"Medicaid works well for a lot of people," Grassley said. "The problem is some families fall through the cracks. Many parents of disabled children have to drop out of the workforce or keep themselves in low-paying jobs just to remain eligible for Medicaid. In effect, the government is forcing parents to choose between near-poverty and their children's health care. We need to fix that."
Grassley and Kennedy today re-introduced the bipartisan bill they first authored in 1999. Today's measure is identical to their previous bill. As in the past, the bill is attracting a large number of original co-sponsors, with 54 senators giving their support today.
The 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, the senators said. Private health plans often are much more limited in what they cover. And many parents can't afford needed services or multiple co-payments out-of-pocket.
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 it's pro-taxpayer because it means more parents continue to earn money, pay taxes and pay their own way for Medicaid coverage for their children.
Grassley said an Iowa family provided him with the inspiration for this legislative initiative. Melissa Arnold, originally from Red Oak, moved to the Baltimore area to obtain medical care for her son Adam, who was born with a short thigh bone. Melissa Arnold worked hard to obtain promotions and support her family but couldn't accept pay raises without jeopardizing Adam's Medicaid coverage. Adam's teen-age brother couldn't even work part-time for fear of pushing the family income over the Medicaid limit. The Arnold family is in the process of moving home to Iowa this year.
"Parents want to provide the best they can for their children," Grassley said. "Congress should give states the flexibility to give families options without the federal government getting in the way."
On Monday, Grassley received an award for seeking enactment of the Family Opportunity Act, among other policy initiatives. The Arc of the United States gave Grassley its John H. Chafee Leadership in Public Policy Award for 2003. Named for the late senator, the Chafee award honors policymakers who have worked to help those with mental retardation. The Arc of the United States describes itself as "the nation's largest and leading national organization working on behalf of the seven million children and adults with mental retardation and related developmental disabilities and their families."
"I'm honored to have been chosen to receive this award," Grassley said. "The Arc is an important organization. It fills a critical role in its fight to advance good public policy for those who have mental disabilities. I'm grateful for The Arc's work."
Last year, the Finance Committee passed the Family Opportunity Act on a voice vote, without controversy. The full Senate never considered the bill, although at the time the legislation had 74 Senate co-sponsors and more than 235 co-sponsors in the House (of a counterpart bill).
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.
Grassley is chairman of the Committee on Finance, which is responsible for Medicaid legislation. Kennedy is ranking member of the Committee on Health, Education, Labor and Pensions.
A bill summary of the Family Opportunity Act follows.
PROBLEM
The National Health Interview Survey (NHIS) and current census data shows that 8% 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 4% of the 850,000 children receiving Social Security benefits leave the Social Security rolls due to increased family income, however many would if access to needed health services was available. More than half the States in this country 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 2003 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.
THE FAMILY OPPORTUNITY ACT OF 2003
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 (BBA) and the Ticket to Work and Work Incentives Improvement Act of 1999. These provisions permitted 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 250% of poverty.
Option for States to Include Children Receiving Hospital Psychiatric Services in Home and Community -Based Waivers
Restoration of Medicaid 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.