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Grassley Scores Major Victory for Families with Disabled Children

Location: Washington, DC


Sen. Chuck Grassley said the five-year budget plan making its way through Congress includes the bipartisan proposal he's championed with Sen. Ted Kennedy to help children with disabilities and their families.

This Family Opportunity Act allows states to create options for families with disabled children to buy into Medicaid while continuing to work. Parents would pay for Medicaid coverage on a sliding scale. Medicaid is critical to the well-being of children with multiple medical needs because it covers many services that these children need, including physical therapy and medical equipment. Private health plans often are much more limited in what they cover.

"Parents want to provide the best they can for their children, and when a child needs something, parents will do whatever they have to in order to take care of their kids. It doesn't make any sense for public policy to force parents of disabled children have to drop out of the workforce or keep themselves in a low-paying job just to remain eligible for Medicaid," Grassley said. "Congress should give states the flexibility to give families options without the federal government getting in the way."

Grassley said the Family Opportunity Act is pro-work because it lets parents work without losing their children's health coverage, pro-family because it encourages parents to work and build a better life for their children, and pro-taxpayer because it means more parents continue to earn money, pay taxes and pay their own way for Medicaid coverage for their children.

The Family Opportunity Act has attracted widespread bipartisan support in each Congress since Grassley and Kennedy first authored it in 1999, with co-sponsors numbering 70 or more. A House version of the measure sponsored by Reps. Pete Sessions and Henry Waxman also enjoyed strong support with more than 235 cosponsors. The Senate Committee on Finance first approved the measure in 2002, on a voice vote, without controversy. The full Senate first passed the Family Opportunity Act in May 2004.

Grassley today serves as Chairman of the Senate Committee on Finance, and was a key negotiator on the budget proposal adopted earlier today by the House of Representatives and which could come up for a vote in the Senate as early as today.

Medicaid is a medical assistance program jointly financed by the federal government and state governments for eligible low-income individuals. It also covers health care expenses for the needy elderly, the blind and the disabled receiving cash assistance under the Supplemental Security Income Program.

A summary of the major provisions of the Family Opportunity Act, as included in the Deficit Reduction Act of 2005, follows.


The National Health Interview Survey (NHIS) and current Census data shows that eight percent of children in this country have significant disabilities, many of whom do not have access to critical health care services they need. In order for these families to get needed health services for their children, many are forced to stay impoverished, become impoverished, put their children in out of home placements, or simply give up custody of their children so that their child can maintain eligibility for health coverage through Medicaid. Many employer health plans and a number of CHIP/SCHIP programs do not cover essential services that these children need to maintain and prevent deterioration of their health status. Medicaid can provide these comprehensive services.

In a recent survey of 20 states, families with special needs children report they are turning down jobs, turning down raises, turning down overtime, and are unable to save money for the future of their children and family so that they can stay in the income bracket that qualifies their child for SSI and/or Medicaid.

Currently, less than four percent of the 850,000 children receiving Social Security benefits leave the Social Security rolls due to increased family income. However, many would do so if access to needed health services was available. More than half the States are reporting increasing rates of families giving up custody of their children in order to secure needed health care services and supports.

The Family Opportunity Act of 2005 is intended to address the two greatest barriers preventing families from staying together and staying employed: (1) lack of access to appropriate services and (2) lack of access to the advocacy and assistance services they need to help cut the red tape to meeting their children's health care needs.


Access to Health Care Coverage

Expanding Medicaid Coverage Options. A new optional eligibility category will allow states to expand Medicaid coverage to children with disabilities up to age 18, who would be eligible for SSI disability benefits but for their income or resources. This option builds on previous reforms including the provision enacted in the Balanced Budget Act of 1997 and the Ticket to Work and Work Incentives Improvement Act of 1999.

These provisions permit states to offer a Medicaid buy-in for disabled children who would be eligible for SSI disability benefits but for their income, who are in families earning up to 300 percent of poverty.

In order for a family to participate in the Medicaid buy-in for their disabled child or children, a state must require a parent to take employer-offered insurance within the following guidelines: (1) the employer offers family coverage under a group health plan and (2) the employer contributes at least 50 percent of the total cost of the annual premium for the coverage.

If such coverage is attained by the family, the state is required to reduce the premium charged for the buy-in, in an amount that reasonably reflects the parent's premium contribution for private coverage for the child with a disability.

Participating states may charge premiums up to the full cost of the premium as long as that premium does not exceed 5 percent of family incomes up to 200 percent of the poverty level and 7½ percent of family incomes between 200 and 300 percent of the poverty.

The state may waive payment of a premium in any case where the state determines that requiring a payment would create an undue hardship.

Alternatives to Psychiatric Residential Treatment Facilities for Children

The bill provides funds for demonstration projects in 10 States to examine the effectiveness of home- and community-based alternatives to psychiatric residential treatment facilities for Medicaid-enrolled children.

Restoration of Medicaid Eligibility

Restores Medicaid eligibility only for children meeting the presumptive eligibility requirements under SSI without having to wait until the first day of the month following the establishment of eligibility.

Access to Health Information and Resources

Establishing Family to Family Health Information Centers. The bill provides funds for establishing health information centers to assist and support families of children with disabilities and special health care needs. These centers, staffed by both parents of children with special needs and professionals, would provide technical assistance and accurate information to other families on various health care programs and services available and appropriate for children with special needs, including identifying successful health delivery models. In addition, these centers would act as a resource to healthcare insurers, providers, and purchasers in developing ombudsman models for collaboration between families of children with special needs and health care professionals.

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