Once a month, Ed got a haircut. An expensive haircut. It cost half his monthly income.
There was nothing fancy about Ed’s haircut. No frosted tips or anything like that. It was your standard barbershop clip. It cost $15. But that was half of Ed’s income of $30 a month.
That’s because Ed fell prey to the cripple wrangler. The cripple wrangler is a ruthless bounty hunter. If we cripples don’t keep our guard up, the cripple wrangler drags us away to live in a dystopia where a haircut costs half of our monthly income. In other words, a nursing facility.
Wait a minute, I hear you saying. People in nursing facilities can have an income of only $30 a month? How could that be? I’ll get to that in a minute. But first, let me tell you a little more about the cripple wrangler. For a whole lot of disabled Americans like me, he’s our version of the grim reaper and we’re all running like hell to stay away from him. It’s what motivates us through life.
He isn’t a flesh and bones creature. He’s more like an invisible social and political force. But even though the cripple wrangler is fictional, he’s definitely real. In my mind, the cripple wrangler looks innocuous. Male Caucasian of average height and weight. No scars or other distinguishing features. That’s what makes him so evil. He blends in. If he wore a hooded robe and had glowing red eyes, everybody would know he was up to no good.
The wrangler sneaks up on cripples and snatches us away, like he did one day with Ed. It seems like another comrade disappears on us every day. They end up in nursing facilities. Federal law allows that facility to confiscate all of their Social Security income except for a “personal needs allowance” that can’t be less than $30 a month. That rate was set in 1987.
When you reside in a nursing facility, you also relinquish your right to make life’s small daily decisions. Someone else decides when and what you will eat, when you will go to bed. If you want to leave the premises, even for a few hours, you need a doctor’s permission.
My friend Ed died in July. Back at the nursing facility, he had about thirty square feet of private space—his half of the room, his bed, a nightstand, a closet, and television mounted high on the wall. When I say private space, I should put the word “private” in big fat quotes because in a nursing facility you can’t control who gets to be your roommate. A new stranger may be whisked into your room at any moment. Or you may be whisked to another room.
I prefer deciding for myself what and when I will eat. I’m way too old for anyone’s damn permission to go out. I don’t want to share my sleeping quarters with strangers. And I like having more than $30 a month to spend. Call me a control freak.
One afternoon when I visited Ed, there was yet another new roommate lying in the next bed watching a grating daytime talk show on the wall-mounted TV on his side of the room at full-blast volume. The only thing Ed could do to shut him out was draw the curtain between their beds. Ed had no privacy.
Personally, I prefer deciding for myself what and when I will eat. I’m way too old for an externally designated bedtime. I don’t need anyone’s damn permission to go out. I don’t want to share my sleeping quarters with strangers. And I like having more than $30 a month to spend. Call me a control freak.
And yet I know the wrangler can come and yank me out of my life at any time. He nabbed Ed, who was once a kick-ass activist. In 1969, he was part of a small band of street guerrillas who broke into a Selective Service office in Chicago after hours, seized all the draft files, took them out to the alley, and set them on fire. For that, Ed spent two years in federal prison.
But forty years later, it got to where Ed couldn’t walk anymore. He rode around in a manual wheelchair and needed help with things like getting out of bed and getting dressed. And he didn’t have the money to pay someone to assist him. He was on Medicaid. That made him ripe for picking by the cripple wrangler because Medicaid rules say that people like Ed who need “long term care” must be in institutions, like nursing facilities.
I need the same kind of assistance Ed needed. Every morning, someone has to dress me, lift me out of bed and into my wheelchair, and help me do all the routine activities everybody does every day. But so far, unlike Ed, I’ve been able to fight off the cripple wrangler. I’ll explain that in a minute, too.
There’s nothing the cripple wrangler hates more than Medicaid 1915(c) HCBS waivers. HCBS stands for Home and Community-Based Services. That’s what I rely on to get out of bed, etc., every day. It’s called a waiver because it waives the federal requirement that people who need assistance, like Ed and me, can receive help from Medicaid only if we are institutionalized. States that apply for and are granted a waiver can use Medicaid money to fund programs like the one that pays the wages of the people I hire to assist me in my home.
There are several Medicaid waivers designed to keep disabled folks out of institutions. They came about because, a few decades back, some disabled folks and their family members refused to quietly surrender to the cripple wrangler. They demanded options. The change has been dramatic. State Medicaid spending for HCBS grew from 18 per cent in 1995 to 53 per cent in 2014.
States spend more today to provide people like me with HCBS than they do on incarcerating us in nursing facilities. This pisses the cripple wrangler off big time. It’s bad for his bottom line, because nursing home care is more expensive—that is, more lucrative. Without the HCBS waiver, the cripple wrangler would probably have scooped me up long ago.
But although forty-seven states and the District of Columbia operate waiver programs, plenty of disabled people remain at the mercy of the cripple wrangler. Ed, for instance, was too old to qualify for the program that serves me here in Illinois. There were nearly 600,000 people languishing on waiver-program waiting lists as of 2014.
Can you believe that? “You say you want people to assist you in your home? Sure, just wait here in this line for five years or so. Meanwhile, here’s a nice nursing facility for you.”
Shortly after Tom Price began his ephemeral reign as Secretary of the Department of Health and Human Services, he sent a letter to all governors announcing the department’s willingness to fast-track the waiver approval process.
“We wish to empower all states to advance the next wave of innovative solutions to Medicaid’s challenges,” the letter said.
These are ominous words because when Republicans like Price use any variation of the word “innovate” in the same sentence as the word “Medicaid,” they really mean “cut.” Whereas the purpose of waivers is to make Medicaid more inclusive, Republican governors are now using waivers to restrict Medicaid coverage, reduce eligibility, and place new burdens on those already enrolled.
When Republicans like Price use any variation of the word ‘innovate’ in the same sentence as the word ‘Medicaid,’ they really mean ‘cut.’
Maine and Wisconsin want to make certain enrollees pay premiums. Arizona has submitted a request to set a five-year lifetime individual coverage cap on Medicaid for “able-bodied adults.” Arizona and other states are looking to impose a work requirement. The journal Health Affairs estimated that eleven million people would be at risk of losing Medicaid coverage if work requirements were in place nationwide.
The Obama Administration rejected prior efforts to impose work requirements. But the current administration seems likely to let governors “innovate” the hell out of Medicaid. It’s a nagging reminder that the waiver that stands between me and the cripple wrangler is extremely fragile and vulnerable to political whim.
Had the Republicans succeeded in their attempts to repeal the Affordable Care Act, it would have been a joyous day for the cripple wrangler. All those attempts sought to impose annual caps on the amount of federal Medicaid funds allocated to each state. These allocations have always been an open-ended percentage of what the state’s Medicaid costs are in a given year.
The Center on Budget and Policy Priorities noted in a report that the repeal bill that passed the House would have reduced Medicaid funding by $839 billion over ten years. Because HCBS services are not a required Medicaid benefit, they would become an increasingly juicy target for cost cutting as funding diminishes. “Some states could eliminate their HCBS programs altogether,” the report said.
If the cripple wrangler ever grabs me, I’ll never cut my hair again. If I’m stripped of everything but a few changes of clothes and $30 a month, I’ll be damned if I’ll spend $15 on a haircut. I’ll have hair as long as Rapunzel’s, a beard like God himself. That will be my way of asserting my last little bit of autonomy. Call me a control freak. ω
Once a month, Ed got a haircut. An expensive haircut. It cost half his monthly income.
Mike Ervin
Mike Ervin, a writer and disability rights activist in Chicago, writes the blog Smart Ass Cripple at smartasscripple.blogspot.com.