oversight

Respite Care: An Overview of Federal, Selected State, and Private Programs

Published by the Government Accountability Office on 1990-09-06.

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

                     United   States   General   Accounting   Office
                     Report to Congressional Requesters




* September   1990
                     RESPITE CARE
                     An Overview of
                     Federal, Selected State,
                     and Private Programs
      United States
GAO   General Accounting Office
      Washington, D.C. 20548

      Human Resources Division

      B-23973 1

      September 6,199O

      The Honorable George Miller
      Chairman, Select Committee
        on Children, Youth and Families
      House of Representatives

      The Honorable Major R. Owens
      Chairman, Subcommittee on
        Select Education
      Committee on Education and Labor
      House of Representatives

      As you requested in your August 25, 1988 letter, we reviewed the avail-
      ability and use of respite care services. You asked that we (1) provide
      information on the characteristics, nature, and availability of respite
      care services; (2) obtain respite care users’ views about the services pro-
      vided; and (3) provide suggestions for improving respite care services
      and enhancing the federal role.

      On April 6, 1989, we testified on the preliminary results of our review
      before the House Subcommittee on Select Education.’ We stated that
      various definitions of respite care were in use and that little research
      had been directed at measuring the effects of respite care services, such
      as its impact on reducing child abuse and neglect. To improve the evalu-
      ation of respite care programs, we suggested that programs should begin
      collecting data on services provided, families served, and costs. On
      October 25, 1989, pertinent legislation, the Children With Disabilities
      Temporary Care Reauthorization Act of 1989 (P.L. lOl-127), was
      enacted. It reauthorized federal respite care demonstration grants and
      required that programs begin gathering more specific data as a step
      toward evaluating the effects of respite care programs. In commenting
      on a draft of this report, HHS indicated that by 1992 its evaluation of
      respite care services would be enhanced as a result of this legislation
      and other data it is collecting.

      This report provides the final results of our review. As agreed with your
      offices, we focused on respite care services that provide temporary
      relief to family members and other caretakers of children who may be at
      risk of abuse or neglect. This includes children who are mentally
      retarded, behaviorally disturbed, physically disabled, or chronically or

      ‘Respite Care Insights on Federal, State, and Private Sector Involvement (GAO/T-HRD-89-12, Apr. 6,
      1989).



      Page 1                                    GAO/HRlMJ@125 Overview of Respite Care Programa
                   B-239731




                   terminally ill. Nearly 2.2 million children were reported as victims of
                   abuse or neglect in 1988, according to a 1989 study by the House Select
                   Committee on Children, Youth and Families. Also, as reported in a 1989
                   Department of Education report to the Congress, about 1.1 million chil-
                   dren were classified as mentally retarded by school special education
                   units in school year 1987-88. To obtain the information you requested,
                   we sent questionnaires to program officials in 25 states; conducted
                   group interviews with state program officials, service providers, and
                   parents; and interviewed federal and state government and national
                   organization officials responsible for respite care programs and other
                   experts. Our work was conducted between February 1989 and February
                   1990. Additional details on the scope and methodology of our review are
                   provided in appendix I.                                           .

                   Respite care is a relatively new and evolving social service. Programs
Results in Brief   offering respite care services are administered and funded by state
                   agencies, national organizations, and federal departments and agencies.
                   Because information on respite care is limited, we were unable to
                   account for all programs and funding provided for it. However, this
                   report presents the information that we were able to obtain on respite
                   care services.

                   In fiscal year 1988, the 25 states we surveyed funded 111 respite care
                   programs. We also identified six national organizations, including the
                   Easter Seal Society and United Cerebral Palsy Association, that provide
                   respite care services through 279 of their local chapters in 221 cities of
                   44 states and the District of Columbia. Although several federal depart-
                   ments and agencies are involved in respite care, the federal govern-
                   ment’s principal effort consists of awards by the Department of Health
                   and Human Services (HHS), amounting to about $9.7 million for demon-
                   stration grants in fiscal years 1988 and 1989.

                   While little evidence is available on the efficacy of respite care, users
                   have found the services beneficial in giving them more time to attend to
                   other family and daily-living activities. State program officials, service
                   providers, and parents who participated in our group discussions
                   believe that the demand for respite care exceeds the supply available.
                   They suggested improving respite care services by increasing the
                   amount of information and publicity about available programs, training
                   more providers, and allowing programs to be tailored to individual fami-
                   lies’ specific needs. State officials and providers also offered several
                   suggestions concerning the federal government’s role in respite care. One


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                          Et-239731




                          was to offer incentives, such as demonstration and matching grants, to
                          the states to focus greater attention on respite care.


                          Respite care provides temporary child care relief to family members and
Respite Care Aims to      other caretakers of children who may be at risk of abuse or neglect.
Relieve Stress, Prevent   Th ese include children who are mentally retarded, behaviorally dis-
Child Abuse, and          turbed, physically disabled, or chronically or terminally ill. Respite care
                          also may be targeted to foster parents and unemployed parents. The
Promote Family Unity      purpose of respite care is to relieve stress temporarily and thus prevent
                          child abuse and neglect and support family unity. Undue stress within a
                          family, whether caused by the burdens of caring for a disabled child or
                          such factors as financial worries, is strongly linked with child abuse.
                          Abuse, neglect, or a family’s inability to cope with the disabled child
                          may lead to the child’s placement in an institution or foster care. Respite
                          care seeks to support the family as a whole by providing a break for
                          parents and a safe place for the child for a short period of time.

                          Respite care has several characteristics. It is temporary and is directed
                          at the parent or other caretaker-though     the child’s needs also may
                          require a specially trained respite care provider. Respite care can be
                          planned and act as a preventive service before a crisis is reached. It also
                          can be an emergency service, such as a crisis nursery that specializes in
                          providing short-term crisis care to abused and neglected children.

                          As a recognized social service, respite care is relatively new. Like many
                          social services, it originated at the grassroots level. The need for family
                          support services such as respite care became apparent in the early
                          1970s. It followed the movement to allow disabled persons, particularly
                          children, to remain with their families instead of being placed in an
                          institution. Crisis nurseries began at about the same time.


                          State and local agencies, national organizations, and federal depart-
Federal, State, and       ments and agencies fund respite care services. In the 25 states surveyed,
Private Levels            the administration of respite care services entailed an intricate web of
Involved in               intergovernmental and private entities, whose patterns of funding and
                          operation differed from state to state. Services and operations also
Respite Care              varied considerably among the different providers.

                          Because program and funding information was not always available, we
                          were unable to develop a complete account of all programs and funds
                          provided for respite care within the 25 states surveyed. Also, some


                          Page 3                            GAO/HRB90135   Overview of Respite Care Programs
                                            5!23%731




                                            states provided funds to chapters of national associations for respite
                                            care activities. Thus, the information presented below for the states,
                                            national organizations, and federal departments and agencies may in
                                            some instances double-count the programs and funds provided for res-
                                            pite care.


Surveyed States Funded                      Respite care programs in the 25 states surveyed varied greatly in size
111 Respite Care Programs                   and funding levels. In fiscal year 1988, state agencies in these states
                                            funded 111 respite care programs that provided services locally. Expen-
                                            diture data were available for only 62; for these programs, states pro-
                                            vided about 91 percent of the $84 million funding in fiscal year 1988
                                            (see fig. 1). Individual program expenditures ranged from $3,000 to $15
                                            million. Appendix II provides additional details about the 111 programs
                                            by state.


Figure 1: Funding hurter for   62 State-
Funded Respite C8re Progr8mr    (FY 1988)




                                                                                    State




                                            The 111 state-funded programs offered a variety of respite care ser-
                                            vices, including temporary child care; personal care, such as bathing,
                                            dressing, and grooming; and companionship services. Along with these


                                            P4e 4                           GAO/HRtMKbl25 Overview of Respite Care Programs
                    B239731




                    services, non-respite-care support services were provided, including
                    family counseling, training for disabled children to function indepen-
                    dently, and occupational/physical therapy.

                    While eligibility criteria vary among the 111 state-funded programs, the
                    child’s condition and age were overriding considerations in determining
                    a family’s eligibility for respite care services. Generally eligible were
                    families with children who were developmentally disabled, mentally
                    retarded, chronically or terminally ill, and behaviorally or emotionally
                    disturbed. Almost all programs allowed families to receive respite care
                    services from the time a child was born to age 22. Some programs had
                    no upper age limits for eligibility. Income generally was not an eligibility
                    determinant; most programs provided services at no cost to the family.
                    For the few state-funded programs that required payment for services,
                    most fees were on a sliding scale, based on the families’ ability to pay.

                    Respite care services provided by the state-funded programs were
                    offered in the parents’ or caretakers’ home and other locations outside
                    the home. Out-of-home services usually were furnished in relatives’
                    homes, licensed foster homes in which foster parents provided tempo-
                    rary respite care services, or respite care group homes, in which both
                    client and community provider lived while respite care services were
                    provided.

                    Additional summary information about the 111 state-funded respite
                    care programs, such as the types of services provided, fee structures
                    and provider eligibility or licensing requirements, are included in appen-
                    dixes III through V.


National Service    Many respite care programs are administered by national organiza-
Organizations Are   tions-private,   nonprofit service associations and societies-that began
                    providing such services in the 1970s. We identified six national organi-
Major Providers     zations (see table 1) that provide respite care services through 279 local
                    chapters located in 221 cities of 44 states and the District of Columbia.
                    The national organizations did not have detailed information on the
                    funds spent and number of families served by their local chapters.
                    Appendix VI identifies the states in which these organizations provide
                    respite care services.




                    Page 6                            GAO/HRD-90-125 Overview of Respite Care Programs
                                            5239731




Table 1: National Organization8
Providing Respite Care Servicer in 44                                                                  Local chapters
States and the District of Columbia                                                                          providing          States
                                            Organization                                                  respite care        covered
                                            Camo Fire                                                                 90 _____-      35
                                            Easter Seal Society                                                       37             26
                                            National Council on Aging                                                 10               8
                                            National Down Syndrome Society                                             5               2
                                            United Cerebral Palsy Association                                         50             2’
                                            Visitina Nurses Association of America                                    87             29
                                            Total                                                                   279


                                            Using different approaches, the national organizations variously pro-
                                            vide respite care services in the child’s home, outside the home, and
                                            through educational services. For example:

                                        . The National Down Syndrome Society brings together Down Syndrome
                                          children and host families who volunteer to care for the children one
                                          weekend every 6 weeks over a l-year period. The program also seeks to
                                          foster independence in the children and educates host families and com-
                                          munities about Down Syndrome.
                                        l The National Council on Aging’s Family Friend Program matches older
                                          volunteers with chronically ill and disabled children. Once a week, the
                                          volunteers visit these children in their homes and provide psychological
                                          and social support to the children, parents, and other family members.


Federal Involvement                         The federal government’s involvement in respite care has been limited
Lim ited                                    mostly to demonstration programs funded by HHS. Under the Temporary
                                            Child Care for Handicapped Children and Crisis Nurseries Act of 1986,
                                            the Congress directed that HHSestablish a demonstration program of
                                            grants to states. These grants are to help provide (1) temporary, non-
                                            medical child care to families having children with disabilities or with
                                            chronic or terminal illnesses and (2) crisis nurseries for children who are
                                            abused and neglected, at high risk of abuse and neglect, or in families
                                            receiving child protective services.

                                            In fiscal years 1988 and 1989, HHS awarded about $9.7 million to 42
                                            states and Puerto Rico for 67 demonstration grants. About $4.7 million
                                            was awarded for 32 temporary handicapped child care grants and $5
                                            million for 35 crisis nursery grants.




                                             Page 6                                  GAO/IiIUM@126   Overview of Respite Care Programs
 5239731




 An example of a project funded by HHS is a $150,000 demonstration
 grant to the Missouri Department of Mental Health. It finances the
 training of providers to perform in-home and out-of-home respite care
 services for 50 children. Missouri’s Department of Mental Health
 expects to provide services to families with children who have multiple
 disabilities. These are families who most need relief from the stresses of
 giving primary care and are thought to have the smallest pool of prov-
 iders from which to choose.

 Another project is a $150,000 demonstration grant to the Texas Depart-
 ment of Health to develop a state plan for providing respite care ser-
 vices for infants with special needs. The project’s goals include
 implementing model respite care projects in rural Texas and coordi-
 nating state resources to improve accessibility to respite care services.

  Recent legislation authorized additional funds to HHS for respite care
  demonstration projects. In October 1989, the Children W ith Disabilities
  Temporary Care Reauthorization Act authorized $20 million for fiscal
  year 1990 and an additional $20 million for fiscal year 1991 for tempo-
  rary child care and crisis nursery grants. The legislation stipulates that
  reports be submitted on project costs, family stability, incidence of
  abuse or neglect, services provided, and recipients’ demographic data.
  About $8.3 million in grants are expected to be awarded in fiscal year
  1990 to fund up to 20 new demonstration projects and to extend some of
  the 67 previously funded projects.

  Other HHS programs have provided funds for respite care, such as Medi-
  caid’s financing of home and community-based services for disabled
  individuals. However, we were unable to obtain information on the
  amount of funds provided.

  In addition to HHS, we identified several other federal departments and
  agencies that provide limited respite care services:

  ACTION, an independent federal agency that administers volunteer ser-
  vice programs, provides respite care services through its Foster Grand-
  parent Program. Through 328 local programs, ACTION employs low-
  income elderly people to act as foster grandparents to special-needs chil-
  dren. The agency also has provided a $25,000 grant to the National
  Down Syndrome Society to help communities across the nation replicate
  the society’s respite care program, as indicated on page 6.
. In the Department of Defense, the Department of the Army has the most
  extensive formal program. The Army provides respite care services to


  Page 7                           GAO/HRDBO-125 Overview of Respite Care Programs
                               5239731




                               its personnel through 232 programs located on and outside its installa-
                               tions and 107 foster care programs in the United States and overseas.
                               Although the Department of the Navy has no formal respite care pro-
                               gram, Navy officials said that it has programs at six locations world-
                               wide that together spend about $62,000 annually on respite care-related
                               activities. The Air Force and Marine Corps also have no formal pro-
                               grams, but officials said that volunteers, community resources, and
                               nonappropriated funds are used to support respite care functions. These
                               services also use child development centers for respite care on an infre-
                               quent basis.
                           l   The Department of Education has funded three grants, each for $30,000,
                               to (1) perform a national survey of families on their knowledge of res-
                               pite care, (2) develop materials for families on how to use and identify
                               sources of funds for respite care services, or (3) develop informational
                               products to enhance the supply and use of respite care services. In addi-
                                tion, the Department of the Interior has a project that involves a home-
                                maker providing respite care services to families on an Indian
                                reservation in Mississippi.

                               No information was available on the amount of respite care funding or
                               the number of families served for several of these federal programs.
                               Appendix VII identifies the states in which federal grants for respite
                               care have been awarded since 1983.


                               Parents participating in our group discussions about respite care said
Families Find Respite          that such services help reduce the stress associated with caring for their
Care Services                  disabled children and permit them to perform other routine daily family
Beneficial, but Lim ited       activities. For example, respite care services give family members and
                               other caretakers time to shop for groceries, get to doctor appointments,
                               and meet the normal needs of other siblings. Respite care also gives par-
                               ents time to spend with each other or attend special events, such as
                               family weddings and graduation ceremonies. Some families said that
                               they rely on respite care providers to care for older disabled children
                               whose size, weight, and physical development make them more difficult
                               to care for than younger children.

                               State program officials, local providers, and respite care users expressed
                               views that the demand for respite care services exceeds the supply
                               available. As noted in our testimony, little information is available on
                               the numbers of families being served or needing respite care services.
                               Thus, we were unable to measure the demand for such services. How-
                               ever, information provided by state program officials provides some


                                Page 8                          GAO/HUD00126   Overview of Respite Care Programs
                           B239731




                           indications that the demand for respite care services exceeds the avail-
                           able supply. For example, 40 state-funded programs had identified
                           about 3,700 families on waiting lists maintained during fiscal year 1988.
                           (Sixty-nine programs did not maintain waiting lists, and two did not
                           indicate that they had such lists.) In addition, 77 programs had referred
                           families to other social programs for respite care services because the
                           families had requested more services than were available or the number
                           of families and other caretakers requesting services exceeded those
                           available. (The remaining 34 programs either did not refer families or
                           did not indicate if they made referrals.)


                           Participants in our group discussions made several suggestions for
Respite Care Users,        improving respite care services, including increasing the information
Providers, and             and publicity about available services, training more providers, and
State Officials            maintaining flexible programs. They also believe that the federal gov-
                           err-m -rent’srole could be enhanced by offering states incentives, such as
Offer Suggestions          demonstration and matching grants, to focus greater attention on respite
                           care.


Increase Information and   Respite care users believe and state officials agree that more informa-
Publicity About            tion about the availability of respite care services is needed. Family
                           members participating in our group discussions said that information
Available Services         about and referrals for respite care services are scarce and difficult to
                           obtain. Program officials in one state indicated that no central entry
                           point for respite care services is available and that departments within
                           the state are unaware of each other’s respite care activities.

                           We identified two state networks-the Texas Respite Resource Network
                           and the Nebraska Resource Referral System-that make respite care
                           information available to families as well as to local agencies. The Texas
                           network is an information clearinghouse and also provides technical
                           assistance to parents, agencies, and programs throughout the United
                           States. Nebraska has a state computerized system of information and
                           referral services with emphasis on children with special needs.


Train More Providers       A need for specialized training of respite care providers was expressed
                           by parents using respite care services, especially parents of disabled
                           children. They had difficulty finding respite care providers trained to
                           care for children who have severe emotional problems, are medically
                           fragile, or are dependent on technical medical equipment. The parents


                           Page 9                           GAO/HRDSO-126 overview of Respite Care Programs
                       5239731




                       suggested that the states be responsible for recruiting and training prov-
                       iders for children with these disabilities. Local providers of respite care
                       also commented on the need for more trained providers to deal with the
                       special needs of disabled children.


Maintain Flexible      Participants in our group discussions said that respite care services need
                       to be tailored to individual families. Families should be able to select the
Programs               provider and determine the level of care and kinds of services needed,
                       participants asserted. For example, a Michigan program offers cash sub-
                       sidies to families that permit them to find their own provider and deter-
                       mine their own level of services. A Connecticut state program official
                       said that families should be given funds and permitted to purchase their
                       own services.


Enhance Federal Role   State respite care officials and local providers offered several sugges-
                       tions for the federal government’s role in respite care. Several said that
                       the federal government should offer states incentives, such as demon-
                       stration or matching grants or some type of reimbursable financial
                       arrangements, to focus greater attention on respite care. Some believed,
                       however, that to have the most positive effects on families, such incen-
                       tives should encompass more than respite care. A focus on the whole
                       spectrum of family support services, such as day care and recreational
                       services, was suggested. State officials suggested that if more federal
                       money is made available, it be used for such activities as outreach
                       efforts or recruiting and training providers to care for children with spe-
                       cial medical needs or emotional disorders. A state official and several
                       local providers expressed concern that the federal government not regu-
                       late or establish standards for respite care.


                            agreed with the information we gathered on respite care services
Agency Comments        HHS
                       and with the suggestions made by respite users, providers, and state
                       officials for improving respite care services. It believed, however, that
                       additional data on such services were needed before public policy is
                       formulated.


                       As arranged with your office, unless you publicly announce its contents
                       earlier, we plan no further distribution of this report until 30 days from
                       the date of this letter. At that time, we will send copies to the Secretary



                       Page 10                          GAO/HRD9&12S Overview of Respite Care   Programs
E-239731




of Health and Human Services, the Director of the Office of Management
and Budget, and other interested parties.

Please contact M r. Gregory J. McDonald on (202) 275-5365, if you or
your staff have any questions concerning this report. Other major con-
tributors to this report are listed in appendix IX.




Lawrence H. Thompson
Assistant Comptroller General




Page 11                         GAO/HRDg@l26 Overview of Respite Care Programs
Contents


Letter                                                                                                1

Appendix I                                                                                           16
Objectives, Scope, and     Objectives
                           Scope and Methodology
                                                                                                     16
                                                                                                     16
Methodology
Appendix II                                                                                          18
Characteristics of 111
State-Funded Respite
Care Programs, by
State (1988)
Appendix III                                                                                         22
Summary   Inform&ion       Eligibility Criteria                                                      22
                           Types of Respite Care Services                                            23
About 111 State-           Fee Structure for Services                                                24
Funded Respite Care        Service Delivery Settings                                                 25
                           Sources of Respite Car& Information                                       26
Programs -                 Provider Requirements and State Monitoring                                27

Appendix IV                                                                                          28
Number of State-
Funded Respite Care
Programs Having
Certain Provider
Eligibility or Licensing
Requirements




                           Page 12                        GAO/HRD-ml35   Overview of Respite Cam Progmms
                        Contents




Appendix V                                                                29
Results of
Questionnaire
Administered to
Officials of State-
Funded Respite Care
Programs
Appendix VI
Number of Local
Chapters of National
Organizations W ith
Respite Care
Programs, by State
(FY 1989)
Appendix VII
Federal Respite Care
Grants Awarded, by
State (1983-89)
Appendix VIII                                                              53
Comments From the
Department of Health
and Human Services
Appendix IX                                                                55
Major Contributors to
This Report




                        Page 13    GA0/lamtMMIovervieuofBesp1teCare   PxDgrma
               Contents




Bibliography                                                                             56

Tables         Table 1: National Organizations Providing Respite Care                     6
                   Services in 44 States and the District of Columbia
               Table III. 1: Principal Sources of Information About                      27
                   Respite Care Services (FY 1988)

Figures        Figure 1: Funding Sources for 62 State-Funded Respite                       4
                   Care Programs (FY 1988)
               Figure III. 1: Types of Children Served by Respite Care                   22
                   Programs in 25 States Surveyed (FY 1988)
               Figure 111.2:Types of Services Provided by 111 State                      23
                   Funded Respite Care Programs (FY 1988)
               Figure 111.3:Non-Respite Care Support Services Provided                   24
                   by 100 State-Funded Programs (FY 1988)
               Figure 111.4:Factors Used by 30 State-Funded Programs                     25
                   in Determining Sliding Scale Fee for Respite Care
                   Services (FY 1988)
               Figure 111.5:Out-Of-Home Settings Used by 96 State-                       26
                   Funded Programs to Deliver Respite Care Services
                   (FY 1988)




               Abbreviations

               GAO        U.S. General Accounting Office
               HHS        Department of Health and Human Services


               Page 14                        GAO/HRD9&1%5 Overview of Respite Care Programs
Page 15   GAO/HRB9@126 Overview of Respite Care Programs
Appendix I

Objectives, Scope,and Methodology


                  The Chairman of the House Select Committee on Children, Youth, and
Objectives        Families and the Chairman of the House Subcommittee on Select Educa-
                  tion of the Committee on Education and Labor asked us to review the
                  availability and use of respite care services. As agreed with the
                  Chairmen’s offices, we obtained information on the following:

              l   The availability and nature of respite care programs in the United
                  States and characteristics of families eligible to receive such services;
              l   How families use respite care services, what difference these services
                  make in their lives, and how families cope without such services; and
              l   Views of program officials, service providers, and users on enhancing
                  the federal government’s role in respite care and how existing services
                  could be improved.


                  To obtain the requested information, we (1) sent a questionnaire to state
Scope and         respite care program officials in 25 states; (2) conducted group discus-
Methodology       sions with selected state officials, local providers, and family members;
                  (3) interviewed officials of and obtained data from federal departments
                  and agencies and national, private, nonprofit service associations and
                  societies; and (4) reviewed the literature on respite care. Our work was
                  performed from February 1989 through February 1990.

                  The 25 states to which we sent a questionnaire to learn more about state
                  respite care programs were selected on the basis of the number of handi-
                  capped children that states reported during school year 1987-88 (see
                  app. II.). These states account for about 80 percent of such children.
                  Some of the states also had high rates of child abuse in calendar year
                  1986. Through our questionnaire (see app. V), we obtained the following
                  information about respite care activities in the 25 states surveyed:
                  (1) background data on the states’ respite care program, (2) types of
                  respite care services and delivery settings, (3) eligibility criteria for
                  receiving services, (4) client costs for services, (5) provider eligibility or
                  licensing requirements and monitoring, (6) funding sources, and
                  (7) characteristics of people served. We did not independently verify the
                  data provided.

                  We conducted five group interviews: one with state respite care program
                  officials, two with local respite care providers, and two with Detroit
                  family members. The latter had used respite care services or were on
                  waiting lists for them. During the sessions, we asked for the groups’
                  views on a number of respite care issues. State officials were queried as
                  to their ability to meet respite care needs in their state and the need for


                  Page 16                           GAO/IiRD9@125 Overview of Respite Care Programs
Appendix I
Objectivq Scope, and Methodology




a federal role in respite care. Local providers discussed the availability
and use of respite care services, families’ satisfaction with respite care
services, the impact of respite care on families and other caretakers, and
the federal role in respite care. Family members focused on their need
for respite care services, the availability of such services, and their sat-
isfaction with respite care services.

To identify respite care activities, we interviewed officials of and
obtained information from selected federal departments and agencies
and national organizations. The federal departments and agencies
included in our review were the Departments of Defense, Education,
HHS, and the Interior, and ACTION. We also contacted 21 national orga-
nizations that were primarily associated with health and handicapped
activities to determine their involvement in respite care. Six of these
national organizations identified local chapters or affiliates that have
respite care activities (see app. VI).

In addition, we conducted extensive literature searches to identify data
on respite care activities and its impact on reducing stress and abating
child abuse and neglect. We also asked state questionnaire respondents
to identify and furnish us any studies on respite care effectiveness.
Finally, we interviewed respite care experts to obtain their insights on
respite care.




Page 17                            GAO/HRD-90426 Overview of Respite Care Programs
Appendix II

Chamcteristics of 111 State-Funded Respite
Care Program, by State (1988)


                                                                          Target                                                      Services
State/type ot                                        Year     Statewide   group              Total           Families             In-          Out-ot-
administering  agency                                begun    services    coverage        tunding
                                                                                           ___~-~              sewed              home         home
Alabama
Human resources                                      1935     Yes                 ab                 c                   c
                                                                                                                                     Yes           Yes
Mental health/ mental retardation                    1988      No               d                    c                   c           No            Yes
                                                                                 ___-
                                                     1985 ~___-No         Broade           $21,769--___-                 c           Yes           Yes
__.-                                                                                                                             ______            ~~~~~
Rehabilitation and crippled children                 1976      Yes              fg       1,750,oocl                550               Yes           No
                                       _________
Alkansas
Developmental disabilities                           1988      Yes        Broad                      c                   ‘           Yes           Yes
                                                     1980      No         Broad                      c                   c           Yes           Yes
                                                     1979      Yes        Broad                      c                   c           No            Yes
Human services                                       1983      Yes                a                  c                   c           Yes           No
California
Developmental services                               1978      Yes        Broad         15,211,876                       c           Yes            Yes
Education                                            1984      Yes                h      1.719.ooo                       c           No             Yes
Health services                                      1985      No         Broad            260,711                       c           No             Yes
Colorado
Developmental disabilities                           1984      Yes        Broad                      c                   c           Yes            Yes
                                                     1981      No         Broad             85,743                       c           Yes            Yes
Social services                                      1986      No                 1.h      590,ooo                  19               Yes            Yes
                                                     1980      No         Broad            104,ooo                       c           No             Yes
Connecticut
Child protection                                     1979      No                 h
                                                                                            29,085
                                                                                                                             ‘
                                                                                                                                     Yes            Yes
Chrldren and youth                                   1986      No                 a        109,634                  24               No             Yes
                                                                                                     c
                                                     1986      No                 a.b                                        c
                                                                                                                                     No             Yes

Education support                                    1974      No         Broad             41,789                           c       No            Yes
Family support                                       1986      No                 a.h
                                                                                            39,240                 210               No            Yes
Health services                                      1982      Yes        Broad            596,750                 443               Yes           Yes
                                                     1980      Yes        Broad                      c                       c       Yes           Yes
Mental retardation                                   1988      Yes                h,                 c                       c
                                                                                                                                     Yes           Yes
                                                     1983      Yes        Broad                          c         979               Yes           Yes
                                                     1960      Yes                h,                     c         200               No            Yes
                                                                                                                                             __-__
Florida
Developmental services                               1973      Yes        Broad                          c                   c       Yes            Yes
Health and rehabilitation                            1988      No         Broad             57,769                      35           Yes            Yes
                                                     1987      No         Broad                          c                   c       No             Yes
                                                     1983      No                  a       318,692                 203               No             Yes
Medicaid                                             1982      Yes        Broad              8,514                           c       Yes           --Yes
                                                                                                                                           (contrnued)




                                                   PIge 18                              GAO/XIED~12S          Overview of &spite       Care Pmgrams
                                                    Appendix II
                                                    characteriatic3 of 111 state-hded      Respite
                                                    Care Programs, by State (MM)




                                                                                  Target                                                 Services
State/type of                                          Year       Statewide       group                  Total       Families        In-          Out-of-
administering   agency                                 begun      service8        coverage            funding          senred        home         home
Illinois
Chrld/family services                                  1987       Yes                      ab                    c               c      Yes           Yes
                                                                                                                                                      -
                                                       1964       Yes                      a         4,491,400                   c      Yes           Yes
Crippled children                                      1985       Yes              Broad                         c               t      Yes           No
Mental health/ developmental   disabilities            1980       No               Broad             4,205,692          3,350           Yes           Yes
Rehabilitation services                                1980       Yes              Broad               145,000            177           Yes           No
                                                       1979       Yes                      h                     c               c      Yes           No
Indiana
Human services                                         1987       No                       a           142,875                   c      No            Yes
Mental health                                          1981       Yes              Broad             1,189,356           1,100          Yes           Yes
Public welfare                                         1980       Yes              Broad               136,697                   c      Yes           Yes
Iowa
                                                                                           h                     c
Human services                                         1987       No                                                             c
                                                                                                                                        Yes           No
                                                       1984       Yes              Broad                 3,504                   c      No            Yes
Kentucky
Human resources                                        1983       Yes              Broad              604,312             565           Yes           Yes
Mental health/ mental retardation                      1980       Yes                      I          955,078                    c      Yes           Yes
Medical services                                       1987       Yes                      h          325,824             592           Yes           Yes
Socral servrces                                        1988       Yes                      b                     c               c      Yes           Yes
                                                       1988       No               Broad                         c               c      Yes           No
                                                       1985       Yes              Broad                         c               c      Yes           Yes
Louisiana
Community services                                     1988       Yes                      b.h           6,063                   c      No             Yes
                                                       1986       No                       b
                                                                                                        24,300              75          Yes            Yes
                                                       1984       No               Broad                         c               c      Yes            No
                                                       1980       Yes              Broad             1,234,724            904           Yes            Yes
Mental retardation/ developmental    disabilities      1983       Yes              Broad                         c               c      Yes            Yes
Massachusetts
Mental retardation                                     1984        Yes                     I       3,000,000                     c      Yes            Yes
                                                       1979        Yes             Broad          15,000,000            10,000          Yes            Yes
Public health                                          1976        Yes                     f         122,000               288          No             Yes
                                                       1975        Yes                     I         426,500               205          Yes            No
Public welfare                                         1984        Yes                     dl                    c               c
                                                                                                                                        Yes            Yes
Michigan
Developmental disabilities                                    c    Yes             Broad                         c               c      Yes            Yes
Mental health                                          1985        Yes             Broad               334.569
                                                                                                       ~~ ,---              43          Yes            Yes
                                                       1984        Yes             Broad                         c               c      Yes            Yes
                                                       1984        Yes             Broad                         c       3,000          Yes            Yes
Social services                                        1988        No              Broad                 3,000                   c      Yes            Yes
                                                                                                                                              (continued)




                                                    Page 19                                      GAO/IfRB9@126 Overview of Respite Care Rogreme
                                                   Appendix II
                                                   Characteriatiee of 111 StateF’unded Respite
                                                   Care Programs, by State (1999)




                                                                                Target                                                  Services
State/type of                                         Year       Statewide      group                Total       Families           In-          Out-of-
administering  agency                                 begun      services       coverage          funding          served           home         home
Minnesota
Developmental disabilities                            1984       Yes             Broad            793,000                       c      Yes           Yes
Human services                                        1987       No                      h                   c          10             Yes           Yes
                                                      1985       Yes                     h
                                                                                                     9,815                      c      Yes           Yes
                                                      1976       Yes             Broad                       c                  c      Yes           Yes
Missouri
                                                                                         bd
Mental health                                         1985       No                                  3,000                  8          Yes           Yes
Mental retardation/ developmental   disabrlities      1975       Yes             Broad                       c                  c      Yes           Yes
                                                                                         ab
Social servrces                                       1984       No                                26,801               68             Yes           Yes
New Jersey
                                                                                         h
Health                                                1978       Yes                              280,000               25             Yes           No
Human services                                        1984       Yes                     h
                                                                                                  470,251                       c      Yes           No
                                                      1983       Yes                     d                   c                  c      No            Yes
Developmental disabilities                            1980       Yes                     h
                                                                                                 39234,843                      c      Yes           Yes
New York
Health                                                1986       No              Broad             186,619              88             Yes            No
                                                                                         dh
Mental health                                         1982       Yes                               330,500             177             Yes            No
Mental retardation/ developmental disabilities        1985       Yes             Broad          15,000,000          13,000             Yes            Yes
                                                                                                             c
Socral servrces                                       1986       Yes                     f.h                                    c
                                                                                                                                       Yes            No
North Carolina
Mental health/ mental retardation/ substance
abuse services                                        1988       No                      h          60,400              18             Yes            Yes
                                                      1975       Yes             Broad                       c                  c      Yes            Yes
Human resources                                       1983       Yes             Broad              24,394              49             Yes            Yes
                                                      1983       No              Broad                       c                  c      Yes            Yes
                                                      1981       Yes             Broad                       c         150             Yes            Yes
Ohio
Community servrces                                    1983       Yes             Broad           2,849,970                      c      Yes            Yes
Human services                                        1986       No                      a           3,780              19             No             Yes
                                                      1985       No                      a         142,365             257             No             Yes
                                                      1983       Yes             Broad                       c                  c      Yes            Yes
Mental health                                         1988       Yes                     ad                  c                  c
                                                                                                                                       Yes            Yes
Oklahoma
Child welfare                                         1970       Yes             Broad                       c                  c      Yes            Yes
Health                                                1987       No              Broad             45,500              150             No             Yes
Human resources                                       1985       Yes             Broad            119,699              205             Yes            Yes
Mental health                                         1986       No              Broad            700,000              200             Yes            Yes
Social services                                       1985       Yes             Broad             84,000               60             No             Yes
                                                                                                                                             (continued)




                                                   Page20                                      GAO/HRJ%9&126 Ove-rview of Respite Care Progmme
                                                 Appendix II
                                                 Characteristics of 111 State-Funded Respite
                                                 Care FVo@ams, by State (1988)




                                                                                     Target                                               Services
State/type of                                       Year          Statewide          mw                Total       Families           In-          Out-of-
adminibiering agency                                begun         services           coGrage        funding         served            home         home
Pennsylvania
Mental health                                       1988          No                         dh
                                                                                                      38,167                      c      Yes           Yes
                                                    1986          Yes                        d                 c                  c      Yes           Yes
Mental retardation                                  1973          Yes                        I     3,626,228          6,809              Yes           Yes
Tennessee
Mental health/ mental retardation                   1978          No                 Broad            71,921             140             Yes           Yes
                                                                  Yes                        4       130,000                      c      Yes           Yes
Social services                                     1987          No                         a                 c          11             No            Yes
                                                    1985          No                         a.h      10,000              16             No            Yes
Texas
Human services                                      1988          No                 Broad                     c              4          Yes            Yes
                                                    1985          No                                 101,292                      c      Yes            Yes
                                                    1985          Yes                        I       106,712              15             Yes            No
                                                                                             dht
Mental health/ mental retardation                   1988          Yes                                          c
                                                                                                                          25             Yes            Yes
                                                    1985          Yes                Broad                     c                  c      Yes            Yes
                                                    1987          No                 Broad                     c       1,246             Yes            Yes
Virginia
Mental health/ mental retardation/   substance
                                                                                             h                 c
abuse services                                      1979          No                                                              c
                                                                                                                                         Yes            Yes
                                                           c
                                                                  Yes                        a.d               c                  c
                                                                                                                                         Yes            Yes
Washington
Developmental disabilities                          1981          Yes                Broad                     c                  c      Yes            Yes
Family services                                     1984          Yes                        b                 c                  c
                                                                                                                                         Yes            Yes
Mental health                                       1979          No                         bd                c                  c
                                                                                                                                         No             Yes
Social/health services                              1974          Yes                Broad         2.031.146                      c      Yes            Yes
                                                 ‘Children at risk of abuse or neglect

                                                 bFoster care children

                                                 CData unavailable
                                                 dBehaviorally or emotionally disturbed children

                                                 e”Broad” targeting means the program covered the developmentally disabled or all or most of the fol-
                                                 lowtng groups: mentally retarded, physically handicapped, chronically ill, visually impaired or blind,
                                                 speech or hearing Impaired. behaviorally or emotionally disturbed, abused or neglected, or foster care
                                                 children.

                                                 ‘Medically or physrcally handicapped children

                                                 ‘%hrontcally or terminally III chtidren

                                                 “Mentally retarded chtldren
                                                 ‘Other




                                                 Page 21
Summary Information About 111 State-F’unded
Respite Care Programs

                                            Respite care program officials in the 25 states surveyed identified 111
                                            state-funded respite care programs. Information we obtained about
                                            these programs through our survey included (1) eligibility criteria for
                                            receiving services, (2) types of services provided, (3) fee structures for
                                            services, (4) service delivery settings, (5) sources of information about
                                            available services, and (6) provider requirements and state monitoring.
                                            Following is a summary of the information.


                                            In almost all state-funded programs, eligibility for respite care services
Eligibility Criteria                        was based on the age and condition of the disabled child. Families’ and
                                            other caretakers’ income was also an eligibility criterion for 32 pro-
                                            grams. As illustrated in figure III. 1, most of the states funded programs
                                            that offered respite care services to families with children who were
                                            mentally retarded, developmentally disabled, and behaviorally and emo-
                                            tionally disturbed.


Figure 111.1:Types of Children Sewed   by
Respite Care Programs in 25 States
                                            25   Numbor of Stir
Surveyed (FY 1988)




                                             Page 22                          GAO/HRD9@125 Overview of Respite Care Programs
                                          Appendix Ill
                                          Summary Information About 111 State
                                          Funded Respite Care Programs




                                          Ninety-seven programs provided respite care services from the day the
                                          child was born. Seventy-one programs discontinued services when the
                                          child reached age 22, while 29 programs provided respite care
                                          throughout the child’s life.


                                          A variety of respite care services were provided by the 111 state-funded
Types of Respite Care                     programs in fiscal year 1988, as shown in figure 111.2.For example,
Services                                  71 programs provided respite care services in the form of personal care
                                          services that included bathing, dressing, and grooming; meal prepara-
                                          tion and feeding; light housekeeping and laundering; shopping; and
                                          transportation. Also, 59 programs provided respite care services in a
                                          residential facility designed to provide such services for short intervals.




Figure 111.2:Types of Services Provided
by 111 State-Funded   Respite Care
                                          111   NumbardPKapmm
Programs (FY 1988)




                                          Page 23                               GAO/HlUMO-125 Overview of Respite Care Programs
                                        Appendix III
                                        Summary Information About 111 State
                                        Funded Respite Care Programs




                                        In addition to respite care, 100 state-funded programs provided other
                                        support services (see fig. 111.3).These include independent living skills
                                        that helped the children prepare to live on their own; occupational and
                                        physical therapy administered for major limbs and muscles; home
                                        health care, including nursing and therapy; and child care that provided
                                        temporary arrangements for the children while the parents worked.


Figure 111.3:Non-Respite Care Support
Services Provided by 100 State-Funded
                                        100   Numbuofmms
Programs (FY 1988)




                                        Seventy-nine of the 111 state-funded programs did not charge families
Fee Structure for                       and other caretakers for the respite care services provided. Of the
Services                                32 programs that charged a fee, 30 charged parents an amount based on
                                        a sliding scale. Figure III.4 shows the various factors used in deter-
                                        mining the fee. In many cases, the fee was based on a combination of the
                                        factors.




                                         Page 24                              GAO/IiRLb~125   Overview of l&spite Care Progmmo
                                          Appendix IlI
                                          Summary Information About 111 State
                                          Funded Respite Care Programs




Figure 111.4:Factors Used by 30 State-    -
Funded Programs in Determining Sliding
                                          30     Numkr of Pmgnms
Scale Fee for Respite Care Services (FY
1988)
                                          25




                                          Faciom for Sliding SC& Foa



                                              The state-funded respite care programs used one or a combination of
                                              methods to pay respite care providers for their services. Twenty-three
                                              programs gave families and other caretakers direct cash subsidies for
                                              respite care services, which allowed them to purchase the services and
                                              other items specifically needed for their child. Seventy-seven programs
                                              made direct payments to respite care providers, and 48 programs paid
                                              fiscal agents, who in turn paid the respite care providers.


                                              Seventy of the 111 state-funded programs offered respite care services
Service Delivery                              throughout the state, while 41 programs offered services only in specific
Settings                                      geographic locations. Fifteen programs provided services only within
                                              the parents’ or other caretaker’s home; 24 programs provided services
                                              only in settings located outside the child’s home; and 72 provided such
                                              services in both settings. As illustrated in figure 111.5,the out-of-home
                                              settings included state institutions and camps that provided respite care
                                              for the family and camping experiences for the child. In addition, foster



                                              Page 25                           GAO/HRDBO-125 Overview of Respite Care Programs
                                            Appendix Ill
                                            Sununary Infomtion   About 111 State-
                                            Funded Respite Care Progra~~s




                                            care homes provided temporary respite care for children along with typ-
                                            ical long-term foster care.


Figure Ill.5 Out-Of-Home Settings Used
by 96 State-Funded    Programs to Deliver   66    Numbsr of Prognmm
Respite Care Services (FY 1988)

                                            60


                                             64


                                             46


                                             32


                                             16


                                              0




Sources of Respite                           state-funded programs informed the public about their respite care ser-
Care Information                             vices were parent organizations, state-level departments, and handi-
                                             capped advocacy programs (see table 111.1).




                                             Page 26                                GAO/IiRDBO-125   Overview of Respite Care Pmgrams
                                          Appendix III
                                          Summary Information About 111 State
                                          Fbnded Respite Care Programs




Table 111.1:Principal Sources of
Information About Respite Care Services                                                                                 Number of
(FY 1988)                                 Information source                                                             programs
                                          Parent oraanrzations                                                                   76
                                          State-level departments                                                                74
                                          Handicapped advocacy Programs                                                         73
                                          School distnct special education programs                                             66
                                          Local public health departments                                                       61
                                          Crippled childrens’ proarams                                                          54
                                          Private ohvsicians’ offices                                                           53
                                          Neonatal hospital units                                                               52
                                          Radio, television, newsprint, or other media                                          50
                                           Parent or oarent-teacher oraanizations                                               46




                                          Of the 111 programs, 91 had eligibility or licensing requirements for res-
Provider                                  pite care providers. These included age, education, training, and
Requirements and                          licensing or certification by a profession or specialty, such as that
State Monitoring                          required for a nurse or social worker. To ensure quality services, 91 pro-
                                          grams monitored respite care providers by (1) requiring providers to
                                          maintain records of services provided, (2) following up with service
                                          recipients, and (3) making visits to sites where services were provided.




                                           Page 27                                  GAO/HIUMO-125 Overview of Respite Care Programs
Appendix IV

Number of State-F’undedRespite Care Programs
Having Certah Provider Eligibility or
Licensing Requirements
                                                                  No. of programs       havinq requirement
                                                             License or
               Location of program                         certification       &e          Education         Training
               Alabama                                                   1          0                  0                1
               Arkansas                                                  1          2                  1                1
               California                                                2          1                  3                3
               Colorado                                                  2          1                  1                3
               Connecticut                                               6          6                  5                7
               Florida                                                   1          0                  1                1
               Iowa                                                      1          0                   1               1
               Illinois                                                  4          6                   6               4
               Indiana                                                   1          2                   1               2
               Kentucky                                                  1          2                   1               2
               Louisiana                                                 3          3                   2               2
               Massachusetts                                             4          4                   3               3
               Michiqan                                                  3          4                   0               5
               Minnesota                                                 3          1                   0               2
               Missoun                                                   2          2                   1               3
               North Carolina                                            3          4                   4               4
               New Jersey                                                3          3                   2               3
               New York                                                  2          0                   3               3
               Ohto                                                      4          4                   3               5
               Oklahoma                                                  3          4                   3               4
               Pennsylvania                                              1          1                   1               1
               Tennessee                                                1          3                    1               3
               Texas                                                    2          1                    1               1
               Virqinia                                                 0          0                    0               1
               Washington                                               2          3                    1               2
               Totals                                                  56         57                   45              65
               Note: Of the 111 state-funded respite care programs surveyed, 91 had provrder eligibilrty or licensmg
               requirements; 20 reported no such requirements.




               Page 28                                       GAO/HRLMO-125 Overview of Respite Care Programs
Appendix V

Resultsof Questionntie Administered to
Officials of State-Funded RespiteCare Programs

                        United Sues   General Accoonting    OffIce
                         Survey of States
             GA!0




                        Programs That
                        Provide
                        Temporary
                        Relief Services




                    Page 29                                GAO/HRtMO-126 Overview of Respite Care Programs
                     Appendix V
                     Resnlt.9 of Questionnaire Administeredta
                     Officials of State-Funded Respite Care




                             U.S. General Accounting Office
                             Survey of State programs that
                           Provide Twporary Relief Services




The U.S. General &zcounting Office (GAO) is saying       state progrms that either
primarily  or in pert serve children age 21 Md younger, and as part of their
services, offer tenporary relief    to their parents 02 caretakers.    Generally,
this tanporary relief or “respite” is provided because the family members OK
caretakers are mder significant     stress or the children are at risk of abuse,
neglect, or out-of-home placensnt.
‘Ihe progrm shorn on ths label above was identified   as one program in your state
that furds or provides tempsrary relief to parents and caretakers   of children.
Please complete this questionnaire only for the program slum on the label.
Please return your caspkted questionnaire    in the enclosed preaddressed
business reply emelope within the next two weeks.     If you have any questions
about  this questionnaire or our study, please call ‘&d Boyden on (313) 226-4831,
Lisa Gardner on (313) 2264838 or Annette Gaziani on (313) 226-4834.       ‘obey will
be glad to help you. lbank you for your assistance.
W:        me~attbetopofthapages;tmuldcootain~miliog~~5rr
-l-w--                IfmyinBxmtimmtbalabalisirrorrect            rN----4-
tottKtri#ltofttrlaKd.




                      Page 30                                   GAO/HBD90125   Overview of Respite Care Progrsms
                                      Appendix V
                                      Resnlts of Questionnaire Administered to
                                      Officials of State-Funded Respite Care
                                      ~fv~




I.      mckqoml            IafomIticm
     1. Please provide the oame, title,                          3. (Continued.
        and telephone nubsr of ths
        imlividual  we should contact if                                                                            ---_
        additional  information is                                                                                    Yes                   Mis-
        required.                                                    Service                                                                sing
                                                                     ------------------                             >:I_
        Name:                                                        3. Ihdepemlent liv-
                                                                          ing skills                                        55        46      10
        Title:                                                       -----------m----m                              ---_                   ---_
                                                                     4.             Hcme health        care
        lklephcme                                                                  or      nurs1q     serv-                 51        49     10
        mr:       (               )                                                 ices
                                                                                                                     ---_
                                                                     5. Medical services
                                                                        (i.e., services                                     45        56     10
 2. Luring your fiscal year (FY) 1988,                                  provided by a
    did your program fund or provide                                    physician)
    temporary relief services mly or                                                                                 -m-m

    was temporary relief fur&d or                                    6.            Oxupatiohal or
    provided in addition to other                                                  physical therapy                     52            49      10
    services? (CHECK ONE. )                                                                                          ----        --        ----
                                                                     7.            Counseling
        Curing FY 1988, the program...                                             (e.g., family,                           71        30     10
                                                                                   individual,
        1. [lo]      fur&d/provided   tampmary                                     etc.)
                     relief mly                                                                                      ---         --
                      (Go 'IO QUKSTION4.)                            8. Other (PLEASE
                                                                        SPECIFY.)
        2. [lOO]funded/provided      temporary
                 relief   io additkm    to
                 Other   services                                   I- --------__-------                        I---.            --.       ---_
                  (Go 'IQ QUESTION3.)
        3. [ 11 Missirlg
                                                                    Mote:                  t&wthinkaboutyJuc
                                                                    -2                        tsqomuy relief
     3. Listed below are additiooal
        services that programs might fund
        or provide.   Please indicate
        whether or not your program                              4. In what year did your program
        generally funded or provided each                           first begin to fuhd or provide
        of these services during your FY                            tanporary relief services?
        1988.
        (CHECK"YES" OR "IX?' FOR KACH.)                             19 I
                                          ----  _-_   ----                               Before 1980            23
                                           Yes     No Mis-                               1980 - 1984            38
         Service                            (1)   (2) sing                               1985 - 1989           47
         --------------____               --m-w ----  --_                                                     108
         1. Child or day care                                                                                    3           Missing
              (e.g., ongoing               39       61     11                                                 iii
              child care)
                                          ----   _----   --___
         2.      Hmamker                   47       54      10
                                          -e-v   -----   -----

                                                           2




                                      Page 31                                                       GAO/HfUMO-125 Overview of l&spite Care Programs
                       Appendix V
                       Relnllts of QuestioNlaire Administeredt~
                       Offlcisls of State-Funded Respite Care
                       mrpams




5. Wing your fiscal year (Fy) 1988, did your program fund OK provide temporary
   relief services throughout your entire state or only in specific geographic
   locations?   (CHECK ONE.)

   Services wBre fmdsd/provided..      .
   1. [70] thmuqhout     the state
   2. [41] only in specific      geographic locations


6. Wring your FY 1988, did your program ever conduct outreach (e.g., ads in
   papers, posters, etc.) to identify parents eligible   for tenporary relief
   services?  yotr:   If your program conducted outreach for your services, in
   general, including taPporary relief sewices, check the “Yes” box.
   (CXXZK CUE. )

   1. r471 Yss


   3. [ 11 m ’t   Know
   4. [ 11 Missing
7. Ae of your Fy 1988, had any state legislation specifically    mandated your
   prcqrw to fund OK pOVi&    taaporary relief services?      (CHECKONE.)
   1. [191 Yes




                                             3




                       Page 32                                    GAO/IBUM@126 Overview of Respite Care Pmgram~
                       Appendix V
                       Remits of Questionn&e Administered to
                       OfTlcials of State-Punded Respite Care
                       pro(p9ms




8. Ws would like to know where parents ati caretakers of children                                could receive
   tmporary relief services that were funded or provided by your                                 progrm during
   your PY 1988. Dxing that year, were your program’s temporary                                  relief serv-
   ices delivered 1) only within ths parents and caretakers hams,                                  2) only out-
   side the parents and caretakers banes or 3) in both settings?                                  (CHECKONE.)
  Services were delivered...
   1. [15] only within      parents/caretakers        harm   (GO 10              QOESTION10 ON PAGE6.)
   2. [24) only outside parents/caretakers             haues -
                                                                       -->        (GO ‘ID QUESTION9.)
   3. [72] in both settings                                  - I




9. Please consider the settings -ido     of parents and caretakers hems where
   your program’s tenporary relief services ware delivered during your PY 1988.
   Curins that Year, were your rJro9ram’s tencorarv relief services 1) aenerallv,
   2) saGtimes-or   i) nevei delive&d  in each setting listed below.   -          -.
   (CHOCKONE FOR EMX. )
                                                                 ------             ----             --
                                                                 Zenerally Sanetimes   Never
                                                                 ielivered delivered ielivered                      Mis-
                                                                      in        in       in                         sing
                                                                  setting   setting   setting
      Setting                                                          (1)       (2)      (3)
     -----                    ------------______                 -----     ---       -------                       -----
      1. Licensed foster hmes                                           22        32     30                          12
     --------------_-_-_--------                                 -------   ------    ------mm                      -----
      2. lkmpnrary relief service providers’                         15                 39               34            5
           hams (other than foster banes)
     ---------------------                                       m--m-              -m-m--           -----         ------
      3. Parent ccqerative              (“coopn) mmbers’
                                                                           1              10              71         14
     ------1------------                                         _------            -------          m---m-_       .---I-
      4. Family day care homes                                             1              17              64         14
     ---I-----------                              --__-_         _--                -----            ----          -I---
      5. Relatives’ homes                                                5                35              41         15
     --                      --------------___--_                --------           ---mm            -----.        .-----
      6. Respite group homes                                             7                27              51         11
     -------                   ----------------m                 ------             --               ------.       .-----
      7. Crisis nurseries (exclude those located
           in a hospital)                                                    4               6           71          15
     -----1------------____I                                     ------             ------           ------        -------

                                                        Qmmtim         9 is amtim~3               on m        5.



                                                  4




                        Page 33                                                   GAO/HRD90-125 Overview of Respite Care Programs
                                 Appendix V
                                 Results of Questionnaire Administered to
                                 Offlciala of StateFunded Respite Care
                                 ~lpams




9. (Continued.)
                                                                       -----
                                                                       Zenerally      janetimes        Never
                                                                       klivered       klivered       klivered           Mis-
                                                                           in             in             in             sing
                                                                        setting        setting       setting
       Setting                                                              (1)                (2)           (3)
                                                                                      -----          -----              -----
       8. R?spite-oriented                      day care   centers               7           23          52                      14
     -1-----------------------                                         ----           m------m       -e-m-              ------
      9. General purpose day care centers                                        8           16              58            14
     -BP---                   ----------__--                           ------         -----          m---               m-e_
     .0. lherapautic preschools                                                  3           17              61             15
     -------                    -A------                               ------         -------        -----              -v-w_
     11. Cannunity residences (e.g., a residence
           for special needs persona which reserves                              4             40            40                  12
           beds for overnight or enargency respite)
     L2.   Kursing hams                                                          2         11                70                  13
     --------            -----------__-                                -------        -----_         -----
     L3. Pediatric hospitals       (i.e., a hospital
           that usually provides acute or long-                                  1             10            73                  12
           term care, but also provides overnight
           or emrgency respite)
                                                                                                     -----
     14. State institutions/schools                                              2         22                61                  11
     --------------------                                              -----          D-D--          ----
     15. alp                                                                     5             24            56                  11
     -------------------                                               -----          -----          -----              --_
     16. Churches/other religious                          buildings             0             14        69                  13
     me-------------------_I                                           -----          -----          m---m              ----___
     17. Public schools                                                     1                   9            72              14
                                                                       --B-w          ------         -----              ---_
     LB. Other (PLEASE SPECIFY.)

     -e----e----                 ------------                          ----.          -----          -----              -----




                                   Page 34                                           GAO/liRMW125                  Overview of Bespite Care Programs
                                       Appendix V
                                       Results of Questionnaire Administered to
                                       Officials of StateTunded Respite Care
                                       ~rpams




10. Listed below are types of temporary relief services your program may have
    funded or provided during your FY 1988. Please indicate whether each service
    was one your program 1) generally,  2) sanetimes, or 3) never provided to
    parents and caretakers during your FY 1988. (CHECKONE FOR EACH.)

                                                                         -----          ------    ----                  .----

                                                                       (Ienerally       SarIstimes Never
                                                                       IFrovided        ?rov ided xovided                    t&S-
                                                                         service         service   service                   Sins
      Service                                                                (1)              (2)      (3)
     .m---------------ll___--                                        . .----            -----     .--                   --

      1. Sitter services (i.e., tmporary child
          care)                                                              32              40              29                 10
     ------------------________                                      . _--------        ------                          ----
      2. Ccqanionship         (e.g., mentors, ‘big
          brothers,” etc.)                                                         9         28              64                 10
                                                                     . .m----           -----      --              ,-
        3. Personal care                                                         40           31        31                          9
                                                                     .                             -a--v           . .---
      4. Canping experiences
     --------------------I--                                         _ ----- 7          ------40   -----54         . .--- 10
      5. Social or recreational    programs                                   17              38        49                          7
     ------1--------------                                           _ -w-m--           ----       -----           . .----
      6. Short-term residential    care                                       24              35         42                     10
     -------------------_---------                                     ------           ------     _-----          . ._----
      7. Other (PLEASESPECIFY.)

                                                                         -------        -----                      .
         8. Other (PLEASESPZIFY.)

     ----------------______                                              -me---         ---mm--    m-e--


      9. Other (PLEASESPWIFY.)

     -----                      ---------------e-^                       ----m--        -----      -----


     10. Other (PLEASESPBIFY.)

                                                                                        -me--      ------




11. Curing your FY 1988, did your program offer parents and caretakers
    transportation  services betmen their banes and the settings here                                       tmnporary
    relief services were provided?   (CHECKONE.)
    1. [ 491 Yes




                                                            6




                                              Page 36                                  GAO/HUD3@126 Overview of Respite Care F’rogranu
                           Appendix V
                           Results of Questionnaire Administered to
                           Officids of Statehnded Respite Care
                           brpams




III.     Eligibility   k   w          relief   aarvicwl



       We would like to know what eligibility      criteria      parents and caretakers of
       children must meet to receive tmqrary        relief      services through your program.
       we recognize that your program could:
       1) only have general criteria  to receive services, that weld include
       temporary relief,
       2) only have criteria specific to receivihg temporary relief,   or
       3) both have general criteria  and criteria specific to receiving temporary
       relief.
       when answering questions 12 to 15 that follow, please consider M.L of your
       program’s eligibility  criteria, whether they were general or specific to
       tanporary relief services.

12. curing your FY 1988, did parents                 13. During your FY 1988, for what age
    and caretakers of children have to                   children did your progrw accept
    be formally referred to your                         parents  ad caretakers     of child-
    program to receive tmporary                          ren for tmpxary      relief sew-
    relief services or could they                        ices?
    directly   request services7
     ((HECK ONE.)                                         Fran    birth   to

       lb receive services,                               OR
       parents/caretakers.. .
                                                          Fran age               to
       1. [2g] w to be formlly
               r&erred to the program
       2. [130] could either be mfemaI               14. Curing your FY 1988, did your
                or B        services                     program have an incaae ceiling
                fran the program                         above which a parent or caretaker
       3. [ 21 Missing                                   of children would be ineligible
                                                         for taaporary relief services?
                                                          (CHECK WE.)

                                                              1. (161 Yes
                                                              2. (941 No
                                                              3. [ 11 Missing




                           Page 36                                        GAO/HRDSO-125 Overview of Respite Care Programs
                             Appendix V
                             Results of Questionnaire AdmUstered to
                             Of’flcids of StateFunded Respite Care
                             ~rpame




15. We would like to !mow tit     condition or conditions children were B        to
    have for their parents to be eligible    for twporary relief services during
    yax l?Y 1988. ‘Ib be eligible    for those services, did a child kve to have
    any of tk conditions listed below? (CRRCK“YES” OR “NO” FOR SXtl.)
                                                                        ---          -----       .   -




                                                                          Yes           M                    Mis-
      Did the child have to be...                                          (1)             (2)                sins
      ------m----v--                       --___-_____                  -e-D         ---         I   -       --
      1. developaantally      disabled (Please use Mlic       maw
           95-682 definition.      Include autistic  children) 7                45         65                      1
                                                                        ----         --          .   -




      2. behaviorally    or emotionally disturbed?                              30      81
      ----                ----            -----__ ---------_            ---          ----        .   -




       3. mentally retarded?                                                    38       73
      --                       ------m---                               ---          --          .   -




      4. medically handicapped (e.g., requires the services                     26       85
           of a licensed nurse or haas health provider as an
           alternative  to out-of-haw          placment)?
                                                                        --                       -   -




      5. physically handicapped (e.g., has limited strength,
         vitality,   or alertness due to an acute or chronic                    25         85                      1
         health problem) 7
      mm--                   ----------------------                     ---          --          .       -



      6. chronically    ill?                                                    17         94
                          ---------------m--m                           --                       -       -



      7. terminally   ill?                                                      14   -- 97       -       _   --
      8. foster     children?                                                   16       94                        1
                                                                        ----_        ---.        _       -   --
      9.   teen   parents?                                                       2     105                         4
                                                                        --we-        --.         -       _   --
      LB. protected by Child Protective Services?                               15       95                        1
     ------                   -------------------e                                               -       _   ---
     ~1. at risk of abuse or neglect (not protected          by                            89                      1
           mild Protective Services)?
                                                                                     ----                    --
     12. other      (PLFASE SPIXIFY.)?

                                                                                                             --




                                                 8




                             Page 37                                  GAO/HRB9&125               Overview of Respite Care Programa
                           Appendix V
                           Results of Questionnaire Administeredto
                           Offlclds of State-Funded Respite Care
                           l+-w-




16. Listed below are sources thrcugh which programs might tell parents or
    caretakers about tenporary relief services.   Ouring your FY 1988, did your
    program 1) generally,  2) sanetimes, or 3) never use each source listed below
    to tell parents about your tmporary relief services?     (CHDZKONE FOR EACH.)
                                                              ------
                                                              Sanerally             Sanstimes          Never      I+lissing,
                                                                 used                 used             used       Ckm't
                                                               source                sollrce           source     F;now
       Source                                                       (1)                     (2)         (3)
     --        ------------------_                            -w--m-                                               I_-.
       1. Mac-natal hospital units                                  13                      39               43     O/16
     ------------------                                       -----                 ----              ----         ----_
       2. Mxsing Associations                                        9                      31           52         o/19
     -----                         ---e-----------            ------                -----            ,----         -__-.
        3. School district            special education             19                      47           34         o/11
            progr-
     ---                           ------w--_-_-              ----                                   --v-m         -----.
       4. Local public health departments                               18                  43           38         o/12
     ----                                ---e------m          -----                 ----             ---
        5. Private physicians’offices                                7                   46              43         o/15
     --               --1------------_                        _-------              -----m-e
       6. Parent organizations                                     32                    44                27       5/3
     m--P-P---------                                          ------                ----              .----mm      ----.
        7. Hardicapped advocacy program                            28                    45                32       412
                            --1--------                       ----_                 -----mm         - .-----
       8. Crippled childrens’ progrms                               24                   30                41        g/7
     --                                  ----------m          -----_                                --w-m-_        -----
       9. Radio, television,               newsprint, other         18                                     50        ‘25
            media
    ,-------------------II                                                                        - ------        I-----
    110. Other state level departments                                                                       28      W
     ------                           ---------m-m.                                               _ -----         ------_
     11. Parent or parent teacher organizations                                             32               50   10/s
             (e-g, PITis, etc.)
     --1----------------__________I                                              --me--.          - -----__       ------.
     12. Clergy                                                                        35                 56        g/7
     ---                     ----------_-----                 ----~              -----.              --mm-_.      -------
     13. Civic associations                                          7          ’ 30                      58        g/7
     --P--------------v--                                     --------          I
                                                                                                     ------me.    -------
     14. Informal neighborhood groups or                             8                      35            53        g/6
           associations
     --------mm----                  -_----__                 ----           -. -------.          _ ------
     15. Other (PLEASE SPECIFY.)

     -----a---                    -------_-_---               ------~               ---m-m.          -----




                                                    9




                           Page 38                                             GAO/HRD-sQ125 Overview of Respite Care Programs
                             Appendix V
                             Results of Qoestionnrire      Administered to
                             Offlcisl~ of Stat&‘unded      Respite Care




   We would like to knew whether your program charges parents and caretakers
   for tmporary relief services and what factors are considered when determin-
   ing what parents will pay for these services.  We recognize that your prcgrm
   could:
   1) charge for services in general, including tenporary                    relief,
   2) only charge for tmporary relief services,
   3) charge both for services in general and specifically                    for temporary relief,
   or
   4) not charge parents for any services.

   when answering questions 17 to 19 that follow, please consider AU fees
   parents and caretakers paid to receive services through your program during
   yaur E’Y 1988, whether they wsre fess for services, in general, or spacific-
   ally for temporary relief.

17. Wing your PY 1988, did your program charge any parents for teuqrary                            relief
    services? (CHECKONE.)
    1. (321 Yes (GO To QUESTION18.)
    3.   [7g]    No    (a,   TO   QUESTION20 ON PAGE12.)


18. Please indicate which statement below best describes                 how your program charged
    parents and caretakers for tenporary relief services                 during your FY 1988.
    (PLEASE REV154 EXCHSTATWENT, THEN CHECK ONE.)

    1. [ 21 All parents were charged the cla munt                    for services      (e.g.,    a flat
            fee)   (a, ‘ID QUESTION20 ON PAGE 12.)

    2. [a 1      a      parents     were    not charged for services, all     otbr     parents    were
                 Charged    th     sllh    amOunt (a, ‘I’0 QUESTION19. )
    3.   bo     I U    parents were mt chargsd for services, otbr parents were
                 charged  diHermt   mounts based on a sliding scale
                  (Go TO QUESTION19.)




                                                      10




                              Page 39                                        GAO/HRDB@l25 Overview of Respite Care Programs
                         Appenitlxv
                         Eemlluof Questionnaire  Mnlinlsteredto
                         offlchla of sate-Pended %plte care




19. Wo are intuemtd    in how you dcidd   how mch or whethex to charge parents
    and camtakar    for ta~~rary  relief servims.  Ruing your E’Y 1988, did you
    considar each fectot below when making thst decision?
    (CHBX “YEE” CU “WY’ FOR WX        FmR.)

                                                                          ---
                                                                            Yes  t&    uis-
       Fsctor                                                            I (1) I (2) I sins
     1. Fmily    incwe                                                   1 26 1         2 1 2
     2. Fmlily   -                                                       I 12 I 15 I              3
     3. Ewlily   expmem                                                  i 16 1 11                3
     4. Size of family                                                        21        5         4
                                       --                        -----
     5. Type of Mmioe       rqmetd                                            13      12          5
                                                            --me-         -         m         -
     6. W&er     or fraqumcy    of servicw    requuted
                                                 p---                     -- 12     - 13      - 5
     7. Codition of child for tiich service   were requested                  5         21      4
                                                         II---
     8. t&hez of children for which servicea were raquetatd                    14       13        3
                                              -----I_                     --        -         -
      9. 0th~ (PtPUBE 8PiFXFy.)

                               ---                       -----            --        -         -




                                              11




                          Page 40                                   GAO/HIKM@12g             Overview of lte@te Cue Pmgmm~~
                             Appendix V
                             Resulta of Questionnaire Administered to
                             Officiala of State-Funded Respite Care
                             hlpams




V. Eligibility  oaqv’     -efor~relief
   aerviapmvidem      admnitnriq

20. curing your FY 1988, did your program have any eligibility or licensing
    requiranents for the people who actually provided tmporary relief services
    (e.g., nurses, haae health aides, etc.)?   (CHECKONE.)
    1. (911 Yes (Q3 To WESTION 21.)
    2. [20) No          (GO ‘IQ QUESTION22                               ON    PAGE13.)


21. Listed below are types of eligibility  or licensing rquiraments.     l&ring your
    FY 1988, did any of the people ho provided your progrm’s     tmporary relief
    services have to meet any of the requirements below.
    (CHB=KYES OR NO FOR FACH.)
                                                                                                               ----   --
                                                                                                                Yes M                * -
               Did any tmporary                relief               providers             have to...              (1)    (2)    kxg
                                                                                                               --     --
     1. be licensed/certified    in a specialty (e.g., a licensed                                                56      35
         practical nurse, registered nurse, foster parent, etc.)
     -----------mm                 ------------                                                            .   ---   ---        --
     2. be of a certain age (e.g., must be 21 years of age)                                                      57    33             1
                                                                                                               m-m ---          -
     3. have a specific                  mmmt                     or kind of education                           45    44             2
                                                                                                               v---m   -m-v     -


     4. have a specific amunt or kind of training                                                                65    25             1
     ------------------------------                                                                                  ----       --
     5. Other (PLEASESPECIFY.)

     --v--w-                  --------------_-----------------                                                         ---      -
     ,6. Other (PLEASESPDXFY.)

     ------                                                      I----------------                                     ----     I-
     7. other         (PLEASESPaIPY.)

                                                                                                                       ---




                                                                                     12




                             Page 41                                                                   GAO/liRDWl26            Overview of Respite Cue Progmma
                               Results of QuestioNlaire Admhbtered t.0
                               Offlcida of State-Funded Respite Care
                               prorpams




22. During your PY 1988, did your prcgrap ever monitor temporary relief service
    providers (e.g., mske site visits,  review reports, etc.) Rate: If your
    program monitored tmpurary relief providers as part of a general monitoring
    effort,  check the VqYes’box.
                             O      (CHDZKCNE.)
      1. (911 Yes (a, TO QWSTICN 23.)
      2.     [18]   No   (GO To QUESTION24 ON PAGE14.)
      3.     [ 21 Missing

23.   Listed below are nethod~ that could bs used to monitor tqxxary   relief
      providers.  Pleass indicate whether or not your program used each method
      during your PY 1988. (CHECKONE FOR EACH.)

                                                                                YeS         m      Mis-
            kwhcd                                                               (1)         (21 I sing
           ---      ------                                  ----
             1. Required providers     to suhnit   repxts                        68         22         3
                                                         ----              ---        ----         -
            2. Hsde site    visits   where services   were providsd              71         19         3
                                                                           ---        ---
             3. Ma& site visits to service providers’ a&ninistrat-               55         34         4
                  ive offices
           I-P------                     1----------
             4. Pollmad-up    with parents who received services                 76         15         2
           -I------------                            -------               --         ---
             5. Rsquirad providers to maintain records of services               80         11         2
                 provided
           ----                          m------~--                        --
             6. Other (PLEASESPECIFY.)


                                                                           -----      ---          P




                                                      13




                                Page 42                                  GAO/HRD90425            Overview of Respite Care Pmgrams
                               Results of Questionnaire Administered to
                               Offlci& of State-F’unded Respite Care
                               pro(pM1B




24. Please recmd your prcgram~s total expenditures for tmrprary     relief service
    for your FY 1988. FUo, please record about how nuch of ths expended fuxds
    were fran each of ths sourcss listed below (e.g. federal, state, etc.)?
     (Please consider all direct and itiirect  expmaes, e.g., permnnel, overheedr
    etc. and record actual nurhers or reasonable estimates;   if nscessary, record
    a per=tage.      If infomation is unavailable, check the Don’t know “O/K”
    box.)
                                                                                     --
                                                                   Dollars              Per-
                                                                   acpanded          -tase


    I1. ‘Ibtsl
         --Iuy*-
                    Fy 1988 expenditures

        a. Faderal govermmnt fmds
                                              for ywr
                                                              1
                                                               8
                                                                                 I
                                                                                     l ******
                                                                                     l ******



                                                                                                %
                                -m--m                         I s 6,710,OOO      I
        b. State govemumt funda                                 8 76,320,OOO                    %
                       e-------                                 ----                 -w
        c. racal govanrment funds                               3      250,000                  0
                     P-B---                                     ----I-               -_I
        d. Pess from parents                                    8      190,000                  %
                                                                ---                  ---
         e. Other (PLEASESPECIFY.)                              8      400,000                  %


    ‘NOtt3: ltle       total    of la - le should equal           $83,870,000              190%
                   “1 - lWA      FY I.988 afipanditures for   I ----             I-
                   your m             mlid    W”


25. Curing your FY 1988, YSBBthere a “cap* on the total mount of funds that your
    program had available for tmporary relief services?   (CHEK ONE.)
    1. [711 Yes
    2. (371 No
    3. [ 31 Missing




                                                    14




                                P8ge 43                                   GAO/liRIMW133             Overview of Reepite Care Programs
                               Appendix V
                               Resulta of Questionnaire Admtnistered to
                               Offlcida of StateF’unded Respite Care
                               bgnuns




26. We would like to know how your program paid providers for tanporary relief
    services during your FY 1988. Please indicate if your prcgrm 1) generally,
    2) sanetimes or 3) never used each method listed below to pay providers for
    tempxary relief services during your FY 1988. (CHECKONE E’OREACH.)
                                                                            -----         __-----
                                                              Snerally      saletilnes      Never
                                                                 used          used          Used        MiS-
                                                               methcd        method        method        Sins
      nethod                                                       (1)              (2)         (3)
     -----I_------------------                                ----                        -----
      1. Qve parents and caretakers cash
           subsidies to purchase temporary relief                    10             13             81           7
           services.
     -------------e-B-----                                    ----          -----         v---w
      2. Directly paid providers of tmporary                         62             15        29                5
           relief services.
     -I------------------_I_____                              ---           -----         -------       --
      3. Rovided money to a fiscal agent that
           paid providers.                                            37      11                   57           6
                                                                            mm---
         4. Other (PLEASESPDXFY.)

     --------e-------------m                                  -----                       _-em--




                                                   15


                                                                                                                        J



                               Page 44                                     GAO/HRD4W125 Overview of Respite Care Programs
                          Appendix V
                          Ralllts of Queati-             Administered to
                          Offld&     of StateFunded      l&spite   Cam




27. We uould like to know tit   kinds of information statm maintain on pwple
    that reqwfat or receive temporary relief amfias.      C&es your program h8ve
    any dmfa on the m ’     of pmple who roquemtod or r-i-fed    taaporary relief
    arvices during your FY 19881 (CtfEK ONB.)
    1. (761 YeS (GO To QUESTIOW28.)
    2. 1351 ND (GO ‘IO QUESTION31 ON P&GE 17.)


28. Please record the infornvtion   r-t&                 below for your FY 19B8. Ig rmr,
    m     8 -m.- Iflppamtproriba-~,                                         drrlrumTha%
    kmeboa.
        In total,    hov Illany...                                                       Don’t lolar
     A. Families    m         temporary relief
        aervico8    fram your program?                                   10,163
                                                                                        --
     b. Childron    ure     in them fumilia?                              5,249
                                                                    -
     c. papilioa    -ml            tmqmrary    relief                    45,712
        muvicu?
                                                                                        1-
     d. Olildron    ore     in thme families?                            29,309
                                                                                  -Pm


29. Does your progrm hava any informmtion on tin dmcetuistia       (o.g.,  rata,
    i-,     etc.) of the faniliu   who rm        OR rmcoivd trPpDrary roliof
    arvicu    (e.g., the fauiliea you rocadod for qmstion 2L or 28~ above)?
    1. (461   ra

    2. [291 wo
    3. [ 11 MiMing

39. Dou your program hava any informtion   on tbm dmrrt.oriatia  of the &U&a
    in frnilir   rho ram&d  services during FY 1988 (the childrm enterad  in
    ita2wnbove)?
    1. [491 Ym
    2. 1291 No
    3. [ 11 Missing




                                                    16




                          Page 45                                           GAO/HRD-WlgS      Ovewieu of Respite Care m
                         Appendix V
                         Results of Questionnaire Administered to
                         Officials of State-Funded Respite Care
                         l+w-




31. Owing your E’Y 1988, did your prcgran ever refer any fwilies                                      to other
    prograns for tmqorary relief services?    (CHEx=KONE.)
    1. (771 Yes (GO l’0 QUE8TION32.)
    2. [28] MI (a, To QUESTION33.)
    3. [ 61 Missing

32. Listed below are reasons why program might refer parents or caretakers to
    other prcgrms for tanporary relief services.   Please consider the parents
    and caretakers your program referred to other programs for tmqorary relief
    services during your FY 1988. About what proportion of these parents and
    caretakers did your program refer for each reason below? (If necessary,
    please use the Don’t know W/K” box.)    (CHDX ONE FOR WCH.)

                                                     dl 01      Most            About                     FeW
                                                     lllwst                     half                        or              Mis-
                                                      all                                                 none              Sins
     Reason for referral                              (1)        (2)                 (3)    (4)            (5)       (6)
     ---                   -1-------                 .-         --             ---         --            .-
     L. Parents/caretakers           were
                                                           7           4              1       20           27                    24
         ineligible     for services
     --            ----                              ---        ---        ,   ---         ---           m-w-              --
     2. Parents/caretakers           had special
         service needs for teqorary            re-         4           4              1          26            25                23
         lief (e.g., child had a partic-
         ularly disabling or unique
         condition)
                                     ---             --         --             --_         --            ---
     3. Parents/caretakers           requested
         more services than were avail-
         able through program                              6           5              2          31            16                23
                                                     --         --             ---         ---           --                ---
     4. Nnber of parents/caretakers
        requecating services was greater                   10         10              3          16            25                19
        than the supply of services
                           ---                       --.        ----           --.                       -I--
     5. Dtber (PLEASESPECIFY.)


                                                     _-.        --                                       ---



33. Curing your Fy 1988, did y-our program ever maintain                             a waiting list             of
    fmilies  that requested tmporary relief services?                                (CHlXX ONE.)
    1. [401 Yes (Go lo QUESTION34.)
    2. 1691 No       (00 To QUESTION37 ON PAGE 19.)
     3. [ 21 Missing

                                                     17




                          Page 46                                                      GAO/HlUMO-1’25 Overview of Respite Care Programs
                           Appendix V
                           Results of Questionnaire Administered to
                           Officials of State-Funded Respite Care
                           ~(pams




34. During your l?Y 1988, in total, about how many families were ever on your
    waiting list for wrary       relief services? (If you cannot provide an exact
    nunber or a reascnable estimate, please check the Don’t know box.)

      3,671        Fanilies    on a waiting   list
    OR [      ) Ccn’t know


35. Please consider the families you recorded in question 34 above. @I average,
    how many weeks did these parents remain on your waiting list before receiv-
    ing tmpcrary relief services?    (If you cannot provide an exact nunber or a
    reasonable estimate, please check the Don’t knew box.)

                Average nmber of weeks
    OR [      ]Don’tknow


36. As of your E’Y 1988, did any state legislation limit the nunber of families
    that could receive your program’s texporary relief services?    (CHDCKORE.)
    1. [ 51 Yes

    2. [36) No
    3. [ 11 Missing




                                                 18




                           Page 47                                    GAO/HRINW125   Overview of &spite Cam Programs
                             Appendix V
                             Resnlta of Questionnaire Administ.ered to
                             Offlci& of State-Funded Respite Care
                             l+oIpgms




VIII.        OIbr
37. Have any studies heen conducted on the effectiveness   of your tmporary
    relief services in mseting your program’s objectives   (e.g., reducing stress
    or abuse, ke&ng families together, etc.)?      (CHDZK ONE.)

        1. a4 ] Yes (PLEASESENOUS A COPYOF ANY SUCHSTUDIES.)
        2.    [es1   NJ
        3.    [ 21 Missing

38. Does your program have a list         of your temporary relief       service providers?
    (CIWK  ONE.)
        1. [39] Yes (PLEASE SW US THIS LIST To HELP US IDEWPIE’YLCCAL LEVEL
                CONTACTSFOR A NATIONALDIRBXORY OF PRCWIDERS.)



        3.    [ 21 Missing


 39. Plesse use ths spmce below for any additional           canmnts you might have on
     ixnpxazy  relief servicee, this qwstiomaire             or our study.




                                                 19




                             Page 48                                     GAO,‘HRD~12S     Overview of Respite Cue Pmgrams
Appendix VI

Number of Lad Chapters of Nationd
Organizations With Respite Care Programs,
by State(FY 1989)

                                                            United
                       National                          Cerebral         National                             Visiting
                                                             Palsy           Down        The National            Nurse
                         Eaz                         Association,       sY;T$r;            Council on     Association
State                   Society          yiyet                  inc.                      Aaina. Inc.b     of America               Total
Alabama                           1              1                 4             0                    0                   1              7
Alaska                            0              0                0              0                    0                   0              0
Arizona                           0              0                0              0                    0                   0              0
Arkansas                          1              0                1              0                    0                   1             3
California                        1              9                5              1                    2                   7            25
Colorado                          0              3                0              0                    0                   4             7
Connecticut                       1              1                0              0                    1                   0             3
Delaware                          1              0                 1                 0                0                   1             3
District of Columbia              1              0                 0                 0                1                   1             3
Florida                           0              5                 3                 2                1                   9            20
Georgia                           0              2                 1                 0                0                   1             4
Hawaii                            3              0                 1                 0                0                   0             4
Idaho                             0              1                 0                 0                0                   0              1
Illinois                          2              5                 2                 0                0                   6            15
Indiana                           0              2                 0                 0                0                   5             7
Iowa                              2
Kansas                            0              1                 0                 0                0                   0              1
Kentuckv                          1              0                 0                 0                n                   1              2
Louisiana                         1              3                 1                 0                0                   0              5
Maine                             0              2                 1                 0                0                   1              4
Maryland                          0              2                 2                 0                0                   0              4
Massachusetts                     0              1                 0                 0                0                   3              4
Michigan                          1              4                 1                 0                0                   7             13
Minnesota                         0              3                 0                 0                0                   0              3
Mississippi                       0              0                 0                 0                0                   0              0
Missouri                          0              1                 1                 0                0                   5              7
Montana                           0              0                 0                 0                n                   n              0
Nebraska                          0              1                 0                 0                1                   1              3
Nevada                            1              0                 1                 0                0                   0              2
New Hampshire                     1              1                 0                 0                0                   1              3
New Jersey                        0              1                 3                 0                0                   2              6
New Mexrco                        0              1                 I)                n                n                   n               1
New York                          1              3                 8                 2                0                   4            18
North Carolina                    2              0                 0                 0                0                   0               2
North Dakota                      1              1                 0                 0                0                   0               2
Ohio                              4              1                 2                 0                1                   2            10
Oklahoma                          0              1                 0                 0                0                   1               2
                                                                                                                              (continued)



                                      Page 49                                  GAO/HlUMW125       Overview of   RespiteCare Programa
                            Appendix Vl
                            Number of Local Chapters of National
                            Organimtiona With Respite Care Programs,
                            by State (F’Y 1989)




                                                        United
                 National                             Cerebral       National                            Visiting
                                                          Palsy         Down        The National           Nurse
                  Eat&i                           Association,     Syndrome           Council on    Association
State            Society            cffiye!                 Inc.      Society        Aging, Inc.b    of America         Total
Oregon                      2             4                    0            0                   0                   1       7
Pennsylvania                1             3                    4            0                   0                   8      16
Rhode Island                0             1                    0            0                   0                   2       3
South Carolina              0             0                    0            0                   0                   0       0
South Dakota                1             0                    0            0                   0                   0        1
Tennessee                   1             1                    1            0                   0                   2        5
Texas                       I             9                    0            0                   1                   5      16
Utah                        1                 0                1                0               1                   1        4
Vermont                     0                 1                0                0               0               0            1
Virginia                    3              1                   0                0               0               0            4
Washington                  0             10                   0                0               0               1          11
West Virginia               0              0                   0                0               0               0            0
Wisconsin                   1              0                   6                0               1               3          11
Wyoming                  0                 1                   0                0               0               0             1
Puerto Rico              0                 0                   0                0               0               0            0
Totals                  37                90                  50                5              10              67         279
                                3pecial Sitters Program
                                bFamily Friends Program




                                Page 50                                   GAO/HRIMO-125 Overview of Respite Care Programs
Appendix VII

Federal Respite Care Grants Awarded,
by State (1983-89)


                           Department of Health and
                                 Human Services
                                Under P.L. 99-401                       Department
State                      Section 204*    Section 203b     OtherC     of Education        Action              Total
Alabama                               0                1          0                   0             0               1
Alaska                                0               0           1                   0             0              1
Anzona                                 1              0          0                    0             0               1
Arkansas                               1               1         0                    0             0              2
Californra                            2                1         1                    1             0 __.-.-        5
                                                                                                                   -~
Colorado                              1                1         1                    0             0               3
Connecticut                           1                1         0                    0             0               2
Delaware                              0                1         1                    0             0               2
Drstnct of Columbia                   0                0         1                    1             0               2
Flonda                                1                2         0                    0             0               3
Georgia                               0                1         0                    0             0               1
Hawaii                                1                1         0                    0             0               2
Idaho                                 2                0         0                    0             0               2
Illinois                              1                1         0                    0             0               2
Indiana                                1               0         0                    0             0               1
Iowa                                   1               0         0                    0             0               1
Kansas                                 0               1         0                    0             0               1
Kentucky                               0               0         0                    0             0               0
Louisiana                              1               0         0                    0             0               1
Maine                                  0               0          1                   0             0               1
Marvland                               1               0         0                    0              0              1
Massachusetts                          0               2         2                     1             0              5
Michigan                               1               1         0                    0              0              2
Minnesota                              0               0         0                    0              0              0
Missrssippr                            0               1          0                   0             0                  1
Missoun                                1               1          0                   0             0                  2
Montana                                0               0          0                   0             0                  0
Nebraska                               0               1          1                   0             0                  2
Nevada                                 1               0          0                   II            0                  1
New   Hampshire                        0               1          0                   0             0                  1
New   Jersey                           1               1          0                   0             0                  2
New   Mexico                           1               0          1                   0             0                  2
New   York                             0               1          3                   0             1                  5
North Carolina                         2               2          0                   0             0                  4
North Dakota                           1               1          0                   0             0                  2
Ohio                                   1               0          0                   0             0                  1
Oklahoma                                                                                                               2
Oregon                                 1               0          0                   0              0
                                                                                                         (continued,



                      Page 51                              GAO/HIDSo-125   Overview of Respite Care Programs
                 Appendix VII
                 Federal Respite Care Grants Awarded, by
                 state (1982-89)




                        Department of Health and
                              Human Services
                             Under P.L. 99-401                                   Department
State                   Section 204.    Section 203b               OtherC       of Education          Action       Total
Pennsvlvanra                           1                  1             0                         0            0       2
Rhode Island                           1                  1              0                        0            0       2
South Carolina                         1                  0              0                        0            0       1
South Dakota                           0                  0              0                        0            0       0
Tennessee                              0                  2              0                        0            0       2
Texas                                  1                  1              0                        0            0       2
Utah                                   1                  0              0                        0            0       1
Vermont                                0                  1              0                        0            0       1
Virginia                               0                  1              0                        0            0       1
Washington                                 1              0               1                       0            0       2
West Virginra                          0                  0              0                        0            0       0
Wisconsin                                  1              0               1                       n            n       2
Wyoming                                0                  0              0                        0            0       0
Puerto Rico                            2                  0              0                        0            0       2
Totals                                35                 32             15                        3            1      66
                 aCrisis nursery grants.

                 bGrants for temporary child care for handicapped and chronrcally ill children.

                 ‘Grants awarded by HHS’s Administration on Developmental Disabilities and Administration for Chrl-
                 dren, Youth, and Families, both under the Office of Human Development Services.




                 Page 52                                        GAO/HRB9@125 Overview of Respite Care Programs
Appendix VIII

Comments From the Department
of Health and Human Services


                                                                                                                          1
                       DEPARTMENTOF     HEALTH   6a HUMAN   SERVICES                     Ollce   of Inspector   General



                                                                                         Washmgton.
                                                                                                 DC 20201




                Mr. Franklin     Frazier
                Director,    Income Security          Issues
                United States General
                   Accounting    Office
                Washington,     D.C.     20548

                Dear     Mr. Frazier:
                Enclosed are the Department's     comments on your draft     report,
                "Respite Care:    An Overview of Federal,   Selected State, and
                Private  Programs.18 The comments represent     the tentative     position
                of the Department and are subject to reevaluation       when the final
                version  of this report   is received.
                The Department appreciates   the opportunity                to comment on this
                draft report before  its publication.
                                                            Sincerely   yourt3,




                Knclomre




                        Page53                                  GAO/HRDW125       Overview of Respite Care Programs
          Appendix Vlll
          Comments Prom the Department of Health
          andHumanSefices




      EOMMENTS OF THE DEPARTMENT OF HEALTH&ND HUMAN SERVICE8 ON
   THE  U.S. CXzNERAL ACCOUNTING OFFICE'S REPORT, "RESPITE CARE:
   AN  OVERVIEW OF FEDERAL, SELECTED STATE, AND PRIVATE PROGRAMS"
                                  /GAO/HRD-90-125)


General     Comments
Generally,  we agree with the information    and suggestions   in t?he
report for improving respite care services.      Although data on the
use and availability  of respite   care services are lim ited,   it is
clear that there is a need and a demand for these services.
Under Public Law 99-401, the Temporary Child Care and Crisis
Nurseries     Act, and Public Law 101-127, the Children with
Disabilities      Temporary Care Reauthorisation             Act of 1989, the
office     of Human Development Services            (OHDS) has funded 67
demonstration       grants in fiscal       years (PI) 1988 and 1989 and
expects to make additional           grant awards in FY 1990.              The purpose
of these projects         is to provide     respite     care to disabled
children:     children      with chronic or terminal         illnesses;      and abused
and neglscted       children,    including     thoss at risk       of abuse and
neglect.      Public     Law 101-127 also requires          States to begin data
collection     as a step toward       evaluating      ths effects      of respite
cars prqgrams.         In addition,     ths 1988 and 1989 projscts             which
OHDS funded are voluntarily           participating       in an independent
assessment which should be complsted by the end of 1990. At that
time, OHD8 will be able to provide               some basic program         data,   with
the expectation        of a more complets l valuativo            capability     in
fiscal     year 1992 when the law's data collection                requirements      have
taken full     effect.
The draft     report    acknowledges that information      on respite     care is
limited     regarding     the supply of services available,        the number of
families     served,    the extent of unmet demand for semices,           and the
efficacy     of the services      rendered.    The draft  report's
suggestions       for  improving services should be contingent          on the
availability        of additional    data before formulating     public
policies.




            Page 54                                GAO/HID9M25   Overview of Respite Care Progranx
Appendix IX

Major Contributors to This Report


                                               mmtant
                             David P. Bixler, 1’      .  Director, (202) 275-86 10
Human Resources              Daniel M. Brier, 1hcciftsnt
                                                -Uw.wV-.Unirortnr
                                                         -.. VUVV-
Division,                    Patricia A. Cole, Assignment Manager
                             Joanne R. Frankel, Technical Advisor
Washing$on, D.C.

                             William F. Laurie, Evaluator-in-Charge
Detroit   Re@onal   Office   Theodore F. Boyden Site Senior
                             Lisa P. Gardner, Staif Evaluator
                             Annette S. Graziani, Staff Evaluator




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(105451)   Page 66                         GAO/HRD9@125 Overview of Respite Care Prograrr
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