O'Brien champion to autistic citizens
(Editor's note: This is the last part of a four-day series of informational stories about autism and profiles of people who are afflicted with the condition.)
Nearly 20 years later, state Rep. Dennis O'Brien remembers the day he realized that he was the last hope for some special needs children.
The Philadelphia Republican -...who now serves as House speaker - had been asked to meet with the board of the Green Tree School.
Located in northwest Philadelphia, the school serves three distinct groups of students: school-age students with serious emotional disturbances, children and teens with autism spectrum disorders and preschoolers with developmental delays.
"They convinced me that if the line item for these types of schools was removed, these kids would regress," O'Brien said.
Shortly after that meeting, O'Brien attended what turned out to be a five-hour session to discuss financing with officials from 34 privately-approved schools. Specifically, the state was considering a plan to shift the money these schools received to general special education.
"As I was going down the elevator, I never felt so alone," O'Brien said. "I knew if I did not get that money back in, I was letting those kids down.
"I kept waking up at night thinking about those kids."
With the fate of these special children was in the balance, O'Brien admittedly became further motivated by the callous statement of a peer.
"One legislator asked, 'Why are we wasting money on these severely disabled kids, because it's not making a difference?" O'Brien recalled.
O'Brien joined a rally at the capital soon after. One of the speakers was Timmy McCullough, a 10-year-old autistic boy. As he struggled to speak, his heartfelt words moved the audience.
"When he spoke the words, 'I want to be a police officer, just like my dad,' the people began to cry," O'Brien recalled.
Several months later, O'Brien was sitting in his darkened office, quietly contemplating the issue at the end of a long day when then-state Senate aide Charley Hoffman came in, and said, "You win."
Subsequently, $80 million to fund programs for the disabled was reinstated to the budget.
O'Brien would later learn that his nephew, Christopher, is autistic. He spoke at an early age, but no longer does.
In 2003, Estelle B. Richman, secretary of the Pennsylvania Department of Public Welfare, created the Autism Task Force.
Comprising more than 250 family members of people living with autism, service providers, educators, administrators and researchers, it was charged with developing a plan for a new system for individuals living with autism and their families. The goal was to make Pennsylvania a national model of excellence in autism service delivery.
O'Brien noted the autism task identified several problems, including the lack of trained professionals and educational and community-based services to help autistic citizens.
O'Brien continues to be a vocal advocate for autism.
In the most recent legislative session, O'Brien proposed four bills related to autism, including two designed to provide mandatory school funding and health care for children with disabilities. All four failed to reach the governor's desk. Undeterred, O'Brien said he plans to reintroduce the measures.
O'Brien this spring introduced a bill that would require private insurers to cover up to $36,000 annually for autism services.
Earlier this year, Gov. Ed Rendell and Richman announced formation of the Office of Developmental Programs, which includes the Bureau of Autism Services.
"This is an exciting development, bringing government and community resources together like never before in order to do the most good for people with autism and their families," O'Brien said in a released statement at the time of the announcement.
"It follows a recommendation of the state's Autism Task Force and is something that I and many advocates have been hoping for."
Nina Wall-Cote, DPW's autism affairs director, will head the newly formed bureau.
New data released earlier this year by the Centers for Disease Control found that, on average, one in 150 children in the U.S. eventually is diagnosed with an autism spectrum disorder.
"For all of these kids, the first hurdle is getting a proper diagnosis as early as possible," O'Brien said. "The state's new service model can help break down bureaucratic barriers and bring agencies, service providers and community organizations together to do a better job of serving kids with all kinds of developmental challenges."
Rendell proposed a 65 percent increase in funding for autism intervention and services in the proposed 2007 budget. O'Brien described that as a great step forward, although resources continue to lag far behind needs. That proposal is still on the board as budget negotiations continue this week.
Numerous other states, including New York, Illinois, South Carolina and Indiana, have enacted similar legislation and prohibit insurance discrimination against autistic citizens, O'Brien said.
"As things stand in Pennsylvania, most health insurers do not provide coverage for autism-related treatment," O'Brien said.
"The effect of that is that families of persons with autism have two choices: to pay out of pocket for certain necessary treatments or to have the Medical Assistance program pay for those treatments. In reality, many people must do both, because Medical Assistance does not pay for all treatment.
"This places the burden on our commonwealth budget, since so many treatments that might otherwise be covered by private health insurance are now being paid for by the Medical Assistance program. House Bill 1150 would mitigate those budgetary issues by requiring health insurers to cover services related to autism spectrum disorders."
