January 27, 2013 —A week ago, a piece of legislation prepared by AANE and the Disability Law Center was filed by Rep. Garrett Bradley and Senator Jennifer Flanagan. This fact sheet explains the bill, its goals and its context. Please use this to advocate for the bill with legislators, disability organizations and all our allies in MA. We are urgently seeking co-sponsors in the State House and Senate: before February 1, please ask your legislators to co-sponsor it.
An Act to Permit the Department of Developmental Services to Provide Services to Adults with Developmental Disabilities
House docket number HD02945
Senate Docket number SD00777
Lead sponsors Rep. Garrett Bradley and Senator Jennifer Flanagan, members of the Autism Commission.
This bill addresses one of the two highest priority recommendations from the Autism Commission.
Goal This bill enhances the statutes that control eligibility for services by the Department of Developmental Services (DDS). In January 2013, the Governor signed a new law that revised the definition of intellectual disability. That law did not address the needs of people whose functional challenges are related to a developmental disability. Some people with significant developmental disabilities, including individuals with autism spectrum diagnoses, have significant functional limitations that dramatically affect their ability to live and work independently. Currently, many of these individuals live at home with aging caregivers and are denied services from both DDS and DMH. This bill expands DDS eligibility (subject to appropriation) to all people with developmental disabilities who meet certain conditions for “substantial functional limitations”. The wording is taken from the relevant federal statute, known as the DD Act. More than 40 states provide eligibility for adult services using a definition of developmental disability.
Background The Massachusetts Special Commission Relative to Autism, chaired by former Rep. Barbara L’Italien, has been meeting since December 2010. The Commission was charged with identifying gaps in services for autistic people and facilitating their participation in society to the fullest extent of their ability and desire.
AANE role The Autism Commission includes two members of the Board of Directors of the Asperger’s Association of New England (AANE), and its Executive Director. Based on the Commission’s draft recommendations (soon to be published), the AANE has identified two legislative priorities and established an Advocacy Committee to promote them.
Our constituency This bill is supported by a large statewide constituency. It has the endorsement of the Disability Law Center (whose attorneys drafted it in consultation with AANE), the Arc of Massachusetts and the Cross Disability Advocacy Coalition, and is likely to be supported by other statewide disability organizations. These organizations have large, active memberships (20k in the case of AANE).
AANE Board of Directors;
Chair, AANE Advocacy Committee
January 27, 2013 — To all our members in Massachusetts:
We need YOU to contact your state representative and senator ASAP! We have an exciting, unprecedented opportunity to pass legislation that would ensure services from DDS and DMH to members of our community who have long been denied them. Please be sure to join this effort and support the two bills we’ve prepared.
All the info is provided below. Click on the docket numbers for fact sheets on each bill. Your legislators need to hear from YOU before the end of this month. Please do it now, so you don’t forget. (Questions? email@example.com)
(1) If you are not sure who represents you in the Massachusetts State House and Senate, look up your address. Then scroll down the results to Current Elected Officials, including State Senate and State Representative. Click on their names to get their phone and email info.
(2) Send emails or make phone calls to BOTH your state senator and state representative requesting that they co-sponsor our two bills. Use the sample below for guidance, and personalize it with your story if you want to. Be sure to include the bill docket numbers, and your address.
If your representative is either Kay Khan or Garrett Bradley, or your senator is Jennifer Flanagan, they are the lead sponsors on these bills, so you don’t need to request their co-sponsorship. Instead, please thank them for their support.
(3) Important: please cc firstname.lastname@example.org on all emails so the Advocacy Committee can track contacts and fill in any gaps. If you make phone calls instead, it would help us to get an email from you saying you did so.
(4) Please forward this request to your friends, networks and allies and ask them to join our effort.
Dear Representative/Senator [name],
I’m your constituent and a member of the Asperger’s Association of New England (AANE), based in Watertown. [Add other relevant personal info.] I hope you will co-sponsor two bills that are very important to me. These bills address the two highest priorities of the MA Autism Commission and have been prepared by AANE.
These bills are supported by a large statewide constituency. AANE includes 20,000 people, the overwhelming majority in Massachusetts. The bills are endorsed by the Cross Disability Advocacy Coalition (CDAC) and Advocates For Autism of Massachusetts (AFAM), the statewide coalition of autism organizations, which again have very large memberships.
Bill HD01658 (also SD00781) would ensure full and equal access to services from the Department of Mental Health for individuals with autism spectrum disorders and related conditions who meet the eligibility criteria for DMH services. It has been filed by Representative Kay Khan, House Chair of the Joint Committee for Children, Families and Disabilities, and Senator Jennifer Flanagan, member of the Autism Commission. People with autism and co-occurring mental health conditions are currently denied potentially transformative services.
Bill HD02945 (also SD00777) would permit the Department of Developmental Services to provide services to adults with developmental disabilities. It has been filed by Rep. Garrett Bradley and Senator Jennifer Flanagan, members of the Autism Commission. AANE worked with attorneys at the Disability Law Center to draft this bill. It would expand DDS eligibility (subject to appropriation) to people with developmental disabilities who meet certain conditions for “substantial functional limitations”. The wording is taken from the relevant federal statute, known as the DD Act, used by more than 40 states to determine eligibility for services. (The recent law HD045252 revised the intellectual disability requirement but did not address the needs of people whose functional challenges are related to a developmental disability.)
If you have already co-sponsored these bills, thank you. You are supporting people who are currently denied essential services from either DDS or DMH.
Phone and/or email
Do you qualify for both MassHealth and Medicare? Are you age 21 to 64? If so, this meeting is important to you.
January 17, 2013 at 5:30p.m. – 7p.m.
The Center of Hope Foundation/The Arc, 100 Foster Street, Southbridge, MA 01550
February 7, 2013 at 5:30p.m. – 7p.m.
The Arc of South Norfolk, 789 Clapboardtree Street, Westwood, MA 02090
Significant changes will take place in 2013 for those who qualify for both Medicaid (MassHealth) and Medicare. It is important for you to understand these changes and be informed about how this new system will affect you and your family member. One of the changes includes how (disability) community supports and services will be delivered. There will also be changes health care delivery.
The Arc is hosting meetings to discuss these changes with you and to provide an opportunity for you to ask questions. Staff members at The Arc of Massachusetts will be the presenters. You should attend if you have both MassHealth and Medicare and are between the ages 21 – 64 years. Family members and community support professionals supporting individuals with both insurances are also encouraged to attend.
The Arc of Massachusetts might, in addition to the meetings, hold a webinar for those unable to make a meeting. Please RSVP to Beth Rutledge and state which meeting date you will join. Also email Beth if would like to request a webinar on this topic.
In the event of inclement weather, check The Arc of Massachusetts website (www.arcmass.org) or call (781) 891-6270 for cancellation notice. The Center of Hope snow date is January 23, 2013 at 5:30p.m. – 7p.m. The Arc of South Norfolk snow date is February 11, 2013 at 5:30p.m. – 7p.m.
Co-sponsors of this event: The Arc of Opportunity in Central Mass ● Berkshire County Arc ● Brocton Area Arc ● The Arc of Cape Cod ● Charles River Center ● East Middlesex Arc ● The Arc United ● The Greater Arc of Haverhill-Newburyport ● The Arc of Greater Lawrence ● Minute Man Arc for Human Services ● Northeast Arc ● The Arc of Bristol County ● The Arc of Greater Plymouth ● The Arc of the South Shore ● Greater Waltham Arc ● Family Lives/Shriver ● Nonotuck Resource Associates ● Vinfen
By Dan Burke
January 11, 2013 — Anyone who reads Atypical: Life with Asperger’s in 20 1/3 Chapters, by Jesse A. Saperstein (Perigee Trade), will enjoy it whether they are on the autism spectrum or not. However, it is a must read for young adults who have autism. While Temple Grandin, John Elder Robinson and other adults have written fascinating memoirs about their lives on the autism spectrum, younger readers, hearing how Grandin loved watching Howdy Doody as a child, might feel an inevitable generation gap. And while Grandin and Robinson have achieved much in their lifetimes despite their perceived handicaps, you rarely get a perspective from a young adult who is still discovering himself and trying to find his way in the world.
Jesse A. Saperstein fits into that latter category. He struggles to maintain a stable career despite his condition and the current economic climate. While it is unclear whether or not he wrote Atypical to reach out to those his age that may be in the same boat, his memoir will be a stimulating revelation to those who currently are.
In Atypical, Saperstein provides a refreshing outlook on his life, adventures, and how his Asperger’s diagnosis has affected him every step of the way. Being born in the early 1980’s, he had the advantage of having been diagnosed with Asperger’s Syndrome early in his life (at the age of 12). Other authors, like Robinson and Tim Page, went through most of their young adult lives wondering why they were considered strange. Saperstein appears to have no problem accepting the fact that he is not typical.
His openness to his condition, and the quirks that come along with it, contributes positively to his writing, because he is so honest. Many writers probably would not admit to compulsive habits, but Saperstein accounts times when he flaps his hands with excitement. Such revelations will probably give assurance to those people who engage in similar behaviors without knowing why.
In fact, many of Saperstein’s quirks make his unique and fun personality more apparent. Readers will probably enjoy reading about his love for Halloween, his large DVD collection, his hatred of showering, and the humor he finds in farting loudly in public. Being near him many be a different story, but it sure is fun to read.
Like his fellow millennials, Saperstein recounts many pop culture tidbits that have affected his view of the world. Most of the time, more than providing amusing fodder, he ties such entertaining trivialities into relevant information about being on the spectrum. For instance, who would have thought that Comic Book Guy from The Simpsons probably has Asperger’s? When Saperstein annotates how the character exhibits such behaviors to justify that diagnosis, it all makes sense.
Saperstein also delves into other subjects with which today’s teenagers and young adults grapple — some of them, like cyberbullying, unfamiliar to older adults. He recounts his personal experiences and gives helpful advice to those young readers who continue to deal with that issue.
However, being relatable is one thing. Being relatable and readable can be harder to pull off. Saperstein succeeds in both areas, and writes with an irreverent sense of humor that makes his book very hard to put down. This will not feel like required reading. Grandin suggested in her quote for the book that Saperstein could easily write a novel. If he can write fiction as intriguingly as he has already written about fact, then you should read that next book too, as soon as it comes out.