Supporting Families & Caregivers
Across A Lifespan
On Tuesday, January 22, we had a successful, standing room only event at the Grand Staircase at the State House with over 100 people in attendance. It was the third year for our Supporting Families event, which allows individuals with disabilities and their families an opportunity to be supported in their advocacy with legislators. We also invited new legislators to learn about the issues, as part of our biennial New Legislator Reception. Our champion speakers, Senator John Keenan and Representative Denise Garlick, were terrific.
Rep. Garlick has filed a bill concerning the workforce shortage crisis which both addresses our short-term goals and sets a foundation for a long-term solution to this top priority issue. We also had a negotiation meeting last week on the Abuse Registry (Nicky’s Law). Thank you to Rep. Campbell and Chair Khan for their continued leadership on the bill in the House.
Yesterday, the Governor’s budget was released with major budget hikes for seven-line items related to community services. Thank you to the Governor, Secretary Sudders, and Commissioner Ryder for recognizing our constituents and families. The budget now enters the legislature process where our concerns will compete with others for attention. March 6 is the date of our 41st Annual Legislative Reception, and it will serve as a focal point in the second stage of our 2019-2020 advocacy campaign.
In a very real sense, the race is on and we’ll need the participation of all who care about individuals with disabilities.
Leo V. Sarkissian
The base of the Grand Staircase at the State House was filled with nearly 100 families, new and returning legislators, professionals, and self-advocates on Tuesday morning. In attendance were Rep. Denise Garlick, Sen. John Keenan, Rep. Tram Nguyen, Rep. Donald Wong, Rep. Mindy Domb, Rep. Carole Fiola, Sen. Jo Comerford, Rep. Nika Elugardo, Rep. Maria Robinson, Rep. Michelle Ciccolo, Rep. Kathy LaNatra and Rep. Tommy Vitolo.
Representative Denise Garlick welcomed the crowd and set the tone for the families and new legislator, observing that, when it comes to support for individuals with intellectual and developmental disabilities, as well as their care providers, “We’ve come pretty far, but we need to go further. We need more.”
Later, Senator John Keenan remarked, “There’s numbers that we look at and then there’s stories that touch our hearts. And I can tell you that it’s the stories that touch our hearts that have the most impact.” Families are able to share their stories with The Arc of Massachusetts at any time through our Telling Your Story tool.
Leo Sarkissian spoke of the need to address the Workforce Shortage Crisis in order to provide quality care for citizens most in need. Caregiver Lynn Kelly shared her challenging experience in trying to recruit Personal Care Assistants for her adult son with physical and intellectual disabilities. Maura Sullivan spoke about the need to persist in the passing of Nicky’s Law and recognized the efforts of Cheryl Ryan Chan in advocating for the proposed abuse registry.
Family Caregiver needs were also stressed as a priority with a clear message that “Supporting families is a Smart Investment.”
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.