Virtual Trainee: Suzanne Engel Psychology Trainee University of Rochester Medical Center Strong Center for Developmental Disabilities

 Nick McNeill – Health Policy – Massachusetts - Institute for Community Inclusion and Childrens Hospital Boston  Lancing Adams – Public Administration - New Mexico - Center for Developmental Disability  Lynise Parisien – Family Trainee – Tennessee- MIND/LEND program in Nashville  Angela Huss - Social Work - New York - Strong Center for Developmental Disabilities, University of Rochester Medical Center  Pam Thyng, – Child Advocacy and Family Policy – New Hampshire - Institute on Disability

Disability Policy Seminar: The Combating Autism Act & Reflections from the Hill Nick McNeill, LEND Fellow, Children's Hospital Boston

The Combating Autism Act (CAA)  On December 19, 2006, President Bush signed into law the Combating Autism Act (CAA, PL ).  Wide-reaching: Targets and coordinates every available system in order to efficiently and effectively address Autism Spectrum Disorders (ASDs), which now affects approximately 1% of the U.S. (or 1 every 110 children).  The law focused on expanding research and coordination at the National Institutes of Health (NIH), increasing awareness and surveillance at the Center for Disease Control (CDC), and expanding the interdisciplinary training of health professionals to identify and support children with ASD and their families.  This law is scheduled for reauthorization this year. Due to sunset language, this law will expire if it is not reauthorized by September  According to a recent congressionally mandated report, in the past four years under the provisions of the CAA, significant advances have been made in our understanding of ASDs

The Combating Autism Act (CAA)  The median age for ASD diagnosis (approximately 4.5 years of age) appears to be favorably on the decline  Strategic efforts aimed at underserved populations are under way to encourage awareness, early diagnosis, and intervention  Additional efforts needed to provide the necessary evidence base to support a wide variety of new interventions, services and supports for individuals on the spectrum  Federal agencies are actively identifying best practices and implementing programs to increase quality of life for people with ASD  Individuals with ASD and their families continue to need access to accurate information about scientifically-supported interventions  Training of a wide range of interdisciplinary professionals to provide these services must be a top priority

The Combating Autism Act (CAA)  111th Congress:  Sens. Durbin (D-IL), Casey (D-PA), and Menendez (D-NJ) introduced the Autism Treatment Acceleration Act. A companion bill was introduced in the House by Reps. Doyle (D-PA) and Smith (R-NJ)  The House of Representatives also passed the Training and Research for Autism Improvement Nationwide Act in the last Congress.  Former Sen. Dodd (D-CT) introduced a bill to reauthorize the Combating Autism Act in the waning days of the 111th Congress  112th Congress and the Administration:  No bills have been introduced yet and no hearings have been scheduled  President Obama has repeatedly pledged support to increase research, training and services for individuals on the spectrum

The Combating Autism Act (CAA)  Recommendations: The 112th Congress should →  Reauthorize and fully fund the Combating Autism Act  Support legislation that addresses the direct service and interdisciplinary training needs associated with the increasing number of those with ASDs  Relevant Committees:  House and Senate Appropriations Committees  Senate Health, Education, Labor and Pensions Committee  House Energy and Commerce Committee (Subcommittee on Health)  House and Senate Labor, Health and Human Services and Education Appropriations Subcommittees

Reflections from the Hill

 Two meetings:  With Senator John Kerry’s (D-MA) legislative director, Megan Thompson  With Representative Bill Keating (D-MA) and his legislative director, Mira Resnick  Numerous issues were discussed:  With Megan: Medicare, Medicaid, Social Security, The D.D. Act  With Rep. Keating & Mira: Opposing the 'No Taxpayer Funding for Abortion Act’, PPACA implementation  I discussed the CAA in both meetings, and both went well

New Mexico LEND Participants:  Lancing Adams  Public Administration Fellow, UNM  Jonathan Clark  Social Work Fellow, NMSU  Michelle Haswood  Public Administration Fellow, UNM  Sandra Heimerl, PT, DPT, MS  NM LEND Training Director  Terry Crowe, Ph.D.  NM LEND Faculty

Policy Information:  Budget Outlook for FY12  Employment  Affordable Care Act  Social Security  Medicaid  Housing  Autism

Reflections on Hill visit:  Lancing: Advocated for the reauthorization of the Combating Autism Act which expires September, 2011  Michelle: Lobbied against cuts and/or caps to Medicaid funding which could significantly impact disability programs.  Jonathan: Advocated in support of the Workforce Investment Act and for state vocational rehabilitation programs which empower persons with disabilities.

Reflections from the Trainees at the Strong Center for Developmental Disabilities, University of Rochester Medical Center

At the Disability Policy Seminar, we....

On the hill, we

One thing we will bring back to our LEND program is

Activities involved in:  Family Trainee – MIND/LEND – Vanderbilt, Nashville, TN  Member of the District 5 Family Support Council – provides program funding for individuals/families with disabilities  Member of the Community Advisory Council at Vanderbilt Kennedy Center – educational research and funding  Volunteer educational advocate through the ARC of Davidson County to support families get the services their child needs in the school setting. ….has 2 beautiful daughters, the youngest one with autism. ….enjoys volunteering her time to work with special needs children and their families. ….works full-time as a Sr. Financial Analyst for Asurion. Rachael and Brooke Lynise Parisien

Takeaways from the Disability Policy Conference:  At the conference, most of the speakers painted a grim picture on the future funding on the much needed support programs to help individuals with disabilities become more independent and have the opportunity to be self- directed.  Government reduction in spending means available money to support important programs to help individuals with disabilities and their families will be cut. Awareness to the impact on those families is critical.  If we learn to have meaningful conversations with our politicians our message will go much further.  One person can make a difference.

 Pam Thyng New Hampshire Preparing for the Hill

Tips for Making Appointments  Make the appointment weeks before.  Check to see if the office uses for schedulers  Call offices of Congress  Ask if you will meet with the member or staff.  Ask how long you will have to meet.

Tips for Preparing For Your Visit  Depending on number in your group divide up the time you are allowed.  Break up your presentation into logical segments.  Try to have the information flow naturally.  Do not use acronyms-spell it out.

Tips for Preparing For Your Visit  Depending on number in your group divide up the time you are allowed.  Break up your presentation into logical segments.  Try to have the information flow naturally.  Do not use acronyms-spell it out.

A Breakdown of a Visit  Introduction and purpose of your visit.  History of the issue.  Scope of the issue.  The work that you do.  Specifics of your program.  Personal stories.  Why issue is so important.  Remind them they can use your agency as a resource.  Thank them for seeing you. Ask for their support.  Ask if they have questions.

Have fun  They need you to inform them.  They know less than you do!  They cannot be an expert on every issue and they rely on others to get them up to speed.  Their staff are important too, so do not be insulted if you don’t meet with your leader.  They are motivated to get the best information for their bosses! …and Remember…

Questions? Trainees from the Northeast LEND programs

 For more information on the Disability Policy Seminar go to  Interested in being the Virtual Trainee next year?  This individual works remotely from his/her home Center/Program for one academic year to build and enhance a network among trainees at AUCD’s UCEDDs and LENDs. Candidates should be a trainee in the coming year, have previously acquired knowledge of their Center or Program, and be interested in learning about the entire network of centers as well as national issues related to persons with disabilities and special health care needs. Watch the AUCD website for application information.  More information is available at  Questions or comments, the Virtual Trainee at