North Carolina State Level Advocacy Updates:

Autism Insurance Reform (Christopher’s Bill) – We were unsuccessful in getting this passed in 2010 during the NC Short Session. We did educate a ton of Legislators on the issues and laid the groundwork for 2011. Insurance reform is a joint effort between ASNC (Autism Society of North Carolina) & AS (Autism Speaks). Our Committee is working on updating our proposed Bill, educating parents on lobbying efforts, working on building relation/agreements with other groups supporting Autism and analyzing the November election results to find a new CORE Sponsor for our 2011 efforts. With the power change in Raleigh we need to change how we push/move this Bill.  If you have any strong legislative contacts in Raleigh, we would be interested in leveraging these to find a Sponsor for the Bill.  Randolph Cloud has been retained by ASNC as our Lobbyist for 2011 again. More information on this effort can be found at: http://www.autismvotes.org/site/c.frKNI3PCImE/b.4434153/k.9A83/North_Carolina.htm                           

Autism Speaks National Legislative Agenda:

Federal Level: - ABLE - Achieving a Better Life Experience Act - is designed to encourage individuals with autism (and other disabilities) and their families to save for disability-related expenses. The ABLE Act is meant to supplement rather than to replace benefits provided by other sources (including Medicaid and private insurance). The ABLE Act authorizes “ABLE Accounts,” which are similar in many respects to existing 529 college savings plans. Provided certain rules are met, disability savings accounts will be exempt from federal taxation. 

In 2010, we failed to gain enough sponsor in the House & Senate to move forward. AS will be moving this into the 2011 Session.  In North Carolina we failed to get the support of Senator Hagan on this bill or have her even give us an opportunity to discuss with her or her staff. In the House we had the following Sponsor from North Carolina.

                 House Sponsor for ABLE:

                                Rep Brad Miller (NC-13)

                                Rep Sue Myrick (NC-9)

                                Rep Walter Jones (NC-3)

                                Rep Mike McIntyre (NC-7)

                                Rep David Price (NC-4)

  

Federal Level – CAA (Combating Autism Act of 2006) – CAA is the single largest piece of Federal Legislation passed in recent history and it expires in 2011. AS and other organization are working to introduce a re-authorization of this Law.  This will be a MAJOR effort in 2011, look for updates in the near future!

Below is an overview of CAA:

The Combating Autism Act Enhances Research, Surveillance, And Education Regarding Autism Spectrum Disorder

The Act Authorizes Research Under NIH To Address The Entire Scope Of Autism Spectrum Disorder (ASD). Autism, sometimes called "classical autism," is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs). Other ASDs include Asperger syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS).

The Act Authorizes Regional Centers Of Excellence For Autism Spectrum Disorder Research And Epidemiology. These Centers collect and analyze information on the number, incidence, correlates, and causes of ASD and other developmental disabilities. The Act also authorizes grants to States for collection, analysis, and dissemination of data related to autism.

The Act Authorizes Activities To Increase Public Awareness Of Autism, Improve The Ability Of Health Care Providers To Use Evidence-Based Interventions, And Increase Early Screening For Autism. The Act authorizes the Secretary of Health and Human Services to:

  • Provide information and education on ASD and other developmental disabilities to increase public awareness of developmental milestones;
  • Promote research into the development and validation of reliable screening tools for ASD and other developmental disabilities and disseminate information regarding those screening tools;
  • Promote early screening of individuals at higher risk for ASD and other developmental disabilities as early as practicable;
  • Increase the number of individuals who are able to confirm or rule out a diagnosis of ASD and other developmental disabilities;
  • Increase the number of individuals able to provide evidence-based interventions for individuals diagnosed with ASD or other developmental disabilities; and
  • Promote the use of evidence-based interventions for individuals at higher risk for ASD and other developmental disabilities as early as practicable.

The Act Calls On The Interagency Autism Coordinating Committee (IACC) To Enhance Information Sharing. The IACC provides a forum to facilitate the efficient and effective exchange of information about autism activities, programs, policies, and research among the Federal government, several non-profit groups, and the public. The Combating Autism Act requires the IACC to provide information and recommendations on ASD-related programs, and to continue its work to develop and update annually a strategic plan for ASD research.

  • Support of the Expanding the Promise of Individuals with Autism Act (EPIAA)
    a bill designed to provide demonstration grants for autism treatment and services
    • Current North Carolina cosponsors
      • Rep. Brad Miller (NC-13)
    • To find out more about this bill or to contact your representative, click here.
  • Support of the Disability Savings Act of 2008
    a bill that will provide a tax-preferred savings benefit for disability related expenses.
     
       
    To find out more about this bill or to contact your representative, click here.
  • Undertake a multi-state insurance legislation campaign
    an effort to change insurance laws and require coverage of medically necessary autism services.
      • North Carolina is currently in the process of working on autism insurance reform, but does not yet have a bill endorsed by Autism Speaks.
  • Educational outreach to the policy staffs of all major party candidates for President in 2008

 Stay up to date on the latest legislative news:

 Where can I sign my local petitions?

 

 
Whitney Jones & Bob D'Amelio, Community Advocacy Chair
                  2008 ASNC Conference