Disabled warn state to fund services or risk federal aid loss

Hundreds of people with developmental disabilities thronged the Capitol on Thursday to celebrate 30 years of progress toward self-determination and to push for adequate funding.

Medicaid Waiver services allow people with such disabilities to live and be integrated into the community rather than be confined to institutions as in the past. But rates to provide those services have not budged in 10 years while costs have escalated.

Unless the rates are updated, federal funding could be jeopardized, according to Mary Brogan, Developmental Disabilities Division chief for the state Health Department.

“If Hawaii does not pay the rates that are based on actual costs of delivering services, the Centers for Medicare and Medicaid could terminate the waiver,” Brogan said. “This would mean the loss of more than $55 million in federal funds to the state every year,” she said, and force the state to foot the whole bill.

Bathey Fong, a 31-year-old with a disability, told legislators and others gathered at the Capitol that she relishes the independence and choices in life she has gained through individualized services.

“I had dreams for what a good life would look like for me, but it was hard to get there,” she said. “People made choices for me. People told me, you should do this, you can’t do that. But they did not let me try.”

With help through waiver services, Fong learned how much she can do for herself and has taken leadership roles. She is a member of the State Council on Developmental Disabilities and a past president of the Hawaii Self-Advocacy Advisory Council. She trains others with disabilities on how to stay safe and is taking classes to learn office work in hopes of landing a full-time job.

Fong joined more than 400 people with disabilities and their advocates from Oahu and another 50 from the neighbor islands at the Capitol. They filled the Senate gallery with a rare standing-room-only crowd and visited legislators at their offices.

Susan Rocco, coordinator of the Special Parent Information Network, told the story of her son, Jason, and how his dedicated caregiver of 10 years has helped him become a contributor to the community, although Jason doesn’t talk and has significant seizures and a heart condition.

“We were able to put together a tiny little business that we call Jason’s Candles LLC,” she said. “Jason makes candles and soaps that are really fantastic at marvelous prices. We pay taxes. Jason marks an ‘X,’ and we send it in to the IRS. These were all dreams I had, but they would not have been realized without the support from the Medicaid Waiver.”

Developmental disabilities occur before adulthood, are chronic and affect day-to-day functioning. They include cognitive disabilities, autism and cerebral palsy.

In 1987 Hawaii passed a law recognizing the human rights of people with intellectual and developmental disabilities — opening the door to providing services in the community that allowed for self-determination. The state closed its Waimano Training School and Hospital in 1999.

Now 99 percent of people served by the Developmental Disabilities Division live in residences with six or fewer residents, most in homes with just one to three people. Hawaii ranks in the top quarter of states in supporting the developmentally disabled in family homes, according to the Health Department.

Last year 2,789 people in Hawaii received support through the Medicaid Waiver. Services include adult day programs, personal assistance, chore help, skilled nursing care, assistive technology, training and employment services.

The average cost of home- and community-based services is roughly $40,200 per person per year, while institutional care would run about $113,000, according to the Health Department. The federal government covers more than half of the tab for those community-based services.

The proposed rate change for providers, to be phased in over three years, would cost an additional $2.8 million in state funds in the first year. It was included in the executive budget and has made it into the House version of the budget.