Supporting Families & Caregivers
Across A Lifespan
On Friday, October 26, The Arc of Massachusetts, in conjunction with The Dana Home Foundation, offered a Fall Forum on “Medical Issues Related to Aging with Disabilities.” In the words of one of the attendees, the three doctors who took part in the panel comprised a “dream team.”
Dr. Ann Neumeyer, a neurologist and the Medical Director at the Lurie Center for Autism, began the Forum with a presentation entitled “Care of Adults with Autism and/or Intellectual Disabilities.” Next, Dr. Stephanie Santoro, Director of Quality Improvement Research for MGH’s Down Syndrome Program and a physician for both pediatric and adult patients at MGH, delivered a presentation on “Health Care of Adults with Down Syndrome.”
Both Dr. Neumeyer and Dr. Santoro laid out specific health issues that frequently occur in aging patients with autism and Down syndrome, respectively, and they talked about the importance of sleep, of understanding that certain behaviors or moods are often indicators of underlying health concerns or complaints, and of caregivers’ and physicians’ need to act as detectives, particularly when caring for patients with limited communication abilities.
Dr. Julie Moran, a geriatrician and consultant physician for the Department of Developmental Services and a clinical instructor of medicine at Harvard Medical School, rounded out the Forum with her presentation on “Aging and Intellectual and Developmental Disabilities,” emphasizing that “Change is the common theme of all geriatric assessment.” Specifically, Dr. Moran stressed the need for individuals, caregivers, and other members of the individual’s team to comb through memories and medical records to establish a historic baseline with regard to the individual’s basic functioning, skills, memory, behavior, language abilities, personality, and moods, for it is only when you compare Point A with Point B that an accurate geriatric assessment can be made. She also pointed out that arriving at an assessment is only the first step; it is then necessary to address the question “Now what?” to determine how to change the management of the individual’s care to properly prepare for the future.
This forum led by the dream team of medical expertise regarding aging with disabilities took place at the Lexington Community Center and was made possible by a generous grant from the Lexington Dana Home Foundation. Approximately 50 people enjoyed the Fall Forum in person. It was also enjoyed by a larger audience, as it was live-streamed on The Arc of Massachusetts Facebook page. It was also professionally filmed by LexMedia and will be available for viewing on The Arc of Massachusetts website in the coming days.
Written by Julie Heffernan
Advocacy Alliance Coordinator
The Supporting Families Campaign held its third annual Advocacy Day at the State House, on Tuesday, February 13. The day began with a crowd of over 50 families meeting to review the day’s agenda including the budget priorities of Supporting Families. Maura Sullivan, Director of Government Affairs for The Arc of Massachusetts, explained the importance of the DDS Family Support line items, Turning 22, and Autism Omnibus. Families were given materials with the line item budget “asks” and narratives, plus family stories to help illuminate the gaps in funding.
Next, attendees heard from Representative Linda Dean Campbell about the importance of family advocacy and her own commitment to the campaign. Last, the group heard from Claire Manning, the Director of Advocacy and Mobilization, from The Arc of the United States. From there, families disseminated throughout the building to visit their legislators and share their stories – the goal of the day!
Special thanks to Senator Barbara L’Italien, Representative, and Kerry Mahoney and the Supporting Families Coalition for making the day such a great one! We are truly grateful to all the families who took the time to come and share their stories with legislators. Their efforts make the most impact on our lawmakers, as their stories make the budget line items real and meaningful.
Stay tuned as the budget process unfolds. For more information on the Supporting Families Campaign, contact Maura or Kerry at Sullivan@arcmass.org or Mahoney@arcmass.org.