“Housing? I’ll think about that tomorrow…”

For many families, the demands of getting through the day (or the school year!) with a child with developmental disabilities are all consuming. The future remains a vague concern, sometimes addressed with the thought, “I’ll just have to live forever”, or, “I’ll get through childhood and the state will take care of it”.

The reality is, of course, that parents won’t live forever, and that, frequently, the state will do relatively little until the parents are gone or their health has deteriorated. At that point, parents have little to no ability to help shape supports and services that will best meet the needs of their child.

What is the housing landscape for people with developmental disabilities in Massachusetts? About 200-250 people with DD receive 24/7 housing supports from the Department of Developmental Services (DDS) when they turn 22. This is out of an overall “Turning 22 class” of 800+ people. Let’s talk about who is in the Turning 22 class, and who are the people who receive full-time housing supports.

The Turning 22 class includes people who are residents of Massachusetts, and have either an intellectual disability or autism, Prader-Willi Syndrome, or Smith-Magenis Syndrome without an intellectual disability. Those without an intellectual disability need to have “substantial functional impairment” in three of the following “major life activities”: self-care, expressive communication, receptive communication, learning, mobility, capacity for self‐direction, and economic self‐sufficiency.

Those who are prioritized to receive funding for full-time residential are people who have no family involvement, or whose families are unable to keep them healthy and safe in the family home. Who falls into this latter group? It might be the family is unable to provide supports because of the family’s own health issues, for example. Or it might be because the person with a disability has extremely challenging behaviors, such as aggression, self-injurious behavior, or pica (eating things that aren’t food). Even if your son or daughter is non-verbal, incontinent, and uses a wheelchair, he or she may not qualify if the family is able to meet his or her daily needs with less than 24 hour support.

What can you do to help prepare for your child’s future housing needs if he or she is unlikely to meet the health and safety criteria? Or if he or she isn’t likely to be eligible for services through DDS at all? Or maybe you think your child will be eligible for full time residential supports, but you think something a little “out of the box” might be a better fit than a standard group home. No matter what your situation, certain things hold true:

• Building your child’s daily living skills (things like bathing, dressing, cooking, taking medication, riding public transit, handling money) leads to better outcomes – don’t be afraid to ask the school to work on these things, too.
• You need to save money (if you want to own housing, you’ll need a down payment; if you want to rent, you’ll need a security deposit and last month’s rent – not to mention furniture, etc.).
• You need to learn about housing subsidies, how to apply for them, and when.
• You need to learn about supportive services, how to apply for them and when.
• You need to learn the rules about where you are allowed to use public funding, and which funds can’t be combined.
• If you want to own housing, you need to learn about what kind of financing is available.

We’ll talk about all of these in future posts.

(Nothing written on this website is intended or should be construed as legal, financial, or other professional advice. For a complete legal disclaimer, please click here.)