Budget cuts fall on backs of the disabled

By KAREN M. CLAY, Special to the Times
Published October 3, 2007

The families of those caring for a loved one with a developmental disability don't ask for much. In fact, they give of themselves in a way few can understand. Yet theirs is not a story of burden; it is a story of love. It is a story of commitment and principle and standing up for those who cannot stand up for themselves.

During the regular legislative session ending in May, lawmakers passed a bill that asked for $126-million dollars in cost savings on the backs of individuals with developmental disabilities from the Agency for Persons with Disabilities' budget, one of the deepest service cuts ever to a social services program in Florida.

The results have been immediate and devastating.

Legislators approved service reductions and eliminations to the Home and Community Based Waiver Program that have severely impacted the quality of life and opportunities for individuals with developmental disabilities and their families. These cuts aren't just taking away services; they also are taking away any hope recipients had for living independently and participating in inclusive settings that allow individuals with developmental disabilities to live naturally in their communities.

Now, as the Legislature meets in a special session starting today to cut more than $1-billion from the state budget, even more service cuts are being threatened that could destroy lives and sever loving relationships between caring family members and those with disabilities that include severe mental retardation, cerebral palsy and autism. Many parents and other caregivers will be cut off from the nurturing relationships they have fostered over many years because they will not be able to afford to provide the level of care required.

As dedicated as these families are, they simply cannot bear the financial burden of care alone. They depend on the Medicaid waiver for services that are essential for the caring of persons with developmental disabilities, including personal care assistance, supported living coaching and support coordination.

These services are key for families such as Tallahassee resident Melinda Warren and her 29-year-old brother, Michael. Michael has spina bifida and cerebral palsy, is blind and requires a feeding tube. Earlier this year, he developed aspiration pneumonia, became bed-ridden and dropped to 58 pounds. He was not expected to live.

As a result of his illness, however, his personal care assistance was increased to 18 hours a day, allowing him to fight back to his current weight of 101 pounds. His prognosis, however, is less promising; on Monday, his Personal Care Attendant help was cut to six hours a day. Melinda Warren worries about her brother's health and safety and her ability to keep her job while caring for her brother.

In Hillsborough County, Carol Novak, mother of Jonathan Hughes, is frantically trying to cobble together a plan that will keep Hughes in his own home despite the agency already scaling back the care he receives from his trained "life support coach," Ernest Bennerman.

"I never wanted Jonathan to be institutionalized," said Novak, who relies on Bennerman to do everything from shaving her son's face to balancing his checkbook. "For two years, I thought we had it made. Then one day I woke up and found out they had pulled the rug out from under us."

These service cuts are not only stealing independence and forcing the exclusion of people who have much to offer society given the proper help, they are wasting our money. The cost of providing home care for a person with developmental disabilities averages $20,000 a year, for a group home it is $55,000 a year and for an institution, the cost is $130,000 per year.

The Florida Developmental Disabilities Council Inc. strongly urges the Legislature to restore services provided through the Home and Community Based Waiver Program and to avoid any further cuts. Even though stories of forced institutionalization and broken families are already surfacing, it is way too soon to measure the full impact of the service reductions and eliminations. The long-term impact of these cuts to so many individuals with developmental disabilities and their families is yet to be realized.

We should not become a society that abandons those who are vulnerable or one that pulls the rug out from the unsuspecting because they cannot defend themselves. We are better than that.

It's time to make it right. It's time to protect those who are counting on us to give them a chance.

Karen Clay of Tampa chairs the Public Policy and Advocacy Committee for the Florida Developmental Disabilities Council Inc. She is also the mother of two children, the oldest of which has a rare neuromuscular disorder.

[Last modified October 2, 2007, 22:11:33]