Matthew and the CCRC.

Matthew and the CCRC.
They also had a brother, Matthew, who had Downs Syndrome. He was highly functional, they said, and had an extremely sweet personality.

Continuing Care Retirement Communities (CCRC) often have a challenge with potential residents who would like their adult child with disabilities to move in with them so that they can provide for their care while the CCRC provides for housekeeping, meals, etc. It’s not that the communities are heartless to their pleas. It’s the economics and legalities of the situation.

When anyone moves into a  CCRC, they must prove they have the resources available to be able to afford to live there—which wouldn’t usually be the case for an adult with disabilities. What’s more, CCRCs are generally contractually bound by their state licensure to only allow residents 55+ or older.

By wishing to include an adult child who could not afford to live there on their own (or is underage), problems arise. If the responsible parent (or parents) pass away and the adult child with disabilities is left on their own, who is then supposed to care for them? Who is supposed to pay for that care? Will the CCRC be forced to evict the resident? Will the state force the CCRC to evict them? That’s hardly “Continuing Care.” And not very good for public relations, either.

I’ve seen the situation occur numerous times. And unfortunately, the prospective resident and their adult child are usually turned away before they can move in—even as ideal as the situation would be. But Matthew was one adult child with disabilities who beat the system—in more ways than one.*

I was first approached by the children of a couple who lived out-of-state. Their parents, they said, were interested in moving into the independent living portion of our retirement community. But it wasn’t just their parents. They also had a brother, Matthew, who had Downs Syndrome. He was highly functional, they said, and had an extremely sweet personality. He was also 47, which was well under the age limits of our community. Should anything ever happen to the parents, they promised that they would take over his care in their own homes.

As it was the weekend, I told them I would have to pass their request along when management got back into the main office on Monday. I sent my end-of-week report up the chain of command detailing their situation and asked for guidance. After several days had passed, I still hadn’t received any direction so I asked again. This time, I noted that they would like to move in but there wouldn’t be any way to even interview Matthew prior to a move as they were coming from out-of-state. I still didn’t hear anything.

Assuming all was well (and as occupancy was an issue), I told the children to tell mom, dad and Matthew to make plans to move. We reserved the apartment and they began to arrange the move. I, in turn, noted that the apartment had been reserved by them. That’s when it really hit the fan.

Absolute panic ensued from the CEO in the main office. And a thousand questions. But he couldn’t fault me. I had done absolutely everything by the book. I had reached out and made him aware when the issue was first raised. Finally, after much internal corporate angst, it was decided to let the parents and Matthew move in. As promised, the siblings were there to help. And, as promised, Matthew was as sweet and kind as could be. Unfortunately, the same couldn’t be said for all of our residents.

Not long after that, one of our residents came into my office, closed the door and chewed me out royally. She was absolutely furious. “What did I think I was doing! How could I allow him to move in here? This is an independent living community!”  I was shocked at how angry she was. And it wasn’t that I hadn’t heard comments like those before.

If the truth be told, I often heard similar comments whenever I moved someone in with a wheelchair or a walker. You see, although independent living residents may one day need them, they don’t like to see them. What surprised me the most this time, however, was who the comments were coming from.

This was a single woman who was extremely liberal to a fault. She had broken barriers to become a nuclear scientist when those doors were closed to women. She had helped run a nuclear power plant when no other women would even think of such a thing. And, after she retired, went out of her way to counsel female college students to break barriers and go into STEM majors. All I could do was take the abuse and say, I’m sorry you feel that way.”

Just about a month later, I was surprised when she came back into my office and closed the door. Again. This time, however, she was quite contrite. And apologetic. She had gotten to know Matthew, she said. And she saw what I was attempting to do. She was sorry for all the things she had said. Matthew made the community a better place.

Many months passed. Our community had an open house at which Matthew’s family and the CEO were all present. And one of the siblings who I had originally met with came up to me and noted they had met the CEO. They said that they had praised my efforts to him and thanked him for allowing Matthew and their parents for moving in. “Where do you get people like Tom?” I was told they asked him.

I still have to wonder what he was thinking.

Journeying along the gray mile with caregivers isn’t always easy. But it can, at times, be extremely rewarding.

Tom Text

*Not his real name







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