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Public Policy: Advocacy in 2019 and Beyond

One of the most difficult aspects of advocacy is looking at all of the barriers that one might face and believing, despite all of it, that change is possible. The Autism Society of North Carolina has from the start been dedicated to using advocacy to improve the lives of individuals on the autism spectrum and their families. The hope has always been to develop a world in which every person on the spectrum has the opportunity to make a unique contribution to their family, community, and society.

ASNC has made progress in educating elected officials, especially our state legislators, about Autism Spectrum Disorder and in making changes over decades that established school rights, autism-specific services and waiver programs, self-determination, and greater access to an array of services under health insurance and state-funded supports. Despite all of these positive changes, every year, the progress we have made feels overshadowed by threatened or actual budget cuts and the growing need for services.

We know that people still lack supports in health coverage, in access to waivers, in education, in employment, and in housing. Our public policy agenda for the next two years is ambitious and will clearly require more than two years to accomplish, but it reflects the real needs of people across our communities.

 

We need YOUR help

This is where your ongoing commitment to advocating, when you feel heard and even when you do not, is more important than ever. We need all families and individuals touched by ASD, whether as parents, self-advocates, friends, neighbors, or service providers, to get involved in autism advocacy to create much-needed public policy change.

2019 marks the start of the NC General Assembly long legislative session, which will run from mid-January through June. It also is the start of a new Congress in Washington, D.C. State legislators start with a “clean slate” and introduce new bills as well as a two-year budget. Congress will be looking at new spending bills, and we hope supporting the rights and safety of people on the spectrum. We urge everyone in the autism advocacy community to begin working with your legislators now, as they will be determining their priorities very quickly. Let’s make sure our priories are theirs.

Here are some ways to get involved in advocacy:

  • Build a relationship with your NC state legislators. Sharing 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. The start of the new legislative session after an election is a good time to introduce yourself to any newly elected legislators, and if you have not contacted them before, to let your elected officials know who you are. Review the Tips for Contacting Your Legislator handout on our webpage titled Make Your Voice Heard.
  • Stay informed. Subscribe to our emails, including the ASNC Policy Pulse email, a periodic update to keep you aware of what is happening across the state that may affect you or your family. We encourage you also to stay informed by connecting with us on Facebook and Twitter. Continue to visit this blog regularly for the latest on issues affecting people with autism and their families.
  • Respond to policy alerts. Direct action by you made all the difference in our efforts to retain services these past two years. We urge you to continue that advocacy during the year as issues come up. Please make sure autismsociety-nc.org emails are headed to your inbox and not junk folder!

 

Public Policy Targets for 2019-20

What follows are our state public policy targets for 2019-20. ASNC issues two-year policy targets to match up with the two year-legislative and budget cycle. ASNC seeks input on policy targets from community members, looks at the legislative outlook, and decides which issues it will work on to create policy change.

 

Access to Services

North Carolina should ensure a high-quality continuum of services and supports for individuals on the autism spectrum and their families across the lifespan, with a focus on community settings and ensuring that people with Autism Spectrum Disorder achieve a good quality of life. This includes access to developmentally appropriate services, supports, and interventions; health care; employment supports; and long-term care services.

  • Ensure that the services system is accessible and better serves individual needs of people with autism through eliminating Innovations community-based waiver waiting lists, increasing state-funded IDD services for people without health-care coverage, and increasing access to developmentally appropriate diagnostic services and autism-specific supports for ages birth to 5.
  • Ensure that adults across the autism spectrum have access to the training, services, and supports needed to be prepared for employment.
  • Ensure that appropriate and adequate housing options exist for people on the autism spectrum.

 

Access to Education

The education system should be accessible to and better serve people with autism and other developmental disabilities. Students should have options that suit the unique needs of people with Autism Spectrum Disorder.

  • Increase per-student funding for special education and allocate special-education funding to address individual education needs.
  • Ensure a fair threat-assessment process for students.
  • Increase autism-related training and professional development for teachers and other school staff.
  • Ensure that employment is an outcome of education services by improving IEPs and transition plans as well as increasing access to vocational training, job experience, and post-secondary opportunities that meet individuals’ goals and aspirations.

 

Rights and Freedoms

Our system of justice and individual rights should recognize the needs of individuals with autism and their families to ensure that people are safe, treated equitably, and able to exercise their personal freedoms.

  • Create access to autism-related training (similar to that of law enforcement) for judges, magistrates, court systems, county departments of social services and others involved in determinations of guardianship, child protection, individual and parental rights, and other legal issues.
  • Ensure that guardianship programs have adequate resources, and individuals and families have information about and access to alternatives to guardianship.
  • Ensure that people on the spectrum have access to identification for purposes of voting.
  • Implement evidence-based strategies to limit the use of seclusion and restraint across settings.

 

System Management and Managed Care

North Carolina should develop policies and invest in services to ensure quality life outcomes for people with Autism Spectrum Disorder and other developmental disabilities. Our public and private health-care system should support people in community settings; operate in a transparent fashion; be outcomes-focused; provide integrated access to physical health care and prevention; recognize the unique needs of people on the autism spectrum; and include autism self-advocates and families in the decision-making process.

  • Encourage innovative service delivery, professional education, and funding that will improve the geographic distribution and quality of services across the state. This includes adequate funding for a well-trained and stable direct-care workforce.
  • Ensure that the needs of people with autism are met in Medicaid as NC implements managed-care options.
  • Focus the services system on person-centered outcomes.

 

Need help finding your elected officials or who is running for office in your area? Have questions about public policy or advocating? Contact Jennifer Mahan, Director of Government Relations at ASNC, at 919-865-5068 or by email at jmahan@autismsociety-nc.org.

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