My aunt, released from the hospital to her wheelchair-accessible apartment last Monday, went back to the hospital last Thursday. She fell out of bed, became tangled in her oxygen-tank hoses, and had to press her life-line. The EMTs discovered she still has pneumonia, and so back to the hospital for her.
This particular aunt’s had rheumatoid arthritis since she was in her 20s and is adept at living independently. She could teach classes. So of course, even though now her diabetes is uncontrollable, her heart is taking on water as a result of congestive heart failure, and she can’t stay out of the hospital for very long, she’s clear: “I ain’t going to a nursing home. I told my doctor I ain’t going.”
My aunt’s doctor, when told she wants more services at home, accused her of abusing the system by not agreeing to go to a nursing home. Still, she told me I could contact her case manager anyway, to see what’s what.
Before you ask, yes, my aunt gets Visiting Nurses, Meals on Wheels and some home-making services. That all comes out to about four hours of services a week, I’m told. She needs more. She’s also, clearly, eligible for our state’s personal assistance waiver – in her case, since she’s over 59 – that waiver’s overseen by the Department of Aging. Yet, she’s never been assessed for those services.
Why not? “Well, she’s in and out of the hospital a lot,” says the case manager. Yes, so? “Well, we can’t assess her if she’s in the hospital.” Really. Well, that’s a hair shy of useful now, isn’t it.
So then why did the hospital release her, knowing she has inadequate services. “That’s definitely an issue,” said my favorite state bureaucrat, who works in policy and whose name I’d rather not share. I put her up to making the actual calls to the case manager, so she could experience first-hand how the system actually works for everyday-folks. Let’s call this friend Ms. Policy. Ms. Policy then went on a rant against hospital social workers who don’t know or care about community-based services.
Gosh, Ms. Policy, if only you knew someone who works in long-term care policy on the state level, maybe you could ask them to ... Hey, wait, don’t YOU work in long-term care policy on the state level? “Yes, but not for that department and I don’t know why you can’t make these calls yourself.” Well, it wouldn’t be half an education for you if I did. And aren’t you grateful to see how well the system you’re helping to cobble together is working for the good people of our commonwealth?
Most CILs can barely get a grip on managing personal assistance services for the under-60 crowd of people with physical disabilities and haven't yet figured out how to get hospital social workers to think community-first. The Department of Aging, at least in Pennsylvania, seems to be solely concerned with getting the most people the least amount of services possible, which means not many are actually served well at all. “Quantity Trumps Quality” seems to be its motto. And the Department of Public Welfare thinks getting a program on the ground in under two years is quite speedy. Perhaps it’ll get round to seeing about hospital social workers and case managers and assessment when people need them the most in the next decade sometime. And I don’t think ADAPT will come out for one little old lady – that’s hardly a systems change. Although I’d love to see the expression on my aunt’s face if a bunch of activists showed up in her hospital room. She’d kill me …
So, I guess, it looks like my aunt’s going to trade in her apartment for a bed before the month is through.
But that’s OK, my state has a nursing home transition project. All we have to do is wait for her to be admitted, give up her apartment and lose all her belongings, and then they’ll come along and “free” her.
“That’s awfully cynical,” says Ms. Policy.
OK, but is it accurate?
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