SSI Children:

Multiple Factors Affect Families' Costs for Disability-Related Services

HEHS-99-99: Published: Jun 28, 1999. Publicly Released: Jun 28, 1999.

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Cynthia Maher Fagnoni
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Office of Public Affairs
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Pursuant to a legislative requirement, GAO provided information on the factors affecting families' costs for disability-related services, focusing on: (1) 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 and the factors that influence the level of such costs; and (2) factors affecting families' receipt of disability-related services from programs.

GAO noted that: (1) recent survey data show that families obtain from public programs many disability-related services for their SSI children; (2) 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; (3) 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; (4) about 87 percent of the Florida families surveyed in 1996 reported that they incurred disability-related costs; (5) 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; (6) such data, however, do not reflect whether a child's service needs have been met; (7) data on expenditures do not reflect services that families needed but did not purchase because they could not afford them; (8) 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; (9) a variety of factors may affect families' ability to obtain services through other programs; (10) SSI beneficiary status generally does not entitle a child to a program's services; (11) 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; (12) because of difficulties in identifying which children need services and what services they need, some children who need services may be overlooked; (13) 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; and (14) 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.

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