WHAT’S OUR MISSION?
• Most children with autism become adults with autism, and continue to need the same types of supports that they needed during their school years.
• Services for adults with autism exist, but unlike school services, they are not mandated, and there are fewer of them. Combined with shrinking government budgets, the challenges are daunting.
• In light of the dramatic growth in the numbers of children with ASDs and the aging of these children into adulthood, we are facing a crisis.
AFAM’s Adult Services Committee was formed in 2008 to address the problem. The Committee’s charge:
Encourage the Commonwealth of Massachusetts to adopt a proactive strategy for developing community, residential and employment supports geared for adults with ASDs – those who are adults currently in need of such services and the hundreds of children with ASDs who will soon be reaching adulthood.
WHO ARE WE?
• The Committee consists of volunteers who are members of the AFAM Executive Committee and other parents and professionals from across the state who are advocates for and providers of services to people with ASDs.
Mission of the AFAM Task Forces on Adult Services and Supports
AFAM has established three task forces to advocate for housing, employment, and day hab and community-based day services and supports.
Mission of the AFAM Housing Task Force
The AFAM Housing Task Force will advocate to increase available and affordable housing and housing models for people with autism in Massachusetts. Thousands of individuals in this state with developmental disabilities are in desperate need of affordable supported housing. State-funded housing is relatively rare and very expensive. We need approaches that will allow individuals and their families to leverage their own resources, with government supports, to make it possible to create and staff housing at a lower cost to the state.
The goals of the AFAM Housing Task Force are to obtain:
An increased range of MassHealth support options;
“By-right” zoning for accessory apartments for family members with disabilities;
Low-cost loans to families to pay for the accessory apartments attached to their family home;
A broad menu of clearly identified settings in which DDS funds can be used; and
Increased funding for the state’s Alternative Housing Voucher Program.
Task Force Chair Karen Mariscal continued such advocacy for “by-right” zoning for accessory apartments for family members with disabilities in a recent interview with her hometown newspaper, The Wellesley Townsman
The members of AFAM Housing Task Force are:
Catherine Boyle, parent, Autism Housing Pathways
Karen B. Mariscal, Esq. Margolis & Bloom LLP, Task Force Chair
Alexandra Nadworny, sibling, Shepherd Financial Partners
David Rosenzweig, self-advocate
Catherine Sabatini, parent
Robin Slonim, parent
Judith Ursitti, parent, Autism Speaks
Mission of the AFAM Employment Task Force
The AFAM Employment Task Force will advocate increasing paid employment opportunities for people with autism in Massachusetts by providing for a range of job training, job development and employment opportunities.
The members of AFAM’s Employment Task Force are:
Brittany Collins, Doug Flutie, Jr. Foundation for Autism
Ellen Kilicarslan, MSW, Charles River Center, Task Force Chair
Jessica Flannery, sibling
Anke Kriske, parent
Michelle Labadini, parent
Heather Lomartire, BCBA, Vice President of Employment and Day Supports, Charles River Center
Eric Olson, parent
Setha Olson, parent
Daphne Romanoff, parent
David Rosenzweig, self-advocate
Mission of the AFAM Task Force on Day Hab and Community-Based Day Supports
The AFAM Task Force on Day Hab and Community-Based Day Supports will advocate for the improvement and expansion of long-term support services, including day habs, other state plan services, and community-based day programs. These services will enable adults with autism to further enjoy health and well-being across their lifespan.
The members of AFAM’s Task Force on Day Hab and Community-Based Day Supports are:
Lisa Brown, parent
Susan L. Connors, M.D., parent, UMass Medical
Maureen Costello-Shea, Chief Residential Officer, The Guild for Human Services
Susan Fennelly, parent
Rita Gardner, M.P.H., BCBA, Executive Director, Melmark New England
Carolyn Ferris Gombosi, parent
Christine Hubbard, parent, Task Force Chair
Julie O’Brien, M.Ed., LMHC, Lurie Family Autism Center, MGH/LADDERS
WHAT CAN YOU DO TO HELP?
• We are currently working on developing a database of “stories” -- brief accounts from families and individuals on the spectrum transitioning to life after the school years. We want to hear about your concerns –what has worked or has not, what supports are available or are not, in the realms of higher education, housing, employment, day programs and day habs, health care, transportation, and community life and recreation.
• If you share your stories and contact information with us, we will reach back out to you when opportunities arise to submit testimony in person or in writing to the Legislature in support of efforts to improve services in Massachusetts. Having such a database to draw on will allow us to communicate your concerns effectively at key times throughout the legislative and budget cycles. Please be aware that we will not use your name or other identifying information without obtaining your permission.
• To submit your stories to us please email us at AFAMoffice@yahoo.com and note “Adult Services Committee” in the subject line or write us at Advocates for Autism of Massachusetts, 217 South Street, Waltham, MA 02453. We hope you will join us in continuing to communicate what life is like for adults with autism in Massachusetts and their families as we build on the work of the Autism Commission.
In January 2015, the AFAM Adult Services Committee held a lunchtime briefing for legislators and their staff at the State House on challenges in delivering healthcare to adults on the autism spectrum by Dr. Margaret Bauman. Dr. Bauman, a leader in the study, diagnosis and clinical treatment of autism, presented a very informative power point entitled “Navigating the Bridge to the Future: Accessing Medical Care,” which was prepared with Dr. Susan Connors of MGH Lurie.
Dr. Bauman is a child neurologist who specializes in the evaluation and treatment of autism and developmental disorders in children, adolescents, and adults, including learning and developmental disabilities, seizures, cerebral palsy, and neurogenetic disorders. She is currently an Associate Professor of Anatomy and Laboratory Medicine in the Department of Anatomy and Neurobiology at Boston University School of Medicine and serves on the medical staff at the Integrated Center for Child Development in Newton, Massachusetts, as the Medical Director of the Children’s Services Center at the Casa Colina Centers for Rehabilitation in Pomona, California and Medical Director of 3L Place, a new program for young adults in Somerville, Massachusetts. Dr. Bauman was the Founding Director of the Lurie Center (formally called LADDERS).
Click here to view and share a copy of Dr. Bauman’s and Dr. Connor’s power point: “Navigating the Bridge to the Future: Accessing Medical Care.” We would like to thank both Drs. Bauman and Connors for their willingness to share their knowledge and insights and their dedicated clinical care for people on the autism spectrum.
• Several years ago the Committee, along with the Lurie Institute for Disability Policy at the Heller School of Brandeis University, recommended that the Commonwealth establish a task force to begin to tackle the challenge of meeting the needs of the ever-increasing number of adults with autism in Massachusetts. (Read our 2009 report Awash in Autism.)
• Partly in response to the Committee’s advocacy, Governor Patrick established a Special Commission Relative to Autism in 2010. In March 2013, that commission published the Massachusetts Autism Commission Report, which established 13 Autism Commission priorities. (Read the final Autism Commission Report.)