SSI Children: Multiple Factors Affect Families' Costs for
Disability-Related Services (Chapter Report, 06/28/1999, GAO/HEHS-99-99).

From 1989 to 1996, the number of children under age 18 receiving
Supplemental Security Income (SSI) benefits more than tripled--from
265,000 to 955,000. Benefit payments rose from $1.2 billion to about
$5.2 billion. The growth in rolls and allegations that some parents were
coaching their children to feign disabilities in order to receive SSI
benefits have raised concerns about the children's component of the SSI
program. Congress required GAO to study and report on the
disability-related expenses incurred by families of children on SSI that
are not covered by federal, state, and local programs serving children
with disabilities. This report (1) examines the disability-related costs
that families of children on SSI incur and the factors that influence
the level of such costs and (2) identifies factors affecting families'
receipt of disability-related services from programs.

--------------------------- Indexing Terms -----------------------------

 REPORTNUM:  HEHS-99-99
     TITLE:  SSI Children: Multiple Factors Affect Families' Costs for
	     Disability-Related Services
      DATE:  06/28/1999
   SUBJECT:  Disadvantaged persons
	     Income maintenance programs
	     State-administered programs
	     Surveys
	     Disability benefits
	     Social security benefits
	     Health care programs
	     Children with disabilities
	     Health care costs
	     Health care services
IDENTIFIER:  Supplemental Security Income Program
	     Medicaid Program
	     SSI
	     National Health Interview Survey
	     Florida
	     Early and Periodic Screening, Diagnosis, and Treatment
	     Program
	     Children's Health Insurance Program

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    United States General Accounting Office GAO               Report
    to Congressional Committees June 1999         SSI CHILDREN
    Multiple Factors Affect Families' Costs for Disability-Related
    Services GAO/HEHS-99-99 GAO United States General Accounting
    Office Washington, D.C. 20548 Health, Education, and Human
    Services Division B-276532 June 28, 1999 The Honorable William V.
    Roth, Jr. Chairman The Honorable Daniel Patrick Moynihan Ranking
    Minority Member Committee on Finance United States Senate The
    Honorable Bill Archer Chairman The Honorable Charles B. Rangel
    Ranking Minority Member Committee on Ways and Means House of
    Representatives This report, entitled SSI Children: Multiple
    Factors Affect Families' Costs for Disability-Related Services
    (GAO/HEHS-99-99), responds to the mandate in Public Law 104-193,
    the Personal Responsibility and Work Opportunity Reconciliation
    Act, that we report on the disability-related expenses incurred by
    families of children on Supplemental Security Income (SSI) that
    are not covered by federal, state, and local programs serving
    children with disabilities. In this report, we provide data on
    families' total annual disability-related costs and the factors
    that influence the level of such costs. We also identify factors
    affecting families' receipt of disability-related services from
    other programs. We are sending copies of this report to The
    Honorable Kenneth S. Apfel, Commissioner of Social Security; The
    Honorable Richard W. Riley, Secretary of Education; The Honorable
    Donna E. Shalala, Secretary of Health and Human Services; and
    others who are interested. We will also make copies available to
    others upon request. Please contact me on (202) 512-7215 if you or
    your staff have any questions concerning this report. Other GAO
    contacts and staff acknowledgments for this report are listed in
    appendix III. Cynthia M. Fagnoni Director, Education, Workforce,
    and Income Security Issues Executive Summary Purpose       The
    Congress established the Supplemental Security Income (SSI)
    program, which is administered by the Social Security
    Administration (SSA), in 1972 to provide cash payments to aged
    individuals and blind and disabled adults and children with
    limited income and resources. Families of children receiving SSI
    benefits may spend these cash payments for any purpose that meets
    a child's current and future needs, including food, clothing,
    shelter, and utilities, as well as disability-related services.1
    In addition to these cash payments under the SSI program, families
    can obtain disability-related services through other programs.
    From the end of 1989 through 1996, the number of children younger
    than 18 receiving SSI disability benefits more than tripled, from
    265,000 to 955,000, and benefit payments increased from $1.2
    billion to about $5.2 billion. This growth in the rolls, and
    allegations that some parents were coaching their children to
    feign disabilities in order to receive SSI benefits, caused
    concerns about the children's component of the SSI program.2 In
    this context, during the debate that led to the passage of the
    Personal Responsibility and Work Opportunity Reconciliation Act of
    1996 (P.L. 104-193, commonly referred to as welfare reform), some
    members of the Congress expressed uneasiness about how families of
    children on SSI used their cash benefits and introduced provisions
    substituting disability-related services for the cash benefits. As
    ultimately enacted, the law did not replace cash benefits with
    services for children. Instead, the law mandated that GAO study
    and report on the disability-related expenses incurred by families
    of children on SSI that are not covered by federal, state, and
    local programs serving children with disabilities. In response to
    this mandate, GAO (1) examined the disability-related costs that
    families of children on SSI incur and the factors that influence
    the level of such costs and (2) identified factors affecting
    families' receipt of disability-related services from programs.3
    1In most cases, a disabled child's SSI benefit is paid on behalf
    of the child to a "representative payee," such as a parent or
    relative. The representative payee is responsible for determining
    the child's needs-defined as the immediate and reasonably
    foreseeable essentials for living-and for using the payments only
    for the child's use and benefit. Representative payees must submit
    reports accounting for the use of benefits when SSA asks them to
    do so. 2For GAO's report on the issue of coaching, see Social
    Security: New Functional Assessments for Children Raise
    Eligibility Questions (GAO/HEHS-95-66, Mar. 10, 1995).
    3Disability-related services are services or items attributable to
    a child's disability, such as a ramp to the home of a child in a
    wheelchair, mobility equipment, specialty medical services, or
    special recreation. Families' disability-related costs are
    nonreimbursed expenses for disability-related services that
    families purchase in whole or in part out of their SSI or other
    family income. "Program" refers to public and private
    organizations and agencies providing services for free, on a
    sliding fee scale, or for a small copayment or deductible, to,
    among others, children with disabilities. Page 2
    GAO/HEHS-99-99 Supplemental Security Income Executive Summary
    Background                                      In 1998, about
    885,000 children received about $4.9 billion in federal SSI
    payments, with an average monthly amount of about $430 per child.
    Children may qualify for SSI if they are unmarried and meet the
    applicable SSI financial and disability requirements. To be
    considered disabled, a child younger than 18 must have a medically
    determinable physical or mental impairment that results in marked
    and severe functional limitations and that has lasted or can be
    expected to last for a continuous period of not less than 12
    months or that can be expected to result in death. An array of
    federal, state, and local programs offer a range of services and
    assistance to children with disabilities and their families.4
    Table 1 describes major public programs and details whether they
    give special consideration to children on SSI. Table 1: Major
    Public Programs Serving Children With Disabilities Program
    Purpose                                              SSI link
    Medicaid                                        To pay for
    medically necessary health care Most children receiving SSI are
    services.                                            automatically
    eligible for Medicaid. Medicaid's Early and Periodic Screening,
    To identify and treat children's health              Children
    receiving Medicaid, including Diagnostic, and Treatment (EPSDT)
    problems before they become complex or               those
    receiving SSI, are entitled to EPSDT disabling and require more
    costly treatment. services. Medicaid's Home and Community-Based
    To offer community-based long-term care              Children
    receiving SSI are not given Services Waiver
    services in order to prevent or postpone             special
    consideration. institutionalization. Early Intervention (part C,
    Individuals With    To enhance development and minimize
    Children receiving SSI are not given Disabilities Education Act)
    and perhaps preclude later need for                  special
    consideration. special education services or institutionalization.
    Special Education (part B, Individuals With     To ensure that all
    children with disabilities        Children receiving SSI are not
    given Disabilities Education Act)                     have
    available to them a free appropriate            special
    consideration. public education, through special education and
    related services designed to meet their unique needs. Children
    With Special Health Care Needs         To provide and promote
    family-centered,              Children younger than 16 receiving
    SSI are (title V, Social Security Act)                  community-
    based care, including care                 to be referred for
    rehabilitation services to coordination services, and to aid in
    the state agency administering the title V developing community-
    based systems of                program. care; to provide
    rehabilitation services to children younger than 16 receiving SSI.
    State family support programs                   To support
    families in their efforts to raise        Children receiving SSI
    are not given their children with disabilities in the family
    special consideration. home. 4Although Medicaid serves children
    and adults without disabilities, GAO included the program in this
    group because, in most states, children on SSI are automatically
    eligible for Medicaid. Page 3
    GAO/HEHS-99-99 Supplemental Security Income Executive Summary
    Results in Brief    Recent survey data show that families obtain
    from public programs many disability-related services for their
    SSI children. However, these programs do not cover the cost of all
    such services-families pay for some services out of their own
    income, which includes their children's SSI payments. Although
    nationwide data are not available to calculate the precise level
    of these expenditures, survey data on Florida families with SSI
    children shed some light on this question. About 87 percent of the
    Florida families surveyed in 1996 reported that they incurred
    disability-related costs. About three-quarters of these families
    spent $3,000 or less and half spent $1,000 or less on disability-
    related services over the past year. About 90 percent of the
    families in the Florida survey who incurred disability-related
    costs incurred total annual costs that were less than the maximum
    allowable SSI payments for the year, and about 10 percent reported
    costs that exceeded the maximum payments. Such data, however, do
    not reflect whether a child's service needs have been met. Data on
    expenditures do not reflect services that families needed but did
    not purchase because they could not afford them. Whether a family
    can afford to purchase services, and the need to purchase certain
    types of services, is affected by a family member's decision to
    work or stay at home to care for a child with a disability. A
    variety of factors may affect families' ability to obtain services
    through other programs. First, SSI beneficiary status generally
    does not entitle a child to a program's services. Because of
    certain aspects inherent to the design of a program-such as
    eligibility criteria, the number of available service slots, and
    whether a program covers needed services-some SSI children do not
    receive services from programs. Second, because of difficulties in
    identifying which children need services and what services they
    need, some children who need services may be overlooked. Third,
    once a child's service needs are identified, gaining access to
    some program services can be difficult because of the shortage of
    service providers in some areas and program officials' concerns
    about the cost of providing some services. Finally, families play
    an important role in obtaining services for their children. But
    some families' limited knowledge of programs and services, limited
    ability to proactively pursue services to which they may be
    entitled, or lack of transportation or other supports hinders
    their ability to obtain services for their children. Page 4
    GAO/HEHS-99-99 Supplemental Security Income Executive Summary
    Principal Findings Families Incur a Wide          Families with
    children on SSI obtain a broad range of disability-related Range
    of Disability-Related    services. Some they obtain from programs
    and some they purchase Costs                          themselves.
    Data from the 1994 and 1995 National Health Interview Survey and a
    1996 Florida survey show that, collectively, families with
    children on SSI purchased a broad range of disability-related
    services.5 In particular, about 87 percent of the Florida survey
    families reported purchasing disability-related services for their
    children and incurring a wide range of costs. The remaining 13
    percent of families did not report or did not incur any
    disability-related costs. Families in the Florida survey reported
    total disability-related expenditures ranging from $10 to more
    than $26,000 per year. Although SSI payments may be used for any
    type of expenditure (such as food, clothing, or shelter) that
    meets the current and future needs of the disabled child, to
    provide a perspective on the magnitude of these costs, GAO
    compared annual total costs with the maximum SSI payments a family
    could receive for a child for a year.6 About 90 percent of the
    families in the Florida survey who incurred disability-related
    costs incurred total annual costs that were less than the maximum
    allowable SSI payments for a year, and about 10 percent reported
    costs that exceeded the maximum payments.7 While it might seem
    from the expenditure data that SSI payments are sufficient to
    cover disability-related costs for most families in Florida, such
    data do not indicate whether a child's disability-related needs
    have been met or whether or the extent to which families might
    have purchased additional needed services had they not faced
    constraints on their income. Moreover, the data do not allow GAO
    to assess the extent to which families make tradeoffs between
    purchasing disability-related services and purchasing basic
    necessities for the entire family. In this regard, data from both
    surveys show that nearly 40 percent of the respondents reported
    that they needed but did not obtain one or more services for their
    children. 5Data are from the National Center for Health
    Statistics' 1994 and 1995 National Health Interview Survey,
    including the Disability Supplement and Disability Followback
    Child's Questionnaire, and the 1996 University of Florida's
    Institute for Child Health Policy survey of children with special
    health care needs. 6The monthly maximum SSI payment in 1996 was
    $470. This amount for the year was $5,640. 7GAO also compared
    families' total annual costs with the mean annual SSI payment for
    children in Florida in 1996, which amounted to $5,181 as of
    December 1996. GAO found that about 86 percent of the Florida
    families who incurred disability-related costs incurred total
    annual costs below the mean annual SSI payment. Page 5
    GAO/HEHS-99-99 Supplemental Security Income Executive Summary And
    these data are likely to underestimate the extent to which
    families were unable to obtain needed services because the surveys
    generally asked about the need for services that were not obtained
    at all but rarely asked about the need for additional services
    that were obtained but in insufficient quantity. From GAO's
    analysis of survey data and information from site visits, GAO
    found that a variety of factors, aside from a child's particular
    service needs, influence the purchase of disability-related
    services and, hence, the level of a family's costs for them. A key
    reason that some families do not purchase such services is that
    they cannot afford them. In the Florida survey, about 60 percent
    of families who were unable to obtain one or more needed services
    for their children reported that they did not obtain the services
    because they were too expensive. Another factor is employment: A
    family member's decision to work or stay at home to care for a
    child with a disability affects not only the family's income, and
    thus the ability to purchase services, but also the need to
    purchase certain services, such as some types of specialized day
    care, that the family member at home may now be able to provide.
    For example, nearly 40 percent of the families participating in
    the Florida survey reported that caring for a child's special
    needs caused someone in the family to not work. And about 40
    percent of Florida survey respondents reported that family income
    decreased after the birth of a special-needs child. Finally,
    whether families are able to obtain services from programs also
    affects their disability-related costs. Survey data show that
    public programs were widely cited as a source of full or partial
    funding for many of the services that families obtained for their
    SSI children. For example, families generally cited Medicaid and
    the school system as sources of full or partial payment for
    medical care, educational services, and therapies-such as physical
    or respiratory therapy. Moreover, data from both surveys show that
    while some programs, including Medicaid, provided certain types of
    services to some families, other families reported purchasing the
    same types of services. Program, Service, and       A variety of
    factors may affect some families' receipt of services through
    Family-Related Factors      programs. First, SSI beneficiary
    status generally does not entitle a child to a Affect Some
    Families'       program's services. As an illustration, children
    with mental Receipt of Services From    impairments-that is, 64
    percent of all children receiving SSI-do not meet Programs
    the eligibility criteria of the title V programs in 25 states,
    even though children on SSI are to be referred to the state title
    V program for Page 6                                GAO/HEHS-99-99
    Supplemental Security Income Executive Summary rehabilitation
    services.8 Even when a child meets a program's eligibility
    criteria, the child still may not be admitted to the program
    because the number of available slots may be filled. And once a
    child has been admitted, his or her service needs may still not be
    covered. Or, if the program covers the services, the child may not
    fulfill the requirements to receive them. Second, because of
    difficulties in identifying which children need services and what
    services they need, programs may miss an opportunity to serve
    children. The process of identifying a child's service needs is
    generally separate from the process of determining that a child
    has a disability. Making decisions about the type and amount of
    services a disabled child needs is difficult: The decisions are
    inherently complex, and standardized methodologies to aid in
    making some decisions are lacking. Another difficulty, according
    to the results of research studies and site visit interviews with
    program officials and case managers, is that some service
    providers have an insufficient understanding about childhood
    disability. For instance, although teachers play a key role in
    identifying students in need of services and contributing to the
    process of determining what services they need, research results
    and findings from site visits indicate that some teachers are not
    fully prepared to play this role. Yet another difficulty concerns
    the screening for EPSDT services. Studies show that state Medicaid
    programs are not screening children for needed EPSDT services at
    the frequency recommended by the Secretary of the Department of
    Health and Human Services (HHS), which means that some children
    may have disability-related service needs that these programs have
    not identified. Third, gaining access to some program services can
    be difficult, even when a child's service needs are identified. A
    child's family may have difficulty gaining access to services
    because some providers-and the services they offer-are either
    unavailable or in short supply in some communities. For example,
    among national survey participants who were unable to obtain one
    or more needed services, about 40 percent responded that they did
    not obtain the service because it was unavailable. Additionally,
    concerns of program officials about service cost can affect a
    child's receipt of special education services such as technology
    devices. Moreover, some program officials provide only limited
    information to families about community resources or do not see
    themselves as responsible for providing information about services
    available from other programs. 8A child with a mental impairment,
    such as mental retardation, could qualify for a title V program if
    he or she has a qualifying secondary physical impairment. Page 7
    GAO/HEHS-99-99 Supplemental Security Income Executive Summary
    Overall, families play an important role in obtaining services for
    their children but some are hindered by limited knowledge of
    programs and services, limited ability to proactively pursue
    services to which they may be entitled, or a lack of
    transportation or other supports. For example, some families do
    not know about program services such as respite care. In addition,
    case managers described some families as being hesitant to assert
    their rights to services because they fear retaliation against
    their children. Agency Comments       GAO provided copies of a
    draft of this report to SSA, the Department of and GAO's Response
    Education, and HHS and components within HHS for their comments.
    Education said that the report provides a balanced treatment of
    the status of children receiving SSI and their families. SSA
    generally concurred with the draft report and noted that it is
    currently designing a survey of SSI children that, when completed,
    will collect nationwide data regarding costs of care and service
    utilization. SSA also said that the report provides useful
    information on disability-related expenditures for children with
    disabilities. However, the agency questioned the way in which GAO
    compared disability-related costs with SSI benefits. Although SSI
    payments may be used for any type of expenditure benefiting the
    child, GAO used maximum allowable SSI payments as a means of
    comparing disability-related costs across families. SSA expressed
    concern that the results of this comparison could be taken out of
    context, or they could be misinterpreted because many children
    (about 32 percent nationwide) do not receive the maximum payment.
    Because GAO shared these concerns, GAO presented the results of
    its comparison within a discussion of the limitations of the data
    and methods GAO used. GAO used the maximum allowable benefit
    amount because the survey data did not include information on the
    exact amount of a family's SSI payment. Moreover, about 68 percent
    of SSI children nationwide receive the maximum benefit, and
    families who receive less than the maximum benefit for a child
    usually have additional sources of income. GAO also added to the
    report a comparison of total annual costs with the mean annual SSI
    payment for children in Florida in 1996. GAO found that using the
    mean annual SSI payment yielded little or no difference in results
    in comparison with the results obtained from using the maximum
    allowable benefit. Regardless of the comparison measure used, or
    the representativeness of the cost data, such a comparison does
    not indicate whether a child's disability-related needs are met or
    whether families with SSI children might purchase additional
    needed services and, thus, incur greater costs if their incomes
    were higher. Page 8                                GAO/HEHS-99-99
    Supplemental Security Income Executive Summary SSA, Education, and
    components within HHS, including the Health Care Financing
    Administration and the Maternal and Child Health Bureau, also
    provided GAO with technical comments. GAO has modified the report
    to reflect these comments where appropriate. Page 9
    GAO/HEHS-99-99 Supplemental Security Income Contents Executive
    Summary
    2 Chapter 1
    12 Introduction             SSI Provides Cash Benefits to Children
    Who Have Disabilities and             12 Limited Income and
    Resources Other Major Programs Provide Disability-Related Services
    15 Objectives, Scope, and Methodology
    20 Chapter 2
    25 Families Incur a Wide    Families Purchase a Broad Range of
    Services                                  25 Families' Costs Vary
    Widely                                                  29 Range
    of                 Multiple Factors Affect Families' Level of
    Costs                             31 Disability-Related Costs
    Chapter 3
    39 Program, Service, and    Program Design May Affect Whether
    Children Receive Services                  39 Difficulties in
    Identifying Eligible Children and Their Needs May            42
    Family-Related              Hinder Families in Obtaining Services
    Factors Affect           Gaining Access to Needed Program Services
    Is Sometimes                       45 Families' Receipt of
    Difficult Limited Program Knowledge and Other Circumstances Impede
    48 Program Services            Some Families From Obtaining
    Program Services Appendixes               Appendix I: 38
    Disability-Related Services Used in Collecting and            50
    Analyzing Site Visit Data Appendix II: Disability-Related Services
    Covered by Selected                 53 Programs Appendix III: GAO
    Contacts and Staff Acknowledgments                         57
    Related GAO Products
    60 Tables                   Table 1: Major Public Programs Serving
    Children With                          3 Disabilities Table 1.1:
    Selected Demographic Characteristics of Children
    13 Receiving SSI in December 1998 Table 1.2: Major Public Programs
    Serving Children With                       16 Disabilities Page
    10                              GAO/HEHS-99-99 Supplemental
    Security Income Contents Table 2.1: Percentages of SSI Children in
    the NHIS Who Received                26 Disability-Related
    Services and Whose Families Paid for Them Over the Past Year Table
    2.2: Percentages of SSI Children in the Florida Survey Who
    27 Received Disability-Related Services and Whose Families Paid
    for Them Over the Past Year Table 2.3: Percentages of SSI Children
    in the NHIS Who Received                 34 Disability-Related
    Services and the Public and Private Sources That Paid for Them
    Over the Past Year Table 2.4: Percentages of SSI Children in the
    Florida Survey Who                36 Received Disability-Related
    Services and the Public and Private Sources That Paid for Them
    Over the Past Year Table 3.1: Factors Affecting Families' Receipt
    of Services From                 39 Programs Abbreviations CSHCN
    children with special health care needs EPSDT          Early and
    Periodic Screening, Diagnostic, and Treatment HCFA
    Health Care Financing Administration HHS            Department of
    Health and Human Services HSRI           Human Services Research
    Institute IDEA           Individuals With Disabilities Education
    Act IEP            Individual Education Program NHIS
    National Health Interview Survey SSA            Social Security
    Administration SSI            Supplemental Security Income VA
    Department of Veterans Affairs Page 11
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    The Congress established the Supplemental Security Income (SSI)
    program, which is administered by the Social Security
    Administration (SSA), in 1972 to provide cash payments to aged
    individuals and blind and disabled adults and children with
    limited income and resources. Families of children receiving SSI
    payments may spend them for any purpose that meets a child's
    current and future needs, including food, clothing, shelter, and
    utilities, as well as disability-related services.9 In addition to
    SSI, a number of other federal and state programs provide
    assistance to children with disabilities. SSI Provides Cash
    Children may qualify for SSI if they are unmarried and meet the
    applicable Benefits to Children     SSI disability, income, and
    financial asset requirements. To be eligible, a child younger than
    18 must have "a medically determinable physical or Who Have
    Disabilities    mental impairment which results in marked and
    severe functional and Limited Income       limitations, and which
    can be expected to result in death or which has lasted or can be
    expected to last for a continuous period of not less than and
    Resources            12 months" and must have limited income and
    assets.10 Once a child is on the SSI rolls, eligibility continues
    until (1) death, (2) SSA determines that the child's medical
    condition has improved to the point that he or she is no longer
    considered disabled, (3) the family's finances no longer meet
    SSI's eligibility requirements, or (4) SSA determines that the
    child, upon reaching age 18, is not disabled according to adult
    disability criteria.11 Children on SSI receive cash benefits from
    the federal government. Additionally, most states provide a
    supplemental cash benefit to these children. In 1998, about
    885,000 children received about $4.9 billion in federal SSI
    payments, with an average monthly amount of about $430 per child.
    Thirty-four states currently provide a supplemental cash benefit
    to children receiving a federal payment. These states' total state
    9In most cases, a disabled child's SSI benefit is paid on behalf
    of the child to a "representative payee," such as a parent or
    relative. The "representative payee" is responsible for
    determining the child's needs-defined as the immediate and
    reasonably foreseeable essentials for living-and using the
    payments only for the child's use and benefit. Representative
    payees must submit reports accounting for the use of benefits when
    SSA asks them to. We use "family" synonymously with
    "representative payee." 10The definition of childhood disability
    is found in 42 U.S.C. 1382c(a)(3)(C)(i). SSA considers the
    parent's income and assets when deciding whether a child qualifies
    for SSI. 11SSA is to conduct continuing disability reviews of
    certain groups of children to determine whether a child has
    medically improved to the extent that the child is no longer
    disabled. SSA is required to review the disability status of low-
    birthweight babies and children younger than 18 who are likely to
    improve or, at the option of the commissioner, those who are
    unlikely to improve. SSA is also to redetermine the disability
    eligibility for 18-year-olds, using adult criteria for disability.
    Page 12                                              GAO/HEHS-99-
    99 Supplemental Security Income Chapter 1 Introduction
    supplementation, however, is less than 6 percent of their federal
    and state payments. Table 1.1 shows selected demographic
    characteristics of children receiving SSI. For example, the
    population of children on SSI is fairly evenly distributed among
    four age groups: 0-5, 6-9, 10-13, and 14-17. About 64 percent of
    children on SSI have a mental impairment, such as mental
    retardation, as their qualifying diagnosis. In addition, just one-
    fourth of all children on SSI reside in two-parent households.
    About 61 percent of children on SSI reside in single-parent
    households, nearly all headed by women. Another 13 percent of SSI
    children reside with other relatives or nonrelatives or in
    institutions or foster care. Further, nearly 70 percent of all SSI
    children reside in households with monthly incomes, not including
    SSI payments, of less than $1,000. Overall, about one-half of
    children receiving SSI are located in one of nine states; about
    one-third are concentrated as the table shows in California, New
    York, Florida, Texas, and Ohio. Table 1.1: Selected Demographic
    Characteristics of Children Receiving
    Percent of SSI in December 1998                     Characteristic
    Number            total Total
    885,250         100.0% Age 0-5
    174,150          19.7 6-9
    222,370          25.1 10-13
    251,590          28.4 14-17
    237,140          26.8 Gender Female
    323,430          36.5 Male
    561,820          63.5 Diagnosed impairmentsa Mental impairments
    523,270          63.9 Physical impairments
    216,230          26.4 Otherb
    79,870            9.7 State of residency California
    78,540            8.9 New York
    70,140            7.9 Florida
    59,890            6.8 Texas
    50,100            5.7 Ohio
    44,890            5.1 Illinois
    42,420            4.8 (continued) Page 13
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    Percent of Characteristic
    Number              total Pennsylvania
    40,340                  4.6 Michigan
    36,960                  4.2 Louisiana
    31,780                  3.6 Other
    430,190             48.6 Parents in household No parentsc
    118,650             13.4 One parent
    537,000             60.7 Two parents
    229,600             25.9 Monthly household income not including
    SSId Zero
    225,220             29.4 Less than $200
    140,530             18.3 $200-$399
    36,980                  4.8 $400-$599
    44,190                  5.8 $600-$999
    84,740            11.1 $1,000 or more
    234,940             30.6 aNumbers are based on the children for
    whom a diagnostic code is available in SSA's Supplemental Security
    Record file. bIncludes conditions for which a diagnosis has been
    established but is not included in SSA's medical listing of
    impairments. cChildren with no parents in the household reside
    independently, with other relatives or nonrelatives, or in
    institutions or foster care. dIncludes monthly income of
    households headed by single adults and couples. No parental income
    information exists for the 118,650 children with no parents.
    Sources: SSA, Children Receiving SSI (Baltimore, Md.: Office of
    Research, Evaluation, and Statistics, Dec. 1998),
    http://www.ssa.gov/statistics/ores_home.html (cited Feb. 17,
    1999). Numbers projected from a 10-percent sample of children who
    were younger than 18 and receiving SSI benefits were drawn by SSA
    from its Supplemental Security Record file, Dec. 1998. In recent
    years, SSI has been the focus of much congressional concern and
    media attention in light of unprecedented growth in the number of
    children receiving SSI disability benefits. From the end of 1989
    through 1996, the number of children younger than 18 receiving SSI
    disability benefits more than tripled, from 265,000 to 955,000,
    and benefit payments increased from $1.2 billion to about $5.2
    billion.12 Congressional concerns also focused on media reports of
    allegations that some parents were 12See the following reports for
    our analyses of factors that contributed to rapid program growth
    during this period: Social Security: Rapid Rise in Children on SSI
    Disability Rolls Follows New Regulations (GAO/HEHS-94-225, Sept.
    9, 1994), and Social Security: New Functional Assessments for
    Children Raise Eligibility Questions (GAO/HEHS-95-66, Mar. 10,
    1995). Page 14
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    coaching their children to feign disabilities in order to receive
    SSI benefits.13 Concerned with this rapid growth and allegations
    of program abuse, the Congress tightened SSI program eligibility
    through the Personal Responsibility and Work Opportunity
    Reconciliation Act, enacted in August 1996. The Congress did this
    to help ensure that only needy children with severe disabilities
    receive benefits. Moreover, the allegations of coaching raised
    questions about the effectiveness of using cash benefits to serve
    children who have disabilities and limited income and resources.
    Therefore, an early version of the welfare reform bill passed by
    the House proposed substituting medical and nonmedical services
    for cash benefits for children on SSI. Proponents of this proposal
    contended that a cash benefit encourages families to keep their
    children disabled in order to retain the benefit and that
    providing services is a better way to help them. But opponents
    responded that the cost of rearing children with disabilities is
    higher than the cost of rearing children without disabilities.
    They indicated that without the SSI cash benefit, family income
    would be inadequate to cover the higher costs of providing
    disability-related clothing, food supplements, child care, and
    transportation, among other services.14 The welfare reform law
    that the Congress ultimately enacted left the SSI program's cash
    benefit structure unchanged.15 Other Major Programs While SSI is
    designed as a cash assistance program, children on SSI may be
    Provide                         eligible to receive a range of
    disability-related services-including medications, durable medical
    equipment, nursing services, therapies, Disability-Related
    educational services, and child care-from an array of other
    programs. Services                        Some of these programs
    were in operation before SSI was established and others began
    afterward. The programs that target services to children with
    disabilities and make the largest federal expenditures on children
    with disabilities are Medicaid's Early and Periodic Screening,
    Diagnostic, and Treatment (EPSDT) and Home and Community-Based
    Waivers; Special Education and Early Intervention under the
    Individuals With Disabilities 13See GAO/HEHS-95-66, which states
    that studies we reviewed found little evidence that coaching is
    widespread. These studies, however, relied solely on documentation
    in case files and, therefore, cannot rule out coaching. In
    addition, see SSA Initiatives to Identify Coaching (GAO/HEHS-96-
    96R, Mar. 5, 1996), in which we report on two SSA initiatives to
    identify and process reports of parents coaching their children in
    order to qualify for SSI. Both initiatives identified few cases of
    suspected coaching, and very few of the children involved received
    SSI benefits. 14We define various disability-related services in
    appendix I. 15However, the welfare reform law did restrict the use
    of certain past due SSI payments benefiting children younger than
    18-for example, retroactive payments for the period between
    application for benefits and determination of eligibility. The law
    requires that a child's representative payee deposit the payments
    in a dedicated account and limits the use of the payments to
    certain purposes such as job skills training or disability-related
    personal needs assistance or housing modifications or any other
    service or item the Commissioner of SSA considers appropriate,
    provided it benefits the child. Page 15
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    Education Act (IDEA); and Children With Special Health Care Needs
    under title V of the Social Security Act.16 Table 1.2 provides an
    overview of these programs as well as the primarily state-funded
    family support programs and describes their purpose, target
    population, financing and administration, and main service or
    benefit and the extent of program participation and expenditures
    on children. For example, title V, established in 1935 as part of
    the original Social Security Act, includes provisions that focus
    on serving children with special health care needs as part of the
    title's overall purpose of ensuring quality health care for
    mothers and children with low income or for whom the availability
    of health services is limited. Children younger than 16 on SSI are
    to be referred for rehabilitation services to the state title V
    program. Table 1.2: Major Public Programs Serving Children With
    Disabilities Participation and Program (and
    Financing and                                       expenditures
    on authority)               Purpose                   Target
    population          administration            Service or benefit
    children Children With Special To provide and               State-
    determined           A state block grant       Specialty and
    907,000 children Health Care Needs        promote
    program, funded           subspecialty health       with special
    health (title V, Social Security family-centered,
    federally and with a      care and services         care needs (FY
    Act)                     community-based
    state match;              unavailable in most       1995); federal
    care, including care                                 Department of
    communities;              allocation of $545.8 coordination, and
    to                                 Health and Human
    services that             million; estimated aid in developing
    Services' (HHS)           facilitate access to      $1.3 billion
    in state community-based
    Maternal and Child        health                    funding for
    children systems of care; to
    Health Bureau             services-such as          with special
    health provide rehabilitation
    coordinates               transportation and        care needs,
    among services to children
    activities at the         care coordination         others (FY
    1997). younger than 16 on
    federal level and         with other programs. SSI.a
    shares information and technical assistance with the states;
    administered by states. (continued) 16Although Medicaid serves
    children and adults without disabilities as well, children on SSI
    are automatically eligible for Medicaid in most states. The
    Medicaid law refers to EPSDT as a set of items and services within
    the Medicaid program. However, common usage refers to EPSDT as a
    program. In this report, we refer to EPSDT as a program within
    Medicaid. Page 16
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    Participation and Program (and
    Financing and                                    expenditures on
    authority)            Purpose                  Target population
    administration           Service or benefit      children Medicaid
    To pay for medically Low-income children Jointly funded by
    Federal law requires 15.3 million children; (title XIX, Social
    necessary health         and women,             federal and state
    the states to offer     $15.7 billion in Security Act)
    care services.           low-income persons governments;
    certain services,       federal and state who are blind or
    federal oversight by including hospital,         expenditures (FY
    disabled, and          HHS's Health Care        physician, and
    nurse 1997). low-income elderly     Financing
    practitioners' persons.               Administration
    services; the states (HCFA);                  can offer other
    administered by          benefits such as state Medicaid
    occupational programs.                therapy and dental services.
    Medicaid's EPSDT      To identify and treat Children younger
    Same as above.           Age-appropriate         6.4 million
    children; (title XIX, Social    children's health        than 21
    on                                      screenings and
    $1.6 billion in federal Security Act)         problems before
    Medicaid.                                       immunizations,
    and state they become
    follow-up diagnostic expenditures (FY complex or disabling
    services, and           1997). and require more
    medically necessary costly treatment.
    treatment services. Medicaid's Home and To offer
    State-determined.      Same as above.           Range of social
    and 7,568 children; Community-Based       community-based
    supportive services. $252.4 million in Services Waiver       long-
    term care
    federal and state (title XIX, Social    services in order to
    expenditures Security Act)b        avoid
    (calendar year 1997). institutionalization. Early Intervention
    To enhance               Children from birth    Jointly funded by
    Among the services 187,348 children; (part C, IDEA)
    development and          to 3 years who         federal, state,
    and      offered are             federal allocation of minimize
    and             manifest               local governments.
    diagnostic              $309 million; perhaps preclude
    developmental          Federal Department evaluations, special
    estimated $3.6 later need for           delays or have a       of
    Education             instruction,            billion in state and
    special education        state-defined          develops guiding
    therapies,              local expenditures services or
    condition likely to    rules and                psychological
    (FY 1997).c institutionalization.    cause a delay.
    regulations, provides services, social work technical assistance
    services, care to the states, and       coordination, and monitors
    them.           transportation. Administered by states.
    (continued) Page 17
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    Participation and Program (and
    Financing and
    expenditures on authority)              Purpose
    Target population           administration             Service or
    benefit          children Special Education       To ensure that
    all      Children from 3             Same as above.
    Identification and          5.8 million children; (part B, IDEA)
    children with           through 21; broad
    assessment of               federal appropriation disabilities
    have       federal guidelines
    disabling conditions; of $3.1 billion; available to them a     for
    categorical                                        specially
    designed          estimated $38.9 free and appropriate disability
    criteria                                       instruction; and
    billion in state and public education        (specific
    transportation and          local expenditures through special
    assessment tools
    developmental,              (FY 1997).c education and
    are determined                                         corrective,
    and other related services        locally).d
    supportive services designed to meet
    (e.g., psychological their unique needs.
    services, therapies, audiology, and mobility services) needed to
    help a child benefit from special education. State family support
    To support families     State-determined.           Primarily
    A range of services, 281,000 families of programs
    in their efforts to                                 state-funded;
    including respite           children and adults raise their
    children                                typically
    care, home and              with disabilities; with disabilities
    in                                administered
    vehicle                     $525 million in the family home.
    through a state's          modifications,
    expenditures on developmental              equipment,
    both adults and disabilities authority. therapies, care
    children (FY 1996).e coordination, and cash subsidies. aIt is up
    to the states to define "rehabilitation services," and their
    definitions vary substantially. The states are not required to
    provide a specific amount of funds for children younger than 16 on
    SSI when Medicaid is unable to provide assistance. Theoretically,
    a state could determine that no money is a reasonable amount,
    according to Maternal and Child Health Bureau legal opinions.
    bCurrently the more than 200 waiver programs serve more than
    250,000 people of all ages. Federal regulations permit waiver
    programs to serve the elderly and people with disabilities,
    including people with physical disabilities, developmental
    disabilities, mental retardation, or mental illness. Data are
    unavailable on the number of children served across all waivers.
    However, the most recently available data show that 36 waivers are
    targeted exclusively to children. Information in the table on
    participation is limited to 26 of these 36 waiver programs and on
    expenditures to 23, because data are unavailable for the remaining
    waivers. cLittle information is available on state and local
    expenditures on Early Intervention and Special Education services.
    An estimate prepared by the Urban Institute in 1996 indicates that
    the federal portion of Early Intervention and Special Education
    expenditures is about 8 percent. We used this figure to estimate
    state and local expenditure amounts. (See Laudan Y. Aron, Pamela
    J. Loprest, and C. Eugene Steuerle, Serving Children With
    Disabilities: A Systematic Look at the Programs (Washington, D.C.:
    The Urban Institute Press, 1996). dChildren aged 3 through 5 and
    18 through 21 are eligible for special education if allowed under
    state law. Page 18
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    eDavid Braddock and others, The State of the States in
    Developmental Disabilities, 5th ed. (Washington, D.C.: American
    Association on Mental Retardation, 1998), pp. 41-42. In gathering
    data, the researchers defined "family support" as any community-
    based service administered or financed by the state mental
    retardation and developmental disability agency that provided for
    vouchers, direct cash payments to families, reimbursement, or
    direct payments to service providers that the state agency itself
    identified as family support. Medicaid, established in 1965, pays
    for health services for low-income children and adults with
    disabilities, among others. Children on SSI are generally eligible
    for Medicaid coverage.17 In 1967, the Congress established the
    EPSDT benefit to ensure that children eligible for Medicaid
    receive representative and comprehensive health services. These
    benefits are more comprehensive than benefits included in a
    state's Medicaid plan (within federal guidelines, each state
    defines its own benefit package). Medicaid also operates the Home
    and Community-Based Services Waiver Program.18 The program gives
    states, through a waiver, the option to offer services that go
    beyond the health and health-related benefits that have been the
    principal focus of Medicaid, including a wide range of social and
    supportive services. In addition, IDEA, which dates from 1975, is
    the main federal legislation supporting the educational rights of
    children with disabilities.19 Under IDEA's Early Intervention
    Program, infants and toddlers younger than 3 who have a
    substantial developmental delay (or who are at risk of delay) are
    entitled to receive services to maximize their development. About
    12 percent of the children on SSI who are younger than 3 receive
    Early 17The states may link eligibility for Medicaid with SSI in
    one of three ways. First, the law allows automatic Medicaid
    eligibility when a person becomes entitled to SSI. Thirty-two
    states and the District of Columbia have elected this option.
    Second, states may impose Medicaid eligibility criteria that are
    more restrictive than SSI criteria as long as the states do not
    choose criteria that are more restrictive than those they were
    using for Medicaid on January 1, 1972 (before the implementation
    of SSI). The 11 states that have chosen this option are known as
    "section 209(b)" states, after the section of the Social Security
    Amendments of 1972 that established it. Third, in the remaining 7
    states, SSI recipients are eligible for Medicaid, but they must
    file a separate application with the state agency that administers
    Medicaid. The Balanced Budget Act of 1997 created title XXI of the
    Social Security Act, referred to as the Child Health Insurance
    Program, to expand health insurance for low-income children
    previously ineligible for Medicaid. Children on SSI are generally
    not eligible for this program because they are generally eligible
    for Medicaid. 18This program is also called the section 1915(c)
    waiver program, for the section of Medicaid law in which it is
    authorized. 19In 1975, the Congress passed the Education for All
    Handicapped Children Act (P.L. 94-142), which was later amended
    and renamed the Individuals With Disabilities Education Act. Page
    19                                            GAO/HEHS-99-99
    Supplemental Security Income Chapter 1 Introduction Intervention
    services.20 IDEA's Special Education Program makes available to
    all children with disabilities who are 3 through 21 a free
    appropriate public education-in the least restrictive environment
    possible-that meets their unique needs regardless of the type or
    severity of disability. About 60 percent of the children on SSI
    who are 3 or older receive Special Education services.21 Finally,
    most states operate one or more family support programs. While
    these primarily state-funded programs vary in the groups they
    target and the services they offer, one of their main goals is to
    support families in their efforts to raise their children with
    disabilities at home. Services they offer include supportive
    services such as respite care, home and vehicle modifications,
    physical and occupational therapies, adaptive equipment, and
    recreation, as well as financial assistance and care coordination.
    Objectives, Scope,    Acknowledging the substantial programs that
    assist children with and Methodology       disabilities, the
    Senate report accompanying an early version of the welfare reform
    bill stated that the children's component of the SSI program
    required further examination.22 Specifically, the report stated
    that the issue of whether families of children on SSI incur
    expenses related to a child's disability needed to be addressed,
    as well as the effect of these programs on the cash needs of
    families with disabled children. Indeed, only one survey,
    conducted more than 20 years ago, has assessed families' costs for
    disability-related services for children receiving SSI, although
    20Based on a sample of families with children on SSI who
    participated in the National Center for Health Statistics' 1994
    and 1995 National Health Interview Survey, including the
    Disability Supplement and Disability Followback Child's
    Questionnaire. Participants were asked whether their children
    younger than 3 had received any type of special education services
    for infants and very young children with special needs during the
    past 12 months. The survey noted that for a child younger than 3,
    special education is a program designed to meet the individual
    needs of infants and very young children who have special needs.
    It may include services at home, at a hospital, or somewhere else.
    21Based on a sample of families with children on SSI who
    participated in the National Center for Health Statistics' 1994
    and 1995 National Health Interview Survey, including the
    Disability Supplement and Disability Followback Child's
    Questionnaire. Participants were asked whether their children had
    received any type of special education services or benefits for
    children with special needs paid for by the public school system
    during the past 12 months. The survey noted that for children aged
    3 or older, special education is a program designed to meet the
    individual needs of children age 3 and older with special needs.
    It may take place at a regular school, a special school, or a
    private school or at home or a hospital. 22S. Rep. No. 104-96
    (1995). Page 20
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    numerous studies have addressed this issue indirectly.23 In the
    conference report accompanying the welfare reform bill, the
    Congress stated that it might address the issue of SSI benefits
    for children in the future. To help inform any future
    deliberations on this issue, the Congress mandated in the welfare
    reform law that we study and report on the disability-related
    expenses that families of children on SSI incur that are not
    covered by federal, state, and local programs serving children
    with disabilities. To address this mandate, we (1) examined the
    disability-related costs that families of children on SSI incur
    and the factors that influence the level of such costs and (2)
    identified factors affecting families' receipt of disability-
    related services from programs. To examine families' disability-
    related costs and the factors affecting the level of such costs,
    we analyzed responses by families with children younger than 18 on
    SSI in two surveys.24 One was the National Center for Health
    Statistics' 1994 and 1995 National Health Interview Survey (NHIS),
    including the Disability Supplement and Disability Followback
    Child's Questionnaire. The other was the University of Florida's
    Institute for Child Health Policy 1996 survey of Florida children
    with special health care needs.25 The data from both surveys have
    some limitations. For example, because the NHIS did not ascertain
    information on SSI receipt for 23Many studies that have addressed
    costs for disability-related services concentrated on populations
    other than children receiving SSI benefits, such as Medicaid
    beneficiaries or people with particular impairment types. Studies
    have also assessed total disability-related costs, regardless of
    who pays for the services. Studies that focused on children
    receiving SSI covered issues other than disability-related costs,
    such as access to health care and items families purchase with the
    SSI benefit. The one survey that identified disability-related
    costs for children on SSI was conducted in 1978. (See Urban
    Systems Research and Engineering, Inc., Survey of Blind and
    Disabled Children Receiving Supplemental Security Benefits, SSA
    publication 13-11728, prepared by Marilyn Rymer and others
    (Baltimore, Md.: SSA, Jan. 1980).) The survey data were later
    analyzed by Social and Scientific Systems, Inc., and Mathematica
    Policy Research, Inc. (See Myles Maxfield, Jr., and Allen Kendall,
    Disabled Children in the Supplemental Security Income Program
    (Washington, D.C.: SSA, Division of Supplemental Security Studies,
    June 30, 1981).) 24Disability-related costs occur when families
    pay for disability-related services or items, either entirely or
    in part, with their own family income. Their income may come from
    a number of sources, including a child's SSI cash benefit.
    Consistent with the definitions used by the two surveys, families'
    disability-related costs do not include expenditures reimbursed by
    an insurance company or other source. We define "disability-
    related services" as the services or items that are attributable
    to a child's disability. These services include, for example, a
    ramp to the home of a child in a wheelchair, mobility equipment
    for a child with cerebral palsy, or specialty medical services for
    a child with severe asthma. 25The Florida survey was developed as
    part of a study that examined children receiving Medicaid as well
    as those enrolled in managed care organizations. See E.A. Shenkman
    and B.V. Vogel, Managed Care: Implications for Families' Out-of-
    Pocket Expenses When Caring for Children With Special Health Care
    Needs (Gainesville, Fla.: University of Florida, Institute for
    Child Health Policy, May 1998). Grant 95A5PE273A, funded by HHS
    Assistant Secretary of Planning and Evaluation. Both the NHIS and
    the Florida survey were conducted before the tightening of SSI
    eligibility requirements by the welfare reform law in August 1996.
    Page 21                                             GAO/HEHS-99-99
    Supplemental Security Income Chapter 1 Introduction 12.5 percent
    of the children who were younger than 18 and included in the 1994
    and 1995 surveys, the children receiving SSI included in the NHIS
    may not be representative of SSI children nationwide. Moreover,
    because the Florida survey consists of data from a random sample
    of Florida children receiving Medicaid, the SSI children in the
    Florida survey may not be representative of all SSI children in
    Florida. In addition, data in both surveys were self-reported and
    some respondents may not have been able to recall with precision
    the amount they spent on a particular service over a year.
    Moreover, some respondents may not have known which entity or
    entities paid for a service. For both surveys, adults in families
    provided responses about their children's receipt of a set of
    disability-related services. We analyzed data on 450 children from
    the NHIS and 208 children from the Florida survey.26 Because the
    set of services in the NHIS did not include several disability-
    related services that a family might need to purchase, or did not
    ask about the costs associated with some services, we did not use
    the NHIS data to estimate total family costs. Because the Florida
    survey is more comprehensive than the NHIS in the scope of
    disability-related services covered by survey questions, we used
    the Florida survey data to estimate family costs. The Florida
    survey asked each family how much it paid for individual services
    that the child with the greatest health care needs received during
    the past year. Total family disability-related costs were
    calculated by summing the individual service costs reported for
    the child. Findings from the Florida data may not be
    representative of children receiving SSI nationwide. Nevertheless,
    the age ranges and gender composition of the SSI children in the
    Florida survey were generally similar to those of the population
    of children on SSI nationwide. Moreover, more than half of the
    children in both groups lived in single-parent families. And,
    although the prevalence of some impairment types varied
    significantly among the two groups, they generally had a similar
    range of impairment types. To provide a perspective on the
    magnitude of families' disability-related costs, we compared the
    annual total costs of Florida survey participants with the maximum
    SSI payments a family could receive for a child for a year.
    Although SSI payments may be used for any type of expenditure
    benefiting the child, this analysis provides a basis for comparing
    costs across families. We used the maximum allowable benefit
    amount because 26The group of 450 children from the NHIS was
    composed of children whom family members identified as receiving
    SSI and whose family members responded to the 1994 or 1995
    Disability Followback Child's Questionnaire. For these 450
    children, we analyzed responses to questions contained in the
    Disability Followback, the Disability Supplement, and other parts
    of the survey. Page 22
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    the Florida survey did not contain information on the exact amount
    of a family's SSI payment. Although 32 percent of SSI children
    nationwide received less than the maximum benefit at the end of
    1996, the families who do not receive the maximum benefit usually
    have sources of income in addition to their children's SSI
    payments. As a result, these families' total income usually equals
    or exceeds the level of maximum allowable payments. At the time of
    the Florida survey in 1996, the annual maximum allowable SSI
    payment for one child was $5,640.27 To identify factors affecting
    families' receipt of disability-related services from programs, we
    focused our review on programs that target and have the largest
    federal expenditures for children with disabilities.28 These
    programs are Medicaid's EPSDT and waiver programs, IDEA's Special
    Education and Early Intervention programs, and the title V
    program. In our analysis of these and other federal, state, and
    local programs, we reviewed research studies and interviewed
    program officials, experts, and advocacy groups on disabled
    children's access to program services. Also, we made site visits
    to Mississippi, New Hampshire, and Texas to interview families and
    case managers of children receiving SSI, representatives of
    community organizations, and state and county program officials.29
    We used a list of 38 disability-related services that we derived
    from the NHIS and Florida survey to help collect and analyze
    information gathered during our site visits (appendix I lists and
    defines the 38 services). We performed a content analysis of the
    site visit data to identify factors that affect families' receipt
    of disability-related services from programs. To meet our
    evidentiary threshold to be considered a "factor," an issue had to
    be raised by two or more types of groups interviewed during site
    visits (for example, program officials, case managers, families,
    representatives of community organizations) in two or more states.
    We did not identify the extent to 27We also compared total annual
    costs for Florida families with the mean annual SSI payment for
    children in Florida in 1996. The mean annual SSI payment for
    children in Florida amounted to $5,181 as of December 1996. 28In
    this report, "program" refers to public and private programs,
    organizations, and agencies that provide services and items for
    free, on a sliding fee scale, or for a copayment or deductible
    that benefit, among others, children with disabilities. Programs
    include, for example, federal, state, and local agencies,
    nonprofit community service organizations, and for-profit private
    companies conducting charity work. An example of a for-profit
    private company conducting charity work is a utility company
    discounting the utility bill for a family with low income whose
    child with a disability requires higher than normal electricity
    usage. 29We chose these states because the proportions of their
    state populations younger than 18 that receive SSI benefits were
    high (Mississippi), medium (Texas), and low (New Hampshire).
    Within each state, we chose one county with a large general
    population and some type of community organization focused on
    childhood disability with whose representatives we could work to
    arrange group interviews. Service providers (for example,
    community mental health center staff) sometimes attended our
    meetings with representatives of community organizations. Page 23
    GAO/HEHS-99-99 Supplemental Security Income Chapter 1 Introduction
    which any of the factors affect access to program services for
    children on SSI. We did our work between November 1997 and April
    1999. We did not verify the accuracy of the responses to either
    the NHIS or Florida survey, but the administrators of both surveys
    used various procedures to ensure the reliability of the survey
    data. We performed our work in accordance with generally accepted
    government auditing standards. Page 24
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs Families with
    children on SSI obtain a broad range of disability-related
    services, some from programs and some by purchasing them
    themselves. Data from the NHIS and Florida survey show that
    families purchased a broad range of disability-related services
    such as specialized day care, medical devices, and physical
    therapy.30 In addition, data from the Florida survey show that the
    families' costs for these services varied widely. While the vast
    majority of the families in Florida incurred annual costs that
    were less than the maximum allowable SSI payments for a year, a
    small proportion of families incurred costs that greatly exceeded
    these payments. However, expenditure data do not indicate whether
    a child's disability-related needs have been met or whether
    families might have purchased additional services had they not
    faced constraints on their income. Other survey data and findings
    show that a key reason some families do not purchase services is
    that they cannot afford them, thus affecting the level of
    disability-related costs they incur. In addition, a family
    member's employment status and whether families obtain services
    from programs affect the level of their costs. Families Purchase a
    Data from the NHIS and Florida survey show that families with
    children on Broad Range of         SSI obtain a broad range of
    disability-related services. While families obtain many of these
    services from programs, families may also purchase Services
    services. For example, about 87 percent of the Florida families
    surveyed reported that they purchased disability-related services
    for their SSI children, such as special diet or formula, special
    or additional clothing, or modifications to the home.31 Tables 2.1
    and 2.2 show that-for many of the services asked about in the NHIS
    and for almost every service asked about in the Florida survey-
    some proportion of families reported that they had incurred
    disability-related costs during the previous year. For example, at
    least half of the families in the Florida survey who provided
    transportation to or from service providers or obtained
    specialized day care, home-related services, special diet or
    formula, medical supplies, special or additional clothing, diapers
    (for use beyond the usual age), or assistive technologies (for
    example, devices to assist speech) reported purchasing these
    services over the past year. 30Families may purchase disability-
    related services or items entirely, or they may pay for only a
    portion of a service's cost, the difference being paid for by
    other sources. 31The remaining 13 percent of families did not
    report or did not incur any disability-related costs. The 87
    percent figure may overstate the proportion of families reporting
    the purchase of disability-related services to the extent that the
    purchase of doctor visits, hospital care, or a van or car was not
    related to a child's disability and a family purchased no other
    disability-related service. Page 25
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs Table 2.1:
    Percentages of SSI Children in the NHIS Who Received
    Percent of SSI               Percent of Disability-Related
    Services and Whose
    children who       service-receiving Families Paid for Them Over
    the Past
    received         children whose Year
    disability-related      families paid for Service
    servicesa               servicesb Medical care and therapy Doctor
    visits for conditions lasting at least 12 months
    37.6                            c Home visits by a doctor
    0.4                        0 Visiting nurse
    5.0                        0 Social work services
    14.5                      1.3 Medications for conditions lasting
    at least 12 months
    28.5                            c Mental health servicesd
    18.3                      4.5 Physical therapy
    17.7                      3.4 Occupational therapy
    12.2                      2.1 Audiologist services
    9.3                     10.2 Recreational therapist services
    4.1                      8.4 Speech therapy
    27.7                        0 Respiratory therapy
    4.9                        0 Hospital visits for regular
    treatments                             7.8
    c Personal care Respite or substitute caree
    7.0                      9.1 Personal attendant services
    2.4                        0 Helpersf
    47.6                      5.0 Transportation Transportation
    services                                           15.3
    12.3 Modify a van or car
    1.0                            c Education Reader or interpreter
    1.6                        0 Special education
    57.8                            c Physical education or recreation
    17.5                            c Home Home modifications
    22.9                            c Equipment and supplies Assistive
    devices and technologiesg                               31.8
    7.5 Special diet
    8.4                            c Other Services from a center for
    independent living
    1.8                     18.9 (Table notes on next page) Page 26
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs aPercentages are
    based on 450 weighted cases from the National Center for Health
    Statistics' 1994 and 1995 National Health Interview Survey,
    including the Disability Supplement and Disability Followback
    Child's Questionnaire. Sampling errors at the 95-percent
    confidence level for the percentages of SSI children receiving
    services did not exceed plus or minus 6 percentage points. bWe
    considered a family to have paid for a service if a parent or
    other family member in the household used his or her own income or
    the child's SSI cash benefit, either entirely or in part. These
    percentages should be interpreted with caution given the small
    sample sizes upon which many were based. cData are not available
    because questions about who paid for the service were not asked.
    dIncludes services for mental health or substance abuse in
    inpatient or outpatient settings or mental health community
    support programs. Payment information was not collected for
    community support programs. ePayment information was collected
    only on paid employees of the family. fIncludes services received
    during the past 2 weeks rather than the past 12 months and
    includes services provided by family members. Payment information
    was collected only for up to four helpers per family. gIncludes
    medical devices and implants; payment information was collected
    only for medical devices. Table 2.2: Percentages of SSI Children
    in the Florida Survey Who Received
    Percent of SSI                   Percent of Disability-Related
    Services and Whose
    children who          service-receiving Families Paid for Them
    Over the Past
    received            children whose Year
    disability-related           families paid for Service
    servicesa                   servicesb Medical care, therapy, and
    insurance Doctor visits in a clinic or officec
    85.6                          13.9 Hospital carec
    39.4                           6.3 Skilled nursing services
    17.3                           8.8 Medications for CSHCNd
    77.4                          32.7 Counseling services
    22.1                           6.5 Higher health insurance
    premiums                                        3.8
    e Additional health insurance
    1.9                              e Physical therapy
    40.4                           4.7 Occupational therapy
    33.7                           2.9 Speech therapy
    41.8                           1.2 Respiratory therapy
    10.1                          15.0 Personal care Respite or
    substitute care                                             22.1
    47.7 Specialized day care
    2.9                          60.0 Personal attendant services
    9.1                          21.1 (continued) Page 27
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs Percent of SSI
    Percent of children who          service-receiving received
    children whose disability-related           families paid for
    Service
    servicesa                    servicesb Transportation
    Transportation to and from CSHCN providersd
    77.4                           92.4 Emergency transportation
    13.5                           22.2 Purchase a van or car for
    CSHCNc,d                                     17.8
    92.3 Education Educational services for CSHCNd
    19.2                           30.0 Home Extra charges on
    telephone bills                                       43.8
    98.9 Extra charges on electric or other utility bills
    29.8                          100.0 Home modifications
    13.0                           87.5 Equipment and supplies
    Assistive technologies
    15.9                           50.0 Home or durable medical
    equipment                                      34.6
    26.8 Special diet or formula
    27.4                           52.7 Special or additional clothing
    16.8                           94.4 Diapers beyond the usual age
    36.1                           76.3 Medical supplies (e.g.,
    bandages)                                      30.3
    67.2 Other Other
    13.9                           96.6 aPercentages are based on 208
    cases in the University of Florida's Institute for Child Health
    Policy 1996 survey of children with special health care needs.
    Sampling errors at the 95-percent confidence level for the
    percentages of SSI children receiving services did not exceed plus
    or minus 7 percentage points. bWe considered a family to have paid
    for a service if a parent or other family member in the household
    used his or her own income or the child's SSI cash benefit, either
    entirely or in part. These percentages should be interpreted with
    caution given the small sample sizes upon which many were based.
    cSome responses may include amounts for the receipt of or payment
    for services that are not specifically related to a child's
    disability. dCSHCN stands for children with special health care
    needs. eData are not available because questions about who paid
    for the service were not asked. Page 28
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs Families' Costs
    Vary    Data from the Florida survey show that the families who
    obtained Widely                  disability-related services by
    purchasing them incurred a wide range of costs.32 These families
    reported total costs ranging from $10 to more than $26,000 over
    the past year when all service expenditures are included, even
    some that were not necessarily attributable to the child's
    disability. Three-fourths of these families reported total annual
    costs of less than $3,000, half of the families reported total
    annual costs of $1,000 or less, and one-quarter of the families
    reported costs of $350 or less over the past year. When services
    that are not necessarily attributable to a child's disability
    (that is, doctor visits in a clinic or office, hospital care, and
    the purchase of a car or van) are excluded from the analysis,
    families reported total annual expenditures ranging from $2 to
    $11,700.33 Three-fourths of these families reported total annual
    costs of less than $1,782, half of the families reported total
    annual costs of $840 or less, and one-quarter of the families
    reported costs of $325 or less over the past year. Although SSI
    payments may be used for any type of expenditure benefiting the
    child, to provide a perspective on the magnitude of these costs,
    we compared total annual costs with the maximum SSI payments a
    family could receive for a child for a year.34 The Florida data
    show that of the families who incurred disability-related costs,
    about 90 percent reported total annual costs below the annual
    maximum allowable SSI payment.35 Moreover, about half of the
    families reported costs of less than 20 percent of the maximum SSI
    payment. However, about 10 percent of the families reported
    expenditures that exceeded the maximum SSI payment. Included in
    these calculations are families' reported costs for services that
    are not necessarily attributable to a child's disability. When
    these services are excluded from the calculations, about 95
    percent of the families reported 32We did not calculate total
    families' disability-related costs from NHIS data because the
    survey did not ask respondents about a comprehensive range of
    services and what they spent for them, as did the Florida survey.
    33Some or all expenditures for doctor visits in a clinic or
    office, hospital care, and the purchase of a car or van may be
    attributable to a child's disability. But because the data do not
    allow us to segregate the costs of the services that are or are
    not attributable to a child's disability, we present total annual
    costs of Florida families in two ways: both including and
    excluding the costs of these services. 34The monthly maximum SSI
    payment in 1996 was $470. This amount for the year was $5,640.
    35When we compared total annual costs for Florida families who
    incurred disability-related costs with the mean annual SSI
    payments for children in Florida in 1996, we found that about 86
    percent of these families incurred total annual costs less than
    the mean SSI payments for the year. The mean annual SSI payments
    for children in Florida amounted to $5,181 as of December 1996.
    Page 29                                             GAO/HEHS-99-99
    Supplemental Security Income Chapter 2 Families Incur a Wide Range
    of Disability-Related Costs annual disability-related costs below
    the annual maximum SSI payment.36 About 5 percent of the families,
    however, still reported disability-related costs that exceeded the
    maximum SSI payment. This pattern from the Florida data may not be
    representative of all SSI families in the United States. However,
    this data pattern is consistent with the nationwide pattern of
    disability-related expenditures presented in a 1981 study by
    Social and Scientific Systems, Inc., and Mathematica Policy
    Research, Inc. That study, which was based upon a survey of a
    national sample of SSI families, found that 5 percent of the
    families reported costs exceeding their monthly SSI payment, while
    nearly 80 percent had an SSI payment that exceeded their costs by
    more than $100 per month.37 Nevertheless, while it might seem from
    the data that the SSI payment covers disability-related costs for
    most families in Florida, such data do not indicate whether a
    child's disability-related needs have been met. Because
    expenditure data reflect only actual purchases, we are unable to
    determine whether or the extent to which families with SSI
    children might have purchased additional needed services, and thus
    incurred greater costs, had their incomes been higher.38 For
    example, the data do not allow us to determine the extent to which
    what was purchased reflects a tradeoff between disability-related
    services and basic necessities such as food, clothing, and shelter
    for the entire family. Because families can use the monthly SSI
    payment for any type of purchase that benefits the disabled child,
    some families may decide that they can use only a portion 36About
    95 percent of the families who incurred costs also reported annual
    disability-related costs less than the 1996 mean annual SSI
    payments for children in Florida. 37To examine the disability-
    related costs incurred by families with SSI children, researchers
    for Urban Systems Research and Engineering, Inc., selected from
    SSA's Supplemental Security Record a stratified random sample of
    about 2,500 children receiving SSI as of December 1977, who were
    living in the continental United States and were not living in
    institutions paid by Medicaid. The researchers completed about
    1,850 interviews, for a response rate of 74 percent. Social and
    Scientific Systems, Inc., and Mathematica Policy Research, Inc.,
    analyzed these data as part of their own study on the costs
    families said they incurred on a particular set of disability-
    related services. This set of services, however, was not
    comprehensive, since it did not include such common disability-
    related services as transportation and special diet and clothing.
    Because the survey did not ask families about a comprehensive
    range of services, its results may understate disability-related
    costs. In addition, 29 percent of the families reported being
    unable to afford certain disability-related services for their
    children. Specifically, 39 percent of the families reported that
    they needed additional health services, and 25 percent reported
    that they needed additional special equipment. These findings
    might be different if data were collected today, because advances
    in medicine and technology in the almost two decades since this
    study have resulted in new treatments and services for children
    with disabilities. See Urban Systems Research and Engineering,
    Survey of Blind and Disabled Children Receiving Supplemental
    Security Benefits, and Maxfield and Kendall, Disabled Children in
    the Supplemental Security Income Program. 38Data from the NHIS
    show that about 53 percent of the children on SSI live in a
    household with a monthly income below the federal poverty level.
    Monthly income includes transfer payments such as SSI. The data
    exclude the 12 percent of children in the sample for whom poverty
    status was unknown. Page 30
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs of the SSI benefit
    for purchasing disability-related services and that the remainder
    should go toward purchasing other necessities such as food,
    clothing, or shelter. In this regard, data from both surveys show
    some families reporting that they do not obtain needed services
    for their children. About 38 percent of the respondents in the
    Florida survey, and about 39 percent of the respondents in the
    NHIS, reported that they needed but did not obtain one or more
    services for their children. These survey data, however, likely do
    not reflect the full extent to which families needed but did not
    obtain services. The surveys generally asked families about
    services needed but not obtained at all but rarely asked about the
    need for additional services that families had already obtained
    but in insufficient quantity. Multiple Factors              A
    variety of factors, aside from the particular service needs of a
    child, Affect Families' Level        influence families' purchase
    of services and, hence, their level of disability-related costs. A
    key reason that some families do not purchase of Costs
    needed services is that they cannot afford them. Another factor is
    a family member's decision about employment, which affects not
    only a family's income, and thus its ability to purchase services,
    but also its need to purchase certain types of disability-related
    services. Finally, whether or not families are able to obtain
    services from programs also influences the level of their costs.
    Service Affordability         A key reason why some families do
    not purchase services that they do not Affects the Purchase of
    obtain from programs is that they cannot afford them. In the
    Florida Services                      survey, about 60 percent of
    families there who were unable to obtain one or more needed
    services for their children reported that they did not obtain them
    because they were too expensive. Similarly, 31 percent of the NHIS
    respondents who were unable to obtain needed services stated that
    they did not obtain them because they were too expensive. In
    addition, families and case managers we interviewed during our
    site visits mentioned service expense as a key issue in families'
    being able to purchase needed services. Employment Decisions
    Family employment decisions can influence the level of disability-
    related Can Affect the Purchase of    costs. A family member's
    decision to work or stay at home to care for a Services
    child with a disability affects not only the family's income, and
    thus its ability to purchase services, but also its need to
    purchase certain types of Page 31
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs services, such as
    specialized day care or certain types of physical or occupational
    therapy, that the family member at home may now be able to
    provide. Labor market participation studies suggest that, in
    making a decision about employment, a family member compares his
    or her potential wage with the availability, cost, and quality of
    child care and other services provided by the market and with the
    cost and quality of care and services that other family members,
    friends, or other community sources provide.39 The family member
    also weighs the public benefits, such as SSI and Medicaid, that
    could be obtained. For example, the child's SSI benefits provide
    some offset to earnings lost by staying at home, and other
    assistance programs, such as Medicaid, may cover a child's needed
    services at little or no cost to the family. Such assistance could
    make the family better off economically than it would be if the
    family member worked for low wages. In families with children, a
    family member whose wage earning potential is relatively low is
    less likely to be employed than a family member whose earnings
    potential is high. Moreover, the tendency for a lower-wage earner
    to choose to remain at home is likely to be greater in families
    with disabled children whose care needs may be greater or more
    expensive or who may be more difficult to place in market-based
    child care arrangements. For example, a parent with a disabled
    child may choose to quit work, reduce the number of hours he or
    she works, or make other work-related changes in order to care for
    the child at home if market-based child care, including
    specialized care related to the child's disability, is too
    expensive or not available. In the NHIS and Florida survey, many
    families reported that caring for a child's special health care
    needs reduced family employment. Almost one-third of the
    respondents in the NHIS said their children's health was a reason
    that someone in the family had not taken a job in order to care
    for a child. Moreover, about one-fifth of the NHIS respondents
    indicated that someone in their family had quit working or worked
    fewer hours because of a child's health. Similarly, nearly 40
    percent of the families participating in the Florida survey
    reported that caring for their children's special needs caused
    someone in the family to not work, 33 percent reported turning
    down a job, and 20 percent reported working less. 39See, for
    example, Child Care: Child Care Subsidies Increase Likelihood That
    Low-Income Mothers Will Work (GAO/HEHS-95-20, Dec. 30, 1994), p.
    3, and Rachel Connelly, "The Effect of Child Care Costs on Married
    Women's Labor Force Participation," Review of Economics and
    Statistics, Vol. 74, No. 1 (Feb. 1992), pp. 83-90. Page 32
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs Case managers,
    community organization representatives, and families we
    interviewed during our site visits described two key factors that
    contributed to some family members' working less or quitting work
    to care for their children. First, a shortage of some services,
    particularly specialized day care, causes some family members to
    forgo paid work in order to care for the children themselves.
    Second, the care-giving demands on some family members-for
    example, the need to take a child to multiple medical appointments
    or to make unanticipated visits to the child's school or day care
    center during normal work hours-lessens the feasibility of work. A
    decision to not work or to reduce working hours can affect both
    the ability to purchase services, through the resulting loss in
    earnings, and the need to purchase some types of services. Survey
    data show that the presence of a child with special needs in a
    family can reduce family income. About 40 percent of the Florida
    survey respondents reported that family income decreased after the
    birth of a special-needs child. Of the families whose income
    decreased, 50 percent reported a decrease of $600 or more a month
    and half of these reported a decrease of $1,400 or more. Three-
    quarters of the families with a decrease in income reported that
    the decrease continued for more than 12 months. In addition, about
    15 percent of the NHIS respondents reported having severe
    financial problems during the past year because of a child's
    health. Moreover, although the total extent of caregiving is not
    known from the survey data, 46 percent of the families in the
    Florida survey reported that someone in the household provided
    therapies or other health-related care for their children. In
    families in which a member has chosen to not work and to provide
    services, such as certain types of specialized day care, family
    expenditures for these services are lower than if the family had
    purchased them. Whether or Not Families    Whether or not families
    are able to obtain services through programs also Obtain Services
    Through    affects the disability-related expenses they incur.
    Tables 2.3 and 2.4 show Programs Affects Their     that public
    programs were widely cited as a source of full or partial Costs
    funding for many of the services that families obtained for their
    SSI children. For almost every disability-related service included
    in the NHIS and Florida survey, some proportion of families with
    SSI children reported public programs as sources of payment for
    services obtained during the previous year. For example, more than
    half of the respondents in the NHIS who obtained social work
    services, the services of a visiting nurse, physical therapist
    services, audiologist services, mental health services,
    respiratory therapy services, or personal attendant services for
    their Page 33                              GAO/HEHS-99-99
    Supplemental Security Income Chapter 2 Families Incur a Wide Range
    of Disability-Related Costs children reported Medicaid as a source
    of payment. Also, more than half of the families in the Florida
    survey who obtained counseling services, skilled nursing services,
    medications for a child's special health care needs, respiratory
    therapy, home or durable medical equipment, emergency
    transportation, doctor visits in a clinic or office, or hospital
    care for their children reported Medicaid as a source of
    payment.40 Table 2.3: Percentages of SSI Children in the NHIS Who
    Received Disability-Related Services and the Public and Private
    Sources That Paid for Them Over the Past Year Percent of service-
    receiving children who received services from public or Percent of
    SSI                                             private sourcesb
    children who received
    Other            Private          Other disability-related
    Rehabilitation         School        public            health
    private Service                                    servicesa
    Medicaid                    program           system      sourcec
    insurance         sourced Medical care and therapy Doctor visits
    for conditions lasting at least 12 months
    37.6               e                        e             e
    e                e                e Home visits by a doctor
    0.4              0                  100.0               0
    100.0                0                0 Hospital visits for
    regular treatments                                       7.8
    e                        e             e               e
    e                e Visiting nurse
    5.0           87.4                     3.1            3.1
    12.6              3.8                0 Social work services
    14.5           57.6                     8.2           12.3
    28.2              3.6            3.5 Medications for conditions
    lasting at least 12 months                      28.5
    e                        e             e               e
    e                e Mental health servicesf
    18.3           64.0                     1.0            6.2
    8.2              6.8                0 Physical therapy
    17.7           52.6                     3.6           44.8
    8.8              3.4            5.1 Occupational therapy
    12.2           37.2                     2.7           59.9
    6.7              3.6            1.7 Audiologist services
    9.3           69.3                     5.4           34.8
    3.6            13.4                 0 Recreational therapist
    services                  4.1           18.8
    17.8           56.2           17.3              8.4            4.9
    Speech therapy                                  27.7
    27.4                     0.9           72.8            3.8
    0.7            0.6 Respiratory therapy
    4.9           92.2                        0             0
    23.3              3.9                0 Personal care Respite or
    substitute care                       7.0               e
    e             e           8.3g                 e        42.1h
    Personal attendant services                      2.4
    71.9                    10.9            9.3           27.6
    0          18.4 Helpersi
    47.6            3.2                     2.4            4.3
    3.5                0            0.6 Transportation Transportation
    services                         15.3           20.8
    7.7           52.8           13.2                0
    0 Modify a car or van                              1.0
    e                        e             e               e
    e                e (continued) 40The questions relating to
    hospital care and doctor visits in a clinic or office were phrased
    in such a manner that one cannot determine the extent to which
    those services were related to the child's special health care
    needs. Page 34
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs Percent of service-
    receiving children who received services from public or Percent of
    SSI                                           private sourcesb
    children who received
    Other           Private           Other disability-related
    Rehabilitation         School       public            health
    private Service                               servicesa Medicaid
    program          system      sourcec         insurance
    sourced Education Special education                          57.8
    e                     e             e               e
    e               e Reader or interpreter                       1.6
    17.6                  10.9           56.2            0
    0              0 Physical education or recreation
    17.5                e                     e             e
    e              e               e Home Home modifications
    22.9                e                     e             e
    e              e               e Equipment and supplies Assistive
    devices and technologies                               31.8
    e                     e             e               e
    e               e Special diet                                8.4
    e                     e             e               e
    e               e Other Services from a center for independent
    living                          1.8           21.4
    9.2           5.9          59.6            18.9               0
    aPercentages are based on 450 weighted cases from the National
    Center for Health Statistics' 1994 and 1995 National Health
    Interview Survey, including the Disability Supplement and
    Disability Followback Child's Questionnaire. Sampling errors at
    the 95-percent confidence level for the percentages of SSI
    children receiving services did not exceed plus or minus 6
    percentage points. bThese percentages should be interpreted with
    caution given the small sample sizes upon which many were based.
    cExcludes the Department of Veterans Affairs (VA) and other
    military programs. For two services, less than 3 percent of those
    receiving the services reported VA or other military programs as
    sources of payment. For the remaining services, no respondent
    reported VA or other military programs as sources of payment.
    dExcludes family members not in the household and the parents'
    employers. No respondent reported family members not in the
    household as a source of payment for any service. For three
    services, less than 4 percent of those receiving the services
    reported a parent's employer as a source of payment. For the
    remaining services, no respondent reported a parent's employer as
    a source of payment. eData are not available because questions
    about who paid for the service were not asked. fIncludes services
    for mental health or substance abuse in inpatient or outpatient
    settings or mental health community support programs. Payment
    information was not collected for community support programs.
    gIncludes only responses to "any other source" of payment, which
    may include some private funding. Page 35
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs hIncludes only
    responses to "a paid employee of an organization or business,"
    some of which may receive public funding. iIncludes services
    received during the past 2 weeks rather than the past 12 months
    and includes services provided by family members. Payment
    information was collected only for up to four helpers per family.
    Table 2.4: Percentages of SSI Children in the Florida Survey Who
    Received Disability-Related Services and the Public and Private
    Sources That Paid for Them Over the Past Year Percent of service-
    receiving children who received services from public or private
    Percent of SSI
    sourcesb children who received
    Other       Private           Other disability-related
    Rehabilitation School                          public       health
    private Service                          servicesa Medicaid
    program system          Title V      sourcec    insurance
    sourced Medical care, therapy, and insurance Doctor visits in a
    clinic or officee                     85.6          76.7
    0       0           31.3           3.3          20.0
    1.7 Hospital caree                        39.4          84.1
    0       0           33.8           2.5          25.0
    3.8 Skilled nursing services                              17.3
    64.7                        0     12.1          23.5          12.1
    9.1              3.0 Medications for CSHCNf
    77.4          85.0                        0       0           17.0
    1.9          13.8              1.3 Counseling services
    22.1          60.9                      4.3     26.1          10.9
    10.9           8.7               0 Higher health insurance
    premiums                      3.8                 g
    g       g                g          g              g
    g Additional health insurance                               1.9
    g                    g       g                g          g
    g                 g Physical therapy                      40.4
    47.7                        0     48.9          21.2           9.4
    8.2              1.2 Occupational therapy                  33.7
    39.1                        0     64.8          13.0           8.6
    4.3              1.4 Speech therapy                        41.8
    25.6                        0     70.5           4.7           4.6
    2.3               0 Respiratory therapy                   10.1
    73.7                        0       0           15.8            0
    15.8               0 Personal care Respite or substitute care
    22.1          17.8                      2.2       0            8.9
    34.8           2.2              2.2 Specialized day care
    2.9            0                        0       0           20.0
    80.0             0               0 Personal attendant services
    9.1         42.1                        0     21.1          10.5
    25.0             0               0 Transportation Transportation
    to and from CSHCN providersf                            77.4
    8.3                      0.6       0            2.4           1.8
    0.6               0 Emergency transportation
    13.5          76.7                        0       0           17.2
    0           26.7              3.4 Purchase a van or car for
    CSHCNe,f                          17.8             0
    0       0                 0        2.6             0
    5.1 (continued) Page 36
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs Percent of service-
    receiving children who received services from public or private
    Percent of SSI
    sourcesb children who received
    Other        Private           Other disability-related
    Rehabilitation School                            public
    health        private Service
    servicesa Medicaid                      program system
    Title V      sourcec    insurance         sourced Education
    Educational services for CSHCNf
    19.2            7.5                         0     56.1
    2.5          12.5            2.5                0 Home Extra
    charges on telephone bills                           43.8
    1.2                         0       0                 0        2.4
    0                0 Extra charges on electric or other utility
    bills                                     29.8            1.6
    0       0            1.6           1.6              0
    0 Home modifications                        13.0              0
    0       0            8.3          20.0              0
    4.2 Equipment and supplies Assistive technologies
    15.9            3.1                       3.1     37.5
    9.4           3.1            3.1            9.4 Home or durable
    medical equipment                         34.6          52.8
    0       0           50.0           1.4           15.1
    4.2 Special diet or formula                   27.4          28.1
    0       0           13.8          22.4            1.8
    0 Special or additional clothing
    16.8            6.1                         0       0
    6.1            0               0                0 Diapers beyond
    the usual age                                 36.1          11.7
    0       0            7.8          15.6            2.6
    1.3 Medical supplies (e.g., bandages)
    30.3          34.4                        1.6       0
    26.2           1.6            8.1            1.6 Other Other
    13.9          10.7                          0      3.7
    7.4            0             3.7                0 aPercentages are
    based on 208 cases in the University of Florida's Institute for
    Child Health Policy 1996 survey of children with special health
    care needs. Sampling errors at the 95-percent confidence level for
    the percentages of SSI children receiving services did not exceed
    plus or minus 7 percentage points. bThese percentages should be
    interpreted with caution given the small sample sizes upon which
    many were based. cExcludes VA and other military programs. For
    five services, no more than 3 percent of those receiving the
    service reported VA or other military programs as sources of
    payment. For the remaining services, no respondent reported VA or
    other military programs as sources of payment. dExcludes family
    members not in the household as a source of payment. For 11
    services, less than 5 percent of those receiving the services
    reported family members not in the household as a source of
    payment. For the remaining services, no respondent reported family
    members not in the household as a source of payment. eSome
    responses may include amounts for the receipt of or payment for
    services that are not specifically related to a disability. fCSHCN
    stands for children with special health care needs. gData are not
    available because questions about who paid for the service were
    not asked. Page 37
    GAO/HEHS-99-99 Supplemental Security Income Chapter 2 Families
    Incur a Wide Range of Disability-Related Costs In addition, more
    than half of the respondents in the NHIS who obtained services
    such as occupational therapist services, services from a speech
    therapist or pathologist, or recreational therapist services for
    their children reported the school system as a source of payment.
    And more than half of the families in the Florida survey who
    obtained occupational therapy, speech therapy, or educational
    services related to special health care needs (such as tutoring,
    books on tape, and sensory integration) for their children
    reported the school system as a source of payment. Data from both
    surveys also show that while some families obtained services that
    were funded in whole or part by a program, other families
    purchased the same types of services. For example, many families
    in both surveys reported Medicaid as a source of payment for a
    number of disability-related services, yet some families also
    reported purchasing these same types of services. A variety of
    factors discussed in chapter 3 may affect a family's ability to
    obtain services through programs. Page 38
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services A variety of factors affect families' receipt of
    services through programs. (See table 3.1.) First, SSI beneficiary
    status generally does not entitle a child to a program's services.
    Because of certain aspects inherent to the design of a program-
    such as eligibility criteria, the number of available service
    slots, and whether it covers needed services-some SSI children may
    not receive services from particular programs. Second, because of
    difficulties in identifying who needs services and what services
    they need, programs may not be serving some children. Third, once
    children's service needs are identified, their gaining access to
    some program services that are in short supply can be difficult.
    Overall, families play an important role in obtaining services for
    their children. Yet some families' limited knowledge of program
    options and their rights to them, limited ability to proactively
    pursue services for their children, or lack of transportation or
    other supports hinders their ability to play this role, which may
    result in their not acquiring some services. Table 3.1: Factors
    Affecting Families' Receipt of Services From Programs
    Factor                    Aspect Program design            Program
    eligibility criteria Number of available service slots Service
    coverage Identifying eligible      Challenges in making service
    decisions children and their        Insufficient understanding of
    childhood disability needs                     Screening for
    services less frequently than HHS recommends Gaining service
    Provider shortages access                    Program officials'
    concerns about service costs Limited help gaining access to
    program services Families'                 Limited knowledge of
    program options and legal rights circumstances             Limited
    ability to proactively pursue services Lack of transportation and
    other supports facilitating access Program Design May
    Some children, despite their SSI beneficiary status, do not
    receive services 41 Affect Whether                            from
    programs because of certain aspects inherent to program design. An
    SSI child may not meet the eligibility criteria to qualify for a
    program. Children Receive                          Even when a
    child qualifies, he or she still may not be admitted to the
    Services                                  program because the
    service slots may be filled. Moreover, once a child has been
    admitted to a program, it may not cover a service that the child
    needs. Or if the service is covered, the child may not fulfill
    requirements to receive it. 41We were unable to identify the
    extent to which any of these aspects of program design affect
    access to program services for children on SSI, because the
    programs in large part do not track program participation by
    whether a child is an SSI recipient. Page 39
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services A Child May Not Meet            Even when
    children are SSI recipients, they may not meet the eligibility
    Program Eligibility Criteria    criteria that a program uses to
    screen admissions. For example, in most states, children on SSI
    automatically qualify for Medicaid. In 11 states, however,
    children must meet more restrictive disability, income, and asset
    standards than those required to qualify for SSI benefits. As a
    consequence, some of the children on SSI in those 11 states may be
    ineligible for Medicaid, although SSA and HCFA officials told us
    they do not know the size of the ineligible population. Children
    on SSI are also not automatically eligible for the Special
    Education or Early Intervention programs. Regardless of whether
    children receive SSI benefits, to qualify for Special Education,
    they must undergo a separate assessment to determine whether they
    have one of several broad qualifying disabilities-such as mental
    retardation-or, in some states, experience a developmental
    delay.42 Any child assessed as having a qualifying disability or
    delay must also demonstrate that special educational services are
    needed in order to receive an appropriate education. Eligibility
    for Early Intervention requires an infant or toddler to be
    developmentally delayed as defined by the state or have a
    condition likely to cause a delay.43 As a result, a child
    receiving SSI may not be found eligible for these programs.
    Further, children younger than 16 on SSI do not automatically
    qualify for title V services, even though they are to be referred
    to the state title V program for rehabilitation services. Rather,
    children on SSI must meet the individual state title V program's
    eligibility criteria. For example, in about 38 states, children on
    SSI-like all other applicants-must have at least one of several
    specific conditions to be eligible for the title V program.44 But
    among these states, some of the more prevalent impairment types
    among the population of children on SSI do not qualify a child for
    title V services. In fact, children with mental retardation or
    other mental impairments 42To qualify for Special Education, a
    child must generally be aged 3 through 21. Children aged 3 through
    5 and 18 through 21 are eligible for special education if allowed
    under state law. Some states and localities, at their discretion,
    also provide services to children 3 through 9 who are experiencing
    a developmental delay. 43Eligibility for Early Intervention
    requires that a child be younger than 3 years old. 44To obtain
    these data, we performed an analysis of findings from a 1997
    survey of state title V programs conducted by the Institute for
    Child Health Policy at the University of Florida. The Institute
    collected data on eligibility criteria and scope of services from
    50 state title V programs and the District of Columbia's title V
    program. We confirmed our analysis of this survey with 44 state
    title V programs and the District of Columbia's program. Among the
    remaining six programs, three did not reply to our request for
    confirmation, and we did not reanalyze data on three programs that
    generally do not serve children on SSI. See Institute for Child
    Health Policy, University of Florida, Directory of State Title V
    CSHCN Programs' Eligibility Criteria and Scope of Services
    (Gainesville, Fla.: May 1997). Page 40
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services (accounting for 64 percent of all children
    receiving SSI) do not qualify for the program in 25 states.45 Some
    Children Are Not        A child who meets a program's eligibility
    criteria might not be admitted to Admitted to Programs         the
    program if the service slots are filled. In our site visits,
    programs Because Service Slots Are    offering specialized day
    care, respite care, and summer recreation were Limited
    identified as having a limited number of slots. In contrast, other
    programs, such as EPSDT and Special Education, admit all entitled
    individuals. Programs with a limited number of available slots use
    various approaches to decide which qualifying children to select
    for admission. For example, a 1995 survey of 58 state family
    support programs by the Human Services Research Institute found
    that they used one or more approaches to select children: 16
    percent selected all who applied, half made "first come, first
    served" selections, 36 percent made selections on the basis of
    "need" according to the program's definition (for example,
    severity of a child's disability or family coping skills or stress
    level), and 10 percent used a lottery.46 If the number of
    available slots is limited, children either may not be admitted to
    a program or may be placed on a waiting list, which, if
    sufficiently lengthy, may effectively mean some will not be
    admitted to the program. About half of the family support programs
    in 1995 had a waiting list, and one-quarter had a waiting list of
    400 or more families. A Texas family support program had a waiting
    list of nearly 10,200 in 1996. And among the 13 percent of NHIS
    respondents who tried to obtain additional Special Education
    services, nearly one-quarter said that their children had been on
    a waiting list for one or more Special Education services during
    the previous year. 45A child with a mental impairment, such as
    mental retardation, can qualify for a title V program if he or she
    has a secondary physical impairment that qualifies the child for
    the program. According to our analysis of the Institute for Child
    Health Policy survey of state title V programs, some title V
    programs use other types of eligibility criteria, as follows: the
    child's condition results in impaired growth, development, or
    limited functioning or other factors related to the severity of
    the condition (35 programs); nonintervention by the program may
    lead to a disabling condition or the child's condition may put him
    or her at risk for a disability or handicap (26 programs); the
    child's condition requires a particular treatment or is amenable
    to treatment (32 programs); the child's condition lasts for a
    certain period of time (28 programs); needed services are
    available (7 programs); the child's condition affects the family
    (6 programs). 46John Agosta and Kerri Melda, Results of a National
    Survey of Family Support Programs for People With Disabilities and
    Their Families (Salem, Ore.: Human Services Research Institute,
    1995). Page 41
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services Service Coverage Can      Once a child is
    admitted to a program, it may not cover all the Affect Service
    Receipt    disability-related services that he or she needs. The
    largest federal and state programs serving children with
    disabilities generally do not cover home-related services (extra
    telephone and utility charges and home modifications), certain
    supplies (diapers needed by a disabled child who is beyond the
    usual age for using them and special diet or formula and
    clothing), respite care, over-the-counter medications for
    disability-related conditions, and expenses related to the
    purchase or modification of a vehicle beyond what a family would
    normally spend. (See appendix II for a summary of the services
    covered by the programs in our study.) For example, EPSDT and
    Special Education typically do not cover any of these services.
    Similarly, with the exception of respite care and special
    clothing, Early Intervention does not cover these services. In
    addition, the Medicaid Home and Community-Based Waivers and title
    V programs allow the states to determine the scope of covered
    services, and many of the states have opted not to cover these
    services. Even when a program covers a needed service, a child may
    not meet the eligibility requirements to receive it. Programs use
    a range of requirements that must be met in order to obtain a
    service. For example, in order for a child to receive a Medicaid
    service in a state, including an EPSDT service, the service must
    be "medically necessary." Medical necessity is defined and
    assessed by each state's Medicaid program and therefore can vary
    from state to state. Similarly, a Special Education service must
    be deemed "educationally necessary" owing to a child's impairment
    for the child to receive it. Difficulties in           Because of
    difficulties in identifying which children need services and
    Identifying Eligible      what services they need, programs may
    miss serving some children who need services. First, making
    decisions about the type and amount of Children and Their
    services a child needs is difficult: The decisions are inherently
    complex, Needs May Hinder          and standardized methodologies
    to aid in making some decisions are lacking. Second, according to
    the results of research studies and site visit Families in
    Obtaining     interviews with program officials, case managers,
    and community Services                  organizations, some
    providers who deliver health and educational services lack a
    sufficient understanding of childhood disability. Finally, state
    Medicaid programs are not screening children for needed EPSDT
    services at the frequency recommended by the Secretary of HHS,
    which means that some children may have disability-related service
    needs that the program has not identified. Page 42
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services Difficulties in Making      Making decisions
    about the type and amount of services that are necessary Service
    Decisions Can       for children with disabilities can be
    difficult. Research studies and experts Lead to Discrepant Views
    generally agree that the service needs of children with
    disabilities are on Which Services Are       highly
    individualized, which makes the task of determining their need for
    47 Necessary                   services inherently complex.
    Exacerbating this difficulty is the lack of a clear scientific
    consensus on the appropriate service interventions for some
    disabilities.48 For example, title V program directors have said
    that managed care plans have differing interpretations of what is
    medically necessary for children and have called for better
    definitions of medical necessity for early intervention
    services.49 To the extent that a standardized methodology for
    determining service need is unavailable, program officials can
    have difficulty knowing the precise type and amount of services
    and items necessary to meet a child's needs. In such instances,
    professional judgment is significant in decisionmaking. For
    instance, HCFA officials told us that decisions Medicaid makes
    about the medical necessity of certain services, such as assistive
    technology, diapers, recreational therapy, and personal care for a
    child with mental illness, involve professional judgment and could
    thus lead to divergent decisions among program officials.50 When
    program officials disagree, one may decide that a child needs a
    particular service while another may reach the opposite
    conclusion. Moreover, in several instances during our site visits,
    we also heard divergent views between program officials and
    providers (such as physicians) about whether a service is
    necessary. 47Two children with the same disability could have
    quite different service needs. The individualized nature of need
    stems from the multiple factors that influence need, including
    severity of impairment, functional level, the characteristics of
    the families, and broader physical and social environments. 48Some
    experts have noted that disability in children has not been the
    focus of much scientific study. For instance, the cause,
    progression, and effect of some impairments are not well
    understood, and the tools to measure these concepts have not been
    well developed. 49Margaret McManus and others, Strengthening
    Partnerships Between State Programs for Children With Special
    Health Needs and Managed Care Organizations (Washington, D.C.:
    Maternal and Child Health Policy Research Center, Mar. 1996). This
    50-state mail survey of title V programs, prepared for the HHS
    Maternal and Child Health Bureau, focused on the critical issues
    concerning managed care initiatives. 50Discrepant views also occur
    over whether the benefit derived from a service is primarily
    educational or medical. For example, assistive technologies, such
    as augmentative communication devices, are subject to debate and
    disagreement as to whether they have primarily an educational or a
    medical benefit. Page 43
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services Some Providers'               According to
    research studies and interviews we conducted with program
    Insufficient Understanding    officials, case managers, and
    community organizations, some providers of Childhood Disability
    who deliver health and educational services to children lack
    sufficient May Hamper Effective          understanding of
    childhood disability. Consequently, programs may not Service
    Determination         identify some children with disabilities who
    need services or may not provide services to children who may be
    eligible for them. Teachers, for example, play a key role in
    identifying students who need Special Education services and in
    helping to determine what services they need. But some teachers
    may not be fully prepared to play this role. For example, the
    National Longitudinal Transition Study, which collected nationwide
    data between 1987 and 1990, found that only 19 percent of regular
    education teachers received training on the needs of disabled
    students.51 In addition, Alabama's Supreme Court held in 1993 that
    some school districts could not offer certain programs to children
    with disabilities because there were no qualified staff to teach
    them. As a result, local authorities were unable to ensure that
    even minimum standards in instruction for children with
    disabilities were being met.52 Similarly, in 1994 during field
    hearings on IDEA, several witnesses stressed the need for teacher
    preparation in learning about disabilities and working with
    students who have them.53 The 1997 amendments to the IDEA state
    that "over 20 years of research and experience has demonstrated
    that the education of children with disabilities can be made more
    effective by . . . supporting high-quality, intensive professional
    development for all personnel who work with" children with
    disabilities.54 Yet the Department of Education has stated that
    there is "convincing evidence of a national substantial chronic
    shortage of special education teachers who are fully certified in
    their positions."55 51Congressional Research Service, Special
    Education: Issues in the State Grant Program of the Individuals
    With Disabilities Education Act (Washington, D.C.: Mar. 20, 1995),
    pp. 30-31. The National Longitudinal Transition Study is the most
    current information on educational outcomes for students with
    disabilities. 52Opinion of the Justices, No. 338, 624 So.2d 107
    (Ala. 1993). 53Equal Educational Opportunity and Nondiscrimination
    for Students with Disabilities: Federal Enforcement of Section
    504, Equal Educational Opportunity Project Series, Vol. II
    (Washington, D.C.: United States Commission on Civil Rights, Sept.
    1997), p. 262. 54Amendments to the Individuals With Disabilities
    Education Act, P.L. 105-17, title I, June 4, 1997. 55Department of
    Education, Twentieth Annual Report to Congress on the
    Implementation of the Individuals With Disabilities Education Act
    (Washington, D.C.: 1998), p. vi. Page 44
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services Screening for Needed            State Medicaid
    programs do not always screen children for EPSDT services Services
    Is Not Always          at the frequency recommended by the
    Secretary of HHS. Therefore, some Conducted at the
    children with disabilities may have needs for services that the
    program has Recommended Frequency           not identified and
    that they may thus not be receiving. The screening component of
    EPSDT is designed to identify children's health problems before
    they become more complex or disabling and require more costly
    treatment. Specifically, each state's EPSDT program must provide
    age-appropriate health assessments-that is, screening
    examinations-according to a schedule the program establishes.
    However, research has consistently shown that state EPSDT programs
    did not achieve HHS's goal of providing 80 percent of the annual
    scheduled screening examinations by 1995.56 A review of EPSDT
    operations between 1989 and 1997 found that the program "has never
    met its objective to ensure that children received continuous and
    comprehensive medical care. EPSDT participation rates-even for the
    basic screening examinations-have been low throughout the history
    of the program."57 Also, in 1998, we reported that 81 percent of
    children receiving Medicaid benefits had not been previously
    screened for blood lead toxicity.58 Gaining Access to
    Even when a child's service needs are identified, gaining access
    to some Needed Program                  program services can be
    difficult. A child's family may have difficulty gaining access to
    services because some providers and the services they Services Is
    Sometimes offer are either unavailable or in short supply in some
    communities. Difficult                       Additionally, program
    officials' concerns about service cost can affect a child's access
    to special education services. Further, service access may be
    hindered because program officials do not always help families
    gain access to related programs' services. 56The Omnibus Budget
    Reconciliation Act of 1989 (P.L. 101-239) required the states to
    establish timetables for well-child examinations consisting of
    medical, dental, vision, and hearing screens for each child
    covered by EPSDT. In response to the act, the Secretary of HHS set
    the goal that state EPSDT programs were to provide 80 percent of
    the annual screening services recommended for each age group by
    1995. Although research has consistently shown that EPSDT programs
    did not achieve their screening goals, some researchers have noted
    that EPSDT participation rates tend to understate the number of
    screening examinations provided by Medicaid, as providers can
    either fail to correctly report a visit as an EPSDT screening
    examination or fail to report the visit at all. 57A. Sardell and
    K. Johnson, "The Politics of EPSDT Policy in the 1990s: Policy
    Entrepreneurs, Political Streams, and Children's Health Benefits,"
    The Milbank Quarterly, Vol. 76, No. 2 (1998), p. 179. 58Medicaid:
    Elevated Blood Lead Levels in Children (GAO/HEHS-98-78, Feb. 20,
    1998). We based this study on data from the National Health and
    Nutrition Examination Survey, Phase 2 (1991-94). Page 45
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services Providers Are in Short      Some providers and
    the services they offer are either unavailable or in Supply
    short supply in some communities, hindering access to services.
    The Florida and NHIS survey results indicate that some disability-
    related services are unavailable to some families who need them.
    Among the families in the Florida survey who were unable to obtain
    one or more needed services for their children, 23 percent said
    they did not obtain a needed service because it was unavailable.
    And among NHIS participants who were unable to obtain needed
    services, about 40 percent responded that they did not obtain a
    service because it was unavailable. Experts and representatives
    from community organizations and case managers with whom we met
    during our site visits told us that provider shortages reduce
    service availability and, thus, family access to services. For
    example, in our site visits, a range of services were mentioned as
    being in short supply: specialized day care; respite care;
    occupational, speech, and physical therapies; care coordination;
    transportation; special education; special equipment; and mental
    health and physician services. Likewise, title V program directors
    in a 50-state survey most frequently cited overall shortages in
    pediatric specialty providers when asked about their concerns
    regarding pediatric managed care.59 Moreover, as noted earlier,
    the Department of Education maintains that the shortage of fully
    certified special education teachers is a chronic national
    problem.60 In addition, we heard during our site visits that
    shortages of some services-Early Intervention services,
    transportation, specialized day care, respite care, and medical
    services-are more pronounced in rural than in other areas.
    Researchers have found similar problems in rural areas of the
    country. For example, title V directors reported that shortages in
    pediatric specialty providers were particularly acute in rural
    states.61 Program Officials'          Research studies and
    information from our site visits indicate that the Concerns About
    Costs Can    concerns program officials have about service cost
    can affect a child's Limit Access to Special     receipt of
    special education services. Because some disability-related
    Education Services          services are expensive, concerns about
    their cost may limit children's access to them. For example, the
    U.S. Commission on Civil Rights reported that the cost of
    assistive technologies is a particular concern of 59McManus and
    others, Strengthening Partnerships Between State Programs.
    60Department of Education, Twentieth Annual Report to Congress on
    the Implementation of the Individuals With Disabilities Education
    Act. 61McManus and others, Strengthening Partnerships Between
    State Programs. Page 46
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services school officials and that technology devices and
    services for students in special education programs can be a major
    expenditure for local school districts. Difficulties in funding
    these services can prevent schools from using technology in
    educating students with disabilities.62 During our site visits,
    program officials, case managers, and representatives from
    community organizations told of instances in which concerns about
    cost affected a child's receipt of services. In order for a child
    to receive services through the Special Education program, the
    IDEA requires that a local team prepare an Individualized
    Education Program (IEP) detailing the specific special education
    and related services, supports, and aids needed for the child to
    receive an appropriate education. In some cases, the teams
    responsible for determining the child's special education service
    needs and preparing the child's IEP exclude a service-such as
    assistive technology used for communication-from the IEP because
    of its cost. Some Programs Do Not         Experts note that some
    program officials provide only limited information Help Families
    Gain Access    to families about community resources or do not see
    themselves as to Services From Other       responsible for
    providing information about services available from other Programs
    programs. In addition, we found during our site visits that some
    programs do not refer children with disabilities to other
    programs. For example, several case managers discussed school
    systems that did not refer children with disabilities to the state
    agency that provides vocational rehabilitation, although these
    children had reached an appropriate age for school-to-work
    transition planning. Moreover, case managers are often assigned to
    families but focus primarily on services offered by their own
    program and are not always aware of services from other programs.
    62Equal Educational Opportunity and Nondiscrimination for Students
    with Disabilities, pp. 311-12. Page 47
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services Limited Program        Some families' limited
    knowledge of programs and services, limited ability Knowledge and
    Other    to proactively pursue services, or lack of transportation
    or other supports hinder their ability to obtain services for
    their children, which may then Circumstances          not be
    acquired. According to evidence from research studies and site
    Impede Some            visits, families who are knowledgeable
    about program services and procedures and proactive in pursuing
    them are more successful in Families From          obtaining
    services for their children than those who are not.63 For
    Obtaining Program      instance, when programs do not refer
    children with disabilities to other Services
    programs that provide needed services, families have a greater
    responsibility to identify those programs and arrange for service
    delivery. However, we learned from our site visits, review of
    research studies, and interviews with experts that some families
    lack this knowledge and ability to be proactive in obtaining
    services. For example, some families do not know about services
    that programs offer. Thus, these families may be unaware that
    disability-related services, such as respite care, exist, or the
    families may pay for services because they do not realize that a
    program covers them. Still other families are unfamiliar with
    their legal rights to services and the procedures established to
    protect those rights. Finally, some families are unfamiliar with
    the steps, procedures, and terminology needed to gain access to
    program services. In addition, our site visits and research show
    that some families are described as being unable to be proactive,
    hesitant to question decisions of professionals, "reluctant to
    speak up" and share information, or increasingly "apathetic" about
    securing services as their children grow older. Some families are
    reportedly hesitant to assert their rights to services because
    they fear retaliation against their children or do not want the
    stigma of accepting public benefits. Other families simply lack
    the time and energy to dedicate to pursuing services for their
    children. One family, for example, spoke to us of being "too tired
    to try to pursue" services that might be helpful. And some parents
    with a cognitive or physical limitation are not fully able to
    aggressively seek and gain access to services for their children.
    63For example, a study of the implementation of federal policy for
    young children with disabilities found that the following family
    factors influenced the amount and nature of services provided to a
    child: knowledge of programs serving children with disabilities
    and how to gain access to services within these programs, ability
    to advocate persistently for the child's and family's needs, and
    resourcefulness in pursuing these ends. The absence of these
    factors was sometimes associated with fewer services, while their
    presence was associated with more and higher-quality services.
    Gloria L. Harbin and others, Implementing Federal Policy for Young
    Children with Disabilities: How Are We Doing?, a publication of
    the Early Childhood Research Institute on Service Utilization
    (Chapel Hill, N.C.: Frank Porter Graham Child Development Center,
    Mar. 1998). The Institute is funded by the Department of
    Education, Office of Special Education Programs, under a
    cooperative agreement (H024T0002) with the University of North
    Carolina and Rhode Island College. Page 48
    GAO/HEHS-99-99 Supplemental Security Income Chapter 3 Program,
    Service, and Family-Related Factors Affect Families' Receipt of
    Program Services Finally, we learned during our site visits that
    some families lack transportation or other supports needed to help
    obtain program services. For example, some families do not own a
    car, do not have access to reliable and accessible public
    transportation, or do not have friends or family who are willing
    and able to provide transportation assistance. Indeed, lack of
    transportation is an important factor causing families to miss
    appointments with service providers. Moreover, some families do
    not have telephones, making it difficult for them to contact
    providers or an ambulance in an emergency and increasing the
    difficulty case managers have in maintaining contact with them.
    Page 49                                        GAO/HEHS-99-99
    Supplemental Security Income Appendix I 38 Disability-Related
    Services Used in Collecting and Analyzing Site Visit Data Service
    Definition Medical and therapy Doctor visits in a clinic or office
    Self-defined; excludes mental health services and hospital or
    emergency room visit Home visits by a doctor                Self-
    defined; excludes mental health services Hospital care
    Includes inpatient and outpatient hospital care; excludes mental
    health services Skilled nursing services (RN/LPN),
    Professional nursing care in the home for children including
    visiting nurse               with extensive personal and medical
    needs Dental care                            Self-defined
    Prescription medication                Self-defined Over-the-
    counter medication            Self-defined Counseling or mental
    health services, Inpatient and outpatient psychological or social
    including social work                  therapy or counseling
    provided by a psychologist, psychiatrist, social worker,
    counselor, or clergy member Health insurance
    Higher premiums or additional insurance Physical therapy
    Examination, treatment, and instruction in order to detect,
    assess, prevent, correct, alleviate, and limit physical
    disability, bodily malfunction, and pain from injury, disease, and
    any other bodily or mental condition Occupational therapy
    The use of any occupation for remedial purposes; the use of
    selected tasks to restore, reinforce, and enhance performance,
    facilitate learning of skills and functions essential for
    adaptation and productivity, diminish or correct pathology, and
    promote and maintain health Audiology
    Therapy for impaired hearing Recreational therapy
    Self-defined Speech therapy
    Identification, assessment, and rehabilitation of speech or
    language disorders such as articulation, stuttering, or delayed
    language Respiratory therapy                    Treatment,
    management, and care of patients with respiratory problems (e.g.,
    aerosol therapy, use of nebulizer, ventilation) Child care Respite
    care                           Substitute care for child with
    chronic illness or disability so primary caregiver is temporarily
    freed from responsibility Specialized day care
    Care or supervision for approximately 8 hours per day in a special
    setting, after which the child returns home in the afternoon or
    the evening; care provided by a person trained to handle medical
    emergencies or perform special health procedures (continued) Page
    50                                   GAO/HEHS-99-99 Supplemental
    Security Income Appendix I 38 Disability-Related Services Used in
    Collecting and Analyzing Site Visit Data Service
    Definition Personal attendant services, home           A
    professional trained to help parents with the health aide, or
    special help and            care of a chronically ill or disabled
    child in the supervision                                 home or
    with household tasks; a personal care attendant provides services
    such as bathing, dressing, and lifting child and is an employee of
    a health care agency Services from a center for
    Self-defined independent living Transportation Transportation
    Provide transportation to and from a doctor or service provider
    for reasons related to special health care needs or disability;
    excludes emergency transportation Emergency transportation
    Helicopter or ambulance Purchase a van or car to transport a
    Self-defined; excludes modifications to a van or child with
    special health care needs        car Modify a van or car to
    transport a          Installing special equipment because of a
    child's child with special health care needs        impairment or
    health problem. Includes hand controls, hand rails, straps,
    specialized handles, ramps, or lifts; power controls for windows,
    mirrors, seat, or steering; automatic transmission; air
    conditioning; a button that opens the door; a large trunk or
    storage area Education Educational services related to
    Tutoring, books on tape, extra books, modified special health care
    needs                   pens, adaptive backpack, sensory
    integration, etc. Reader or interpreter
    Self-defined School-to-work transition                   Services
    to facilitate a disabled child's entry into the workforce Home
    Extra telephone charges                     Self-defined Extra
    electric or other utility charges     Self-defined Home
    modifications                          Widened doorways or
    hallways; ramps or street-level entrances; railings; automatic or
    easy-to-open doors; accessible parking or drop-off site; bathroom
    or kitchen modifications; elevator, chair lift, or stair glide;
    alerting devices, etc. Equipment and supplies Assistive
    technologies                      Computers, learning aids,
    devices to assist speech, hearing aids, etc. (continued) Page 51
    GAO/HEHS-99-99 Supplemental Security Income Appendix I 38
    Disability-Related Services Used in Collecting and Analyzing Site
    Visit Data Service
    Definition Home or durable medical equipment
    Respirator, nebulizer, inhaler, ventilator, suction machine;
    intravenous pump; feeding pump; wheelchair; specialized seating,
    pads; batteries, chargers, remote controls for environment or
    lifts, lights, computer; oxygen; portable equipment and set-ups;
    walking aids, braces, crutches, walkers; scooters; other types of
    braces; nonallergenic bedding; special pillows, leg rolls or
    props, etc. Special diet or formula                       Ensure,
    Pedialyte, pureed baby foods or other products; high-calorie or
    nutrition drinks; homemade food (cost of ingredients); adaptive
    straws, drinking glasses, specialized utensils, etc. Special or
    additional clothing                Adaptive clothing or tailoring;
    adaptive shoes, Velcro strips instead of laces, built-up heels,
    etc. Diapers beyond the usual age                  Self-defined
    Implants                                      Ear vent tube; shunt
    to drain fluid; artificial joint; implanted lens; implanted pin,
    screw, nail, wire, rod, plate; artificial heart valve; pacemaker;
    silicone implant; infusion pump; cochlear implant; other organ
    implant, etc. Medical supplies
    Bandages or tape; distilled water; saline solution; suction
    catheters; gastronomy tubes; feeding tubes; syringes; dip sticks
    to check urine; gauze pads; skin creams; alcohol; cotton swabs,
    balls; urinals; chux pads; lambskin; tracheostomy and supplies;
    catheters and bags, etc. Recreation Special recreation or physical
    Self-defined education Coordination of care Coordination of
    services                      The professional coordination of
    services for families with children with chronic conditions or
    disabilities. Includes coordinating all medical care, which means
    keeping in touch with the child's doctors or therapists who know
    the results of tests and treatments and are aware of the child's
    prescription medicines. Also includes arranging nonmedical care
    (such as social services and personal care services), special
    education services, and transportation to appointments and
    evaluating service needs. Sources: GAO's compilation of services
    and their definitions based on the 1994 and 1995 National Health
    Interview Survey, including the Disability Supplement and
    Disability Followback Child's Questionnaire, and the University of
    Florida's Institute for Child Health Policy 1996 survey of Florida
    children with special health care needs. Page 52
    GAO/HEHS-99-99 Supplemental Security Income Appendix II
    Disability-Related Services Covered by Selected Programs Percent
    of Percent of           state state title        family Medicaid
    V       support Number of Special       Early
    programs        programs Service                      EPSDT
    waivers Educationa    Interventiona                (n=21)
    (n=44) Medical and therapy Doctor visits in a clinic    Yes
    0 Nob           Nob                               62%
    84%c or office Home visits by doctor        Yes
    0 No            Nob                               14
    84c Hospital care                Yes                          0 No
    No                                52             84c Skilled
    nursing services Yes                             15 No
    Yes                               43             84c (RN/LPN),
    including visiting nurse Dental care                  Yes
    1 No            Yes                               62
    84c Prescription medication Yes                               2 No
    No                                62             84c Over-the-
    counter             No                           0 No
    No                                48             84c medication
    Counseling or mental         Yes                          8 Yes
    Yes                               43             84c health
    services, including social work Health insurance             No
    0 No            No                                14
    84c Physical therapy             Yes                          2
    Yes           Yes                               62             84d
    Occupational therapy         Yes                          2 Yes
    Yes                               62             84d Audiology
    Yes                          1 Yes           Yes
    57               e Recreational therapy         Yes
    0 Yes           No                                14
    89f Speech therapy               Yes                          1
    Yes           Yes                               62             84d
    Respiratory therapy          Yes                          0 No
    No                                33             84d Child care
    Respite care                 No                          24 No
    Yes                               29            100 Specialized
    day care         No                           0 Yes           No
    10               e Personal attendant,          Yes
    20 Yes           No                                 5
    g home health aide, or special help and supervision Services from
    a center No                                 0 No            g
    0               g for independent living Transportation
    Transportation               Yes                          5 Yes
    Yes                               52               e Emergency
    Yes                          0 No            No
    33               e transportation (continued) Page 53
    GAO/HEHS-99-99 Supplemental Security Income Appendix II
    Disability-Related Services Covered by Selected Programs Percent
    of Percent of           state state title        family Medicaid
    V       support Number of Special                   Early
    programs        programs Service                      EPSDT
    waivers Educationa                Interventiona
    (n=21)          (n=44) Purchase a van or car        No
    0 No                      No                                 0
    e to transport a child with special health care needs Modify a van
    or car to       No                             1 No
    No                                19             89h transport a
    child with special health care needs Education Educational
    services         No                             0 Yes
    Yes                               14               g related to
    special health care needs Reader or interpreter        No
    0 Yes                     Yes                               33
    g School-to-work               No                             0
    Yes                     g                                 10
    g transition Home Extra telephone              No
    0 No                      No                                19
    61i charges Extra electric or other      No
    0 No                      No                                14
    61i utility charges Home modifications           No
    16 No                     No                                24
    89h Equipment and supplies Assistive technologies       Yesj
    0 Yes                     Yes                               52
    91k Home or durable              Yesj                           15
    No                     No                                67
    91k medical equipment Special diet or formula Noj
    9 No                      Nol                               76
    61i Special or additional        Noj                            0
    No                      Yes                               24
    61i clothing Diapers beyond the           Noj
    0 No                      g                                 48
    61i usual age Implants                     Yesj
    0 No                      Yesm                              52
    e Medical supplies             Yesj                           0 No
    No                                57             84c (continued)
    Page 54                                        GAO/HEHS-99-99
    Supplemental Security Income Appendix II Disability-Related
    Services Covered by Selected Programs Percent of Percent of
    state state title         family Medicaid
    V       support Number of Special                         Early
    programs        programs Service                  EPSDT
    waivers Educationa                      Interventiona
    (n=21)          (n=44) Recreation Special recreation or    No
    0 Yes                           g
    10                89f physical education Coordination of care
    Coordination of services Yes                            21 Yes
    Yes                                    81                73
    aServices meet (yes) or do not meet (no) the minimum requirements
    contained in the Individuals With Disabilities Education Act and
    accompanying federal regulations. According to Department of
    Education officials, however, any service can be provided if
    judged to be necessary and included in the Individualized
    Education Program (for Special Education) or Individualized Family
    Service Plan (for Early Intervention). bDoctor visits are covered
    only for diagnostic or evaluation purposes. cData were included
    under the medical expenses and health insurance category on the
    Human Services Research Institute (HSRI) survey. dData were
    included under the specialized therapies category on the HSRI
    survey. eData were unavailable from the HSRI survey. fData were
    included under the recreation category on the HSRI survey. gNot
    applicable. hData were included under the home and vehicle
    modification category on the HSRI survey. iData were included
    under the household expenses category on the HSRI survey. jWhile
    federal regulations at 42 CFR 440.70(b)(3) provide that coverage
    of "medical supplies, equipment, and appliances suitable for use
    in the home" be included as part of the Medicaid home health
    benefit, no federal Medicaid rule or regulation defines or lists
    what specific supplies may or may not be provided. A June 16,
    1997, memorandum from the Medicaid Director of the Office of
    Medical Services states: "states have the flexibility to adopt a
    reasonable definition of 'medical supplies, equipment and
    appliances.' Applying this standard, a state could reasonably
    define this term to exclude specific items that are not primarily
    and customarily used to serve a medical purpose, and that are
    customarily used for other purposes." We scored the seven
    equipment and supply items on the basis of Health Care Financing
    Administration (HCFA) officials' views on what is or is not
    generally covered. kData were included under the adaptive
    equipment category on the HSRI survey. lSpecial diets or formulas
    are not covered, but devices such as adaptive straws, drinking
    glasses, and specialized utensils are considered to be assistive
    technology devices and are therefore covered. mMedical implants
    are covered, but the surgery to implant a device is not covered.
    Page 55                                              GAO/HEHS-99-
    99 Supplemental Security Income Appendix II Disability-Related
    Services Covered by Selected Programs Sources: Data on Medicaid
    waivers are from our analysis of American Public Human Services
    Association information published in 1998. (HCFA contracts with
    the association to collect data on Medicaid waivers.) Data are
    based on the 36 waivers under the section 1915(c) Home and
    Community-Based Waiver Program targeted exclusively to children
    with disabilities. Percentages for state title V programs are from
    our analysis of findings from a 1997 survey of state title V
    programs conducted by the University of Florida's Institute for
    Child Health Policy. We analyzed the survey's findings on the
    scope of services of 21 state title V programs. While not
    representative, these states are located in diverse geographic
    areas of the country and are the state of residence for 59 percent
    of the population of children on SSI. See Institute for Child
    Health Policy, University of Florida, Directory of State Title V
    CSHCN Programs' Eligibility Criteria and Scope of Services
    (Gainesville, Fla.: May 1997). Percentages for state family
    support programs are from John Agosta and Kerri Melda, Results of
    a National Survey of Family Support Programs for People With
    Disabilities and Their Families (Salem, Ore.: HSRI, 1995), p. 21.
    They represent 58 programs serving children (as well as adults in
    some cases) with developmental disabilities in 44 states. HSRI
    asked respondents whether the programs offered services in eight
    broad categories: service coordination and information and
    referral, medical expenses and health insurance, therapies,
    respite, recreation, home and vehicle modifications, adaptive
    equipment, and household expenses. According to HSRI, the
    respondents used their own discretion in determining how to place
    services in these categories. Page 56
    GAO/HEHS-99-99 Supplemental Security Income Appendix III GAO
    Contacts and Staff Acknowledgments GAO Contacts       Carol Dawn
    Petersen (202) 512-7066 Barbara Bordelon (202) 512-4427 Staff
    The following individuals also made important contributions to
    this report: Acknowledgments    Cynthia Bascetta, Brett
    Fallavollita, Gretta Goodwin, Ellen Habenicht, Susan Higgins,
    Elsie Picyk, and James Wright. Page 57
    GAO/HEHS-99-99 Supplemental Security Income Appendix III GAO
    Contacts and Staff Acknowledgments Page 58
    GAO/HEHS-99-99 Supplemental Security Income Appendix III GAO
    Contacts and Staff Acknowledgments Page 59
    GAO/HEHS-99-99 Supplemental Security Income Related GAO Products
    Supplemental Security Income: SSA Needs a Uniform Standard for
    Assessing Childhood Disability (GAO/HEHS-98-123, May 6, 1998).
    Medicaid: Elevated Blood Lead Levels in Children (GAO/HEHS-98-78,
    Feb. 20, 1998). Supplemental Security Income: Review of SSA
    Regulations Governing Children's Eligibility for the Program
    (GAO/HEHS-97-220R, Sept. 16, 1997). Medicaid Managed Care:
    Challenge of Holding Plans Accountable Requires Greater State
    Effort (GAO/HEHS-97-86, May 16, 1997). School Finance: State
    Efforts to Reduce Funding Gaps Between Poor and Wealthy Districts
    (GAO/HEHS-97-31, Feb. 5, 1997). People With Disabilities: Federal
    Programs Could Work Together More Efficiently to Promote
    Employment (GAO/HEHS-96-126, Sept. 3, 1996). Medicaid Managed
    Care: Serving the Disabled Challenges State Programs (GAO/HEHS-96-
    136, July 31, 1996). Medicaid: Waiver Program for Developmentally
    Disabled Is Promising but Poses Some Risks (GAO/HEHS-96-120, July
    22, 1996). Children Receiving SSI by State (GAO/HEHS-96-144R, May
    15, 1996). SSA Initiatives to Identify Coaching (GAO/HEHS-96-96R,
    Mar. 5, 1996). Social Security: New Functional Assessments for
    Children Raise Eligibility Questions (GAO/HEHS-95-66, Mar. 10,
    1995). Social Security: Rapid Rise in Children on SSI Disability
    Rolls Follows New Regulations (GAO/HEHS-94-225, Sept. 9, 1994).
    Medicaid: HealthPass: An Evaluation of a Managed Care Program for
    Certain Philadelphia Recipients (GAO/HRD-93-67, May 7, 1993).
    Federally Funded Health Services: Information on Seven Programs
    Serving Low-Income Women and Children (GAO/HRD-92-73FS, May 28,
    1992). (207000)      Page 60
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