The reality a family faces when a loved one has an intellectual or developmental disability is that the road ahead will be filled with lifelong challenges.
Our son James is 32 and lives with us. His older sister and brother have both married and moved on. James has a unique sense of humor and terrific work ethic. He also has Down syndrome and limited communication skills.
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.
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Unfortunately, state government is turning into one of those obstacles — especially for families that are just learning how to navigate the system.
We are veterans of that system. Our goal was to find a meaningful life for James, one that includes some work but also fun. Once he turned 22 and made the transition from school to adult life, that meant finding the right combination of services, activities, and support staff to back him up. James loves to be productive. We’ve found opportunities for him to shred, recycle, bus tables, and do light cleaning in a variety of settings. He is happiest on the two days a week he works; he jumps out of bed with a big smile and uses sign language to sign “work.” He is very enthusiastic about following that routine.
James has a good life filled with the activities and people he enjoys. He has a life of his choosing, called “self-direction.” But right now, it takes a lot of direction from our family for that to happen. What I hope for from Governor Maura Healey’s administration is more of a partnership between family and the state to make it easier.
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Self-direction is the terminology used to allow individuals with disabilities to utilize the most flexible funding that the Department of Developmental Services sets aside for people to design and choose the services and supports that work for them. DDS serves more than 32,000 adults but less than 2,000 people are self-directing. The Real Lives law passed in 2014 gives people the right to choose the services and supports, such as hiring their own support staff, taking classes, and choosing activities that interest them. Day programs are no longer the only option. But sadly, it hasn’t been implemented very well, if at all.
My friend’s daughter recently returned to a day program. Her daughter is 35 and because of COVID-19 was home with her parents with only occasional activity-based Zoom calls from a day program for the past three years. The mother retired to care for her. The family was never offered a choice, just told the day program couldn’t accept her back due to lack of staff. How is that sufficient or even reasonable?
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.
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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.
Logistically, it is also harder than ever to connect with DDS for help, because since the pandemic, DDS staff has been working remotely. The state has shifted to two to three days of remote work, but this work is based on relationships, knowing the people you’re serving, and assessing changing needs. DDS is a human service agency — human connection should be a reasonable expectation.
Parenting and supporting our family members with disabilities is lifelong and demanding. We need DDS to be fully present for us and a partner in making this complex system easier to navigate. Zoom calls were a lifeline during the height of the pandemic but are not the answer to everything now. They were fine as an option, but face-to-face care is needed for individuals with disabilities and the people who support them. Let’s encourage staff back to the office, offer across-the-board training, and a plan to communicate this vital information.
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Our family has done all it can to create a full life for our son. We — and thousands of other families like ours — need a full partner in the state of Massachusetts.
Susan Nadworny is chair of the MA Families Organizing for Change.
