ADVOCATES FOR AUTISM OF MASSACHUSETTS

Join us for Autism Advocacy Day on April 9, 2024

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 36 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”
FIFTEEN YEARS OF AFAM

Thank you to all who attended this unforgettable celebration

AFAM’s advocacy strength is due to you — our community — ensuring everyone’s voice is heard. Learn more about our award recipients and check out our new video for a poignant reminder of why AFAM does the work that it does.

Awardees and Event Media Here

Legislative Priorities

AFAM’s FY24 Legislative Priorities

March 2023 marks the start of the 36th month since the announcement of the state of emergency. At that time, thousands of persons with disabilities lost access to day programs or related services. Many of those have not been able to return to day services. Over 3,000 have turned 22 years of age, with the FY24 transition age class of graduates being the highest in history. Individuals with complex medical or behavioral conditions or otherwise requiring 1:1 assistance are the largest underserved or unserved group. These are individuals who need it the most, and the isolation, along with caregiver stress, is profound. -We ask that the legislature increase the Chapter 257 reserve to ensure that staff compensation is consistent with the 75th percentile of similar occupations listed in the Mass. Bureau of Labor Statistics. -Maintain $200 Million investment in MassHealth for day programs (Day Habilitation/Day Health) -Increase DDS Employment/Day by $5.6 Mil of A rate funding to serve 450 adults who need 1:1 services and language. Continue Reading Here

Adult Services Committee

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Children’s Services Committee

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Insurance and Data Committee

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Government Affairs Committee

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Advisory Council

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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

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

Pathlight’s 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

Julie  Hart, AFAM Rep

88 Broad Street, 5th Floor

Boston, MA 02110 julie.hart@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

Autism Support Center – Lifeworks

Brian Clark, Director

Sue Linehan, AFAM Rep

789 Clapboardtree Street Westwood, MA 02090 autismsupportcenter@lifeworksarc.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


Bridgewell

Chris Tuttle, President and CEO Judy Doherty, AFAM Rep

10 Dearborn Road Peabody, MA 01960 (781) 593-1088


Teamsters Local 25

Sean O’Brien, President Trish DiSilva, AFAM Rep

544 Main Street Boston, MA 02129 www.teamsterslocal25.com 617-242-6124


1 in 36

children are diagnosed with ASD

50%

have never had a paying job at 25

38%

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.