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Transcript of National Association of Councils on Developmental Disabilities Webinar with Autism NOW March 29,...
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NACDD/Autism NOW
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M
ission
NACDD serves as the National Voice of State
and Territorial Councils on DevelopmentalDisabilities. We support Councils in
implementing the Developmental Disabilities
Assistance and Bill of Rights Act promoting the
interests and rights of people withdevelopmental disabilities and their families.
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Who We Are
The National Association of Councils on
Developmental Disabilities (NACDD) is a national
membership organization representing the 55 State
and Territorial Councils on Developmental Disabilities.
NACDD is a 501(c) 3 organization with the purpose of
promoting and enhancing the outcomes of our
member councils in developing and sustaining
inclusive communities and self directed services andsupports for individuals with developmental
disabilities.
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What We DoNACDD
Educates the public and Congress about issues ofimportance to people with developmental disabilitiesand their families
Represents Councils on disability policy issues throughcoalitions and collaboration
Administers Technical Assistance to Councils throughfederally funded technical assistance project -Information and Technical Assistance for Councils on
Developmental Disabilities (ITACC) Provides Councils a platform to share information on
best practices and model programs
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Core Values in the DEVELOPMENTAL DISABILITIES ACT
Independence
Productivity Integration
Inclusion
Self Determination
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H
ow Councils Effect Change
The DD Act charges Councils to work within specific areas of emphasis.
These include employment; education and early intervention;
transportation; health; recreation; child care; formal and informal
community supports, and; quality assurance.
As such, it is essential that Councils continue to engage the autism
community as a vital part of the broader DD community, and that
people with autism, and advocacy organizations that address their
needs, work with Councils to build better futures that includeeconomic opportunities, independent living and full participation in
community life.
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The Councils Work
Councils engage in activities through
Advocacy
Capacity building
Systems change
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The Councils Work
Like other people with developmental disabilities,
people with autism need assistance in earlyintervention and education, transition from school
to work, health, recreation, employment, housing,
and transportation.
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NACDD and ItsM
ember Councils Support efforts to address the sharp rise of autism
diagnoses
Support assisting DD advocates, families, service providers,
and systems in meeting the needs of children and adultsacross the autism spectrum
Support the further engagement of people with autism,
their families and service providers in the broader DD
movement Actively seek individual with autism and their family
members to serve on State/Territory Councils
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NACDD and ItsM
ember Councils
NACDD recognizes that autism is the fastest
growing segment of the broader developmental
disabilities population. Like all people with developmental disabilities,
children and adults on the autism spectrum have
the same rights as other people to exert control
and choice over their lives, to live independentlyand to participate fully in, and contribute to, their
communities.
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M
ember Services
NACDD provides services designed to assist
Councils in their efforts to promote the interests
and rights of individuals with developmental
disabilities and to inform policymakers and the
public about the results of these efforts.
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2011
Annual Conference
Building Bridges
Meeting the Expectations of a NewGeneration
NACDD Annual Conference
November 16-17, 2011Gaylord National Harbor, Metropolitan Washington, DC
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ITACC
ITACC (Information and Technical Assistance forCouncils on Developmental Disabilities) is a federally
funded technical assistance project providing technical
assistance to Councils on Developmental Disabilities.
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Public Policy
NACDD assists Councils with their role as advocates for
systems change by educating the public and Congress
about issues of importance to people withdevelopmental disabilities and their families. NACDD
also works with other disability organizations that
have a similar vision to achieve common goals.
DD Network Disability Policy Seminar
CCD
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Council Work
Councils work to benefit allpeople with developmental
disabilities and their families, and seek programs and
policies that benefit people with allkinds of developmental
disabilities.
We prefer policies and programs that benefit the broader
community rather than target a specific diagnosis or
condition. Yet we acknowledge the alarming growth in therate of autism diagnoses, and the subsequent increased
interest in, concern about, and action on autism.
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Council Work H
ealth Care
Advocacy Example: advocate for access to health
care, treatment, pain management and quality care
for people with developmental disabilities
Capacity Building- Example: Dental care initiatives
Systems Change - Example: securing on-going funding
for health related programs, accessibility issues
physician offices, and appropriate diagnosis andtreatment for individuals with DD who are
experiencing mental health issues (dual diagnosis)
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Council Work - Employment
Advocacy - Councils advocate for policy changes,changes in standards affecting service delivery ofemployment related services, promote abilities ofpeople with developmental disabilities, educateemployers and policymakers about policy changesneeded to improve employment outcomes forpeople with developmental disabilities
Capacity Building Example: train employers
Systems Change Example: promotingEmployment First
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Council Work Community Inclusion
Councils work in a variety of ways to ensure people withdevelopmental disabilities and their families are
included in communities of their choice. Example:
individuals, family members and policy makers
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Councils Work on Autism
Washington State:
The DDC was instrumental in creating and implementing a waiver for children
with DD needing intensive in-home behavioral supports that now serves
about 60 families. To implement the CII
BS Waiver, the DDC met withpolicymakers to clarify certification and licensing barriers to contracting with
professionals in the field. As a result, legislation was introduced to address
workforce issues.
The DDC assisted the House Human Services Committee with obtainingtestimony on best practices for diagnosing and treatment for individuals with
Autism and their families. To educate policymakers, the Council assembled a
panel of Medical professionals, parents, providers, and individuals with
Autism.
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South Carolina
Training initiatives
Key Autism Indicators and Training
Capacity building based on 8 key autism indicators that reflect quality programming & bestpractices
Autism Training Collaborative
staff training across the life span developing a roadmap, developing resources, etc.
Capacity Building
All are Welcome
Education curriculum for faith communities to be a welcoming & supportive for individualswith autism and other developmental disabilities
Life Lessons
Teaching age appropriate social skill development for youth with Autism to prepare themfor successful employment
Research
Emergence & Stability of Autism in High Risk Infants
Responsive Robot-Assisted Therapy for Children with Autism
Child Health Services: Evaluating pediatric health disparities
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Councils Work on Autism
Nebraska
Training
Designed to educate parents on how to reinforce social skills
taught to their children/youth with autismCapacity Building
Developed curriculum and implemented training to respite care
providers.
South Dakota
Sponsors statewide Autism conference
Recreation project for youth with autism to learn about sports in a
non-competitive environment
Developing a post secondary program with local University
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Councils Work on Autism
Massachusetts
Provide information and referral resources about the Autism Insurance lawthat took effect on January 1, 2011 and will require private insurance coverageby July 1, 2011.
Established on-line autism insurance resources in partnership with New
England Index. Support an Autism information specialist position at the MA Network of
Information Providers.
Support two Autism advocacy organizations to participate in our cross-disability advocacy coalition.
Colorado
The Council funds a statewide self-advocacy organization, Watch Our Words(WOW) that is led by people with developmental disabilities, many of whomare on the autism spectrum. They have developed a curriculum andimplement it when they do trainings around the state on facilitatedcommunication, and aspects of living with disability in school, work andcommunity.
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Councils Work on Autism
Minnesota
Developed extensive resource center for employment of people on
the Autism Spectrum and technology
http://www.mncdd.org/asd-employment/index.html
Emergency planning and individuals with ASD
Iowa
Provides public policy staff support to statewide Autism organizationto help advocates prepare their agenda, develop messages and
deliver messages to decision makers.
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Councils Work on Autism
Many Councils serve on State level Commissions on Autism;
Councils support and enhance the work of these State level
Commissions (Oregon, Maryland,Iowa, Washington State,
New York, New Hampshire, Massachusetts) are a few Councils
who were instrumental in ensuring Autism Commissions were
formed, active and these Councils continue to foster
relationships designed to improve services and supports forindividuals with autism and their families
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Combating Autism Act
Combating Autism Act (CAA) coordinates and expands
research at National
Institutes of Health
increasing awareness and surveillance by Centers for
Disease Control
interdisciplinary training of health professionals to identify
and support children with autism spectrum disorders and
their families.
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Combating Autism Act
NIH Report to Congress on CAA shows enormous, positive impact in that
CAA enabled:
training of many medical professionals to better diagnose and treat autism
spectrum disorders (ASD) through expansion ofLEND LeadershipEducation in Neuro-developmental & Related Disabilities
outreach to many families, childcare providers and others about how to
address ASD by funding CDCs Learn the Signs, Act Early campaign.
work of the reconstituted Interagency Autism Coordinating Committee
(IACCD) and individual Federal agencies that have served well to identify
promising ASD research areas, as well as to pinpoint both best practices
and gaps in ASD research and support including development of new
diagnostic tools and measures of the efficacy and cost-effectiveness of
evidence-based services for people with ASD.
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Combating Autism Act
Report emphasizes that Although research on ASD has
expanded over the past decade, there remains an urgent need
for continuing research and development of services and
supports programs to help families facing this challenge. Report released January 2011 by Congressmen Mike Doyle (D-
PA) and Chris Smith (R-NJ), bi-partisan Co-Chairs of
Congressional Autism Caucus.
Report is available on Congressman Doyles website at
http://doyle.house.gov/legislation/2011%2001%2006%20HHS%
20report%20on%20RTC%20on%20Activities%20Related%20to%
20ASD.pdf
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Combating Autism Act
Remarkable progress of CAA in just four years.
Essential to continue the work
identifying the causes of ASD and the best practices for
diagnosing and dealing with AS
bring emerging new information and practices to the people
who need them most -- medical professionals, educators and
people with ASD and their families.
CAA will expire in September 2011 unless Congress reauthorizesit. NACDD is working with our partners at AUCD and NDRN,
including April 4th Hill Drop Day to provide information to
Congress.
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NACDD
Thank You!
Please contact us:National Association of Councils on Developmental Disabilities
1660 L Street, NW, Suite 700
Washington, DC 20036
Phone: 202.506.5813 Fax: 202.506.5846
www.nacdd.org
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