Transcript Document
Virtual Trainee:
Suzanne Engel
Psychology Trainee
University of Rochester Medical Center
Strong Center for Developmental
Disabilities
[email protected]
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 109-416).
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 2011.
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
Reflections from the Hill
Reflections from the Hill
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
Jonathan Clark
Public Administration Fellow, UNM
Sandra Heimerl, PT, DPT, MS
Social Work Fellow, NMSU
Michelle Haswood
Public Administration Fellow, UNM
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
Lynise Parisien
….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.
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.
Rachael and Brooke
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 selfdirected.
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.
Preparing for the Hill
Pam Thyng
New Hampshire
Tips for Making Appointments
Make the appointment weeks before.
Check to see if the office uses email
Call offices of Congress
for schedulers
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.
…and Remember…
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!
Have fun
Questions?
Trainees from the Northeast LEND programs
For more information on the Disability Policy Seminar go
to www.disabilitypolicyseminar.org
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
http://www.aucd.org/template/page.cfm?id=320
Questions or comments, e-mail the Virtual Trainee at
[email protected]