June 15, 2017

Lions All ...
I came across the picture below recently which shows three leaders of The Arc in Massachusetts who fought heartily for some of the gains we have today. They remind me of the many advocates who helped build an effective network of supports such as: Joe Andrade, Jane Smith, Charlotte Aladjem, Dan Becker, Evelyne Milorin, Lucie Chansky, and others. 
Unlike George Plimpton's Paper Lion, these lions of our past brought the best out of us, our legislators, and our communities. They understood that progress is incremental and they were ready to defend when threats reared their ugly heads. Today, the American Health Care Act raises similar threats. It would:
  • increase barriers to quality health care for those with I/DD as states lose federal funds
  • reinstitute lifetime and annual caps in health insurance
  • remove mandatory coverage for essential health benefits so those with breaks of coverage will experience higher premiums and out of pocket payments
  • reduce the quality or quantity of the daily services that you or a family member receive
  • further burden family caregiving as they support over 60% of people with I/DD
(from L to R) Joe Buonomo, Leo,  Arthur Connelly,  Hal Demone
The Act's Medicaid cuts will cost Massachusetts $1 billion. Daily supports such as employment, residential, or personal care are all underwritten by Medicaid. Reach out to families and friends in other states -
share this video from The Arc with them. We are at a critical juncture and we need to be lions...all.   
Learn more here about AHCA consequences and on other pages at www.TheArc.org 
Leo V. Sarkissian
Executive Director    
Help The Arc of Massachusetts Meet the Challenge!
You can help The Arc complete the $1.6 million Home for the Future Capital Campaign. Only a couple of weeks remain to receive a 50% match of your gift. The Arc of Massachusetts must raise at least $200,000 in new gifts and commitments to get an additional gift of $100,000! The June 30 deadline is quickly approaching.
As Executive Director Leo Sarkissian has said, "The next several years are going to be very difficult for advancing disability policy and having the capacity to meet those challenges will be very important. Completing the campaign and being able to ramp up our work is of highest importance."  
If you have been thinking about giving to the campaign, please do so... quickly! Give to the Home for the Future Campaign today and make sure we meet the challenge. Please visit arcmass.org/campaign to learn more. You can also contact Katrin Aback, Director of Development at aback@arcmass.org or 781-891-6270 x105 to talk about giving opportunities.
A Busy Start to Summer for Operation House Call
Last week, OHC provided lectures at Yale School of Nursing, Boston University School of Medicine and UMass Graduate Nursing to nearly 100 medical and graduate nursing students. All of them will also have an experiential component to enhance their learning by visiting homes of OHC families across Massachusetts and Connecticut. 
Each class was fortunate to have co-teachers/self-advocates to provide additional insights into giving the best possible care for people with autism or other intellectual and developmental disabilities.
For more information on OHC, please contact Maura Sullivan, Program Director at  sullivan@arcmass.org
This webinar will focus on the use of Person Centered Planning in creating seamless transitions to adult services for students ages 14-22. Participants will look back at the historical perspectives of student planning, learn why a person centered approach makes sense and view methods of person centered planning. This workshop will provide examples of student outcomes and highlight best practices.
Presented By:
Pat Pakos, MS
Kerry Mahoney, The Arc of MA
  Financial assistance is available. Contact Kerry  Mahoney@arcmass.org 
Did you miss a webinar ?

 It is not too late! You can view the recorded webinar using The Arc's on demand feature.  To view click here and select "view session recordings."
WHAT'S TRENDINGwhatstrending
Learning about Self Directed Support Options
Statewide Information Forums for individuals and families in collaboration with the Department of Developmental Services
The Arc of Opportunity- June 15, 2017 from 6:00 to 8:00PM
161 Boulder Drive, Fitchburg
Contact Peter VanVoorhis at 978-343-6662 for more information
Greater Plymouth Arc-  June 15, 2017 from 6:00 to 8:00PM
52 Armstrong Road, Plymouth
Contact Cari Robbins to register or for more information at 508-732-9292 ext 124
EMArc, June 19, 2017 from 6:30 to 8:30PM
Lucius Beebe Memorial Library, Lower Level, 345 Main Street, Wakefield from 6:30 to 8:30PM
Contact Judy Santa Maria to register or for more information at 781-587-2314
Charles River Center and South Norfolk Arc, June 20, 2017 from 6:00 to 8:00PM
Charles River Center, 59 East Militia Heights Drive, Needham
For more information call Ellen Kilicarslan at 781-972-1048 or Dan Sullivan at 781-762-4001.
Self-Directed Services: Taking Control of Your Future

Facilitated by: Betsy Eaton-Irwin, Metro Region 
Self Directed Supports Manager 
Parent Guest Speakers: Rich Robison and Karla Murphy  
Individuals and families formulate a vision and realize that vision by customizing their own individualized supports. This presentation will provide an overview of Self-Directed services as well as traditional service options.  Stories and experiences illustrating the Self-Directed approach will be shared by Rich Robison, whose son participates in Agency with Choice services through the Charles River Center of Needham, and Karla Murphy, whose son is enrolled in the Participant-Directed Program. Betsy Irwin, DDS Metro Region Self-Directed Supports Manager will also present information and answer questions. Please come and hear about the innovative ways in which people have taken control of their services and determined the direction of their own lives. 
For more information about the presentation call Ellen Kilicarslan at 781-972-1048 or Dan Sullivan at 781-762-4001.
June 20 at 6:00 pm
Charles River Center
59 East Militia Heights Drive | Needham   
Boston Ballet's Adaptive Dance Registration
Boston Ballet School is offering an Adaptive Dance Program in the 2017-18 school year. Adaptive Dance classes will be held from
September 23 through May 19. Adaptive Dance offers creative movement instruction for individuals with disabilities ages 2  to adult. Classes are taught by expert Boston Ballet School faculty and supported by licensed physical therapists and professional musicians. Students engage and explore in a safe and supported environment as they develop movement, musicality, and personal growth. Adaptive Dance is offered at the Boston, Newton, and North Shore locations. Space is limited; register between June 28 and August 14. If you or someone you know would benefit from this program, please visit their website for more information:
Opportunity to Comment to the FDA
The Food and Drug Administration (FDA) has announced an opportunity for public comment on Patient-Focused Drug Development for autism. Patient-Focused Drug Development is part of FDA's performance commitments made as part of the fifth authorization of the Prescription Drug User Fee Act (PDUFA V).
The comments are intended to allow the FDA to obtain patient perspectives on the impact of autism on daily life as well as patient views on treatment approaches for autism.  In conjunction with this effort, a public meeting was held on May 4, 2017 at the FDA in Washington, D.C. 
Comments must be submitted either electronically or in writing by July 5, 2017.  See the SUPPLEMENTARY INFORMATION section of the FDA announcement document at Details on Commenting for details on how to file or mail a comment.  See comments filed to date at Comments

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The Arc of Massachusetts | 781-891-6270 |   arcmass.org