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Public Policy Advocacy: What’s Ahead and How to Help

As an organization dedicated to enhancing the lives of individuals on the autism spectrum and their families, ASNC advocates for public policies that support people on the spectrum and monitors changes in our developmental disability and education systems. We work with policymakers at the General Assembly, state departments such as NC Department of Health and Human Services, Department of Public Instruction and others,  and with Managed Care Organizations, and other health care and service managers to help create better opportunities for people on the autism spectrum.

Public Policy Targets for 2021-2022

ASNC creates public policy targets every two years based on feedback from a public policy survey shared with our community; our work with families, individuals, professionals, coalition partners, and policymakers; and our staff and Board of Directors. There are significant, numerous needs: The wait list for the Register of Unmet Needs with LME/MCOs has grown to nearly 15,000 people, many community-based services and supports have shrunk, and crisis services do not meet demands. Disparities remain in local funding for special education. Unemployment for those with autism remains between 50 and 80 percent.

Our targets are framed by the challenges of the last decade; prior to the current global pandemic, economic recovery did not result in investments in services and supports. Due to the pandemic, we again face uncertain economic times.

With limited resources with which to advocate, ASNC selected three focus areas for our advocacy targets:

Focus Area 1: People with autism can live in and contribute to their communities.

  • Make meaningful progress in increasing funding in services that reduce or eliminate the 15,000-person waiting list.
  • Ensure people with disabilities have staffing for services by supporting initiatives to pay direct support professionals (DSP) a sustainable wage, support the DSP career path, and increase provider rates.
  • Establish a centralized Registry of Unmet Needs list to eliminate disparities between wait times in different counties.

 

Focus Area 2: People with autism have opportunities for growth and are not left behind their peers.

  • Assure early access to diagnostic assessments by increasing rates and directly funding low or no cost programs.
  • Increase special education funding and remove funding disparities, including caps on local special education funds, to better support students in schools, expand teacher training/mentoring, and provide access to the same learning resources.
  • Make sure adults on the spectrum do not “fall off a services cliff” after leaving high school. Help youth transition to employment opportunities, secondary education programs, and meaningful activities. Ensure adults have access to an array of services that work for them and their families.
  • Close health care coverage gaps and assure access to affordable health care coverage.

 

Focus Area 3: People with autism are treated justly.

  • End the use of seclusion and restraint in schools by implementing evidence-based alternatives.
  • Ensure NC’s guardianship program has stable funding, training for courts and families, and focuses on retention and/or restoration of rights when possible.
  • Ensure people move effectively between services systems (early childhood, education, child services, adult services, employment, etc.) with conflict-free, person-centered care management.

 

How to Help

We cannot do this advocacy alone. We need families and individuals touched by ASD, whether as a parent, a self-advocate, a friend, a neighbor, or a service provider to get involved in autism advocacy in order to create much needed public policy changes. Here are some ways to get involved:

  1. Build a relationship with your NC state legislators. Sharing our stories with Legislators is one of the most powerful ways to educate them on the need for supports for people with autism and their families. Review our tips for contacting officials at autismsociety-nc.org/make-voice-heard.
  2. Stay informed. Sign up for the ASNC Policy Pulse email list at our website. This periodic email focuses on public policy and advocacy to keep you aware of what is happening across the state that may impact you or your family. We will alert you there when direct action may be especially necessary. We also encourage you to bookmark the ASNC blog – autismsociety-nc.org/blog – for the latest in issues affecting people with autism and their families.

For more information, contact Jennifer Mahan at jmahan@autismsociety-nc.org.

 

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