Hey friends, this is a Common Misconception series on ideas society can sometimes hold about the disability community. So let’s answer the question and clear the air!
Do adults with developmental disabilities have to live with family? The quick answer is no! Adults with developmental disabilities do not have to live at home with family if that is what they choose to do.
A few years back, I was listening to LOMAH’s housing podcast series hosted by Kim Albrecht. Kim is a mom of a teenage daughter with a disability who is nearing adulthood and looking for answers about her daughter’s future. You can find a link to her podcast in the My Favorites resource library.
In the episode, the question “Do adults with developmental disabilities have to live with family?” came up. At the time, I thought we had the answer to this question all figured out. It was a simple one. When our son reached adulthood, he would live with us, indefinitely — easy peasy — so I thought.
Challenging Conventional Thinking
Kim interviewed Scott McAvoy from Malbridge — a campus housing model for individuals with developmental disabilities based in Texas.
The discussion focused on the transition of adult children with intellectual and developmental disabilities (I/DD) from their family homes to alternative care settings. Scott pointed out that, typically, we expect neurotypical individuals to either attend college or move out after high school. He believes we should provide similar opportunities for our adult children with developmental disabilities.
He encouraged parents to challenge their perspectives about their children’s future. With the right kind of support, he said that most adults with developmental disabilities could achieve things that parents once thought were impossible outside of their homes.
Scott believes that transitioning from the family home during early adulthood, like peers and siblings, creates a smoother experience for everyone involved. The sooner the transition happens, the better the outcome tends to be.
At the time, I remember thinking, “Wait, what is this person talking about? Let your child with a disability move out in their early adult years like their non-disabled peers. That’s crazy talk!
But then I asked myself, were we making choices for our son based on solid reasons, or just following the script because that’s the only option families like ours think we have? I mean, that’s what adults with disabilities did — stay home with Mom and Dad forever, right?
The issue with that mindset is that our time is limited; mom and dad won’t live forever. So what then? What will become of our adult children with disabilities when we are no longer here? Where will they go after leaving the only home and caregivers they have ever known?
According to the Autism Housing Network, over a million folks with intellectual and developmental disabilities are happily living at home with family members who’ve hit the age of 60. This makes our choice for our son feel like a popular one, but does that really mean it’s the right one?
There is no one-size-fits-all answer to the question — Do adults with developmental disabilities have to live with family? But if we stay open to exploring different housing possibilities, we can get closer to finding the answer for our loved ones and what the best living situation is for them.
Know Your Endgame
The choice of whether to keep our adult children at home isn’t an easy one. It comes with its challenges, with every family facing their own situation. Factors like finances, diagnosis/behaviors, family dynamics, and support shortage can impact our decisions.
Unfortunately, though, almost all adults with developmental disabilities will need to transition from their family home to another living situation at some point in their life.
As parents, when it comes down to it, we have two choices: be involved in the transition while we can or leave it to others to handle once we’re gone or no longer able to.
When I think of it from this perspective, it’s obvious. We have to be part of Ian’s transition, period. The thought of him having to leave our home without our support or a plan truly breaks my heart.
So, where should families start? What’s worked for us is to begin at the end. Trying to have an idea of what the endgame is has been helpful. It doesn’t have to be set in stone, but having a loose idea of where you’re heading always helps when mapping out plans or goals.
I love the Person-Centered Plan for plotting out long-term goals. I’ve mentioned PCPs before and I guarantee you’ll hear about it again because it’s a fantastic tool. It allows for open and honest conversations with your adult child about expectations and goals and helps organize all your thoughts in one place.
Explore Housing and Support Options
I admit, sometimes it’s hard to picture our son anywhere other than living at home, by our side. But I know that exploring different living possibilities will open up opportunities we never dreamed of for him.
Once you have your endgame in mind, start researching other living arrangements and support options. Consider talking with other families who have navigated similar transitions. They can provide comfort and practical advice.
Also, there are tons of online housing resources if you know where to find them. I’ve listed a few of my favorites here or you can find more over at My Favorites resource library.
Final Thoughts
I’ll be honest, the idea of Ian not being in our home one day truly stresses me out and can sometimes keep me up far too late at night. As parents, we must learn to find a delicate balance between holding on and letting go—it’s a challenging journey! Remember to give grace to yourself as you go through it and let yourself feel what you need to feel. You’ve got this!
Is your adult child living in the community? I would love to hear about it. Be sure to leave a comment.
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