Autism Grants Help New Jersey Families Coordinate Care

Program, supported by surcharge on traffic tickets, also provides funding for research in Garden State

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Autism rates are rising by double digits in New Jersey, but state-funded grants have provided some measure of hope and help to many hundreds of individuals with the developmental disorder and their families, who often struggle to provide adequate care.

These efforts received the latest boost last week when the Governor’s Council for Medical Research and Treatment of Autism distributed $3.2 million in grant funding for eight separate projects focused on understanding, diagnosing, treating, and living with autism-spectrum disorder. The cause of the disorder remains a mystery, and symptoms, which range from mild to severe, tend to impact social communication and interaction.

Estimates suggest one in every 41 Garden State children has autism, compared to one in 68 nationwide, according to the most recent analysis by the federal Centers for Disease Control and Prevention, released in March. For New Jersey, this represented a 12 percent increase over the one-in-45-child rate found two years ago. Autism is 4.5 times more prevalent in boys than girls.

Since 2000, New Jersey leaders have sought to temper this trend by investing tens of millions of dollars, raised through a surcharge on traffic violations, in research and programs designed to help individuals and their families cope with the challenges associated with autism. The Governor’s Council has directed some $27 million in the past six years to fund multi-year efforts to improve early diagnosis, use new technology to benefit communication, and explore autism’s genetic connections.

“These grants enhance the state’s commitment to find new and innovative ways to help New Jersey families affected by autism,” New Jersey Health Commissioner Cathleen Bennett said.

Government support for research into the cause and science behind autism is nothing new, but New Jersey has directed additional resources toward programs designed to help individuals and families cope with the daily challenges of the condition. In the past few years, this has included funding for a handful of Autism Medical Homes, programs that train staff to serve as healthcare coordinators for families with autistic members to ensure they are getting the services they need from doctors, outpatient programs, schools, and other support systems.

“These grants are the administration’s continued commitment to meeting families’ needs,” explained Suzanne Buchanan, executive director of Autism New Jersey, which advocates for services and connects those in need with resources. The organization runs the state helpline, 800-4-AUTISM, which operates weekdays from 8:30 a.m. to 5 p.m.

The medical homes have been particularly helpful, Buchanan said. “We hear from families every day who are overwhelmed by the demands and this places the burden with the professionals,” she said. “Parents are understandably at a disadvantage trying to coordinate care they may not understand,” she added, “and this is an amazing gift.”

Dr. Jill Harris is among those in charge of the Autism Medical Home at Children’s Specialized Hospital, which helps coordinate care for some 300 families. Past grants allowed the team to develop a system for ensuring autistic children and their siblings receive comprehensive, high-quality care from their primary-care physician, specialists, and others and that they are appropriately accommodated at school.

“In the medical home, that can all be coordinated, and there can be standards of quality,” Harris explained. “This time around we wanted to focus on young adults.”

The 2016 funding — $400,000 — will enable Children’s Specialized to design a program that ensures teens and young adults can be properly supported as they move into adult care at other facilities. This effort will also consider complex questions about establishing long-term guardianship for individuals who can’t care for themselves, Harris said.

Other grants have enabled experts at Children’s Specialized to explore ways to expand autism screenings among young children, efforts to create a more visual-based assessment that is more effective with diverse cultures and nonnative English speakers, and develop a statewide advocacy network, Harris noted. “We’ve been so lucky — thank God for those moving violations,” she said. “Without the funding, we wouldn’t be able to do these things.”

The other grants provided this year include:

  • $400,000 to Hackensack University Medical Center, another autism medical home, to coordinate care for adolescents and young adults.
  • $399,875 to the New Jersey Institute of Technology to use neuroimaging to study the brains of children with autism to answer why it is more prevalent in boys and how it can be better diagnosed early on.
  • $400,000 to Rutgers Biomedical and Health Sciences to conduct a study using innovative genetic and molecular technologies to benefit clinical interventions that can help those with autism.
  • An additional $399,751 to Rutgers Biomedical and Health Sciences to study markers of autism risk to better understand individualize treatment.
  • $400,000 to Children’s Hospital of Philadelphia for research that focuses on creating low-cost, efficient tools to measure and improve motor behavior.
  • $400,000 to Saint Peter’s University Hospital to study children with ASD who also have additional medical conditions that affect other organs, not just the brain.
  • $392,304 to Rutgers, the State University for a study that focuses on identifying the potential barriers in pedestrian infrastructure design for individuals with ASD.