By Brian Rubin, Esq.
Deciding whether or not an adult child with disabilities should move from the family home into a supported, community-based residence can be wrenching experience. Aside from a desire for their loved one to live as fulfilling and independent a life as possible, mom and dad must plan for the time when they will no longer be around. Even if a brother or sister is willing to be an onsite caregiver, circumstances may change, and I have witnessed few sibling situations that played out as envisioned by the parents. It's likely that, at some point, an individual with significant disabilities will need to live in a professionally supported home, and making that transition while parents are alive will be easier for them.
How We Handled the Move
My son Mitch, the oldest of my three kids, has severe autism, and shortly before his 22nd birthday, I approached the parents of one of his friends, suggesting that we look at residential options together. That way the guys would start out knowing at least one of their housemates.
We were fortunate and rather quickly found a place where Mitch could have his own room and a private bath, but as I began filling out paperwork, the emotion set in. I'd always thought he'd be the last–not the first–of my kids to leave home. It also turned out that he misunderstood the situation and believed that his new home was like the overnight camp he'd been attending for years. After a couple weeks, he expected to come back. When we'd drop him off at the residence following a visit home, he'd run after our car. This broke my heart, the tears flowed, and my wife and I began to have second thoughts.
So began a period during which he'd stay overnight with us twice each week. The residential staff tried to discourage this, saying we shouldn't get him used to a routine that his siblings would be unlikely to continue. But we persisted, reducing the visits to one per week, and eventually two or three times per month. The turning point came one night when he announced that he wanted to leave ahead of schedule. Perplexed, I called the residence and learned that everyone else was going to a party that night. He was building a life elsewhere and didn't want to miss out on the fun!
But the situation isn't perfect. Living in a group home is not the same as living with family members. Mitch's time is more scheduled than it would be otherwise. His caregivers change, which can be a problem for a person who craves consistency. When I notice a stain on the residence carpet or that his shirt is more frayed than it should be, I feel guilt. On the other hand, he has a fuller social life, and he's lost weight because the group home's staff is more nutrition-conscious than we are. Most importantly, I know that when his mom and I are gone, he'll be cared for in a familiar environment with support, as needed, by his caring brother and sister.
If your loved one has the capacity to participate in residential decision-making, identify friends who are currently living in group housing. Tour the homes, attend their social activities and, if possible, arrange for an overnight stay. Give your kid a chance to understand that this lifestyle offers new opportunities.
In preparation for your adult child's move, develop a version of your letter of intent for support staff. I actually created a page-long, bulleted list that his "staff" fixed to Mitch's door. On the back was more detailed information, as well as references to the full document. This shorthand version is especially important for staff members who are substituting for the regulars. It explains things like how to handle a meltdown and what words to avoid.
If your loved one rejects the idea of a group home, investigate other residential options. Are they capable of living on their own with scheduled visits from caregivers? Will a Medicaid waiver program cover such support? Sometimes condo-like housing is available, with onsite supervision, but alternatives vary greatly from state to state.
Any move will likely be difficult for the entire family. But keep reminding yourself that this increased independence is in your child's best interest. This is a situation in which a parent really must separate head from heart.