Striking Gold in a Group Home

I assumed all adult public group homes were mediocre at best. I was wrong.

Psychology Today, February 28, 2020

“Once in a while you get shown the light, in the strangest of places, if you look at it right.” —Robert Hunter and Jerry Garcia

So often when I tell people my autistic son, Nat, lives in a group home, I watch their eyes cloud over with sympathy. I don’t want their sympathy. I want a great place for Nat to live.

Unfair assumption or not, group homes sound like sad and dead-end places. I have learned to be happy if they are safe and to be grateful. After all, we’ve heard about horror stories in group homes across the country (reported on in this column). I’d always looked hard at the staff to assess the strength of the house. I’ve learned that you must practice vigilance and diligence when it comes to the house employees. But you also have to forge strong relationships with the staff by talking to them, smiling, complementing any initiative they take, catching them up on news, giving Christmas gifts—basically treating them the way I want to be treated by the people in my life. I believe these people are professionals, and I treat them that way, asking them for advice and respecting them. It doesn’t take an annual salary or fancy title or Master’s Degree to be a true professional.

I’m ashamed to admit that I had almost given up on the social, friend potential of Nat’s group homes because of the severity of his or the other residents’ needs and the necessity for the staff to simply maintain safety. Some were far too different in terms of communication strengths, making it difficult for them to connect comfortably, and the staff is not often trained in facilitating that level of socializing. Shockingly low pay rates account for staff issues in part. In my state, Massachusetts, there is a Workforce Initiative that is pushing for “a minimum $17/hour prevailing required wage [that] should be implemented for entry level direct care or support staff. This should be reviewed every two years for marketplace adjustments with a goal of achieving $24/hour for direct care/support staff by 2025.” Even so, I count Nat as lucky to have had housemates that have always been kind. But in my heart I want more than just kindness, I want to see some meaningful connections for him.

Frankly, I’d never been thrilled about group homes as a concept because they seemed to be places of stasis and lowest common denominator—at least that is what I had assumed of the publicly- (often Medicaid-) funded homes. Private group homes are out of the question for us because of their cost. At any rate, I’d always dreamed of other, more creative housing solutions for Nat, where he’d become a firm part of the outside world with really solid support workers that became more like friends to him than helpers. I had always loved the idea of shared living, where Nat would be housemates with his caregiver, and thus the divide between staff and client would be soft and porous. But after two failed shared living experiments, both of which promised the moon but ended in tears, I was forced to reexamine my attitudes.

Our shared living experiences taught us the hard way that all that glitters is not gold. The burnout rate for Nat’s shared living providers was painfully high; his needs did not match their skill sets. With so many failures, my dreams for Nat started to feel buried in shadows, with group homes being the only offering.

We felt we were stuck with group homes for Nat. And so I would stop counting on anything from the other residents besides tolerance of Nat’s foibles and physical companionship. We would take the group home that we were offered—it sounded perfectly fine, no glaring red flags—and be grateful for that.

Then we visited the house, and my spirits lifted immediately. I loved the colorful Victorian houses, the broad street and yards, the proximity to public transportation. I knew I had to be careful about judging books by their covers, so I swallowed my excitement. None of the other housemates appeared to be home. But then we learned that the four other housemates were all about the same age as Nat, with similar levels of ability. What’s more, one of them attended Nat’s day program, so there’d be a connection there, a friend to ride the van with.

I felt that this might be a good choice for Nat, no worse than any others he’d lived in. But as we were leaving, one of the young men came running outside to our car, screaming. We looked up only mildly alarmed—screaming young men are par for our autism course. The guy greeted Nat with frenetic excitement, hopping up and down, biting his finger. Yes, I thought. He’s just like Nat! But his excitement was because of Nat. My heart swelled up. Could this actually be a home for Nat, not just a group home?

We accepted the placement. When Nat moved in, the staff cheerfully helped and hung out while we set up his room. And always, that excited housemate would shout, “Hi Nat!” every time we brought him back after a weekend. Then, a few months later at the Christmas party, another of the young men suddenly seemed to notice us and asked us question after question. Meanwhile, we got to know a third housemate who was very verbal and independent. He told me he thought Nat was cool.

Each time we visited the house, each of the guys would greet us, knowing our names and giving us fist bumps. I was actually happy when I dropped Nat off because the men in the house all seemed so alive and interested in everything.

Recently, I did not accompany my husband, Ned, dropping Nat off after the weekend visit. When Ned came back he told me that he saw two of the young men sitting on the couch together—using sign language to communicate. Here was real gold, buried in outmoded assumptions and prejudice, and where I’d least expected it. It feels so strange to have my assumptions blown to pieces, me the cynical old mom who thought she knew everything. What a long strange trip it’s been.

Copyright 2020, Susan Senator