Family Opportunity Act summary, 2000

PETE SESSIONS COMMITTEE ON RULES COMMITTEE ON BANKING RESULTS CAUCUS ■4W Congress of tfte ®mteb States JflouSe of 3XepreSentatibe£! Family Opportunity Act of 2000 (HR 4825/S 2274) DALLAS, TEXAS 75238-4844 TELEPHONE: 1.800.987.6554 ^ 214.349.9998 □ 100 E. CORSICANA STREET ATHENS. TEXAS 75751-2502 TELEPHONE: 903.675.8288 The Family Opportunity Act helps families with disabled children to stay together and stay employed, without losing their access to appropriate health care for special needs. This bill is modeled after the “Ticket to Work” or Work Incentives Act (P.L. 106-170), which became law earlier in the 106th Congress. I. Issue Parents of disabled children lose Medicaid eligibility, which is critical to the well-being of children with multiple medical needs, if they have income and resources above the poverty level. In order to access needed health services for their child, many families are forced to stay impoverished, become impoverished, put their children in out of home placements or simply give up custody of their child. II. Scope of Problem National data shows that eight percent of children in this country have significant disabilities, many of whom do not have access to critical health services they need to live at home with their families and in their communities. In a recent survey of 20 states, 64 percent of families with disabled children report that they are turning down jobs, turning down overtime, and are unable to earn enough money to adequately provide for their family- just so their child can access Medicaid. III. Legislative Solution The Family Opportunity Act creates a Medicaid “buy in” for disabled children whose family income or resources are above poverty level. Cost sharing up to the full premium cost may be required within certain guidelines that protect lower income families. Many employer health plans and a number of СШР programs do not cover essential services that these children need to maintain or prevent deterioration of their health status. Medicaid can provide these comprehensive services. The legislation also establishes a time-limited demonstration program that allows states to extend Medicaid coverage to children who have a disability that, without proper health care, would become severe enough to qualify them for SSI. For example, children bom with PKU (phenylketonuria) typically can expect normal development and life span if they are treated with a strict diet within the first few weeks after birth. Sadly, PKU babies who do not receive immediate treatment suffer from mental retardation and other neurological problems. IV. Family-to-Family Health Information Centers This bill includes provisions for establishing health information centers to assist and support families of children with disabilities and special health care needs. These centers, staffed by parents of disabled children and professionals, would provide technical assistance and accurate information to other families on various health care programs and services appropriate for children with special needs. V. Legislative Landscape The Family Opportunity Act is the companion bill to S. 2274, introduced by Senators Grassley (R-IA) and Kennedy (D-MA). The bill is currently cosponsored by 60 senators and enjoys bipartisan support in both the House and Senate. Though we are awaiting a formal CBO estimate, the final cost will take into account expected savings of at least $250 million per year in SSI payments, since children with disabilities could leave SSI rolls once their families are able to purchase Medicaid. Updated July 18, 2000