Florida family network advocates for disabled people there

From the Pensacola News-Journal:

There are more than 18,000 people in Florida waiting to receive services from the state’s Agency for Persons with Disabilities.

This year, they found an advocate in Mike Coonan.

“In January, I started Left Behind in Florida, a network of families with developmentally disabled children on the state’s wait list,” he said. “We want that list eliminated.”

When Coonan, 64, and his family moved to Pensacola from Michigan in 2004, they were surprised to learn the state had a list, and more surprised to find out it could be years before families might receive services.

“We didn’t know we’d be left to fend for ourselves,” he said.

Mike Coonan’s son, Matt, 26, is on the list with about 1,000 people in the four-county area. He has epilepsy and autism, but is high-functioning. He lives at home but works at a local supermarket with the help of a job coach and mentoring by his parents, Mike and Prudence Coonan.

However, Matt Coonan’s autism causes him to have problems with judgment, communication, social skills and decision-making, his father said.

“While we are alive, Matt has the life only few people dream of,” Mike Coonan said. “After we are dead, Matt’s opportunities and quality of life are grim. He will need supported, community living.”

The Coonans said they are not seeking help for their son while they are alive. They enjoy coaching and caring for him.

“We are not fighting for this for our son,” Mike Coonan said. “We can handle his needs. We are fighting for families who cannot.”

Groups like Left Behind in Florida need a strong voice, said Karen Clay of Tampa, former Public Policy and Advocacy Committee chairwoman for the Florida Developmental Disabilities Council.

“People need to understand the cost of keeping a person at home is far less than it is for a more-restrictive environment, such as an institution,” she said. “Other states have thought outside the box on this, but our state has not.”

The bottom line is making a heart connection, said Clay, whose son, Mike, 29, is developmentally disabled. He is not on the waiting list, but Clay understands the parents’ frustration.

“People, not just legislators, need to understand they are judged by how they treat the least of us,” she said. “These are not worthless people.”

The Agency for Persons with Disabilities serves more than 30,000. Its Web site said those on the wait list will be enrolled as the money becomes available.

Meanwhile, parents like Michelle Gross of Milton wait. Her daughter, Christina, 29, has been on the list since 2004.

“Christina has minor cerebral palsy and developmental delays, but she had a job stuffing envelopes and mailing packages before we moved here from Missouri,” she said. “I can’t get that in Florida.”

With Left Behind in Florida, a nonprofit group, families on the wait list can connect and get information about services.

“Until Left Behind, I had no idea we had a Family Care Council or programs available for pay,” Gross said. “Without it, agencies and legislators wouldn’t have given us any thought. It has taught me how to be an advocate.”

Coonan said they are working to get:

-- Quarterly letters to wait-list families and meetings with agency staff.

-- A Web site on the agency’s efforts to end the list.

-- A statewide summit with state and local groups that assist persons with developmental disabilities.

-- A champion in the legislature.

-- “When our children graduate from high school, they graduate into oblivion,” Mike Coonan said. “There is nothing for them, not even a day program. We don’t want to be invisible any longer.”