Parents Fight For Services For Special-Needs Children

By Noreen Gillespie

Associated press

CANTON — Since 3-year-old Ryan Taylor was diagnosed with autism last year, his family’s living room has been doubling as a classroom where his parents are his teachers.

His face breaks into a huge grin when his mom, Nancy, helps guide his hands while singing “Head, Shoulders, Knees and Toes.” The classic childhood game is one of many that helps him learn communication skills.

Ryan didn’t always learn at home. While he used to receive therapy under the state’s Birth to Three program for developmentally delayed children, he grew too old for it and was sent to his local school. When the school couldn’t match that program, the Taylors worried Ryan would regress and decided to teach him at home. They also hired a lawyer to begin appealing the school’s program.

His parents aren’t teachers and working with him at home has challenges.

“We have found that many ways we think we’re being creative, we thought we’re doing the right thing, and ... the psychologist will look at us and say, ‘You shouldn’t have done that,’” Craig Taylor, a former state lawmaker, said.

Family advocates say the Taylors’ problem is one of many faced by families who have children with developmental disabilities such as autism, Asperger’s syndrome and cerebral palsy. Advocates say the state needs a better system to take care of the children from birth to death.

While the state has an agency to serve the mentally retarded, Connecticut is one of three states, along with Mississippi and Alabama, that does not have a lead agency to help the developmentally disabled. Family groups are urging state lawmakers to look at creating pilot programs or other ways to help the population.

Lois Rosenwald, an autism advocate who leads the Connecticut Autism Spectrum Resource Center and has a son in his 20s with Asperger’s syndrome, said her group has weighed the possibility of filing a class-action lawsuit.

“Leadership needs to step up to the plate. They need to say, ‘This is a fairness issue,’” she said. “Who is to say that one developmentally disabled group is more important than another? It’s ludicrous.”

While families in Ryan’s case face early problems adjusting to school, other families say they need more help than school can provide. They may need skilled nursing, a therapist, or a psychologist. Parents find it hard to find qualified babysitters to watch their children, and many need respite care just to go grocery shopping. It is also difficult to connect with other parents and get information about educational rights, doctors, and even about the disability itself, parents say.

“We came here from another state, and initially, it felt like we were in a foreign country,” said Alice Buttwell of New Milford, whose 16-year-old son has been diagnosed with a variety of developmental problems. “If you don’t have information, you have to go around and search for it. ... That shouldn’t be.”

When children leave school, parents are often left wondering how to help them function in adult life. They may need life skills or a job coach, or help with simple tasks like cooking, laundry, or balancing a checkbook. Parents often worry about who will care for their children when they die, or can’t do it anymore.

In the most serious cases, children are institutionalized. State Child Advocate Jeanne Milstein estimates that about 450 children currently being held out of state by the Department of Children and Families have developmental disabilities or mental health problems. If support was available, she said, families could stay intact.

“One of the tragedies we see in this office is when families are unable to get services, they do everything themselves, and they become exhausted and overwhelmed,” Ms Milstein said. “What a tragic cost to families, to break up families, because they can’t get services.”

State officials have explored the problem before, but found it was an expensive one to solve. In 2002, a study identified the Department of Mental Retardation as the best-qualified agency to serve as the lead agency for the developmentally disabled. To serve children each year, the cost was estimated at between $9.5 million and $19 million annually, and for adults, it could be between $79 million and $128 million.

The agency has also been burdened by a waiting list to serve its own population, the mentally retarded. But as a recent settlement begins chipping away at the list, the agency can begin to look at ways to help the developmentally disabled, said Commissioner Peter O’Meara.

Though a bill that would have created a pilot program within DMR died in the Legislature this year, Republican Gov M. Jodi Rell was expected to announce a task force this week to look at issues related to autism. What the state can’t do is open the doors to the agency and promise help without funding to back the programs, Mr O’Meara said.

“I think that’s cruel, and I don’t think that’s the route we want to go down,” he said.

The Taylor family recently reached a settlement with their school district that prevents them from commenting further. They spoke to The Associated Press before it was reached, because they said they wanted their son’s story to make a difference. Parents shouldn’t have to constantly fight for the services, including education, that their child needs, they said.

“This is about all the other Ryans who have parents who either because of their means or socio-economic status aren’t capable of fighting this battle,” Nancy Taylor said.

She added: “My dream is that one day, we’ll have a Ryan’s law.”