"We have a very simple idea," Grassley said. "It's keeping families together. It's getting special needs children the health care they need. It's easing the hardship of thousands of parents.Nationwide, families are counting on Congress to pass this bill."
Grassley and Sen. Edward Kennedy (D-Mass.) introduced the Family Opportunity Act of 2000 (S. 2274) in March. Grassley, a senior member of the Budget Committee, secured funding for the bill in the budget resolution this year. The measure would receive $25 million the first year and $150 million over five years.
Grassley presided over a Budget Committee hearing to examine the impact of the bill on families with special needs children. Witnesses included:
- A staff sergeant with the U.S. Air Force in Montgomery, Ala., who has a 9-year-old daughter with a rare chromosomal disorder. He fears accepting a promotion that will cost his daughter her Medicaid coverage. He and his wife, who also have a son, cannot afford the expense of diapers, medicine and physical therapy without Medicaid.
- The mother of a 17-year-old girl with bi-polar disorder who, along with her husband, had to relinquish custody of her daughter to the state of Oregon so the girl could receive medical treatment.
- and Dr. David Alexander, the medical director of Raymond Blank Children's Hospital in Des Moines, who gave examples of chronic health care needs, including a 3-year-old child who lost one leg and injured another in a lawnmower accident. The boy will need intensive physical and occupational therapy for his remaining leg as well as a series of prostheses to replace the amputated leg as he grows. The child has private health insurance, but there are limits on hospitalization, physical therapy and medical equipment including leg prostheses.
The Family Opportunity Act of 2000 would help in each of this situations by allowing the families to pay for Medicaid coverage for their children, Grassley said.
Under current law, families with children who have special health care needs must strictly limit their income to qualify their children for both Medicaid and federal disability benefits. This means parents often refuse jobs, pay raises and overtime just to preserve access to Medicaid for their child with special health care needs.
In the worst cases, parents give up custody of their child with special health care needs or put their child in an out-of-home placement just to keep their child's access to Medicaid-covered services.
Grassley said Medicaid is critical to the well-being of children with multiple medical needs. It covers a lot of services that these children need, such as physical therapy and medical equipment. Private health plans often are much more limited in what they cover. Many parents can't afford needed services or multiple co-payments out-of-pocket.
The Family Opportunity Act of 2000 would create a state option to allow working parents who have a child with special health needs to keep working and to still have access to Medicaid for their child. Parents would pay for Medicaid coverage on a sliding scale. No one would have to become impoverished or stay impoverished to secure Medicaid for a child.
The bill also establishes family-to-family health information centers. These centers would be staffed by actual parents of children with special needs as well as professionals. They would provide information to families trying to arrange health services for their children.
The Family Opportunity Act of 2000 is modeled after last year's successful Work Incentives Improvement Act sponsored by Kennedy, with Grassley as a co-sponsor. Under that law, adults with disabilities can return to work and not risk losing their health care coverage.
Grassley said the bill's large number of Senate co-sponsors, combined with an equal amount of support from both Republicans and Democrats, and the introduction today of a House bill, bode well for congressional passage this year.
"There's a lot of legislation pending, but I hope this bill will rise to the top of the list," Grassley said. "One of our witnesses today is the father of a special needs child. He said this bill will make a big difference in his family's life. It will give them some peace of mind. That's strong encouragement to get this bill signed into law."