Public Policy Priority: Severe Challenging Behavior

Autism New Jersey is acutely aware that children and adults with autism and severe challenging behavior have few, if any, ways to access treatment. We recognize that any advocacy efforts to increase public and private capacity must be mindful of the complexities involved in state laws and regulations, funding, treatment, and long-term service provision. Thus, we are analyzing state policy, best practices, and the experiences of families and clinicians, all in an effort to better articulate families’ experiences, quantify the scope and depth of the problem, and make comprehensive recommendations to improve state policies.

As we continue our analysis, our policy team is also working on the following initiatives to prevent or minimize severe challenging behavior.

Treatment

Access to Treatment

Qualifications

Provider Qualifications

Reimbursement

Reimbursement Rates

  • Successfully led advocacy effort requesting Children’s System of Care’s (CSOC) establishment of a higher reimbursement rate for doctoral-level behavior analysts
  • Advocating to raise the provider qualifications across funding streams (e.g., early intervention, education, behavioral health, adult services) will increase reimbursement rates over time

Capacity

Building Systemic Capacity

  • Leading the ABA Advisory Committee in our collaborative work with Children’s System of Care’s (CSOC) and providing ongoing technical assistance to CSOC and providers of intensive in-home (IIH) services to strengthen Applied Behavior Analysis (ABA) services for children and adolescents with severe challenging behavior
  • Providing requested feedback on CSOC’s plan for intensive residential services designed to serve children with severe challenging behavior
  • Providing recommendations to DDD’s initiatives to improve statewide capacity so that adults with severe challenging behavior can access timely and effective treatment

Autism New Jersey is committed to doing everything we can to systematically improve the quality of life for individuals with autism and severe challenging behavior and their families, and we welcome your ideas. Contact us at publicpolicy@autismnj.org.


 

Survey Results

Autism New Jersey conducted a survey in the fall of 2017 to assess the needs of parents of children and adults with severe challenging behaviors. There were 200 respondents, with representation from the entire state of New Jersey.

A composite of the survey results shows the typical individual is:

  • 16-year-old male
  • Lives at home with family
  • Is aggressive, non-compliant, self-injurious and/or destructive
  • Exhibits these behaviors on a daily basis
  • Is currently not improving
  • Participation in social and family events is very limited