11
                          SSA is to conduct continuing disability reviews of certain groups of children to determine whether a
                        child has medically improved to the extent that the child is no longer disabled. SSA is required to
                        review the disability status of low-birthweight babies and children younger than 18 who are likely to
                        improve or, at the option of the commissioner, those who are unlikely to improve. SSA is also to
                        redetermine the disability eligibility for 18-year-olds, using adult criteria for disability.



                        Page 12                                            GAO/HEHS-99-99 Supplemental Security Income
                                        Chapter 1
                                        Introduction




                                        supplementation, however, is less than 6 percent of their federal and state
                                        payments.

                                        Table 1.1 shows selected demographic characteristics of children
                                        receiving SSI. For example, the population of children on SSI is fairly evenly
                                        distributed among four age groups: 0-5, 6-9, 10-13, and 14-17. About
                                        64 percent of children on SSI have a mental impairment, such as mental
                                        retardation, as their qualifying diagnosis. In addition, just one-fourth of all
                                        children on SSI reside in two-parent households. About 61 percent of
                                        children on SSI reside in single-parent households, nearly all headed by
                                        women. Another 13 percent of SSI children reside with other relatives or
                                        nonrelatives or in institutions or foster care. Further, nearly 70 percent of
                                        all SSI children reside in households with monthly incomes, not including
                                        SSI payments, of less than $1,000. Overall, about one-half of children
                                        receiving SSI are located in one of nine states; about one-third are
                                        concentrated as the table shows in California, New York, Florida, Texas,
                                        and Ohio.

Table 1.1: Selected Demographic
Characteristics of Children Receiving                                                                          Percent of
SSI in December 1998                    Characteristic                                              Number          total
                                        Total                                                        885,250        100.0%
                                        Age
                                        0-5                                                          174,150         19.7
                                        6-9                                                          222,370         25.1
                                        10-13                                                        251,590         28.4
                                        14-17                                                        237,140         26.8
                                        Gender
                                        Female                                                       323,430         36.5
                                        Male                                                         561,820         63.5
                                                               a
                                        Diagnosed impairments
                                        Mental impairments                                           523,270         63.9
                                        Physical impairments                                         216,230         26.4
                                        Otherb                                                        79,870           9.7
                                        State of residency
                                        California                                                    78,540           8.9
                                        New York                                                      70,140           7.9
                                        Florida                                                       59,890           6.8
                                        Texas                                                         50,100           5.7
                                        Ohio                                                          44,890           5.1
                                        Illinois                                                      42,420           4.8
                                                                                                               (continued)



                                        Page 13                               GAO/HEHS-99-99 Supplemental Security Income
Chapter 1
Introduction




                                                                                           Percent of
Characteristic                                                                Number            total
Pennsylvania                                                                    40,340              4.6
Michigan                                                                        36,960              4.2
Louisiana                                                                       31,780              3.6
Other                                                                         430,190             48.6
Parents in household
No parentsc                                                                   118,650             13.4
One parent                                                                    537,000             60.7
Two parents                                                                   229,600             25.9
                                                       d
Monthly household income not including SSI
Zero                                                                          225,220             29.4
Less than $200                                                                140,530             18.3
$200-$399                                                                       36,980              4.8
$400-$599                                                                       44,190              5.8
$600-$999                                                                       84,740            11.1
$1,000 or more                                                                234,940             30.6

a
 Numbers are based on the children for whom a diagnostic code is available in SSA’s
Supplemental Security Record file.
b
Includes conditions for which a diagnosis has been established but is not included in SSA’s
medical listing of impairments.
c
 Children with no parents in the household reside independently, with other relatives or
nonrelatives, or in institutions or foster care.
d
 Includes monthly income of households headed by single adults and couples. No parental
income information exists for the 118,650 children with no parents.

Sources: SSA, Children Receiving SSI (Baltimore, Md.: Office of Research, Evaluation, and
Statistics, Dec. 1998), http://www.ssa.gov/statistics/ores_home.html (cited Feb. 17, 1999).
Numbers projected from a 10-percent sample of children who were younger than 18 and
receiving SSI benefits were drawn by SSA from its Supplemental Security Record file, Dec. 1998.



In recent years, SSI has been the focus of much congressional concern and
media attention in light of unprecedented growth in the number of
children receiving SSI disability benefits. From the end of 1989 through
1996, the number of children younger than 18 receiving SSI disability
benefits more than tripled, from 265,000 to 955,000, and benefit payments
increased from $1.2 billion to about $5.2 billion.12 Congressional concerns
also focused on media reports of allegations that some parents were

12
  See the following reports for our analyses of factors that contributed to rapid program growth during
this period: Social Security: Rapid Rise in Children on SSI Disability Rolls Follows New Regulations
(GAO/HEHS-94-225, Sept. 9, 1994), and Social Security: New Functional Assessments for Children
Raise Eligibility Questions (GAO/HEHS-95-66, Mar. 10, 1995).



Page 14                                          GAO/HEHS-99-99 Supplemental Security Income
                       Chapter 1
                       Introduction




                       coaching their children to feign disabilities in order to receive SSI benefits.13

                       Concerned with this rapid growth and allegations of program abuse, the
                       Congress tightened SSI program eligibility through the Personal
                       Responsibility and Work Opportunity Reconciliation Act, enacted in
                       August 1996. The Congress did this to help ensure that only needy children
                       with severe disabilities receive benefits. Moreover, the allegations of
                       coaching raised questions about the effectiveness of using cash benefits to
                       serve children who have disabilities and limited income and resources.
                       Therefore, an early version of the welfare reform bill passed by the House
                       proposed substituting medical and nonmedical services for cash benefits
                       for children on SSI. Proponents of this proposal contended that a cash
                       benefit encourages families to keep their children disabled in order to
                       retain the benefit and that providing services is a better way to help them.
                       But opponents responded that the cost of rearing children with disabilities
                       is higher than the cost of rearing children without disabilities. They
                       indicated that without the SSI cash benefit, family income would be
                       inadequate to cover the higher costs of providing disability-related
                       clothing, food supplements, child care, and transportation, among other
                       services.14 The welfare reform law that the Congress ultimately enacted
                       left the SSI program’s cash benefit structure unchanged.15


                       While SSI is designed as a cash assistance program, children on SSI may be
Other Major Programs   eligible to receive a range of disability-related services—including
Provide                medications, durable medical equipment, nursing services, therapies,
Disability-Related     educational services, and child care—from an array of other programs.
                       Some of these programs were in operation before SSI was established and
Services               others began afterward. The programs that target services to children with
                       disabilities and make the largest federal expenditures on children with
                       disabilities are Medicaid’s Early and Periodic Screening, Diagnostic, and
                       Treatment (EPSDT) and Home and Community-Based Waivers; Special
                       Education and Early Intervention under the Individuals With Disabilities

                       13
                        See GAO/HEHS-95-66, which states that studies we reviewed found little evidence that coaching is
                       widespread. These studies, however, relied solely on documentation in case files and, therefore,
                       cannot rule out coaching. In addition, see SSA Initiatives to Identify Coaching (GAO/HEHS-96-96R,
                       Mar. 5, 1996), in which we report on two SSA initiatives to identify and process reports of parents
                       coaching their children in order to qualify for SSI. Both initiatives identified few cases of suspected
                       coaching, and very few of the children involved received SSI benefits.
                       14
                         We define various disability-related services in appendix I.
                       15
                         However, the welfare reform law did restrict the use of certain past due SSI payments benefiting
                       children younger than 18—for example, retroactive payments for the period between application for
                       benefits and determination of eligibility. The law requires that a child’s representative payee deposit
                       the payments in a dedicated account and limits the use of the payments to certain purposes such as
                       job skills training or disability-related personal needs assistance or housing modifications or any other
                       service or item the Commissioner of SSA considers appropriate, provided it benefits the child.
                       Page 15                                            GAO/HEHS-99-99 Supplemental Security Income
                                                 Chapter 1
                                                 Introduction




                                                 Education Act (IDEA); and Children With Special Health Care Needs under
                                                 title V of the Social Security Act.16

                                                 Table 1.2 provides an overview of these programs as well as the primarily
                                                 state-funded family support programs and describes their purpose, target
                                                 population, financing and administration, and main service or benefit and
                                                 the extent of program participation and expenditures on children. For
                                                 example, title V, established in 1935 as part of the original Social Security
                                                 Act, includes provisions that focus on serving children with special health
                                                 care needs as part of the title’s overall purpose of ensuring quality health
                                                 care for mothers and children with low income or for whom the
                                                 availability of health services is limited. Children younger than 16 on SSI
                                                 are to be referred for rehabilitation services to the state title V program.


Table 1.2: Major Public Programs Serving Children With Disabilities
                                                                                                                               Participation and
Program (and                                                               Financing and                                       expenditures on
authority)                  Purpose               Target population        administration            Service or benefit        children
Children With Special       To provide and         State-determined        A state block grant       Specialty and             907,000 children
Health Care Needs           promote                                        program, funded           subspecialty health       with special health
(title V, Social Security   family-centered,                               federally and with a      care and services         care needs (FY
Act)                        community-based                                state match;              unavailable in most       1995); federal
                            care, including care                           Department of             communities;              allocation of $545.8
                            coordination, and to                           Health and Human          services that             million; estimated
                            aid in developing                              Services’ (HHS)           facilitate access to      $1.3 billion in state
                            community-based                                Maternal and Child        health                    funding for children
                            systems of care; to                            Health Bureau             services—such as          with special health
                            provide rehabilitation                         coordinates               transportation and        care needs, among
                            services to children                           activities at the         care coordination         others (FY 1997).
                            younger than 16 on                             federal level and         with other programs.
                            SSI.a                                          shares information
                                                                           and technical
                                                                           assistance with the
                                                                           states; administered
                                                                           by states.
                                                                                                                                          (continued)




                                                 16
                                                   Although Medicaid serves children and adults without disabilities as well, children on SSI are
                                                 automatically eligible for Medicaid in most states. The Medicaid law refers to EPSDT as a set of items
                                                 and services within the Medicaid program. However, common usage refers to EPSDT as a program. In
                                                 this report, we refer to EPSDT as a program within Medicaid.



                                                 Page 16                                          GAO/HEHS-99-99 Supplemental Security Income
                                              Chapter 1
                                              Introduction




                                                                                                                    Participation and
Program (and                                                        Financing and                                   expenditures on
authority)            Purpose                 Target population     administration          Service or benefit      children
Medicaid              To pay for medically    Low-income children   Jointly funded by       Federal law requires    15.3 million children;
(title XIX, Social    necessary health        and women,            federal and state       the states to offer     $15.7 billion in
Security Act)         care services.          low-income persons    governments;            certain services,       federal and state
                                              who are blind or      federal oversight by    including hospital,     expenditures (FY
                                              disabled, and         HHS’s Health Care       physician, and nurse    1997).
                                              low-income elderly    Financing               practitioners’
                                              persons.              Administration          services; the states
                                                                    (HCFA);                 can offer other
                                                                    administered by         benefits such as
                                                                    state Medicaid          occupational
                                                                    programs.               therapy and dental
                                                                                            services.
Medicaid’s EPSDT      To identify and treat Children younger        Same as above.          Age-appropriate         6.4 million children;
(title XIX, Social    children’s health     than 21 on                                      screenings and          $1.6 billion in federal
Security Act)         problems before       Medicaid.                                       immunizations,          and state
                      they become                                                           follow-up diagnostic    expenditures (FY
                      complex or disabling                                                  services, and           1997).
                      and require more                                                      medically necessary
                      costly treatment.                                                     treatment services.
Medicaid’s Home and   To offer                State-determined.     Same as above.          Range of social and     7,568 children;
Community-Based       community-based                                                       supportive services.    $252.4 million in
Services Waiver       long-term care                                                                                federal and state
(title XIX, Social    services in order to                                                                          expenditures
Security Act)b        avoid                                                                                         (calendar year 1997).
                      institutionalization.
Early Intervention    To enhance              Children from birth   Jointly funded by       Among the services      187,348 children;
(part C, IDEA)        development and         to 3 years who        federal, state, and     offered are             federal allocation of
                      minimize and            manifest              local governments.      diagnostic              $309 million;
                      perhaps preclude        developmental         Federal Department      evaluations, special    estimated $3.6
                      later need for          delays or have a      of Education            instruction,            billion in state and
                      special education       state-defined         develops guiding        therapies,              local expenditures
                      services or             condition likely to   rules and               psychological           (FY 1997).c
                      institutionalization.   cause a delay.        regulations, provides   services, social work
                                                                    technical assistance    services, care
                                                                    to the states, and      coordination, and
                                                                    monitors them.          transportation.
                                                                    Administered by
                                                                    states.
                                                                                                                              (continued)




                                              Page 17                                  GAO/HEHS-99-99 Supplemental Security Income
                                              Chapter 1
                                              Introduction




                                                                                                                                 Participation and
Program (and                                                              Financing and                                          expenditures on
authority)             Purpose                Target population           administration             Service or benefit          children
Special Education      To ensure that all     Children from 3             Same as above.             Identification and          5.8 million children;
(part B, IDEA)         children with          through 21; broad                                      assessment of               federal appropriation
                       disabilities have      federal guidelines                                     disabling conditions;       of $3.1 billion;
                       available to them a    for categorical                                        specially designed          estimated $38.9
                       free and appropriate   disability criteria                                    instruction; and            billion in state and
                       public education       (specific                                              transportation and          local expenditures
                       through special        assessment tools                                       developmental,              (FY 1997).c
                       education and          are determined                                         corrective, and other
                       related services       locally).d                                             supportive services
                       designed to meet                                                              (e.g., psychological
                       their unique needs.                                                           services, therapies,
                                                                                                     audiology, and
                                                                                                     mobility services)
                                                                                                     needed to help a
                                                                                                     child benefit from
                                                                                                     special education.
State family support   To support families    State-determined.           Primarily                  A range of services,        281,000 families of
programs               in their efforts to                                state-funded;              including respite           children and adults
                       raise their children                               typically                  care, home and              with disabilities;
                       with disabilities in                               administered               vehicle                     $525 million in
                       the family home.                                   through a state’s          modifications,              expenditures on
                                                                          developmental              equipment,                  both adults and
                                                                          disabilities authority.    therapies, care             children (FY 1996).e
                                                                                                     coordination, and
                                                                                                     cash subsidies.



                                              a
                                               It is up to the states to define “rehabilitation services,” and their definitions vary substantially. The
                                              states are not required to provide a specific amount of funds for children younger than 16 on SSI
                                              when Medicaid is unable to provide assistance. Theoretically, a state could determine that no
                                              money is a reasonable amount, according to Maternal and Child Health Bureau legal opinions.
                                              b
                                               Currently the more than 200 waiver programs serve more than 250,000 people of all ages.
                                              Federal regulations permit waiver programs to serve the elderly and people with disabilities,
                                              including people with physical disabilities, developmental disabilities, mental retardation, or
                                              mental illness. Data are unavailable on the number of children served across all waivers.
                                              However, the most recently available data show that 36 waivers are targeted exclusively to
                                              children. Information in the table on participation is limited to 26 of these 36 waiver programs and
                                              on expenditures to 23, because data are unavailable for the remaining waivers.
                                              c
                                               Little information is available on state and local expenditures on Early Intervention and Special
                                              Education services. An estimate prepared by the Urban Institute in 1996 indicates that the federal
                                              portion of Early Intervention and Special Education expenditures is about 8 percent. We used this
                                              figure to estimate state and local expenditure amounts. (See Laudan Y. Aron, Pamela J. Loprest,
                                              and C. Eugene Steuerle, Serving Children With Disabilities: A Systematic Look at the Programs
                                              (Washington, D.C.: The Urban Institute Press, 1996).
                                              d
                                               Children aged 3 through 5 and 18 through 21 are eligible for special education if allowed under
                                              state law.




                                              Page 18                                             GAO/HEHS-99-99 Supplemental Security Income
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Introduction




e
 David Braddock and others, The State of the States in Developmental Disabilities, 5th ed.
(Washington, D.C.: American Association on Mental Retardation, 1998), pp. 41-42. In gathering
data, the researchers defined “family support” as any community-based service administered or
financed by the state mental retardation and developmental disability agency that provided for
vouchers, direct cash payments to families, reimbursement, or direct payments to service
providers that the state agency itself identified as family support.


Medicaid, established in 1965, pays for health services for low-income
children and adults with disabilities, among others. Children on SSI are
generally eligible for Medicaid coverage.17 In 1967, the Congress
established the EPSDT benefit to ensure that children eligible for Medicaid
receive representative and comprehensive health services. These benefits
are more comprehensive than benefits included in a state’s Medicaid plan
(within federal guidelines, each state defines its own benefit package).
Medicaid also operates the Home and Community-Based Services Waiver
Program.18 The program gives states, through a waiver, the option to offer
services that go beyond the health and health-related benefits that have
been the principal focus of Medicaid, including a wide range of social and
supportive services.

In addition, IDEA, which dates from 1975, is the main federal legislation
supporting the educational rights of children with disabilities.19 Under
IDEA’s Early Intervention Program, infants and toddlers younger than 3
who have a substantial developmental delay (or who are at risk of delay)
are entitled to receive services to maximize their development. About
12 percent of the children on SSI who are younger than 3 receive Early




17
  The states may link eligibility for Medicaid with SSI in one of three ways. First, the law allows
automatic Medicaid eligibility when a person becomes entitled to SSI. Thirty-two states and the
District of Columbia have elected this option. Second, states may impose Medicaid eligibility criteria
that are more restrictive than SSI criteria as long as the states do not choose criteria that are more
restrictive than those they were using for Medicaid on January 1, 1972 (before the implementation of
SSI). The 11 states that have chosen this option are known as “section 209(b)” states, after the section
of the Social Security Amendments of 1972 that established it. Third, in the remaining 7 states, SSI
recipients are eligible for Medicaid, but they must file a separate application with the state agency that
administers Medicaid. The Balanced Budget Act of 1997 created title XXI of the Social Security Act,
referred to as the Child Health Insurance Program, to expand health insurance for low-income children
previously ineligible for Medicaid. Children on SSI are generally not eligible for this program because
they are generally eligible for Medicaid.
18
 This program is also called the section 1915(c) waiver program, for the section of Medicaid law in
which it is authorized.
19
 In 1975, the Congress passed the Education for All Handicapped Children Act (P.L. 94-142), which
was later amended and renamed the Individuals With Disabilities Education Act.



Page 19                                           GAO/HEHS-99-99 Supplemental Security Income
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                     Introduction




                     Intervention services.20 IDEA’s Special Education Program makes available
                     to all children with disabilities who are 3 through 21 a free appropriate
                     public education—in the least restrictive environment possible—that
                     meets their unique needs regardless of the type or severity of disability.
                     About 60 percent of the children on SSI who are 3 or older receive Special
                     Education services.21

                     Finally, most states operate one or more family support programs. While
                     these primarily state-funded programs vary in the groups they target and
                     the services they offer, one of their main goals is to support families in
                     their efforts to raise their children with disabilities at home. Services they
                     offer include supportive services such as respite care, home and vehicle
                     modifications, physical and occupational therapies, adaptive equipment,
                     and recreation, as well as financial assistance and care coordination.


                     Acknowledging the substantial programs that assist children with
Objectives, Scope,   disabilities, the Senate report accompanying an early version of the
and Methodology      welfare reform bill stated that the children’s component of the SSI program
                     required further examination.22 Specifically, the report stated that the
                     issue of whether families of children on SSI incur expenses related to a
                     child’s disability needed to be addressed, as well as the effect of these
                     programs on the cash needs of families with disabled children. Indeed,
                     only one survey, conducted more than 20 years ago, has assessed families’
                     costs for disability-related services for children receiving SSI, although




                     20
                       Based on a sample of families with children on SSI who participated in the National Center for Health
                     Statistics’ 1994 and 1995 National Health Interview Survey, including the Disability Supplement and
                     Disability Followback Child’s Questionnaire. Participants were asked whether their children younger
                     than 3 had received any type of special education services for infants and very young children with
                     special needs during the past 12 months. The survey noted that for a child younger than 3, special
                     education is a program designed to meet the individual needs of infants and very young children who
                     have special needs. It may include services at home, at a hospital, or somewhere else.
                     21
                       Based on a sample of families with children on SSI who participated in the National Center for Health
                     Statistics’ 1994 and 1995 National Health Interview Survey, including the Disability Supplement and
                     Disability Followback Child’s Questionnaire. Participants were asked whether their children had
                     received any type of special education services or benefits for children with special needs paid for by
                     the public school system during the past 12 months. The survey noted that for children aged 3 or older,
                     special education is a program designed to meet the individual needs of children age 3 and older with
                     special needs. It may take place at a regular school, a special school, or a private school or at home or
                     a hospital.
                     22
                       S. Rep. No. 104-96 (1995).


                     Page 20                                           GAO/HEHS-99-99 Supplemental Security Income
Chapter 1
Introduction




numerous studies have addressed this issue indirectly.23 In the conference
report accompanying the welfare reform bill, the Congress stated that it
might address the issue of SSI benefits for children in the future. To help
inform any future deliberations on this issue, the Congress mandated in
the welfare reform law that we study and report on the disability-related
expenses that families of children on SSI incur that are not covered by
federal, state, and local programs serving children with disabilities.

To address this mandate, we (1) examined the disability-related costs that
families of children on SSI incur and the factors that influence the level of
such costs and (2) identified factors affecting families’ receipt of
disability-related services from programs.

To examine families’ disability-related costs and the factors affecting the
level of such costs, we analyzed responses by families with children
younger than 18 on SSI in two surveys.24 One was the National Center for
Health Statistics’ 1994 and 1995 National Health Interview Survey (NHIS),
including the Disability Supplement and Disability Followback Child’s
Questionnaire. The other was the University of Florida’s Institute for Child
Health Policy 1996 survey of Florida children with special health care
needs.25 The data from both surveys have some limitations. For example,
because the NHIS did not ascertain information on SSI receipt for


23
  Many studies that have addressed costs for disability-related services concentrated on populations
other than children receiving SSI benefits, such as Medicaid beneficiaries or people with particular
impairment types. Studies have also assessed total disability-related costs, regardless of who pays for
the services. Studies that focused on children receiving SSI covered issues other than disability-related
costs, such as access to health care and items families purchase with the SSI benefit. The one survey
that identified disability-related costs for children on SSI was conducted in 1978. (See Urban Systems
Research and Engineering, Inc., Survey of Blind and Disabled Children Receiving Supplemental
Security Benefits, SSA publication 13-11728, prepared by Marilyn Rymer and others (Baltimore, Md.:
SSA, Jan. 1980).) The survey data were later analyzed by Social and Scientific Systems, Inc., and
Mathematica Policy Research, Inc. (See Myles Maxfield, Jr., and Allen Kendall, Disabled Children in
the Supplemental Security Income Program (Washington, D.C.: SSA, Division of Supplemental Security
Studies, June 30, 1981).)
24
  Disability-related costs occur when families pay for disability-related services or items, either entirely
or in part, with their own family income. Their income may come from a number of sources, including
a child’s SSI cash benefit. Consistent with the definitions used by the two surveys, families’
disability-related costs do not include expenditures reimbursed by an insurance company or other
source. We define “disability-related services” as the services or items that are attributable to a child’s
disability. These services include, for example, a ramp to the home of a child in a wheelchair, mobility
equipment for a child with cerebral palsy, or specialty medical services for a child with severe asthma.
25
  The Florida survey was developed as part of a study that examined children receiving Medicaid as
well as those enrolled in managed care organizations. See E.A. Shenkman and B.V. Vogel, Managed
Care: Implications for Families’ Out-of-Pocket Expenses When Caring for Children With Special Health
Care Needs (Gainesville, Fla.: University of Florida, Institute for Child Health Policy, May 1998). Grant
95A5PE273A, funded by HHS Assistant Secretary of Planning and Evaluation. Both the NHIS and the
Florida survey were conducted before the tightening of SSI eligibility requirements by the welfare
reform law in August 1996.



Page 21                                            GAO/HEHS-99-99 Supplemental Security Income
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Introduction




12.5 percent of the children who were younger than 18 and included in the
1994 and 1995 surveys, the children receiving SSI included in the NHIS may
not be representative of SSI children nationwide. Moreover, because the
Florida survey consists of data from a random sample of Florida children
receiving Medicaid, the SSI children in the Florida survey may not be
representative of all SSI children in Florida. In addition, data in both
surveys were self-reported and some respondents may not have been able
to recall with precision the amount they spent on a particular service over
a year. Moreover, some respondents may not have known which entity or
entities paid for a service.

For both surveys, adults in families provided responses about their
children’s receipt of a set of disability-related services. We analyzed data
on 450 children from the NHIS and 208 children from the Florida survey.26
Because the set of services in the NHIS did not include several
disability-related services that a family might need to purchase, or did not
ask about the costs associated with some services, we did not use the NHIS
data to estimate total family costs. Because the Florida survey is more
comprehensive than the NHIS in the scope of disability-related services
covered by survey questions, we used the Florida survey data to estimate
family costs. The Florida survey asked each family how much it paid for
individual services that the child with the greatest health care needs
received during the past year. Total family disability-related costs were
calculated by summing the individual service costs reported for the child.
Findings from the Florida data may not be representative of children
receiving SSI nationwide. Nevertheless, the age ranges and gender
composition of the SSI children in the Florida survey were generally similar
to those of the population of children on SSI nationwide. Moreover, more
than half of the children in both groups lived in single-parent families. And,
although the prevalence of some impairment types varied significantly
among the two groups, they generally had a similar range of impairment
types.

To provide a perspective on the magnitude of families’ disability-related
costs, we compared the annual total costs of Florida survey participants
with the maximum SSI payments a family could receive for a child for a
year. Although SSI payments may be used for any type of expenditure
benefiting the child, this analysis provides a basis for comparing costs
across families. We used the maximum allowable benefit amount because

26
 The group of 450 children from the NHIS was composed of children whom family members identified
as receiving SSI and whose family members responded to the 1994 or 1995 Disability Followback
Child’s Questionnaire. For these 450 children, we analyzed responses to questions contained in the
Disability Followback, the Disability Supplement, and other parts of the survey.



Page 22                                        GAO/HEHS-99-99 Supplemental Security Income
Chapter 1
Introduction




the Florida survey did not contain information on the exact amount of a
family’s SSI payment. Although 32 percent of SSI children nationwide
received less than the maximum benefit at the end of 1996, the families
who do not receive the maximum benefit usually have sources of income
in addition to their children’s SSI payments. As a result, these families’ total
income usually equals or exceeds the level of maximum allowable
payments. At the time of the Florida survey in 1996, the annual maximum
allowable SSI payment for one child was $5,640.27

To identify factors affecting families’ receipt of disability-related services
from programs, we focused our review on programs that target and have
the largest federal expenditures for children with disabilities.28 These
programs are Medicaid’s EPSDT and waiver programs, IDEA’s Special
Education and Early Intervention programs, and the title V program. In our
analysis of these and other federal, state, and local programs, we reviewed
research studies and interviewed program officials, experts, and advocacy
groups on disabled children’s access to program services. Also, we made
site visits to Mississippi, New Hampshire, and Texas to interview families
and case managers of children receiving SSI, representatives of community
organizations, and state and county program officials.29 We used a list of
38 disability-related services that we derived from the NHIS and Florida
survey to help collect and analyze information gathered during our site
visits (appendix I lists and defines the 38 services). We performed a
content analysis of the site visit data to identify factors that affect families’
receipt of disability-related services from programs. To meet our
evidentiary threshold to be considered a “factor,” an issue had to be raised
by two or more types of groups interviewed during site visits (for example,
program officials, case managers, families, representatives of community
organizations) in two or more states. We did not identify the extent to


27
 We also compared total annual costs for Florida families with the mean annual SSI payment for
children in Florida in 1996. The mean annual SSI payment for children in Florida amounted to $5,181
as of December 1996.
28
  In this report, “program” refers to public and private programs, organizations, and agencies that
provide services and items for free, on a sliding fee scale, or for a copayment or deductible that
benefit, among others, children with disabilities. Programs include, for example, federal, state, and
local agencies, nonprofit community service organizations, and for-profit private companies
conducting charity work. An example of a for-profit private company conducting charity work is a
utility company discounting the utility bill for a family with low income whose child with a disability
requires higher than normal electricity usage.
29
  We chose these states because the proportions of their state populations younger than 18 that receive
SSI benefits were high (Mississippi), medium (Texas), and low (New Hampshire). Within each state,
we chose one county with a large general population and some type of community organization
focused on childhood disability with whose representatives we could work to arrange group
interviews. Service providers (for example, community mental health center staff) sometimes attended
our meetings with representatives of community organizations.



Page 23                                           GAO/HEHS-99-99 Supplemental Security Income
Chapter 1
Introduction




which any of the factors affect access to program services for children on
SSI.


We did our work between November 1997 and April 1999. We did not
verify the accuracy of the responses to either the NHIS or Florida survey,
but the administrators of both surveys used various procedures to ensure
the reliability of the survey data. We performed our work in accordance
with generally accepted government auditing standards.




Page 24                             GAO/HEHS-99-99 Supplemental Security Income
Chapter 2

Families Incur a Wide Range of
Disability-Related Costs

                      Families with children on SSI obtain a broad range of disability-related
                      services, some from programs and some by purchasing them themselves.
                      Data from the NHIS and Florida survey show that families purchased a
                      broad range of disability-related services such as specialized day care,
                      medical devices, and physical therapy.30 In addition, data from the Florida
                      survey show that the families’ costs for these services varied widely. While
                      the vast majority of the families in Florida incurred annual costs that were
                      less than the maximum allowable SSI payments for a year, a small
                      proportion of families incurred costs that greatly exceeded these
                      payments. However, expenditure data do not indicate whether a child’s
                      disability-related needs have been met or whether families might have
                      purchased additional services had they not faced constraints on their
                      income. Other survey data and findings show that a key reason some
                      families do not purchase services is that they cannot afford them, thus
                      affecting the level of disability-related costs they incur. In addition, a
                      family member’s employment status and whether families obtain services
                      from programs affect the level of their costs.


                      Data from the NHIS and Florida survey show that families with children on
Families Purchase a   SSI obtain a broad range of disability-related services. While families obtain
Broad Range of        many of these services from programs, families may also purchase
Services              services. For example, about 87 percent of the Florida families surveyed
                      reported that they purchased disability-related services for their SSI
                      children, such as special diet or formula, special or additional clothing, or
                      modifications to the home.31 Tables 2.1 and 2.2 show that—for many of the
                      services asked about in the NHIS and for almost every service asked about
                      in the Florida survey—some proportion of families reported that they had
                      incurred disability-related costs during the previous year. For example, at
                      least half of the families in the Florida survey who provided transportation
                      to or from service providers or obtained specialized day care,
                      home-related services, special diet or formula, medical supplies, special or
                      additional clothing, diapers (for use beyond the usual age), or assistive
                      technologies (for example, devices to assist speech) reported purchasing
                      these services over the past year.



                      30
                       Families may purchase disability-related services or items entirely, or they may pay for only a portion
                      of a service’s cost, the difference being paid for by other sources.
                      31
                        The remaining 13 percent of families did not report or did not incur any disability-related costs. The
                      87 percent figure may overstate the proportion of families reporting the purchase of disability-related
                      services to the extent that the purchase of doctor visits, hospital care, or a van or car was not related
                      to a child’s disability and a family purchased no other disability-related service.



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Table 2.1: Percentages of SSI Children
in the NHIS Who Received                                                                       Percent of SSI              Percent of
Disability-Related Services and Whose                                                            children who       service-receiving
Families Paid for Them Over the Past                                                                  received        children whose
Year                                                                                         disability-related      families paid for
                                         Service                                                     servicesa              servicesb
                                         Medical care and therapy
                                         Doctor visits for conditions lasting at least
                                                                                                                                       c
                                         12 months                                                        37.6
                                         Home visits by a doctor                                           0.4                        0
                                         Visiting nurse                                                    5.0                        0
                                         Social work services                                             14.5                      1.3
                                         Medications for conditions lasting at least
                                                                                                                                       c
                                         12 months                                                        28.5
                                                                 d
                                         Mental health services                                           18.3                      4.5
                                         Physical therapy                                                 17.7                      3.4
                                         Occupational therapy                                             12.2                      2.1
                                         Audiologist services                                              9.3                     10.2
                                         Recreational therapist services                                   4.1                      8.4
                                         Speech therapy                                                   27.7                        0
                                         Respiratory therapy                                               4.9                        0
                                                                                                                                       c
                                         Hospital visits for regular treatments                            7.8
                                         Personal care
                                         Respite or substitute caree                                       7.0                      9.1
                                         Personal attendant services                                       2.4                        0
                                                   f
                                         Helpers                                                          47.6                      5.0
                                         Transportation
                                         Transportation services                                          15.3                     12.3
                                                                                                                                       c
                                         Modify a van or car                                               1.0
                                         Education
                                         Reader or interpreter                                             1.6                        0
                                                                                                                                       c
                                         Special education                                                57.8
                                                                                                                                       c
                                         Physical education or recreation                                 17.5
                                         Home
                                                                                                                                       c
                                         Home modifications                                               22.9
                                         Equipment and supplies
                                         Assistive devices and technologiesg                              31.8                      7.5
                                                                                                                                       c
                                         Special diet                                                      8.4
                                         Other
                                         Services from a center for independent
                                         living                                                            1.8                     18.9

                                                                                                              (Table notes on next page)



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                                         a
                                          Percentages are based on 450 weighted cases from the National Center for Health Statistics’
                                         1994 and 1995 National Health Interview Survey, including the Disability Supplement and
                                         Disability Followback Child’s Questionnaire. Sampling errors at the 95-percent confidence level
                                         for the percentages of SSI children receiving services did not exceed plus or minus 6 percentage
                                         points.
                                         b
                                          We considered a family to have paid for a service if a parent or other family member in the
                                         household used his or her own income or the child’s SSI cash benefit, either entirely or in part.
                                         These percentages should be interpreted with caution given the small sample sizes upon which
                                         many were based.
                                         c
                                         Data are not available because questions about who paid for the service were not asked.
                                         d
                                          Includes services for mental health or substance abuse in inpatient or outpatient settings or
                                         mental health community support programs. Payment information was not collected for
                                         community support programs.
                                         e
                                         Payment information was collected only on paid employees of the family.
                                         f
                                          Includes services received during the past 2 weeks rather than the past 12 months and includes
                                         services provided by family members. Payment information was collected only for up to four
                                         helpers per family.
                                         g
                                          Includes medical devices and implants; payment information was collected only for medical
                                         devices.



Table 2.2: Percentages of SSI Children
in the Florida Survey Who Received                                                               Percent of SSI                  Percent of
Disability-Related Services and Whose                                                              children who           service-receiving
Families Paid for Them Over the Past                                                                    received            children whose
Year                                                                                           disability-related          families paid for
                                         Service                                                       servicesa                  servicesb
                                         Medical care, therapy, and insurance
                                         Doctor visits in a clinic or officec                                  85.6                          13.9
                                                        c
                                         Hospital care                                                         39.4                           6.3
                                         Skilled nursing services                                              17.3                           8.8
                                                                    d
                                         Medications for CSHCN                                                 77.4                          32.7
                                         Counseling services                                                   22.1                           6.5
                                                                                                                                                e
                                         Higher health insurance premiums                                       3.8
                                                                                                                                                e
                                         Additional health insurance                                            1.9
                                         Physical therapy                                                      40.4                           4.7
                                         Occupational therapy                                                  33.7                           2.9
                                         Speech therapy                                                        41.8                           1.2
                                         Respiratory therapy                                                   10.1                          15.0
                                         Personal care
                                         Respite or substitute care                                            22.1                          47.7
                                         Specialized day care                                                   2.9                          60.0
                                         Personal attendant services                                            9.1                          21.1
                                                                                                                                  (continued)




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                                                         Percent of SSI                  Percent of
                                                           children who           service-receiving
                                                                received            children whose
                                                       disability-related          families paid for
Service                                                        servicesa                  servicesb
Transportation
Transportation to and from CSHCN
providersd                                                            77.4                          92.4
Emergency transportation                                              13.5                          22.2
Purchase a van or car for CSHCNc,d                                    17.8                          92.3
Education
Educational services for CSHCNd                                       19.2                          30.0
Home
Extra charges on telephone bills                                      43.8                          98.9
Extra charges on electric or other utility
bills                                                                 29.8                      100.0
Home modifications                                                    13.0                          87.5
Equipment and supplies
Assistive technologies                                                15.9                          50.0
Home or durable medical equipment                                     34.6                          26.8
Special diet or formula                                               27.4                          52.7
Special or additional clothing                                        16.8                          94.4
Diapers beyond the usual age                                          36.1                          76.3
Medical supplies (e.g., bandages)                                     30.3                          67.2
Other
Other                                                                 13.9                          96.6

a
 Percentages are based on 208 cases in the University of Florida’s Institute for Child Health Policy
1996 survey of children with special health care needs. Sampling errors at the 95-percent
confidence level for the percentages of SSI children receiving services did not exceed plus or
minus 7 percentage points.
b
 We considered a family to have paid for a service if a parent or other family member in the
household used his or her own income or the child’s SSI cash benefit, either entirely or in part.
These percentages should be interpreted with caution given the small sample sizes upon which
many were based.
c
 Some responses may include amounts for the receipt of or payment for services that are not
specifically related to a child’s disability.
d
    CSHCN stands for children with special health care needs.
e
Data are not available because questions about who paid for the service were not asked.




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                       Data from the Florida survey show that the families who obtained
Families’ Costs Vary   disability-related services by purchasing them incurred a wide range of
Widely                 costs.32 These families reported total costs ranging from $10 to more than
                       $26,000 over the past year when all service expenditures are included,
                       even some that were not necessarily attributable to the child’s disability.
                       Three-fourths of these families reported total annual costs of less than
                       $3,000, half of the families reported total annual costs of $1,000 or less,
                       and one-quarter of the families reported costs of $350 or less over the past
                       year.

                       When services that are not necessarily attributable to a child’s disability
                       (that is, doctor visits in a clinic or office, hospital care, and the purchase of
                       a car or van) are excluded from the analysis, families reported total annual
                       expenditures ranging from $2 to $11,700.33 Three-fourths of these families
                       reported total annual costs of less than $1,782, half of the families reported
                       total annual costs of $840 or less, and one-quarter of the families reported
                       costs of $325 or less over the past year.

                       Although SSI payments may be used for any type of expenditure benefiting
                       the child, to provide a perspective on the magnitude of these costs, we
                       compared total annual costs with the maximum SSI payments a family
                       could receive for a child for a year.34 The Florida data show that of the
                       families who incurred disability-related costs, about 90 percent reported
                       total annual costs below the annual maximum allowable SSI payment.35
                       Moreover, about half of the families reported costs of less than 20 percent
                       of the maximum SSI payment. However, about 10 percent of the families
                       reported expenditures that exceeded the maximum SSI payment. Included
                       in these calculations are families’ reported costs for services that are not
                       necessarily attributable to a child’s disability. When these services are
                       excluded from the calculations, about 95 percent of the families reported



                       32
                        We did not calculate total families’ disability-related costs from NHIS data because the survey did not
                       ask respondents about a comprehensive range of services and what they spent for them, as did the
                       Florida survey.
                       33
                        Some or all expenditures for doctor visits in a clinic or office, hospital care, and the purchase of a car
                       or van may be attributable to a child’s disability. But because the data do not allow us to segregate the
                       costs of the services that are or are not attributable to a child’s disability, we present total annual costs
                       of Florida families in two ways: both including and excluding the costs of these services.
                       34
                         The monthly maximum SSI payment in 1996 was $470. This amount for the year was $5,640.
                       35
                         When we compared total annual costs for Florida families who incurred disability-related costs with
                       the mean annual SSI payments for children in Florida in 1996, we found that about 86 percent of these
                       families incurred total annual costs less than the mean SSI payments for the year. The mean annual SSI
                       payments for children in Florida amounted to $5,181 as of December 1996.



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annual disability-related costs below the annual maximum SSI payment.36
About 5 percent of the families, however, still reported disability-related
costs that exceeded the maximum SSI payment.

This pattern from the Florida data may not be representative of all SSI
families in the United States. However, this data pattern is consistent with
the nationwide pattern of disability-related expenditures presented in a
1981 study by Social and Scientific Systems, Inc., and Mathematica Policy
Research, Inc. That study, which was based upon a survey of a national
sample of SSI families, found that 5 percent of the families reported costs
exceeding their monthly SSI payment, while nearly 80 percent had an SSI
payment that exceeded their costs by more than $100 per month.37

Nevertheless, while it might seem from the data that the SSI payment
covers disability-related costs for most families in Florida, such data do
not indicate whether a child’s disability-related needs have been met.
Because expenditure data reflect only actual purchases, we are unable to
determine whether or the extent to which families with SSI children might
have purchased additional needed services, and thus incurred greater
costs, had their incomes been higher.38 For example, the data do not allow
us to determine the extent to which what was purchased reflects a
tradeoff between disability-related services and basic necessities such as
food, clothing, and shelter for the entire family. Because families can use
the monthly SSI payment for any type of purchase that benefits the
disabled child, some families may decide that they can use only a portion

36
  About 95 percent of the families who incurred costs also reported annual disability-related costs less
than the 1996 mean annual SSI payments for children in Florida.
37
  To examine the disability-related costs incurred by families with SSI children, researchers for Urban
Systems Research and Engineering, Inc., selected from SSA’s Supplemental Security Record a
stratified random sample of about 2,500 children receiving SSI as of December 1977, who were living
in the continental United States and were not living in institutions paid by Medicaid. The researchers
completed about 1,850 interviews, for a response rate of 74 percent. Social and Scientific Systems, Inc.,
and Mathematica Policy Research, Inc., analyzed these data as part of their own study on the costs
families said they incurred on a particular set of disability-related services. This set of services,
however, was not comprehensive, since it did not include such common disability-related services as
transportation and special diet and clothing. Because the survey did not ask families about a
comprehensive range of services, its results may understate disability-related costs. In addition,
29 percent of the families reported being unable to afford certain disability-related services for their
children. Specifically, 39 percent of the families reported that they needed additional health services,
and 25 percent reported that they needed additional special equipment. These findings might be
different if data were collected today, because advances in medicine and technology in the almost two
decades since this study have resulted in new treatments and services for children with disabilities.
See Urban Systems Research and Engineering, Survey of Blind and Disabled Children Receiving
Supplemental Security Benefits, and Maxfield and Kendall, Disabled Children in the Supplemental
Security Income Program.
38
 Data from the NHIS show that about 53 percent of the children on SSI live in a household with a
monthly income below the federal poverty level. Monthly income includes transfer payments such as
SSI. The data exclude the 12 percent of children in the sample for whom poverty status was unknown.



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                             of the SSI benefit for purchasing disability-related services and that the
                             remainder should go toward purchasing other necessities such as food,
                             clothing, or shelter.

                             In this regard, data from both surveys show some families reporting that
                             they do not obtain needed services for their children. About 38 percent of
                             the respondents in the Florida survey, and about 39 percent of the
                             respondents in the NHIS, reported that they needed but did not obtain one
                             or more services for their children. These survey data, however, likely do
                             not reflect the full extent to which families needed but did not obtain
                             services. The surveys generally asked families about services needed but
                             not obtained at all but rarely asked about the need for additional services
                             that families had already obtained but in insufficient quantity.


                             A variety of factors, aside from the particular service needs of a child,
Multiple Factors             influence families’ purchase of services and, hence, their level of
Affect Families’ Level       disability-related costs. A key reason that some families do not purchase
of Costs                     needed services is that they cannot afford them. Another factor is a family
                             member’s decision about employment, which affects not only a family’s
                             income, and thus its ability to purchase services, but also its need to
                             purchase certain types of disability-related services. Finally, whether or
                             not families are able to obtain services from programs also influences the
                             level of their costs.


Service Affordability        A key reason why some families do not purchase services that they do not
Affects the Purchase of      obtain from programs is that they cannot afford them. In the Florida
Services                     survey, about 60 percent of families there who were unable to obtain one
                             or more needed services for their children reported that they did not
                             obtain them because they were too expensive. Similarly, 31 percent of the
                             NHIS respondents who were unable to obtain needed services stated that
                             they did not obtain them because they were too expensive. In addition,
                             families and case managers we interviewed during our site visits
                             mentioned service expense as a key issue in families’ being able to
                             purchase needed services.


Employment Decisions         Family employment decisions can influence the level of disability-related
Can Affect the Purchase of   costs. A family member’s decision to work or stay at home to care for a
Services                     child with a disability affects not only the family’s income, and thus its
                             ability to purchase services, but also its need to purchase certain types of



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services, such as specialized day care or certain types of physical or
occupational therapy, that the family member at home may now be able to
provide. Labor market participation studies suggest that, in making a
decision about employment, a family member compares his or her
potential wage with the availability, cost, and quality of child care and
other services provided by the market and with the cost and quality of care
and services that other family members, friends, or other community
sources provide.39 The family member also weighs the public benefits,
such as SSI and Medicaid, that could be obtained. For example, the child’s
SSI benefits provide some offset to earnings lost by staying at home, and
other assistance programs, such as Medicaid, may cover a child’s needed
services at little or no cost to the family. Such assistance could make the
family better off economically than it would be if the family member
worked for low wages.

In families with children, a family member whose wage earning potential is
relatively low is less likely to be employed than a family member whose
earnings potential is high. Moreover, the tendency for a lower-wage earner
to choose to remain at home is likely to be greater in families with
disabled children whose care needs may be greater or more expensive or
who may be more difficult to place in market-based child care
arrangements. For example, a parent with a disabled child may choose to
quit work, reduce the number of hours he or she works, or make other
work-related changes in order to care for the child at home if
market-based child care, including specialized care related to the child’s
disability, is too expensive or not available.

In the NHIS and Florida survey, many families reported that caring for a
child’s special health care needs reduced family employment. Almost
one-third of the respondents in the NHIS said their children’s health was a
reason that someone in the family had not taken a job in order to care for
a child. Moreover, about one-fifth of the NHIS respondents indicated that
someone in their family had quit working or worked fewer hours because
of a child’s health. Similarly, nearly 40 percent of the families participating
in the Florida survey reported that caring for their children’s special needs
caused someone in the family to not work, 33 percent reported turning
down a job, and 20 percent reported working less.




39
 See, for example, Child Care: Child Care Subsidies Increase Likelihood That Low-Income Mothers
Will Work (GAO/HEHS-95-20, Dec. 30, 1994), p. 3, and Rachel Connelly, “The Effect of Child Care Costs
on Married Women’s Labor Force Participation,” Review of Economics and Statistics, Vol. 74, No. 1
(Feb. 1992), pp. 83-90.



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                          Case managers, community organization representatives, and families we
                          interviewed during our site visits described two key factors that
                          contributed to some family members’ working less or quitting work to care
                          for their children. First, a shortage of some services, particularly
                          specialized day care, causes some family members to forgo paid work in
                          order to care for the children themselves. Second, the care-giving demands
                          on some family members—for example, the need to take a child to
                          multiple medical appointments or to make unanticipated visits to the
                          child’s school or day care center during normal work hours—lessens the
                          feasibility of work.

                          A decision to not work or to reduce working hours can affect both the
                          ability to purchase services, through the resulting loss in earnings, and the
                          need to purchase some types of services. Survey data show that the
                          presence of a child with special needs in a family can reduce family
                          income. About 40 percent of the Florida survey respondents reported that
                          family income decreased after the birth of a special-needs child. Of the
                          families whose income decreased, 50 percent reported a decrease of $600
                          or more a month and half of these reported a decrease of $1,400 or more.
                          Three-quarters of the families with a decrease in income reported that the
                          decrease continued for more than 12 months. In addition, about 15 percent
                          of the NHIS respondents reported having severe financial problems during
                          the past year because of a child’s health. Moreover, although the total
                          extent of caregiving is not known from the survey data, 46 percent of the
                          families in the Florida survey reported that someone in the household
                          provided therapies or other health-related care for their children. In
                          families in which a member has chosen to not work and to provide
                          services, such as certain types of specialized day care, family expenditures
                          for these services are lower than if the family had purchased them.


Whether or Not Families   Whether or not families are able to obtain services through programs also
Obtain Services Through   affects the disability-related expenses they incur. Tables 2.3 and 2.4 show
Programs Affects Their    that public programs were widely cited as a source of full or partial
                          funding for many of the services that families obtained for their SSI
Costs                     children. For almost every disability-related service included in the NHIS
                          and Florida survey, some proportion of families with SSI children reported
                          public programs as sources of payment for services obtained during the
                          previous year. For example, more than half of the respondents in the NHIS
                          who obtained social work services, the services of a visiting nurse,
                          physical therapist services, audiologist services, mental health services,
                          respiratory therapy services, or personal attendant services for their



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                                             children reported Medicaid as a source of payment. Also, more than half of
                                             the families in the Florida survey who obtained counseling services,
                                             skilled nursing services, medications for a child’s special health care
                                             needs, respiratory therapy, home or durable medical equipment,
                                             emergency transportation, doctor visits in a clinic or office, or hospital
                                             care for their children reported Medicaid as a source of payment.40


Table 2.3: Percentages of SSI Children in the NHIS Who Received Disability-Related Services and the Public and Private
Sources That Paid for Them Over the Past Year
                                   Percent of SSI Percent of service-receiving children who received services from public or
                                    children who                               private sourcesb
                                           received                                                            Other           Private          Other
                                  disability-related                     Rehabilitation         School        public            health         private
Service                                   servicesa      Medicaid            program            system       sourcec        insurance         sourced
Medical care and therapy
Doctor visits for conditions
                                                                  e                        e             e             e                 e             e
lasting at least 12 months                        37.6
Home visits by a doctor                            0.4          0                   100.0              0        100.0                  0               0
Hospital visits for regular
                                                                  e                        e             e             e                 e             e
treatments                                         7.8
Visiting nurse                                     5.0       87.4                      3.1           3.1          12.6               3.8               0
Social work services                              14.5       57.6                      8.2          12.3          28.2               3.6           3.5
Medications for conditions
                                                                  e                        e             e             e                 e             e
lasting at least 12 months                        28.5
                        f
Mental health services                            18.3       64.0                      1.0           6.2           8.2               6.8               0
Physical therapy                                  17.7       52.6                      3.6          44.8           8.8               3.4           5.1
Occupational therapy                              12.2       37.2                      2.7          59.9           6.7               3.6           1.7
Audiologist services                               9.3       69.3                      5.4          34.8           3.6             13.4                0
Recreational therapist services                    4.1       18.8                    17.8           56.2          17.3               8.4           4.9
Speech therapy                                    27.7       27.4                      0.9          72.8           3.8               0.7           0.6
Respiratory therapy                                4.9       92.2                        0             0          23.3               3.9               0
Personal care
                                                                  e                        e             e
Respite or substitute care                         7.0                                                             8.3g                  e
                                                                                                                                                  42.1h
Personal attendant services                        2.4       71.9                    10.9            9.3          27.6                 0          18.4
Helpersi                                          47.6        3.2                      2.4           4.3           3.5                 0           0.6
Transportation
Transportation services                           15.3       20.8                      7.7          52.8          13.2                 0               0
                                                                  e                        e             e             e                 e             e
Modify a car or van                                1.0
                                                                                                                                           (continued)

                                             40
                                              The questions relating to hospital care and doctor visits in a clinic or office were phrased in such a
                                             manner that one cannot determine the extent to which those services were related to the child’s
                                             special health care needs.



                                             Page 34                                            GAO/HEHS-99-99 Supplemental Security Income
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                                Percent of SSI     Percent of service-receiving children who received services from public or
                                 children who                                   private sourcesb
                                      received                                                          Other           Private        Other
                             disability-related                    Rehabilitation        School        public            health       private
Service                              servicesa     Medicaid            program           system       sourcec        insurance       sourced
Education
                                                            e                       e             e             e                e          e
Special education                           57.8
Reader or interpreter                        1.6       17.6                    10.9          56.2             0                 0          0
Physical education or
                                                            e                       e             e             e                e          e
recreation                                  17.5
Home
                                                            e                       e             e             e                e          e
Home modifications                          22.9
Equipment and supplies
Assistive devices and
                                                            e                       e             e             e                e          e
technologies                                31.8
                                                            e                       e             e             e                e          e
Special diet                                 8.4
Other
Services from a center for
independent living                           1.8       21.4                      9.2          5.9          59.6             18.9           0



                                        a
                                         Percentages are based on 450 weighted cases from the National Center for Health Statistics’
                                        1994 and 1995 National Health Interview Survey, including the Disability Supplement and
                                        Disability Followback Child’s Questionnaire. Sampling errors at the 95-percent confidence level
                                        for the percentages of SSI children receiving services did not exceed plus or minus 6 percentage
                                        points.
                                        b
                                        These percentages should be interpreted with caution given the small sample sizes upon which
                                        many were based.
                                        c
                                         Excludes the Department of Veterans Affairs (VA) and other military programs. For two services,
                                        less than 3 percent of those receiving the services reported VA or other military programs as
                                        sources of payment. For the remaining services, no respondent reported VA or other military
                                        programs as sources of payment.
                                        d
                                         Excludes family members not in the household and the parents’ employers. No respondent
                                        reported family members not in the household as a source of payment for any service. For three
                                        services, less than 4 percent of those receiving the services reported a parent’s employer as a
                                        source of payment. For the remaining services, no respondent reported a parent’s employer as a
                                        source of payment.
                                        e
                                         Data are not available because questions about who paid for the service were not asked.
                                        f
                                         Includes services for mental health or substance abuse in inpatient or outpatient settings or
                                        mental health community support programs. Payment information was not collected for
                                        community support programs.
                                        g
                                         Includes only responses to “any other source” of payment, which may include some private
                                        funding.




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                                             h
                                              Includes only responses to “a paid employee of an organization or business,” some of which may
                                             receive public funding.
                                             i
                                             Includes services received during the past 2 weeks rather than the past 12 months and includes
                                             services provided by family members. Payment information was collected only for up to four
                                             helpers per family.




Table 2.4: Percentages of SSI Children in the Florida Survey Who Received Disability-Related Services and the Public and
Private Sources That Paid for Them Over the Past Year
                          Percent of SSI Percent of service-receiving children who received   services from public or private
                           children who                                       sourcesb
                                 received                                                                 Other          Private         Other
                        disability-related                   Rehabilitation School                       public           health        private
Service                         servicesa    Medicaid            program system              Title V    sourcec       insurance        sourced
Medical care, therapy, and insurance
Doctor visits in a
clinic or officee                    85.6         76.7                      0         0        31.3           3.3            20.0             1.7
              e
Hospital care                        39.4         84.1                      0         0        33.8           2.5            25.0             3.8
Skilled nursing
services                             17.3         64.7                      0     12.1         23.5         12.1              9.1             3.0
Medications for
CSHCNf                               77.4         85.0                      0         0        17.0           1.9            13.8             1.3
Counseling services                  22.1         60.9                    4.3     26.1         10.9         10.9              8.7              0
Higher health
                                                       g                     g         g            g            g               g              g
insurance premiums                     3.8
Additional health
                                                       g                     g         g            g            g               g              g
insurance                              1.9
Physical therapy                     40.4         47.7                      0     48.9         21.2           9.4             8.2             1.2
Occupational therapy                 33.7         39.1                      0     64.8         13.0           8.6             4.3             1.4
Speech therapy                       41.8         25.6                      0     70.5           4.7          4.6             2.3              0
Respiratory therapy                  10.1         73.7                      0         0        15.8             0            15.8              0
Personal care
Respite or substitute
care                                 22.1         17.8                    2.2         0          8.9        34.8              2.2             2.2
Specialized day care                   2.9             0                    0         0        20.0         80.0                0              0
Personal attendant
services                               9.1        42.1                      0     21.1         10.5         25.0                0              0
Transportation
Transportation to and
from CSHCN
providersf                           77.4          8.3                    0.6         0          2.4          1.8             0.6              0
Emergency
transportation                       13.5         76.7                      0         0        17.2             0            26.7             3.4
Purchase a van or car
for CSHCNe,f                         17.8              0                    0         0            0          2.6               0             5.1
                                                                                                                                    (continued)


                                             Page 36                                        GAO/HEHS-99-99 Supplemental Security Income
                                                 Chapter 2
                                                 Families Incur a Wide Range of
                                                 Disability-Related Costs




                               Percent of SSI    Percent of service-receiving children who received services from public or private
                                children who                                          sourcesb
                                     received                                                                     Other          Private         Other
                            disability-related                      Rehabilitation School                        public           health        private
Service                             servicesa    Medicaid               program system              Title V     sourcec       insurance        sourced
Education
Educational services
for CSHCNf                               19.2             7.5                      0     56.1           2.5         12.5              2.5               0
Home
Extra charges on
telephone bills                          43.8             1.2                      0         0            0          2.4                0               0
Extra charges on
electric or other utility
bills                                    29.8             1.6                      0         0          1.6          1.6                0               0
Home modifications                       13.0               0                      0         0          8.3         20.0                0           4.2
Equipment and supplies
Assistive technologies                   15.9             3.1                    3.1     37.5           9.4          3.1              3.1           9.4
Home or durable
medical equipment                        34.6            52.8                      0         0         50.0          1.4             15.1           4.2
Special diet or formula                  27.4            28.1                      0         0         13.8         22.4              1.8               0
Special or additional
clothing                                 16.8             6.1                      0         0          6.1            0                0               0
Diapers beyond the
usual age                                36.1            11.7                      0         0          7.8         15.6              2.6           1.3
Medical supplies
(e.g., bandages)                         30.3            34.4                    1.6         0         26.2          1.6              8.1           1.6
Other
Other                                    13.9            10.7                      0       3.7          7.4            0              3.7               0

                                                 a
                                                  Percentages are based on 208 cases in the University of Florida’s Institute for Child Health Policy
                                                 1996 survey of children with special health care needs. Sampling errors at the 95-percent
                                                 confidence level for the percentages of SSI children receiving services did not exceed plus or
                                                 minus 7 percentage points.
                                                 b
                                                 These percentages should be interpreted with caution given the small sample sizes upon which
                                                 many were based.
                                                 c
                                                  Excludes VA and other military programs. For five services, no more than 3 percent of those
                                                 receiving the service reported VA or other military programs as sources of payment. For the
                                                 remaining services, no respondent reported VA or other military programs as sources of payment.
                                                 d
                                                  Excludes family members not in the household as a source of payment. For 11 services, less
                                                 than 5 percent of those receiving the services reported family members not in the household as a
                                                 source of payment. For the remaining services, no respondent reported family members not in the
                                                 household as a source of payment.
                                                 e
                                                  Some responses may include amounts for the receipt of or payment for services that are not
                                                 specifically related to a disability.
                                                 f
                                                 CSHCN stands for children with special health care needs.
                                                 g
                                                     Data are not available because questions about who paid for the service were not asked.



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Disability-Related Costs




In addition, more than half of the respondents in the NHIS who obtained
services such as occupational therapist services, services from a speech
therapist or pathologist, or recreational therapist services for their
children reported the school system as a source of payment. And more
than half of the families in the Florida survey who obtained occupational
therapy, speech therapy, or educational services related to special health
care needs (such as tutoring, books on tape, and sensory integration) for
their children reported the school system as a source of payment.

Data from both surveys also show that while some families obtained
services that were funded in whole or part by a program, other families
purchased the same types of services. For example, many families in both
surveys reported Medicaid as a source of payment for a number of
disability-related services, yet some families also reported purchasing
these same types of services. A variety of factors discussed in chapter 3
may affect a family’s ability to obtain services through programs.




Page 38                             GAO/HEHS-99-99 Supplemental Security Income
Chapter 3

Program, Service, and Family-Related
Factors Affect Families’ Receipt of Program
Services
                                         A variety of factors affect families’ receipt of services through programs.
                                         (See table 3.1.) First, SSI beneficiary status generally does not entitle a
                                         child to a program’s services. Because of certain aspects inherent to the
                                         design of a program—such as eligibility criteria, the number of available
                                         service slots, and whether it covers needed services—some SSI children
                                         may not receive services from particular programs. Second, because of
                                         difficulties in identifying who needs services and what services they need,
                                         programs may not be serving some children. Third, once children’s service
                                         needs are identified, their gaining access to some program services that
                                         are in short supply can be difficult. Overall, families play an important role
                                         in obtaining services for their children. Yet some families’ limited
                                         knowledge of program options and their rights to them, limited ability to
                                         proactively pursue services for their children, or lack of transportation or
                                         other supports hinders their ability to play this role, which may result in
                                         their not acquiring some services.

Table 3.1: Factors Affecting Families’
Receipt of Services From Programs        Factor                   Aspect
                                         Program design           Program eligibility criteria
                                                                  Number of available service slots
                                                                  Service coverage
                                         Identifying eligible     Challenges in making service decisions
                                         children and their       Insufficient understanding of childhood disability
                                         needs                    Screening for services less frequently than HHS recommends
                                         Gaining service          Provider shortages
                                         access                   Program officials’ concerns about service costs
                                                                  Limited help gaining access to program services
                                         Families’                Limited knowledge of program options and legal rights
                                         circumstances            Limited ability to proactively pursue services
                                                                  Lack of transportation and other supports facilitating access



                                         Some children, despite their SSI beneficiary status, do not receive services
Program Design May                       from programs because of certain aspects inherent to program design.41
Affect Whether                           An SSI child may not meet the eligibility criteria to qualify for a program.
Children Receive                         Even when a child qualifies, he or she still may not be admitted to the
                                         program because the service slots may be filled. Moreover, once a child
Services                                 has been admitted to a program, it may not cover a service that the child
                                         needs. Or if the service is covered, the child may not fulfill requirements to
                                         receive it.



                                         41
                                           We were unable to identify the extent to which any of these aspects of program design affect access
                                         to program services for children on SSI, because the programs in large part do not track program
                                         participation by whether a child is an SSI recipient.



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                               Program, Service, and Family-Related
                               Factors Affect Families’ Receipt of Program
                               Services




A Child May Not Meet           Even when children are SSI recipients, they may not meet the eligibility
Program Eligibility Criteria   criteria that a program uses to screen admissions. For example, in most
                               states, children on SSI automatically qualify for Medicaid. In 11 states,
                               however, children must meet more restrictive disability, income, and asset
                               standards than those required to qualify for SSI benefits. As a consequence,
                               some of the children on SSI in those 11 states may be ineligible for
                               Medicaid, although SSA and HCFA officials told us they do not know the size
                               of the ineligible population.

                               Children on SSI are also not automatically eligible for the Special
                               Education or Early Intervention programs. Regardless of whether children
                               receive SSI benefits, to qualify for Special Education, they must undergo a
                               separate assessment to determine whether they have one of several broad
                               qualifying disabilities—such as mental retardation—or, in some states,
                               experience a developmental delay.42 Any child assessed as having a
                               qualifying disability or delay must also demonstrate that special
                               educational services are needed in order to receive an appropriate
                               education. Eligibility for Early Intervention requires an infant or toddler to
                               be developmentally delayed as defined by the state or have a condition
                               likely to cause a delay.43 As a result, a child receiving SSI may not be found
                               eligible for these programs.

                               Further, children younger than 16 on SSI do not automatically qualify for
                               title V services, even though they are to be referred to the state title V
                               program for rehabilitation services. Rather, children on SSI must meet the
                               individual state title V program’s eligibility criteria. For example, in about
                               38 states, children on SSI—like all other applicants—must have at least one
                               of several specific conditions to be eligible for the title V program.44 But
                               among these states, some of the more prevalent impairment types among
                               the population of children on SSI do not qualify a child for title V services.
                               In fact, children with mental retardation or other mental impairments

                               42
                                 To qualify for Special Education, a child must generally be aged 3 through 21. Children aged 3
                               through 5 and 18 through 21 are eligible for special education if allowed under state law. Some states
                               and localities, at their discretion, also provide services to children 3 through 9 who are experiencing a
                               developmental delay.
                               43
                                 Eligibility for Early Intervention requires that a child be younger than 3 years old.
                               44
                                 To obtain these data, we performed an analysis of findings from a 1997 survey of state title V
                               programs conducted by the Institute for Child Health Policy at the University of Florida. The Institute
                               collected data on eligibility criteria and scope of services from 50 state title V programs and the
                               District of Columbia’s title V program. We confirmed our analysis of this survey with 44 state title V
                               programs and the District of Columbia’s program. Among the remaining six programs, three did not
                               reply to our request for confirmation, and we did not reanalyze data on three programs that generally
                               do not serve children on SSI. See Institute for Child Health Policy, University of Florida, Directory of
                               State Title V CSHCN Programs’ Eligibility Criteria and Scope of Services (Gainesville, Fla.: May 1997).



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                            Program, Service, and Family-Related
                            Factors Affect Families’ Receipt of Program
                            Services




                            (accounting for 64 percent of all children receiving SSI) do not qualify for
                            the program in 25 states.45


Some Children Are Not       A child who meets a program’s eligibility criteria might not be admitted to
Admitted to Programs        the program if the service slots are filled. In our site visits, programs
Because Service Slots Are   offering specialized day care, respite care, and summer recreation were
                            identified as having a limited number of slots. In contrast, other programs,
Limited                     such as EPSDT and Special Education, admit all entitled individuals.

                            Programs with a limited number of available slots use various approaches
                            to decide which qualifying children to select for admission. For example, a
                            1995 survey of 58 state family support programs by the Human Services
                            Research Institute found that they used one or more approaches to select
                            children: 16 percent selected all who applied, half made “first come, first
                            served” selections, 36 percent made selections on the basis of “need”
                            according to the program’s definition (for example, severity of a child’s
                            disability or family coping skills or stress level), and 10 percent used a
                            lottery.46

                            If the number of available slots is limited, children either may not be
                            admitted to a program or may be placed on a waiting list, which, if
                            sufficiently lengthy, may effectively mean some will not be admitted to the
                            program. About half of the family support programs in 1995 had a waiting
                            list, and one-quarter had a waiting list of 400 or more families. A Texas
                            family support program had a waiting list of nearly 10,200 in 1996. And
                            among the 13 percent of NHIS respondents who tried to obtain additional
                            Special Education services, nearly one-quarter said that their children had
                            been on a waiting list for one or more Special Education services during
                            the previous year.




                            45
                              A child with a mental impairment, such as mental retardation, can qualify for a title V program if he
                            or she has a secondary physical impairment that qualifies the child for the program. According to our
                            analysis of the Institute for Child Health Policy survey of state title V programs, some title V programs
                            use other types of eligibility criteria, as follows: the child’s condition results in impaired growth,
                            development, or limited functioning or other factors related to the severity of the condition (35
                            programs); nonintervention by the program may lead to a disabling condition or the child’s condition
                            may put him or her at risk for a disability or handicap (26 programs); the child’s condition requires a
                            particular treatment or is amenable to treatment (32 programs); the child’s condition lasts for a certain
                            period of time (28 programs); needed services are available (7 programs); the child’s condition affects
                            the family (6 programs).
                            46
                             John Agosta and Kerri Melda, Results of a National Survey of Family Support Programs for People
                            With Disabilities and Their Families (Salem, Ore.: Human Services Research Institute, 1995).



                            Page 41                                           GAO/HEHS-99-99 Supplemental Security Income
                         Chapter 3
                         Program, Service, and Family-Related
                         Factors Affect Families’ Receipt of Program
                         Services




Service Coverage Can     Once a child is admitted to a program, it may not cover all the
Affect Service Receipt   disability-related services that he or she needs. The largest federal and
                         state programs serving children with disabilities generally do not cover
                         home-related services (extra telephone and utility charges and home
                         modifications), certain supplies (diapers needed by a disabled child who is
                         beyond the usual age for using them and special diet or formula and
                         clothing), respite care, over-the-counter medications for disability-related
                         conditions, and expenses related to the purchase or modification of a
                         vehicle beyond what a family would normally spend. (See appendix II for a
                         summary of the services covered by the programs in our study.) For
                         example, EPSDT and Special Education typically do not cover any of these
                         services. Similarly, with the exception of respite care and special clothing,
                         Early Intervention does not cover these services. In addition, the Medicaid
                         Home and Community-Based Waivers and title V programs allow the states
                         to determine the scope of covered services, and many of the states have
                         opted not to cover these services.

                         Even when a program covers a needed service, a child may not meet the
                         eligibility requirements to receive it. Programs use a range of requirements
                         that must be met in order to obtain a service. For example, in order for a
                         child to receive a Medicaid service in a state, including an EPSDT service,
                         the service must be “medically necessary.” Medical necessity is defined
                         and assessed by each state’s Medicaid program and therefore can vary
                         from state to state. Similarly, a Special Education service must be deemed
                         “educationally necessary” owing to a child’s impairment for the child to
                         receive it.


                         Because of difficulties in identifying which children need services and
Difficulties in          what services they need, programs may miss serving some children who
Identifying Eligible     need services. First, making decisions about the type and amount of
Children and Their       services a child needs is difficult: The decisions are inherently complex,
                         and standardized methodologies to aid in making some decisions are
Needs May Hinder         lacking. Second, according to the results of research studies and site visit
Families in Obtaining    interviews with program officials, case managers, and community
                         organizations, some providers who deliver health and educational services
Services                 lack a sufficient understanding of childhood disability. Finally, state
                         Medicaid programs are not screening children for needed EPSDT services at
                         the frequency recommended by the Secretary of HHS, which means that
                         some children may have disability-related service needs that the program
                         has not identified.




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                           Program, Service, and Family-Related
                           Factors Affect Families’ Receipt of Program
                           Services




Difficulties in Making     Making decisions about the type and amount of services that are necessary
Service Decisions Can      for children with disabilities can be difficult. Research studies and experts
Lead to Discrepant Views   generally agree that the service needs of children with disabilities are
                           highly individualized, which makes the task of determining their need for
on Which Services Are      services inherently complex.47 Exacerbating this difficulty is the lack of a
Necessary                  clear scientific consensus on the appropriate service interventions for
                           some disabilities.48 For example, title V program directors have said that
                           managed care plans have differing interpretations of what is medically
                           necessary for children and have called for better definitions of medical
                           necessity for early intervention services.49 To the extent that a
                           standardized methodology for determining service need is unavailable,
                           program officials can have difficulty knowing the precise type and amount
                           of services and items necessary to meet a child’s needs. In such instances,
                           professional judgment is significant in decisionmaking. For instance, HCFA
                           officials told us that decisions Medicaid makes about the medical
                           necessity of certain services, such as assistive technology, diapers,
                           recreational therapy, and personal care for a child with mental illness,
                           involve professional judgment and could thus lead to divergent decisions
                           among program officials.50 When program officials disagree, one may
                           decide that a child needs a particular service while another may reach the
                           opposite conclusion. Moreover, in several instances during our site visits,
                           we also heard divergent views between program officials and providers
                           (such as physicians) about whether a service is necessary.




                           47
                             Two children with the same disability could have quite different service needs. The individualized
                           nature of need stems from the multiple factors that influence need, including severity of impairment,
                           functional level, the characteristics of the families, and broader physical and social environments.
                           48
                             Some experts have noted that disability in children has not been the focus of much scientific study.
                           For instance, the cause, progression, and effect of some impairments are not well understood, and the
                           tools to measure these concepts have not been well developed.
                           49
                             Margaret McManus and others, Strengthening Partnerships Between State Programs for Children
                           With Special Health Needs and Managed Care Organizations (Washington, D.C.: Maternal and Child
                           Health Policy Research Center, Mar. 1996). This 50-state mail survey of title V programs, prepared for
                           the HHS Maternal and Child Health Bureau, focused on the critical issues concerning managed care
                           initiatives.
                           50
                            Discrepant views also occur over whether the benefit derived from a service is primarily educational
                           or medical. For example, assistive technologies, such as augmentative communication devices, are
                           subject to debate and disagreement as to whether they have primarily an educational or a medical
                           benefit.



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                             Program, Service, and Family-Related
                             Factors Affect Families’ Receipt of Program
                             Services




Some Providers’              According to research studies and interviews we conducted with program
Insufficient Understanding   officials, case managers, and community organizations, some providers
of Childhood Disability      who deliver health and educational services to children lack sufficient
                             understanding of childhood disability. Consequently, programs may not
May Hamper Effective         identify some children with disabilities who need services or may not
Service Determination        provide services to children who may be eligible for them.

                             Teachers, for example, play a key role in identifying students who need
                             Special Education services and in helping to determine what services they
                             need. But some teachers may not be fully prepared to play this role. For
                             example, the National Longitudinal Transition Study, which collected
                             nationwide data between 1987 and 1990, found that only 19 percent of
                             regular education teachers received training on the needs of disabled
                             students.51 In addition, Alabama’s Supreme Court held in 1993 that some
                             school districts could not offer certain programs to children with
                             disabilities because there were no qualified staff to teach them. As a result,
                             local authorities were unable to ensure that even minimum standards in
                             instruction for children with disabilities were being met.52 Similarly, in
                             1994 during field hearings on IDEA, several witnesses stressed the need for
                             teacher preparation in learning about disabilities and working with
                             students who have them.53 The 1997 amendments to the IDEA state that
                             “over 20 years of research and experience has demonstrated that the
                             education of children with disabilities can be made more effective by . . .
                             supporting high-quality, intensive professional development for all
                             personnel who work with” children with disabilities.54 Yet the Department
                             of Education has stated that there is “convincing evidence of a national
                             substantial chronic shortage of special education teachers who are fully
                             certified in their positions.”55




                             51
                               Congressional Research Service, Special Education: Issues in the State Grant Program of the
                             Individuals With Disabilities Education Act (Washington, D.C.: Mar. 20, 1995), pp. 30-31. The National
                             Longitudinal Transition Study is the most current information on educational outcomes for students
                             with disabilities.
                             52
                               Opinion of the Justices, No. 338, 624 So.2d 107 (Ala. 1993).
                             53
                              Equal Educational Opportunity and Nondiscrimination for Students with Disabilities: Federal
                             Enforcement of Section 504, Equal Educational Opportunity Project Series, Vol. II (Washington, D.C.:
                             United States Commission on Civil Rights, Sept. 1997), p. 262.
                             54
                               Amendments to the Individuals With Disabilities Education Act, P.L. 105-17, title I, June 4, 1997.
                             55
                               Department of Education, Twentieth Annual Report to Congress on the Implementation of the
                             Individuals With Disabilities Education Act (Washington, D.C.: 1998), p. vi.



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                         Program, Service, and Family-Related
                         Factors Affect Families’ Receipt of Program
                         Services




Screening for Needed     State Medicaid programs do not always screen children for EPSDT services
Services Is Not Always   at the frequency recommended by the Secretary of HHS. Therefore, some
Conducted at the         children with disabilities may have needs for services that the program has
                         not identified and that they may thus not be receiving. The screening
Recommended Frequency    component of EPSDT is designed to identify children’s health problems
                         before they become more complex or disabling and require more costly
                         treatment. Specifically, each state’s EPSDT program must provide
                         age-appropriate health assessments—that is, screening
                         examinations—according to a schedule the program establishes.

                         However, research has consistently shown that state EPSDT programs did
                         not achieve HHS’s goal of providing 80 percent of the annual scheduled
                         screening examinations by 1995.56 A review of EPSDT operations between
                         1989 and 1997 found that the program “has never met its objective to
                         ensure that children received continuous and comprehensive medical
                         care. EPSDT participation rates—even for the basic screening
                         examinations—have been low throughout the history of the program.”57
                         Also, in 1998, we reported that 81 percent of children receiving Medicaid
                         benefits had not been previously screened for blood lead toxicity.58


                         Even when a child’s service needs are identified, gaining access to some
Gaining Access to        program services can be difficult. A child’s family may have difficulty
Needed Program           gaining access to services because some providers and the services they
Services Is Sometimes    offer are either unavailable or in short supply in some communities.
                         Additionally, program officials’ concerns about service cost can affect a
Difficult                child’s access to special education services. Further, service access may
                         be hindered because program officials do not always help families gain
                         access to related programs’ services.




                         56
                           The Omnibus Budget Reconciliation Act of 1989 (P.L. 101-239) required the states to establish
                         timetables for well-child examinations consisting of medical, dental, vision, and hearing screens for
                         each child covered by EPSDT. In response to the act, the Secretary of HHS set the goal that state
                         EPSDT programs were to provide 80 percent of the annual screening services recommended for each
                         age group by 1995. Although research has consistently shown that EPSDT programs did not achieve
                         their screening goals, some researchers have noted that EPSDT participation rates tend to understate
                         the number of screening examinations provided by Medicaid, as providers can either fail to correctly
                         report a visit as an EPSDT screening examination or fail to report the visit at all.
                         57
                          A. Sardell and K. Johnson, “The Politics of EPSDT Policy in the 1990s: Policy Entrepreneurs, Political
                         Streams, and Children’s Health Benefits,” The Milbank Quarterly, Vol. 76, No. 2 (1998), p. 179.
                         58
                           Medicaid: Elevated Blood Lead Levels in Children (GAO/HEHS-98-78, Feb. 20, 1998). We based this
                         study on data from the National Health and Nutrition Examination Survey, Phase 2 (1991-94).



                         Page 45                                          GAO/HEHS-99-99 Supplemental Security Income
                           Chapter 3
                           Program, Service, and Family-Related
                           Factors Affect Families’ Receipt of Program
                           Services




Providers Are in Short     Some providers and the services they offer are either unavailable or in
Supply                     short supply in some communities, hindering access to services. The
                           Florida and NHIS survey results indicate that some disability-related
                           services are unavailable to some families who need them. Among the
                           families in the Florida survey who were unable to obtain one or more
                           needed services for their children, 23 percent said they did not obtain a
                           needed service because it was unavailable. And among NHIS participants
                           who were unable to obtain needed services, about 40 percent responded
                           that they did not obtain a service because it was unavailable.

                           Experts and representatives from community organizations and case
                           managers with whom we met during our site visits told us that provider
                           shortages reduce service availability and, thus, family access to services.
                           For example, in our site visits, a range of services were mentioned as
                           being in short supply: specialized day care; respite care; occupational,
                           speech, and physical therapies; care coordination; transportation; special
                           education; special equipment; and mental health and physician services.
                           Likewise, title V program directors in a 50-state survey most frequently
                           cited overall shortages in pediatric specialty providers when asked about
                           their concerns regarding pediatric managed care.59 Moreover, as noted
                           earlier, the Department of Education maintains that the shortage of fully
                           certified special education teachers is a chronic national problem.60

                           In addition, we heard during our site visits that shortages of some
                           services—Early Intervention services, transportation, specialized day care,
                           respite care, and medical services—are more pronounced in rural than in
                           other areas. Researchers have found similar problems in rural areas of the
                           country. For example, title V directors reported that shortages in pediatric
                           specialty providers were particularly acute in rural states.61


Program Officials’         Research studies and information from our site visits indicate that the
Concerns About Costs Can   concerns program officials have about service cost can affect a child’s
Limit Access to Special    receipt of special education services. Because some disability-related
                           services are expensive, concerns about their cost may limit children’s
Education Services         access to them. For example, the U.S. Commission on Civil Rights
                           reported that the cost of assistive technologies is a particular concern of


                           59
                             McManus and others, Strengthening Partnerships Between State Programs.
                           60
                             Department of Education, Twentieth Annual Report to Congress on the Implementation of the
                           Individuals With Disabilities Education Act.
                           61
                             McManus and others, Strengthening Partnerships Between State Programs.



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                            Services




                            school officials and that technology devices and services for students in
                            special education programs can be a major expenditure for local school
                            districts. Difficulties in funding these services can prevent schools from
                            using technology in educating students with disabilities.62

                            During our site visits, program officials, case managers, and
                            representatives from community organizations told of instances in which
                            concerns about cost affected a child’s receipt of services. In order for a
                            child to receive services through the Special Education program, the IDEA
                            requires that a local team prepare an Individualized Education Program
                            (IEP) detailing the specific special education and related services,
                            supports, and aids needed for the child to receive an appropriate
                            education. In some cases, the teams responsible for determining the
                            child’s special education service needs and preparing the child’s IEP
                            exclude a service—such as assistive technology used for
                            communication—from the IEP because of its cost.


Some Programs Do Not        Experts note that some program officials provide only limited information
Help Families Gain Access   to families about community resources or do not see themselves as
to Services From Other      responsible for providing information about services available from other
                            programs. In addition, we found during our site visits that some programs
Programs                    do not refer children with disabilities to other programs. For example,
                            several case managers discussed school systems that did not refer children
                            with disabilities to the state agency that provides vocational rehabilitation,
                            although these children had reached an appropriate age for school-to-work
                            transition planning. Moreover, case managers are often assigned to
                            families but focus primarily on services offered by their own program and
                            are not always aware of services from other programs.




                            62
                              Equal Educational Opportunity and Nondiscrimination for Students with Disabilities, pp. 311-12.



                            Page 47                                          GAO/HEHS-99-99 Supplemental Security Income
                      Chapter 3
                      Program, Service, and Family-Related
                      Factors Affect Families’ Receipt of Program
                      Services




                      Some families’ limited knowledge of programs and services, limited ability
Limited Program       to proactively pursue services, or lack of transportation or other supports
Knowledge and Other   hinder their ability to obtain services for their children, which may then
Circumstances         not be acquired. According to evidence from research studies and site
                      visits, families who are knowledgeable about program services and
Impede Some           procedures and proactive in pursuing them are more successful in
Families From         obtaining services for their children than those who are not.63 For
                      instance, when programs do not refer children with disabilities to other
Obtaining Program     programs that provide needed services, families have a greater
Services              responsibility to identify those programs and arrange for service delivery.
                      However, we learned from our site visits, review of research studies, and
                      interviews with experts that some families lack this knowledge and ability
                      to be proactive in obtaining services. For example, some families do not
                      know about services that programs offer. Thus, these families may be
                      unaware that disability-related services, such as respite care, exist, or the
                      families may pay for services because they do not realize that a program
                      covers them. Still other families are unfamiliar with their legal rights to
                      services and the procedures established to protect those rights. Finally,
                      some families are unfamiliar with the steps, procedures, and terminology
                      needed to gain access to program services.

                      In addition, our site visits and research show that some families are
                      described as being unable to be proactive, hesitant to question decisions
                      of professionals, “reluctant to speak up” and share information, or
                      increasingly “apathetic” about securing services as their children grow
                      older. Some families are reportedly hesitant to assert their rights to
                      services because they fear retaliation against their children or do not want
                      the stigma of accepting public benefits. Other families simply lack the time
                      and energy to dedicate to pursuing services for their children. One family,
                      for example, spoke to us of being “too tired to try to pursue” services that
                      might be helpful. And some parents with a cognitive or physical limitation
                      are not fully able to aggressively seek and gain access to services for their
                      children.


                      63
                        For example, a study of the implementation of federal policy for young children with disabilities
                      found that the following family factors influenced the amount and nature of services provided to a
                      child: knowledge of programs serving children with disabilities and how to gain access to services
                      within these programs, ability to advocate persistently for the child’s and family’s needs, and
                      resourcefulness in pursuing these ends. The absence of these factors was sometimes associated with
                      fewer services, while their presence was associated with more and higher-quality services. Gloria L.
                      Harbin and others, Implementing Federal Policy for Young Children with Disabilities: How Are We
                      Doing?, a publication of the Early Childhood Research Institute on Service Utilization (Chapel Hill,
                      N.C.: Frank Porter Graham Child Development Center, Mar. 1998). The Institute is funded by the
                      Department of Education, Office of Special Education Programs, under a cooperative agreement
                      (H024T0002) with the University of North Carolina and Rhode Island College.



                      Page 48                                          GAO/HEHS-99-99 Supplemental Security Income
Chapter 3
Program, Service, and Family-Related
Factors Affect Families’ Receipt of Program
Services




Finally, we learned during our site visits that some families lack
transportation or other supports needed to help obtain program services.
For example, some families do not own a car, do not have access to
reliable and accessible public transportation, or do not have friends or
family who are willing and able to provide transportation assistance.
Indeed, lack of transportation is an important factor causing families to
miss appointments with service providers. Moreover, some families do not
have telephones, making it difficult for them to contact providers or an
ambulance in an emergency and increasing the difficulty case managers
have in maintaining contact with them.




Page 49                                       GAO/HEHS-99-99 Supplemental Security Income
Appendix I

38 Disability-Related Services Used in
Collecting and Analyzing Site Visit Data


               Service                                Definition
               Medical and therapy
               Doctor visits in a clinic or office    Self-defined; excludes mental health services
                                                      and hospital or emergency room visit
               Home visits by a doctor                Self-defined; excludes mental health services
               Hospital care                          Includes inpatient and outpatient hospital care;
                                                      excludes mental health services
               Skilled nursing services (RN/LPN),     Professional nursing care in the home for children
               including visiting nurse               with extensive personal and medical needs
               Dental care                            Self-defined
               Prescription medication                Self-defined
               Over-the-counter medication            Self-defined
               Counseling or mental health services, Inpatient and outpatient psychological or social
               including social work                 therapy or counseling provided by a
                                                     psychologist, psychiatrist, social worker,
                                                     counselor, or clergy member
               Health insurance                       Higher premiums or additional insurance
               Physical therapy                       Examination, treatment, and instruction in order
                                                      to detect, assess, prevent, correct, alleviate, and
                                                      limit physical disability, bodily malfunction, and
                                                      pain from injury, disease, and any other bodily or
                                                      mental condition
               Occupational therapy                   The use of any occupation for remedial
                                                      purposes; the use of selected tasks to restore,
                                                      reinforce, and enhance performance, facilitate
                                                      learning of skills and functions essential for
                                                      adaptation and productivity, diminish or correct
                                                      pathology, and promote and maintain health
               Audiology                              Therapy for impaired hearing
               Recreational therapy                   Self-defined
               Speech therapy                         Identification, assessment, and rehabilitation of
                                                      speech or language disorders such as
                                                      articulation, stuttering, or delayed language
               Respiratory therapy                    Treatment, management, and care of patients
                                                      with respiratory problems (e.g., aerosol therapy,
                                                      use of nebulizer, ventilation)
               Child care
               Respite care                           Substitute care for child with chronic illness or
                                                      disability so primary caregiver is temporarily
                                                      freed from responsibility
               Specialized day care                   Care or supervision for approximately 8 hours per
                                                      day in a special setting, after which the child
                                                      returns home in the afternoon or the evening;
                                                      care provided by a person trained to handle
                                                      medical emergencies or perform special health
                                                      procedures
                                                                                              (continued)



               Page 50                                   GAO/HEHS-99-99 Supplemental Security Income
Appendix I
38 Disability-Related Services Used in
Collecting and Analyzing Site Visit Data




Service                                    Definition
Personal attendant services, home          A professional trained to help parents with the
health aide, or special help and           care of a chronically ill or disabled child in the
supervision                                home or with household tasks; a personal care
                                           attendant provides services such as bathing,
                                           dressing, and lifting child and is an employee of
                                           a health care agency
Services from a center for                 Self-defined
independent living
Transportation
Transportation                             Provide transportation to and from a doctor or
                                           service provider for reasons related to special
                                           health care needs or disability; excludes
                                           emergency transportation
Emergency transportation                   Helicopter or ambulance
Purchase a van or car to transport a       Self-defined; excludes modifications to a van or
child with special health care needs       car
Modify a van or car to transport a         Installing special equipment because of a child’s
child with special health care needs       impairment or health problem. Includes hand
                                           controls, hand rails, straps, specialized handles,
                                           ramps, or lifts; power controls for windows,
                                           mirrors, seat, or steering; automatic transmission;
                                           air conditioning; a button that opens the door; a
                                           large trunk or storage area
Education
Educational services related to            Tutoring, books on tape, extra books, modified
special health care needs                  pens, adaptive backpack, sensory integration,
                                           etc.
Reader or interpreter                      Self-defined
School-to-work transition                  Services to facilitate a disabled child’s entry into
                                           the workforce
Home
Extra telephone charges                    Self-defined
Extra electric or other utility charges    Self-defined
Home modifications                         Widened doorways or hallways; ramps or
                                           street-level entrances; railings; automatic or
                                           easy-to-open doors; accessible parking or
                                           drop-off site; bathroom or kitchen modifications;
                                           elevator, chair lift, or stair glide; alerting devices,
                                           etc.
Equipment and supplies
Assistive technologies                     Computers, learning aids, devices to assist
                                           speech, hearing aids, etc.
                                                                                      (continued)




Page 51                                       GAO/HEHS-99-99 Supplemental Security Income
Appendix I
38 Disability-Related Services Used in
Collecting and Analyzing Site Visit Data




Service                                       Definition
Home or durable medical equipment             Respirator, nebulizer, inhaler, ventilator, suction
                                              machine; intravenous pump; feeding pump;
                                              wheelchair; specialized seating, pads; batteries,
                                              chargers, remote controls for environment or lifts,
                                              lights, computer; oxygen; portable equipment
                                              and set-ups; walking aids, braces, crutches,
                                              walkers; scooters; other types of braces;
                                              nonallergenic bedding; special pillows, leg rolls
                                              or props, etc.
Special diet or formula                       Ensure, Pedialyte, pureed baby foods or other
                                              products; high-calorie or nutrition drinks;
                                              homemade food (cost of ingredients); adaptive
                                              straws, drinking glasses, specialized utensils, etc.
Special or additional clothing                Adaptive clothing or tailoring; adaptive shoes,
                                              Velcro strips instead of laces, built-up heels, etc.
Diapers beyond the usual age                  Self-defined
Implants                                      Ear vent tube; shunt to drain fluid; artificial joint;
                                              implanted lens; implanted pin, screw, nail, wire,
                                              rod, plate; artificial heart valve; pacemaker;
                                              silicone implant; infusion pump; cochlear implant;
                                              other organ implant, etc.
Medical supplies                              Bandages or tape; distilled water; saline solution;
                                              suction catheters; gastronomy tubes; feeding
                                              tubes; syringes; dip sticks to check urine; gauze
                                              pads; skin creams; alcohol; cotton swabs, balls;
                                              urinals; chux pads; lambskin; tracheostomy and
                                              supplies; catheters and bags, etc.
Recreation
Special recreation or physical                Self-defined
education
Coordination of care
Coordination of services                      The professional coordination of services for
                                              families with children with chronic conditions or
                                              disabilities. Includes coordinating all medical
                                              care, which means keeping in touch with the
                                              child’s doctors or therapists who know the results
                                              of tests and treatments and are aware of the
                                              child’s prescription medicines. Also includes
                                              arranging nonmedical care (such as social
                                              services and personal care services), special
                                              education services, and transportation to
                                              appointments and evaluating service needs.

Sources: GAO’s compilation of services and their definitions based on the 1994 and 1995
National Health Interview Survey, including the Disability Supplement and Disability Followback
Child’s Questionnaire, and the University of Florida’s Institute for Child Health Policy 1996 survey
of Florida children with special health care needs.




Page 52                                           GAO/HEHS-99-99 Supplemental Security Income
Appendix II

Disability-Related Services Covered by
Selected Programs


                                                                                                             Percent of
                                                                                              Percent of           state
                                                                                               state title       family
                                    Medicaid                                                             V     support
                                               Number of Special      Early                   programs       programs
Service                     EPSDT                waivers Educationa   Interventiona               (n=21)         (n=44)
Medical and therapy
Doctor visits in a clinic   Yes                        0 Nob          Nob                              62%           84%c
or office
Home visits by doctor       Yes                        0 No           Nob                              14            84c
Hospital care               Yes                        0 No           No                               52            84c
Skilled nursing services Yes                          15 No           Yes                              43            84c
(RN/LPN), including
visiting nurse
Dental care                 Yes                        1 No           Yes                              62            84c
Prescription medication Yes                            2 No           No                               62            84c
Over-the-counter            No                         0 No           No                               48            84c
medication
Counseling or mental        Yes                        8 Yes          Yes                              43            84c
health services,
including social work
Health insurance            No                         0 No           No                               14            84c
Physical therapy            Yes                        2 Yes          Yes                              62            84d
Occupational therapy        Yes                        2 Yes          Yes                              62            84d
                                                                                                                       e
Audiology                   Yes                        1 Yes          Yes                              57
Recreational therapy        Yes                        0 Yes          No                               14            89f
Speech therapy              Yes                        1 Yes          Yes                              62            84d
Respiratory therapy         Yes                        0 No           No                               33            84d
Child care
Respite care                No                        24 No           Yes                              29           100
                                                                                                                       e
Specialized day care        No                         0 Yes          No                               10
                                                                                                                       g
Personal attendant,         Yes                       20 Yes          No                                5
home health aide, or
special help and
supervision
                                                                      g                                                g
Services from a center      No                         0 No                                             0
for independent living
Transportation
                                                                                                                       e
Transportation              Yes                        5 Yes          Yes                              52
                                                                                                                       e
Emergency                   Yes                        0 No           No                               33
transportation
                                                                                                             (continued)




                                          Page 53                         GAO/HEHS-99-99 Supplemental Security Income
                                          Appendix II
                                          Disability-Related Services Covered by
                                          Selected Programs




                                                                                                                          Percent of
                                                                                                           Percent of           state
                                                                                                            state title       family
                                    Medicaid                                                                          V     support
                                               Number of Special                   Early                   programs       programs
Service                   EPSDT                  waivers Educationa                Interventiona               (n=21)         (n=44)
                                                                                                                                    e
Purchase a van or car No                               0 No                        No                                0
to transport a child with
special health care
needs
Modify a van or car to    No                           1 No                        No                               19            89h
transport a child with
special health care
needs
Education
                                                                                                                                    g
Educational services      No                           0 Yes                       Yes                              14
related to special
health care needs
                                                                                                                                    g
Reader or interpreter     No                           0 Yes                       Yes                              33
                                                                                   g                                                g
School-to-work            No                           0 Yes                                                        10
transition
Home
Extra telephone           No                           0 No                        No                               19            61i
charges
Extra electric or other   No                           0 No                        No                               14            61i
utility charges
Home modifications        No                          16 No                        No                               24            89h
Equipment and supplies
Assistive technologies    Yesj                         0 Yes                       Yes                              52            91k
                                j
Home or durable           Yes                         15 No                        No                               67            91k
medical equipment
Special diet or formula   Noj                          9 No                        Nol                              76            61i
Special or additional     Noj                          0 No                        Yes                              24            61i
clothing
Diapers beyond the        Noj                          0 No                        g
                                                                                                                    48            61i
usual age
Implants                  Yesj                         0 No                        Yesm                             52              e

                                j                                                                                                   c
Medical supplies          Yes                          0 No                        No                               57            84
                                                                                                                          (continued)




                                          Page 54                                      GAO/HEHS-99-99 Supplemental Security Income
                                      Appendix II
                                      Disability-Related Services Covered by
                                      Selected Programs




                                                                                                                                   Percent of
                                                                                                                  Percent of             state
                                                                                                                   state title         family
                                Medicaid                                                                                     V       support
                                             Number of Special                        Early                       programs         programs
Service                 EPSDT                  waivers Educationa                     Interventiona                   (n=21)           (n=44)
Recreation
                                                                                      g
Special recreation or   No                              0 Yes                                                                 10            89f
physical education
Coordination of care
Coordination of services Yes                           21 Yes                         Yes                                     81            73



                                      a
                                       Services meet (yes) or do not meet (no) the minimum requirements contained in the Individuals
                                      With Disabilities Education Act and accompanying federal regulations. According to Department
                                      of Education officials, however, any service can be provided if judged to be necessary and
                                      included in the Individualized Education Program (for Special Education) or Individualized Family
                                      Service Plan (for Early Intervention).
                                      b
                                          Doctor visits are covered only for diagnostic or evaluation purposes.
                                      c
                                       Data were included under the medical expenses and health insurance category on the Human
                                      Services Research Institute (HSRI) survey.
                                      d
                                          Data were included under the specialized therapies category on the HSRI survey.
                                      e
                                          Data were unavailable from the HSRI survey.
                                      f
                                          Data were included under the recreation category on the HSRI survey.
                                      g
                                          Not applicable.
                                      h
                                          Data were included under the home and vehicle modification category on the HSRI survey.
                                      i
                                          Data were included under the household expenses category on the HSRI survey.
                                      j
                                       While federal regulations at 42 CFR 440.70(b)(3) provide that coverage of “medical supplies,
                                      equipment, and appliances suitable for use in the home” be included as part of the Medicaid
                                      home health benefit, no federal Medicaid rule or regulation defines or lists what specific supplies
                                      may or may not be provided. A June 16, 1997, memorandum from the Medicaid Director of the
                                      Office of Medical Services states: “states have the flexibility to adopt a reasonable definition of
                                      ’medical supplies, equipment and appliances.’ Applying this standard, a state could reasonably
                                      define this term to exclude specific items that are not primarily and customarily used to serve a
                                      medical purpose, and that are customarily used for other purposes.” We scored the seven
                                      equipment and supply items on the basis of Health Care Financing Administration (HCFA)
                                      officials’ views on what is or is not generally covered.
                                      k
                                          Data were included under the adaptive equipment category on the HSRI survey.
                                      l
                                      Special diets or formulas are not covered, but devices such as adaptive straws, drinking glasses,
                                      and specialized utensils are considered to be assistive technology devices and are therefore
                                      covered.
                                      m
                                          Medical implants are covered, but the surgery to implant a device is not covered.




                                      Page 55                                             GAO/HEHS-99-99 Supplemental Security Income
Appendix II
Disability-Related Services Covered by
Selected Programs




Sources: Data on Medicaid waivers are from our analysis of American Public Human Services
Association information published in 1998. (HCFA contracts with the association to collect data on
Medicaid waivers.) Data are based on the 36 waivers under the section 1915(c) Home and
Community-Based Waiver Program targeted exclusively to children with disabilities. Percentages
for state title V programs are from our analysis of findings from a 1997 survey of state title V
programs conducted by the University of Florida’s Institute for Child Health Policy. We analyzed
the survey’s findings on the scope of services of 21 state title V programs. While not
representative, these states are located in diverse geographic areas of the country and are the
state of residence for 59 percent of the population of children on SSI. See Institute for Child
Health Policy, University of Florida, Directory of State Title V CSHCN Programs’ Eligibility Criteria
and Scope of Services (Gainesville, Fla.: May 1997). Percentages for state family support
programs are from John Agosta and Kerri Melda, Results of a National Survey of Family Support
Programs for People With Disabilities and Their Families (Salem, Ore.: HSRI, 1995), p. 21. They
represent 58 programs serving children (as well as adults in some cases) with developmental
disabilities in 44 states. HSRI asked respondents whether the programs offered services in eight
broad categories: service coordination and information and referral, medical expenses and health
insurance, therapies, respite, recreation, home and vehicle modifications, adaptive equipment,
and household expenses. According to HSRI, the respondents used their own discretion in
determining how to place services in these categories.




Page 56                                          GAO/HEHS-99-99 Supplemental Security Income
Appendix III

GAO Contacts and Staff Acknowledgments


                  Carol Dawn Petersen (202) 512-7066
GAO Contacts      Barbara Bordelon (202) 512-4427


                  The following individuals also made important contributions to this report:
Staff             Cynthia Bascetta, Brett Fallavollita, Gretta Goodwin, Ellen Habenicht,
Acknowledgments   Susan Higgins, Elsie Picyk, and James Wright.




                  Page 57                             GAO/HEHS-99-99 Supplemental Security Income
Appendix III
GAO Contacts and Staff Acknowledgments




Page 58                                  GAO/HEHS-99-99 Supplemental Security Income
Appendix III
GAO Contacts and Staff Acknowledgments




Page 59                                  GAO/HEHS-99-99 Supplemental Security Income
Related GAO Products


              Supplemental Security Income: SSA Needs a Uniform Standard for
              Assessing Childhood Disability (GAO/HEHS-98-123, May 6, 1998).

              Medicaid: Elevated Blood Lead Levels in Children (GAO/HEHS-98-78, Feb. 20,
              1998).

              Supplemental Security Income: Review of SSA Regulations Governing
              Children’s Eligibility for the Program (GAO/HEHS-97-220R, Sept. 16, 1997).

              Medicaid Managed Care: Challenge of Holding Plans Accountable Requires
              Greater State Effort (GAO/HEHS-97-86, May 16, 1997).

              School Finance: State Efforts to Reduce Funding Gaps Between Poor and
              Wealthy Districts (GAO/HEHS-97-31, Feb. 5, 1997).

              People With Disabilities: Federal Programs Could Work Together More
              Efficiently to Promote Employment (GAO/HEHS-96-126, Sept. 3, 1996).

              Medicaid Managed Care: Serving the Disabled Challenges State Programs
              (GAO/HEHS-96-136, July 31, 1996).

              Medicaid: Waiver Program for Developmentally Disabled Is Promising but
              Poses Some Risks (GAO/HEHS-96-120, July 22, 1996).

              Children Receiving SSI by State (GAO/HEHS-96-144R, May 15, 1996).

              SSA   Initiatives to Identify Coaching (GAO/HEHS-96-96R, Mar. 5, 1996).

              Social Security: New Functional Assessments for Children Raise Eligibility
              Questions (GAO/HEHS-95-66, Mar. 10, 1995).

              Social Security: Rapid Rise in Children on SSI Disability Rolls Follows New
              Regulations (GAO/HEHS-94-225, Sept. 9, 1994).

              Medicaid: HealthPass: An Evaluation of a Managed Care Program for
              Certain Philadelphia Recipients (GAO/HRD-93-67, May 7, 1993).

              Federally Funded Health Services: Information on Seven Programs Serving
              Low-Income Women and Children (GAO/HRD-92-73FS, May 28, 1992).




(207000)      Page 60                                 GAO/HEHS-99-99 Supplemental Security Income
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