Planning for Life

Housing for Your Special Needs Child: A Legal and Personal Perspective

Posted by Karen B. Mariscal on November 19, 2016

By Karen B. Mariscal

Most parents of special needs children keep their kids at home with them through the parents’ 40s, 50s, or even longer. Only about 15 percent of DDS (Department of Developmental Services) clients receive housing from the state when they turn 22, and those tend to be the most difficult cases – where the person cannot live safely on his own or with his parents. The rest are left to their own resources when it comes to housing. Their parents need know their options and think creatively about how best to provide for their loved ones as they age.

For this reason, we have prepared a series of blog posts to help special needs parents understand their options with respect to housing, and explain certain government subsidies that may help pay for their housing and caregiving:

These topics are relevant to me personally, since I have an autistic 24-year-old son, Billy, who has just left our home to live in a group home in Framingham. Billy, although low functioning, was not prioritized for housing by DDS, which means that we have to pay for his housing.

But piecing the financing together is only part of the problem. Having Billy leave home is one of the most difficult things I have gone through as a parent. Billy’s group home opened on June 10, 2016, and this initial roll-out has been, and continues to be, an emotional roller coaster. Some days I am happy, enjoying my freedom, and thrilled that he is doing so well. Other days I get myself completely worked up over some issue, don’t sleep, and forget to be thrilled at how well he is doing. In between these extremes I am living with a constant anxiety, wondering how things are going, and just worried. There are so many things that can go wrong.

But then I see him, and instantly feel better. He looks great, well cared for, and HAPPY. Here’s a picture from his most recent time at home:M&B Billy.jpg

Now what was I so worried about?

But nothing about this has been easy. You might think that it would be nice for me to not have to take care of him after all these years (Billy is 24), and for my husband and I to finally have an empty nest and be able to do what we want. Of course this is true, and part of the reason we did it. But frankly at this juncture it is easier for me to have him home. I have been his eyes, ears, and voice for 24 years, and I don’t really understand how he can function without me. I want to know what is happening with him, and whether he needs anything. If something is going wrong, I want to take care of it. At home. With our family. Where he belongs.

(That last bit comes from my heart, not my head – these two are constantly doing battle these days.)

Billy is autistic, largely non-verbal, and very sweet. He has a low IQ and trouble doing most things. He can sort of dress himself, but there is a good chance something will be backwards, inside out, or not appropriate. He needs help with teeth brushing and can’t shave himself. The list goes on. On the bright side, he is very compliant and always up for anything. He wants to help and he wants to go. He never complains.

This is a life-long journey we are on. Finding the money and government supports to help pay for everything is only part of the problem. That Billy has this opportunity is actually a miracle, made possible by wonderful friends, years of planning and hard work, excellent caregivers and agency support, and the stars aligning. But that doesn’t mean this isn’t hard.

So why did we do it? Why did we have him leave home, at such a relatively young age? Don’t think I haven’t asked myself that. But not when we see him. He has come home once or twice a week, and every time he has looked great, seems to be proud of his new-found independence, and says he wants to go back. That is worth its weight in gold. For now, his picture says it all. We did it for him.

Topics: special needs planning

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