Client News

Daytona Beach News Journal: Disabled funding cuts worry parents, officials

Monday, March 11, 2013

Time seemed to stop for Chad Russell when his best friend, Rachel Nelson, wheeled into the room where he was assembling part of an electrical connector.

The two, who have cerebral palsy, were full of smiles as they hugged.

While Russell, 25, communicates through sign language and some sounds, his friends with developmental disabilities are still able to interact with him with high fives, laughs and tales of their day. He often responds with a thumbs-up sign. Staff members at UCP/WORC in Daytona Beach, the agency that serves people with disabilities, have learned to talk to the “social butterfly” through sign language.

But the agency and Chad’s mom, Tina Russell of Port Orange, worry about how he will continue to go to the adult day training program or how she will work and pay her bills because of a possible 30 percent cut in his funding from the state.

Chad’s proposed decrease, which is still being reviewed by the state, is based on a Medicaid waiver program called iBudget Florida, which will reduce spending for some clients and hopefully provide services to more people on a wait list. The program was approved by the Legislature in 2010 and continues to be implemented in phases statewide starting last April.

“It is just going to be devastating to Chad,” Russell said. “He socializes and has friends here (UCP/WORC) and for Chad that’s huge.”

About 40 percent of the 30,000 program recipients statewide could see various cuts to their allocations, determined by a formula and case-by-case reviews, according to the state. The iBudget program is scheduled to be fully implemented by July, but is also facing legal challenges.

Officials with the Agency for Persons with Disabilities say the new iBudget gives clients better access to a wide range of services and allows clients to choose what services they want, instead of being grouped into certain categories as they were previously. The new program and other changes have helped the agency, which has seen deficits of more than $100 million, get its spending under control, officials said.

The end result, according to the agency, will be services to some people who have been on a waiting list for years, instead of using money to resolve deficits.

Because of the agency’s progress, Gov. Rick Scott is proposing $36 million in new funding to take about 750 or more people off the Medicaid waiver wait list, which consists of 22,200 people. No new funding has been provided toward the wait list in eight years, although some people were taken off if they were in a crisis. The Legislature this session will consider Scott’s proposal.

Scott is also asking for an additional $2.5 million to assist about 1,000 people on the waiver waiting list with job internships and job coaches. He also wants a one-time, $40 million appropriation — including $17 million from the state and $23 million in federal funds — to pay off the Medicaid waiver deficit from prior years.

“We had to get ourselves fiscally sound to be able to get new money to take people off the wait list,” said Barbara Palmer, director of the Agency for Persons with Disabilities.

“With the economy the way it is and 22,000 people on the wait list, it was time to take a look at the difference between what you really want and need to be safe and healthy as opposed to what are the wants that you have,” Palmer added.


For at least two retired Palm Coast families, funding for the wait list could mean one day their sons will get services, including residential, so they can stop worrying about what may happen to their children when they die. Their children may also receive respite care to help their families and other needed services.

“As we get older, that is the principal thing we will be looking at. What will happen to my son when I’m no longer around? That’s the reality of it,” said Fred Azua, 70, whose 38-year-old son, Alex, cannot talk and is at the developmental level of a 2- to 3-year-old.

His son has been on the wait list for about five years. He and another father in Palm Coast, Philip Pearson, 67, serve on a state council helping to develop procedures and criteria the state will use to move people off the wait list. Individuals in crisis and developmentally disabled children in child welfare rank at the top.

Pearson, the vice chair of the area Family Care Council and a past chairman of the statewide Family Care Council that advocates for people with developmental disabilities, has been pushing for eight years to move people off the wait list. His son, Bill, 39, has been on the wait list for eight years.

While he said there won’t be enough money this year to get his son off the wait list because of where he falls based on need, he’s pleased people with developmental disabilities are on the state and governor’s radar.

“We are confident the (Legislature) will see the need,” Pearson said, “and that it’s the right thing to do to provide help to those who can’t help themselves.”


For some currently receiving services and facing cuts, their families worry about their children’s future. For Russell, a single mom, the proposed cut in funding to her son is just one of many he’s received over the past several years amounting to thousands of dollars and fewer services.

Chad, who is in a wheelchair and has medical issues beyond his cerebral palsy, needs help with everything from bathing and dressing to various medical treatments. Russell, who works in condo sales, said she’s already paying for the majority of his day training program as well as medical supplies, diapers and other needs after previous funding cuts.

He also no longer receives speech, physical and occupational therapy and had to cut back on his caregiver’s pay.

More cuts could mean Chad will not be able to go to the adult day training program, his mom said, or be forced to go into a group or nursing home where he couldn’t communicate his needs, putting him at risk. If he doesn’t have a personal care assistant at home while his mom is working, she could lose her job, she said.

He receives about $63,000 a year for various services, but the proposed reduction would have him receiving $43,000.

“If that money was cut, it would be absolutely detrimental,” said Amy Greathouse, who serves 135 clients through her support coordinator business in Port Orange, including Chad.

Not only does Chad have independence in the day program, she said, but he works part time for the Daytona Cubs passing out programs.

“You don’t want to take that away from him — that’s his spirit,” she said about interacting with others in the community.

She’s hopeful, though, that the state will work to reduce the size of the cut.

State officials said individuals identified to receive a decrease in funding go through a review process. The state has discussions with the client and support coordinator, which is currently happening in Chad’s case, “to ensure that health and safety needs could be met within that funding amount,” state officials said. There also is a process for families to appeal before any funding cuts are finalized.

“No formula in the world” can evaluate 30,000 people and always be correct, Palmer said, and that’s why there is a process for the state to work with families. Only about 2,000 of the close to 20,000 people who have transitioned to the iBudget have appealed, Palmer said, which shows it has been “very successful.”

“I will be the last person who would want to hurt somebody or jeopardize their health and safety,” Palmer said. “We are trying to do the best we can with what we’ve got.”

Still, groups and area agencies are concerned. A federal lawsuit has been filed by 10 plaintiffs which also seeks a class-action for others with developmental disabilities who faced reductions. Attorneys for the plaintiffs, which includes a 32-year-old Port Orange man, say people are not receiving adequate notice or a reason why funding is being decreased.

“It leads to a lot of fear and confusion,” said Kirsten Clanton, attorney with Southern Legal Counsel, a Gainesville nonprofit public interest law firm handling the case.

The state disagrees in its court response, saying proper notices are being given and the iBudget and process received federal approval.


Some local agencies serving the disabled are also seeing fewer clients because of cuts to individuals. Craig Byrd, president/CEO of UCP/WORC, which has locations in Daytona Beach and Bunnell, said the agency two years ago served 900 people a year, but now the number is about 600.

Some clients who used to come five days a week are only coming three days or not at all.

“If they are sitting at home watching TV or laying in bed, they are not in here where they could be working on one of our contracts and earning a paycheck,” Byrd said. “To me, it doesn’t speak to promoting that independence.”

His adult day training program in Daytona Beach and Bunnell involves people doing contract work ranging from making survey stakes for the state to packaging emblems for NASCAR racing teams. In the past two years, UCP/WORC has received a decrease of $384,000 in state, local and federal funding for its various programs.

The Arc of Volusia has also seen funding reductions and is concerned about impacts on clients. A small number of clients so far has reduced the amount of days they attend the agency’s life skills program.

The 65 agencies that are part of the Florida Association of Rehabilitation Services, which includes UCP/WORC, report a 10 percent reduction in services because people have less funding, according to Suzanne Sewell, president and CEO of the association. She understands the state predicament and has “always advocated that the program is under-funded and needs more resources to meet the needs.”

But, Sewell said, “we have to make sure we are not cutting too drastically” and that people are “getting the services they need to meet their daily needs.”

Wait list numbers

The state Agency for People with Disabilities reports 22,200 people statewide on a Medicaid waiver wait list for services, including 44 percent under the age of 21 and 11 percent with intensive needs. Gov. Rick Scott is proposing $36 million in new funding to take about 750 or more people off the list. The new funding is part of the $1.1 billion

budget being proposed for the agency in the coming year.

Other facts about the wait list:

Wait times vary from less than 1 year to more than 15 years.

The median wait time is five years. About 11,200 have waited

between two and six years.

24 have been waiting for more than 15 years.

8,098 are between the ages of 21 and 34; 1,169 are between 50 and 64; and 230 over the age of 65.

SOURCE: Agency for Persons with Disabilities

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