To Republicans Voting on My Health Care, From an Employed Person With a Disability

The US Capitol building.
an open letter to the Republicans in Congress
Dear Republican Party,
My name is Karin, and I’m just an ordinary citizen from Mike Pence’s home state of Indiana. But I’m writing to you today regarding the American Health Care Act, because my job, my home, my very life depends on you voting against this bill.
First of all, I think you should know, I was raised in a Republican household, although in all honesty, I’m not one today. But my parents taught me certain values they said were core to your party. Personal responsibility. Education. The belief that I can achieve my dreams if I work hard enough. I’m proud to say I’ve succeeded at most of those. I have a Master’s degree, and a job I love. I have my own home and four beautiful dogs. I was raised to keep working hard and never give up, so that’s what I’ve done. 
There are some things you might not like about me — I’m gay, and I voted for your arch-nemesis, Hillary Clinton. But I favor financial responsibility when it comes to government, and a balanced budget. We just disagree on the priorities. I’m also a big supporter of employment. I don’t believe in judging people who receive government benefits, but I believe there’s a lot we can do to bring more people into the workforce and make having a job more rewarding.
But here’s the problem, Republicans. Your health care plan will do the exact opposite of solving these issues. And it would actually cost more money, hurt those who can’t work, and put a lot of people out of work, including me.
I’ve told you quite a bit about my life so far, but I’ve left out one important detail. I have a disability. My brain was damaged due to lack of oxygen during birth and I have cerebral palsy. It’s not mild, either — I use a power wheelchair, and need help with getting out of bed, dressing, and many other tasks of daily living. Doctors believed I wouldn’t achieve much in life, but my parents refused to accept that, and so do I. Through sheer determination I got to where I am, and I want to keep moving up. But I can’t, not without your help.
I am able to work, and indeed live, because of Medicaid home and community-based services (HCBS) via a Medicaid waiver. Don’t know what that is? It’s a program that allows those of us with disabilities to live in our own homes and get the care we need to survive and thrive. It means I can hire people I choose to care for me, and fire people who don’t do their job. It means I can live my life like everyone else instead of having to be in a nursing home. And by the way, it saves you money. Yet it’s on your chopping block.
The issue begins with how Medicaid prioritizes funding for long-term services and supports. Currently, all state Medicaid programs are required to cover institutional care, but home and community-based services are optional. So even though the Supreme Court ruled in Olmstead that people with disabilities have the right to live where we choose, many states lagged behind — until the ACA. The ACA includes Community First Choice, a provision that offers additional federal funding to states to provide in-home personal care services. Eight states have utilized the funding; according to the AARP, a survey of just four shows that they’ve served over 500,000 people so far. But the AHCA would repeal parts of the ACA, including Community First Choice. And block grants would result in less funding, meaning states are likely to cut “optional” home care services, even though it will cost them more in the long run.
If you cut home and community-based services, people like me will end up in nursing homes, and the government will have to pay for our care there instead of our care at home. Nobody wants to be trapped in a nursing home. Would you, especially at the age of 40? If I was forced into a nursing home, I would be imprisoned for committing no crime, simply for being born with a disability and — gasp — wanting to live the American dream. But to make a point you’ll like even better, nursing homes are expensive — twice as expensive as home care. According to the Kaiser Family Foundation, in 2015 the median cost per person of living at home with home health aides was $45,760. The median cost of a nursing facility was $91,250. That’s a massive cost difference, and an opportunity to do your party’s favorite thing — cut government spending. Just imagine how much money you could save by reducing the nursing home population and helping millions of people stay in the community with their families and friends.
At the beginning of this letter, I talked about work and mentioned that I have a job. This may surprise you, but many people with disabilities, including many receiving Medicaid, want to and/or do work. There are various work incentives that allow us to have a job and keep our benefits — but they are overly complicated, and frequently at risk because of changes to the law such as what you’re proposing. Currently, I’m on Indiana’s MEDWorks program for working people with disabilities, which allows me to make a modest income every month and deduct my disability-related expenses from my countable income. I pay a small monthly premium, and can keep the home care I need to survive. But these programs are at risk too, and we could be forced to choose between our job and being able to do things as basic as getting out of bed and using the bathroom. What kind of choice is that?
Your AHCA allows states to require Medicaid recipients without disabilities to work. While I agree this rule shouldn’t be applied to people with disabilities, as some people can’t work at all, you could save money by making it easier for those of us who can work to do so. It’s frustrating that I can’t work as much as I want without going over income limits, and have to rely on Medicaid to pay for my home care. I should be in the middle class, but I can’t be, because I’d lose Medicaid HCBS. Without Medicaid, the cost of my care exceeds my yearly income. Aside from a high-priced lawyer or business executive, there’s no job I could do that would allow me to live and pay for my caregivers. So beyond a certain point, I’m essentially punished for working.
So what could fix this? It’s simple. Require private insurance to pay for home and community-based services. I have a secondary insurance policy through my father, and could get insurance through my employer if I increased my hours. If private insurance policies had to cover in-home care, I probably wouldn’t need Medicaid at all, and neither would millions of other people with disabilities who work or have a parent, partner, or spouse with private insurance.
I know many of you get campaign funds from insurance companies and wouldn’t want to cut into their profits, but the number of people requiring HCBS is relatively small, so the cost increase spread over the whole privately insured population is low. We’d be looking at a few more dollars per month per person — a lot less than the AHCA which would raise premiums by an average of 13 percent.

You and I may part ways on who should pay the extra few dollars — I think we should charge the rich folks 20 bucks a month and the rest of us should only pay an extra buck or two. But in the long run, we’d all benefit. Many people with disabilities would be able to go back to work, or work for the first time. Many jobs would be created in the home care field, better jobs than those in nursing homes. People coming out of nursing homes would enrich our economy as they pick out furniture for their new apartments, buy gifts for their families, and pay taxes. They would enrich our culture with their unique perspectives. They would have the chance to be part of America.

I don’t believe we should attach a monetary value to human life, but if we can improve people’s lives and save money, everybody wins. Republicans. Democrats. Everybody. So please vote no on the AHCA, and let’s go back to the drawing board. I’m not an accountant, and unlike Donald Trump, I’ve always known this health care stuff is complicated. But I believe if we support people to live in their communities, we will strengthen families, improve health outcomes, increase employment, and reduce costs. So let’s make it happen.
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