O'Brien vows to improve services for autistic Philadelphians

Philadelphia City Councilman Dennis O'Brien announced plans Monday to close gaps in services for growing populations of people with autism - shortcomings that have long frustrated parents as well as service providers nationwide.

At a hearing before a Council subcommittee, leaders in autism services spoke about a range of needs, including smoother transitions across the life span and improved access to care for underserved populations. O'Brien said his plans will address many of their concerns.

One major goal is to increase communication among agencies and people involved with autistic children and adults - particularly schools, insurers, and mental health providers - and possibly create a single portal for accessing services. An autism diagnosis currently requires relatives to talk to all of these and others separately, which often involves doing the same costly evaluations again and again.

"We can and must do better to address the gaps in our service systems," O'Brien said during a hearing before Council's Committee on the Disabled and Special Needs.

People with autism have difficulties with social interactions and communication that can require costly care and make it harder to get jobs. The number of diagnoses has been growing steadily, although how much of that is due to increased awareness of the disorder is unclear.

An estimated one of 42 boys and one in 189 girls are diagnosed with autism spectrum disorder in the United States, according to the latest statistics from the Centers for Disease Control and Prevention.

Almost 56,000 people on the autism spectrum received services in Pennsylvania in 2011, according to the state Autism Census. Also that year, a survey showed unmet needs for support, including mental health services, particularly among adults.

A 2011 online survey by Autism Speaks, a national advocacy and funding organization, ranked Philadelphia as one of the best 10 cities for services to autistic people, partly because of the state's mandate that certain services be covered by insurance. But O'Brien, a longtime advocate whose late nephew had autism, said the city could do better.

The new plans are the culmination of the Philadelphia Autism Project, three daylong meetings that convened more than 130 stakeholders last summer. Participants worked in groups to discuss the current state of autism resources and draft plans to improve them.

"Something of this magnitude, I think, is probably unprecedented," said Lorri Unumb, vice president for state government affairs for Autism Speaks.

One of the 15 proposals would expand Pennsylvania's Adult Autism Waiver program, which helps adults live independently and provides individualized services. An estimated 36,000 autistic adults will need services in the state in 2020. The waiver program can now serve only 518.

The report also recommended beginning discussions among schools, private insurers, and Community Behavioral Health - the agency that handles autism-related cases for Medicaid in the city - to improve access to care and simplify payments.

For Jacqueline Gallagher, the parent of an 8-year-old with autism, this would be a critical change. Gallagher, who served on the project's leadership team, struggled for six years to establish a treatment plan for her son, Jack, after his autism diagnosis at 18 months. Agencies sparring with each other over services complicated an already stressful experience.

"They throw you out into an inept bureaucratic world and say, 'Figure this out,'" she said. As both a parent and a partner in the law firm Obermayer Rebmann Maxwell & Hippel, Gallagher saw her participation as a chance to advocate for families who lack the same connections.

"The average Philadelphian doesn't know where to turn," she said.

A key goal of the project is to establish a city agency that serves as a single point of entry for access to autism-related services, spanning medical, behavioral, and educational spheres. This would streamline the process of obtaining a diagnosis and setting up a care plan, eliminating the need for multiple evaluations.

"The whole idea is to break down the silos and make sure that everyone is served better," O'Brien said in an interview.

Such a behemoth task "is going to be extremely challenging," said Lindsay Shea, another member of the leadership team and director of the Eastern Region Autism Services, Education, Resources and Training Collaborative at Drexel University.

O'Brien said his office will create a working group to increase internships for autistic individuals within city departments. The group will also approach large employers, such as Philadelphia International Airport, Wawa, and Dunkin' Donuts.

Most of the initiatives are scheduled to roll out over the next two years, fueled by a $100,000 current city grant. Shea's collaborative will work with O'Brien to identify more funding needs.

O'Brien said he hopes that his plan will serve as a model for other cities. But now the challenging process of putting these plans into action begins, he said. "We want this to be an evolutionary process so that the best practices and the best research and the best thinkers are always engaged in this."

In a statement, Council President Darrell L. Clarke applauded O'Brien for "his proactive approach to the growing problem of children with disabilities cycling out of supports and services upon reaching adulthood," adding, "Our city cannot truly move forward without making sure all Philadelphians, including those with disabilities, have opportunities to achieve their full potential."