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2019 AUTISM ADVOCACY DAY AT THE STATE HOUSE

EDUCATE! CELEBRATE! EMPOWER!
THURSDAY, APRIL 11, 2019
GREAT HALL- THE STATE HOUSE
BOSTON, MASSACHUSETTS

9:30 Registration

Refreshments will be served

10:15 Program

Emceed by Heather Hegedus (Boston 25 News Anchor) and Gyasi Burks-Abbott (Self Advocate)

Guest Speakers

Michael Borr, Chairman, AFAM
Carolyn Kain, Executive Director, Massachusetts Autism Commission
Cheryl Chan, Parent
Representative Kay Khan
Alfred Gaye, Caregiver
Maura Sullivan, The Arc of MA

11:30 Visit with Legislators

Vision

Bringing together people with Autism Spectrum Disorders, their families, their friends, their advocates and those who provide support, Advocates for Autism of Massachusetts (AFAM) speaks with one voice to build the capacity of our communities to welcome, fully include and support people with ASD.

Mission

Advocates for Autism of Massachusetts will strive to ensure the human and civil rights of individuals of all ages across the entire Autism Spectrum and to promote the availability of essential supports so that they may live fully and enjoy the same opportunities as other citizens of the Commonwealth. We will educate individuals with ASD, their families and other AFAM members/supporters to be effective, vigorous agents of change.

Guiding Principles

In our work we will:

ensure respect and dignity for individuals with ASD and their families by promoting positive views and valued roles for children and adults with ASD;

seek to identify and eliminate the barriers facing people with ASD in Massachusetts;

work in partnership with policy makers, educators, practitioners, disability groups and other advocates to build consensus and momentum for improving and expanding supports and resources for people with ASD;

seek ways to empower people with ASD and their families to direct the course of their lives with needed, flexible supports and take full advantage of available resources;

recognize that each person with ASD is unique and that the most effective supports are those that are individualized;

work to include individuals with ASD in all aspects of AFAM’s efforts.

What is Autism

Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills and communication and the existence of repetitive behaviors or restricted interests. The learning and problem-solving abilities of people with ASD can range from gifted to severely challenged. *

According to the Centers for Disease Control, autism is diagnosed in an estimated 1 in 59 children. Males are four times more likely than females to be identified with autism. Autism occurs in all racial, ethnic and socio-economic groups.

Each person with autism can have unique strengths and challenges. Autism often is accompanied by medical issues such as gastrointestinal disorders, seizures and sleep disturbances. Many people with autism also have sensory issues. These can include aversions to certain sights, sounds and other sensations.

Autism’s hallmark signs usually appear by age 2 to 3. Often, it can be diagnosed as early as 18 months. Some associated developmental delays can appear even earlier.

* In 2013, the American Psychiatric Association merged four distinct autism diagnoses into one umbrella diagnosis of autism spectrum disorder (ASD). They included autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.

Bringing together people with Autism Spectrum Disorders, their families, their friends, their advocates and those who provide support,

Advocates for Autism of Massachusetts (AFAM) speaks with one voice to build the capacity of our communities to welcome, fully include and support people with ASD

In the 1990’s there were virtually no supports for individuals with Autism Spectrum Disorders (ASD) or their families in Massachusetts. Families mobilized, and with financial support from the Department of Developmental Services and private donors, Autism Support Centers across the Commonwealth began to grow. Seven regional Autism Support Centers currently support thousands of families and professionals each year. The Centers provide services such as: support groups, information, referrals, family activities and events, educational and therapeutic programs for people with autism and their siblings, and community partnerships to area businesses.

Eventually, the growing demand for support and services made clear the need for full time representation to give our families a voice on Beacon Hill. To provide this voice, in 2004 the Autism Support Centers, in conjunction with the Arc of Massachusetts, and with generous financial support from the Flutie Foundation, formed a new organization, Advocates for Autism of Massachusetts or AFAM.

Since 2004, AFAM, a grassroots organization of self-advocates, families and concerned citizens, has served as the primary advocacy vehicle protecting the rights and needs of individuals with ASD and their families. Each year AFAM has organized and sponsored an Autism Advocacy Day at the Massachusetts State House, which has been an important means for keeping the needs of people with autism in the minds and hearts of our elected officials. AFAM also advocates year round on legislation and budgetary proposals affecting people with ASD and their families.

YOU have an important voice and a stake in AFAM’s work! We encourage you to get involved by signing up to receive AFAM’s quarterly newsletter and periodic Action Alerts. Individuals like you are vital to AFAM’s success since legislators prefer to hear directly from their constituents. It’s personal stories from individuals and families that have the most lasting impact and can effectuate positive change! Email AFAMoffice@yahoo.com if you are interested in volunteering your time and talents. AFAM also welcomes financial donations to support our mission. Donations should be tax deductible. AFAM looks forward to your involvement to maintain the vibrancy of our organization. Together, we can make a difference for people with autism at the local, state and national levels.

Since its founding in 2004, AFAM has vigorously advocated for – and achieved – a number of major successes.

• Leading role in advocating for the landmark Omnibus Autism Bill, which passed both houses of the legislature unanimously and was signed by the Governor in August 2014
• Passage of An Act Relative to Insurance Coverage for Autism (ARICA), 2011
• Establishment of the Autism Division within the Department of Developmental Services
• Passage of the Augmentative and Alternative Communications Bill
• Passage of the Anti-Bullying Bill
• Publication of a study, Awash in Autism: Why We must Begin to Address the Critical Need for Services for Adults with Autism in Massachusetts
• Establishment of the Autism Commission, whose 2014 report set forth a broad range of priorities
• Sponsorship of the annual Autism Advocacy Day at the State House each April
• Conducted legislative briefings to inform elected officials of the needs of people on the autism spectrum
• Provided regular oral and written testimony at public hearings on pending legislation affecting people with ASD and their families
• Collaborated with other groups in the disability community to promote legislative and budgetary priorities we have in common
• Conducted MassHealth forums to provide families with updated information
• Conducted surveys of autism families about unmet needs
• Sponsored a day-long Housing Conference in 2015 to provide stakeholders an opportunity to share points of view and to brainstorm various housing options that may be appropriate for people living on the autism spectrum
• Collaborated to develop the “Autism Housing Think Tank”

Legislative Priorities

AFAM’s Primary Policy Priorities 2019-2020

Workforce
HD 1130 An Act relative to meeting the human services workforce demand
Representative Denise Garlick
Senator Barry Finegold

Nicky’s Law
HD 3783 An Act An act to protect persons with intellectual or developmental disability from abuse
Representative Linda Campbell
SD 1836 An Act An act to protect persons with intellectual or developmental disability from abuse
Senator Mike Moore

Operation House Call
HD 3710 An Act supporting individuals with intellectual and developmental disabilities
Representative Carolyn Dykema
SD 752 An Act supporting individuals with intellectual and developmental disabilities
Senator Jason Lewis

Autism Police Training
HD 3434 An Act relative to criminal justice training regarding autistic persons
Representative Paul Tucker
SD 1285 An Act relative to criminal justice training regarding autistic persons
Senator Mike Moore

Accessory Housing
HD 593 An Act relative to accessory dwelling units
Representative Christine Barber
SD 1914 An act relative to accessory dwelling units
Senator Bruce Tarr

MAICEI
HD 1026 An Act creating higher education opportunities for students with intellectual disabilities, autism, and other developmental disabilities who have exited special education
Representative Sean Garballey
SD 1259 An Act creating higher education opportunities for students with intellectual disabilities, autism, and other developmental disabilities who have exited special education
Senator Joan Lovely & Michael Rodriques

For Details as well as our Budget Requests, Continue Reading Here

Your Donations Matter

We extend our sincere appreciation to all those who provided financial support to AFAM. Your contributions make our continued advocacy efforts possible.

Your donation will help provide an ongoing presence on Beacon Hill, which is essential for meaingful advocacy.

Donate Here

We gratefully acknowledge the support of the following Individuals and organizations who helped to fund our work this year.

Donor Honor Roll

Take Action on the Autism Cares Act of 2019

TAKE ACTION HERE

Our Member Organizations

AFAM’s member organizations come from across the Commonwealth, representing the diversity of the autism spectrum.

HMEA’s Autism Resource Central

Sue Loring, Director
Herb Cabral, AFAM Rep

712 Plantation Street
Worcester, MA 01605
autism@hmea.org
(508) 835-4278

Autism Connections

Karen Serra , Director
Nancy Farnsworth, AFAM Rep

116 Pleasant St., Ste. 366
Easthampton, MA 01027 autismconnections@pathlightgroup.org
(413) 529-2428

TILL’s Autism Support Center

Dafna Krouk-Gordon, President
Martine Pierre , AFAM Rep

20 Eastbrook Road, Suite 201
Dedham, MA 02026-2056
dafna@tillinc.org
(781) 302-4600

Arc of Massachusetts

Leo Sarkissian, Exec Director
Maura Sullivan, AFAM Rep

217 South Street
Waltham, MA 02453
arcmass@arcmass.org
(781) 891-6270

Mass Advocates for Children

Julia Landau, Autism Center Director
Ann Guay, AFAM Rep

25 Kingston Street, 2nd Floor
Boston, MA 02111
(617) 357-8431

Autism Speaks New England Chapter

Jill Precopio, Executive Director
Judith Ursitti, AFAM Rep

85 Devonshire St, 9th Floor
Boston, MA 02109
judith.ursitti@autismspeaks.org
(617) 726-1515

Asperger/Autism Network

Dania Jekel, Executive Director
Jeanne Hoerter, AFAM Rep

51 Water Street, Suite 206
Watertown, MA 02472
info@aane.org
(617) 393-3824

Family Autism Center, South Norfolk Arc

Brian Clark, Director
Sue Linehan, AFAM Rep

789 Clapboardtree Street
Westwood, MA 02090
BClark@arcsouthnorfolk.org
(781) 762-4001

Arc of Bristol County

Michael Andrade, President & CEO
Donna Brown, AFAM Rep

141 Park Street
Attleboro, MA 02703
(508) 226-1445

Autism Support Center

Gloria Castillo and Susan Gilroy, Co-Directors
Kathleen Moline, AFAM Rep

6 Southside Road
Danvers, MA 01923
gcastillo@ne-arc.org or sgilroy@ne-arc.org
(978) 777-9135

Autism Alliance of Metrowest

Allison Daigle and Pam McKillop, Co-Directors
Chris Hubbard, AFAM Rep

1881 Worcester Road, Suite 100A
Framingham, MA 01701
AutismAlliance@Advocates.org
(508) 652-9900

Doug Flutie, Jr. Foundation for Autism

Nick Savarese, Exec Director, AFAM Rep

PO Box 2157
Framingham, MA 01703
nsavarese@flutiefoundation.org

Charles River Center

Anne-Marie Bajwa, President & CEO
Ellen Kilicarslan, AFAM Rep

59 E. Militia Heights
Needham, MA 02492

1 in 59

children are diagnosed with ASD

50%

have never had a paying job at 25

56%

have an intellectual disability

Say Hello

HAVE A QUESTION? WANT TO VOLUNTEER? WANT TO SIGN UP FOR OUR NEWSLETTER?
WE WOULD LOVE TO HEAR FROM YOU!

What We are Up To

In addition to our legislative priorities, AFAM is working constantly to ensure people with autism living in the Commonwealth are able to live their best lives.

Stay up to date by reading our latest newsletter or reviewing the activity of the Massachusetts Autism Commission, on which we are heavily involved.

Latest Newsletter

Massachusetts Autism Commission

Upcoming Events

ADVOCATES FOR AUTISM OF MASSACHUSETTS