Real families need Real Lives law enforced

Susan Nadworny, chair of the MA Families Organizing for Change, published an op-ed in the Boston Globe in February 2023. Many of the issues she touched on remain with the new draft of regulations that were released in May 2024. You can read the whole piece here, and an excerpt is below.

“Families with children who have intellectual disabilities embrace what we need to do to assist them to become the best versions of themselves. That means teaching and encouraging them to be good citizens and as independent as possible. We want for our children what everyone else wants: the best possible life. The path is just a bit steeper and full of assorted obstacles. 

Unfortunately, state government is turning into one of those obstacles — especially for families that are just learning how to navigate the system…

Self-direction means piecing together a life that meets the needs of the person with disabilities and their family, and reflects their interests. Research shows that people have an overall better quality of life and are happier when they have more control and choice over their lives. According to the wording of the law, self-direction shall be available to any person, and their chosen planning team, who receives services from the department and agrees to implement a person-centered plan and purchase the necessary supports and goods; use the financial management service; and attend no more than once yearly orientation related to budgeting, planning, etc. 

That’s what the law says. But that’s not what’s happening. 

Why hasn’t the Department of Developmental Services created regulations, policies, guidance, orientation, or amend a home- and community-based waiver to meet the requirements outlined in the 2014 law? Transparency in the process and accountability to the law will allow more people with disabilities to have real lives. Individuals with disabilities and the people who care for and support them need to be provided the information, know-how, funding, and budget that reflect assessed needs and assistance to make this happen.”