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More Financial Support for Home Care Is Urged

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Anaheim, Calif.--The parent of a severely handicapped child told members of a Congressional select committee here that it is an "amazing paradox" that federal and state governments will spend far more to institutionalize a handicapped child than to allow him to remain with his family.

That view was shared by many of those who testified before the House Select Committee on Children, Youth, and Families, which held a hearing late last month at the Council for Exceptional Children's annual convention. The witnesses agreed that what is needed for the care of handicapped children is not more funds, but better-directed funds.

The committee is holding a series of hearings around the country on the subject of families under stress. Ann Rosewater, deputy staff director for the select committee, said it will compile recommendations for use by the appropriate standing subcommittees. She said no bill is currently pending on the costs of care for handicapped children.

'Direct to Community'

"Research has convinced us that, as a general rule, families prefer residential and service options that are in the community and not in institutions," said Ann Turnbull, director of the bureau of child research at the University of Kansas and the mother of a mentally retarded son.

"It is overdue to change Medicaid funding so that it will go where most eligible people are, namely in the community, rather than where the fewest are, in institutions," she added. "This is supportive, rather than substitute family care."

Ms. Turnbull also noted that one-third of the states have adopted programs that offer cash subsidies or vouchers to families to purchase the help that they need--adaptive equipment, medical services, transportation, and special training.

"The key is that families decide how to spend the subsidy," she said.

'Truly Outrageous'

Beverly Bertaina, the mother of a 12-year-old who is severely disabled and retarded, told the five Congressmen present that "it is an amazing paradox that institutional care for Adam would cost $35,000 to $65,000 a year, but the federal and state governments are willing to spend only $2,000 to $3,000 to help us keep Adam at home."

"It is truly outrageous that if we place Adam outside our home, he will receive more services than we can get if we keep him at home," she said.

Ms. Bertaina cited such required expenses of home care as: a $12,000 van with ramps, with $3,000 more for an electric lift; a $150 walker; $50 a month for diapers; and a minimum of $6 to $9 an hour for a specially trained sitter.

'Need To Be Equalized'

Mary Short, the mother of a severely handicapped 5-year-old, told the subcommittee that "for those of us who, for whatever reason, do have our children placed, the system is beautifully efficient. The systems for in-home and out-of-home handicapped children need to be equalized. P.L. 94-142 gave that to us all for education, and the same can be done with supportive services."

John Butler, principal researcher for a Boston Children's Hospital study on children with special needs, said school and health departments share most of the costs for all related services under P.L. 94-142.

He noted that assistance to the families of children with disabilities "requires shared effort across the domains of welfare, social service, mental health, and health care."

"We are bumping up against the limit to which the schools alone can be expected to fulfill the promise of P.L. 94-142 in the absence of parallel efforts from other sectors, agencies and programs, both public and private," he added.

(Sally H. Christensen, director of budget services for the U.S. Education Department, told another Congressional subcommittee last week that the department is now in the process of conducting an evaluation of independent-living centers for adults.

She said the department allocated $22 million for the centers in the fiscal year 1985 and "is fully committed to the objective" of such centers.)

Early Intervention

The witnesses testifying in Anaheim also urged the Congress and the Administration to maintain and expand early-childhood and transitional programs for the handicapped.

Lisbeth J. Vincent, a professor in the department of behavioral studies at the University of Wisconsin, told the panel that since the passage of P.L. 94-142, nine states have passed legislation extending educational services to children under 5 years of age, but eight states have passed legislation making children younger than 5 ineligible for educational services.

"P.L. 94-142 made a major difference for children 5 to 18 years old," Ms. Vincent said. "It had limited impact on children from birth to 5 years old. We're putting families through five years of crisis."--at

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