Overview:
Advocates for people with intellectual and developmental disabilities in Massachusetts gathered at the State House to advocate for legislation that would improve care for those with autism and intellectual and developmental disabilities. The proposed bill would require the Executive Office of Health and Human Services to create and maintain an integrated state plan to develop training and education, as well as standards of care by appropriate health care providers. The advocates also called for increased state funding for programs that support people with disabilities, as federal funding is being cut.
BOSTON — At a time when people with disabilities and advocates say protections are needed more than ever, Franklin County residents traveled to the State House to voice their support for legislation that would improve care for those with intellectual and developmental disabilities.
On March 11, The Arc of Massachusetts and the Massachusetts Developmental Disabilities Council held its annual legislative reception to celebrate the work being done by and on behalf of those with disabilities. The reception also advocated for legislation, including “An Act to Enhance Standards of Care for Those with Autism and Intellectual and Developmental Disabilities” (S.149) and “An Act Relative to Authorizing Supported Decision-Making Agreements for Certain Adults with Disabilities” (S.155).
If passed, S.149 would require the state Executive Office of Health and Human Services to create and maintain an integrated state plan to develop training and education, as well as standards of care by appropriate health care providers, related to the diagnosis, treatment and care of patients with intellectual and developmental disabilities.
Meanwhile, S.155 would require the Executive Office of Health and Human Services to develop training programs that would help individuals with disabilities make informed life choices through “supported decision-making,” while encouraging legal recognition and preventing unnecessary guardianships.
Event emcee and WROR radio host Lauren Beckham Falcone told attendees at the legislative reception that as federal funding is cut from programs that support people with disabilities, state support is needed more than ever.
“This year’s legislative reception theme is protecting our lives now more than ever. In this moment, this community is facing many challenges. We are experiencing changes from our federal government to longstanding systems of support and we are bracing for tighter state budgets,” Beckham Falcone said. “Now more than ever, our collective voices are critical to ensure that we are protecting the services and supports that matter most to us and to you. Now more than ever, we need to protect our rights and our lives.”
“This is crucial to preserve progress and benefits for people with disabilities to live in their communities,” said Cody Rooney, vice chair of the Massachusetts Developmental Disabilities Council and a University of Massachusetts Amherst student. “Many people here are in a situation with a central program that enables us to live independently. It gives us the quality of life that we enjoy.”
S.155 was reported favorably by the Senate Committee on Children, Families and Persons with Disabilities, and referred to the Committee on Ways and Means. S.149 was likewise reported favorably by the Senate Committee on Children, Families and Persons with Disabilities, and referred to the Committee on Health Care Financing.
Marion resident Sandra Heller, along with her son Craig Kinney, said legislation and funding for disability programs is necessary to ensure that people with disabilities have the resources they need.
“Living an ordinary life shouldn’t be a radical dream,” Heller said. “But many people with disabilities aren’t given the chance to do this. Instead, they are treated special. And sometimes special treatment can look a lot like segregation.”
Greenfield resident Joe Parzych traveled to Boston with other members of The United Arc’s local self-advocacy club. He said it was good to connect with other advocates and tell state officials that programs, including The Arc of Massachusetts, need more funding.
“The most crucial thing is we need more staff,” Parzych said. “We’ve been advocating nationwide for more money and more staff.”
During a phone interview on Monday, Fred Warren, CEO of The United Arc based in Turners Falls, said that one of the goals of his chapter, and The Arc as a whole, has been to advocate for the Legislature to increase funding for direct support professionals.
“We have been looking to get legislators to recognize that direct support professionals, DSPs, who are really the boots-on-the-ground support staff, it’s really not a high-paying job,” Warren said. “We’re looking to get increased funding to increase that pay rate to $22 to $23 an hour.”
According to an Indeed.com analysis of job postings over the past 36 months, the average pay rate for a direct support professional in Massachusetts is $19.26 per hour.
Warren said the annual legislative reception is a great way for Arc advocates and self-advocates to meet with legislators and tell them what they need. He added that the delegation is incredibly supportive, but they have a lot on their plate, and the advocacy is necessary to ensure no one gets forgotten.
“The biggest thing for our participants in Franklin County and throughout the commonwealth is making sure our legislators hear their voices,” Warren said. “It can be easy for some groups to be forgotten. … For our participants to join 600 other advocates to really make sure they’re not forgotten, it’s important.”
In addition to the self-advocacy done by The United Arc’s participants, Warren said The Arc also has advocate groups that are always looking for more volunteers to help speak up for people with disabilities and to assist people with disabilities in speaking up for themselves. To learn more or to sign up, visit theunitedarc.org.