Mondays with Mike: Gus’ long and winding road

November 6, 2017 • Posted in Mike Knezovich, Mondays with Mike, parenting a child with special needs by

We just got back from a visit to Gus in his new home. Ordinarily, the term new home triggers anticipation and excitement—in this case, Gus’ move to new digs was more about anxiety.

I’ve posted about Gus before—short story: He was born with a rare genetic disorder that left him with severe developmental and physical disabilities. He’s 31 years old now, and has always needed help with bathing, toileting, dressing, grooming—with about everything.

Photo of Gus smiling.

Gus seemed happy in his new digs.

Until 2002, he got that help from mom and dad. Then he moved to a newish facility in Watertown, Wisconsin operated by Bethesda Lutheran Communities. He lived in what was essentially a really nice single dorm room—each building had sixteen such rooms, and they shared a large, open, sunny lounge and dining area and a specially equipped bathroom and shower area.

When Gus moved away, he and we had a hard few months of separation. But he eventually adapted and had a lot of fun propelling his wheelchair up and down the long hallways. He even managed to open a door and get out of his unit once, the little stinker. (OK, I confess, I wasn’t alarmed. Truth is, hearing that news made me a proud papa.) The facility was purpose built, it was accessible by design, and was equipped with devices that made it as easy as possible for staff to help residents with daily living. There was also a nurse on hand.

Gus’ home building was situated among others like it, as well as an older building, on a green patch of land next to a river. It was a pretty little setting.

But, it was, in a real sense, segregated from the broader community. The residents got out on special field trips from time to time, but just going outside for a walk could be problematic depending on staff.

And there was the rub. For decades now, there has been a movement away from institutional settings—ones that separate people from the general community—toward group homes. That movement advanced, in a hurry, after the landmark Olmstead Supreme Court decision in 1999. In brief, that decision led to a mandate that citizens who relied on Medicaid—which includes pretty much anyone with severe disabilities or requiring a nursing home—be placed in the least restrictive, most average environment possible.

For so many, many people, the decision was a Godsend. Lots of people had unnecessarily been warehoused in the kinds of places that gave the term institution its odious reputation. Many of these people were capable of living much fuller lives in the community.

But, as is often the case, there were unintended consequences. Namely, there were lots of people—and their families—who were completely happy in their institutional setting. Some of these people were very medically needy, and their guardians believed they were much safer if left where they were. And they put up their own fight.

The advocates for community settings were pretty dogged—they believed it was good for everyone. And many adopted the position that group homes in community settings were more economical than larger facilities. In addition, in our case, there would be better staff to resident rations. Essentially, in a group home, there’d be one staff per two residents, where on campus there might be a handful for 16.

I believe in certain situations, community settings can be more economical—but in general, they’re not. It seemed counterintuitive to Beth and me even back then. For example, certain equipment has to be made available at dozens of locations instead of just one. (Vans, lifts, etc.)

It was an attractive–if fundamentally faulty–idea to think there would be financial savings across the board.

A couple years after Gus moved to Bethesda, we learned that the wind was blowing strongly toward group homes in local neighborhoods, and away from Gus’ campus setting. We were told a new home was opening nearby, there was space for Gus with three other guys who lived on campus, and he was a good candidate for a group home. They weren’t going to force us to take the opportunity, but it was clear that he was going to have to leave the institutional setting eventually, and waiting too long would limit our choices.

So we took the opportunity. We were relieved when the transition went smoothly—there were some hiccups but not the gut wrenching few months we experienced when Gus moved away in the first place.

And Gus has lived happily ever after with the same three roommates ever since.

Until last Friday.

We got a call about a month ago informing us that his little home was being phased out. In 30 days. A lot of stomach acid and a few phone calls later, we ascertained that he could move to another nearby group home, also operated by Bethesda. And that’s where we visited Gus this past Saturday.

In some ways, it’s a better situation: The new home was purpose-built with accessible features, where his old home had been retrofitted. But it’s a duplex arrangement with four bedrooms on two sides, connected by hallways. There are eight residents, and there were two staff while we visited. The previous house was across from a cute little park where we walked Gus to watch Little League games. The new one is across the street from a construction equipment storage lot.

If this sounds like a complaint, it’s not. To start, we’re lucky that Gus isn’t terribly medically  needy, and that he has done well in both his settings. Bethesda has stuck with Gus and us through this difficult situation, which has mightily strained the organization’s resources. The people who work in the homes are the salt of the earth. Beth, Gus, and I count ourselves as remarkably fortunate.

But it’s hard not to feel a little wistful. After all, in a real sense, Gus’ new situation kind of splits the difference between his original home on campus and his previous group home.

I think we’d have been happy sticking to the first, and skipping the angst—and cost to Bethesda—of two moves. I hope it’s the last move for a good while. I can only take so much antacid.

Mel Theobald On November 6, 2017 at 5:36 pm

Mike, it’s hard to imagine the many adjustments you’ve all had to make, but in doing so, it is all so heartening to know how many good people and resources are out there. After following you, Beth and Gus through your writings over the past several years, I can only wish you all the best in these new surroundings. There’s so much to be grateful for.

mknezo2014 On November 7, 2017 at 10:48 am

Thanks Mel, agreed on the grateful thing.

Sue Doyle On November 6, 2017 at 9:38 pm


mknezo2014 On November 7, 2017 at 10:47 am

Thanks Sue. Miss you round here.

Dean On November 6, 2017 at 10:40 pm

I can’t even imagine how hard these moves are for you.

mknezo2014 On November 7, 2017 at 10:47 am

Thanks Dean. OTOH, I never had to hand him the car keys!

Kathy Moyer On November 7, 2017 at 12:15 pm

Wouldn’t it be interesting if five or more congressmen and women had adult children like you have and how “influential” their input would mean about housing and assessability for those
living in both situations – group homes and “community” settings.

Benita Black On November 7, 2017 at 11:21 pm

What happens to the facilities that are being phased out? Will they be repurposed? Did folks lose jobs?
Good luck to Gus in his new place and hope you find a nearby place for watching Little League.

mknezo2014 On November 8, 2017 at 10:11 am

Benita, the campus facilities are essentially empty, though they do rent small parts out for use as day care, etc. I expect they’ll sell the house Gus lived in. I’ll report in on Little League.

Linda Miller On November 8, 2017 at 10:59 am

Very insightful and makes me feel your stress as parents. My hopes are with yours here.

Pat Fraser On November 9, 2017 at 8:49 am

I love Mondays.

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