Every now and then, amid the wretchedly rigid and ritualistic reading of spreadsheets in budget committees, an advocate like Bill Muir speaks. And the committee listens and seems sympathetic. But will the higher-ups in the Legislature?
Muir was among a handful of parents of developmentally disabled children and their providers who begged the Senate’s Health Appropriations Committee on Monday not to cut group home rates more. By one calculation, the health budget has about $330 million in general-revenue cuts (for a total that, including the loss of federal Medicaid-matching money equates to at least $600 million).
Muir has a 27-year-old son with cerebral palsy, quadriplegia, autism and occasional blindness. He lives in Boca Raton – in Palm Beach County, home of Senate President Jeff Atwater, whose chamber isn’t banking on receiving nearly $1 billion in one-time federal Medicaid money. But Muir didn’t talk about that, or about the fact that Atwater might want to use the Medicaid cash to help plug other parts of the budget (which could leak even more if the election-year Senate flip flops by cutting some taxes they hiked last year).
Muir steered clear of politics. He just talked about his own life and about the time, a few years ago, that Catholic Charities planned to stop running three Boca Raton-area group homes for 18 developmentally disabled kids.
“I was very upset about that and wanted them to stay in business. And they said, ‘OK, if you think you can handle it.’ So approximately in my 65th year, I acquired 18 more dependents,” Muir said.
And he found out that, despite his elderly age, there were parents like him who are far older:
“I am relatively one of the kids in the group. Most of our parents tend to be in their 70s or into their 80s. And they have fought their whole lives to take care of these kids and to get them into some level of security. And at this point, our lives really revolve around – we’re doing walk-a-thons, we’re baking pies, we’re doing everything we can to keep some level of quality of life for these kids. And that used to be for the quality of life. But just in the last series of cuts, we’re doing that just to maintain basic services at this point. A number of our kids don’t have full services through the week. We have had to go out and raise community money to get it to keep them in the day programs they’re involved in, to keep them in their homes at this point.”
Muir, whose group homes are affiliated with Sunrise Group, said he’s “absolutely stunned at the way that they are able to maintain the services on the margins that they have. And every year, they slice the onion just a little bit thinner, and a little bit thinner. And it’s that old story: I’ve been doing so much with so little that now I’ve got to do it all with nothing. And that’s kind of where we are at this point. We have cut it. Cut it. Cut it.
“Now just a final point: I’m here, which means my wife is at home. And if my son has to go to the bathroom, if he has to go to the shower -- anything that’s involved in that. This lady is taking care of that kid by herself. And I do that because that saves a bed for a parent who is ten years older than I am who has got another kid who needs that level of help and support. So I know the claims that you folks must have and you must get torn in so many directions. But this is about as tough as it gets. Thank you very much.”