Telling My Medicaid Story

For several months, my disabled peers have been sharing their personal stories about Medicaid. I read Vilissa Thompson’s story and Jensen Caraballo’s story, both published on the Center for Disability Rights blog. I watched the videos published on the Disability Rights Education and Defense Fund website. I cheered for my friend Alice Wong when her OpEd “My Medicaid, My Life was published in the New York Times.

I have written about Medicaid on this blog before. When I was participating in the Redefining Disability blog challenge, I wrote about it here, and I also wrote about how my need for personal assistants impacts my life here, and I wrote about it again here.

I wasn’t feeling the urge to write about Medicaid again but then last week happened. On Thursday, United States Senate Majority leader Mitch McConnell (R – KY) released the Better Care Reconciliation Act of 2017 (BCRA), the Senate’s version of legislation to repeal the Affordable Care Act. The majority of the bill is focused on changes to Medicaid. There are several websites that provide summaries of these proposed changes, such as HealthAffairs.org, the Kaiser Family Foundation, and NPR.

Did you catch the other big news story in US media on Thursday? Did you notice the story that appeared on CNN, MSNBC, ABC and many local affiliates across the country? The story that was later featured in Rolling Stone, TheHill.com, USNews, and Pacific-Standard among others?

For a few days this week, disability made the headlines thanks to advocates who literally put their bodies on the line. Thursday morning, in anticipation of the release of the Senate bill containing cuts to Medicaid, a group of about sixty disability rights activists gathered outside Senator McConnell’s office to stage a “die-in.”

Those gathered are members of ADAPT, a grassroots disability organization that has been fighting for disability rights since the 1970’s. What – you’ve never heard of ADAPT? Maybe you missed the 20 minutes Rachel Maddow spent on her show Thursday explaining ADAPT history and providing perspective on the disability rights movement. In case you didn’t catch it, you can watch it now. It doesn’t matter if you’re not a fan of Rachel (I’m not a fan either), just watch the video.

I am young enough to remember life before the Americans with Disabilities Act (ADA). I remember being carried on and off buses by my friends on school trips because we did not have an accessible bus. I remember taking walks and zig-zagging across the street every few blocks because not every corner had a curb cut ramp. I remember the sense of relief when I learned I could not be fired because of my need for a reasonable accommodation from my employer. I remember telling my parents about a new program called Consumer Directed Personal Assistance – a program that would allow me to hire home care workers who would assist me with my basic care needs when I was no longer able to perform these tasks independently. I remember my mother tearing up as she realized I would be able to manage my care in the community.

I live in the community because Medicaid, the program threatened by the BCRA, pays for the Personal Assistants (PAs) who serve as my arms and legs. I often tell people that my PAs allow me to be independent, but what does that really mean? Indulge me as I get to the nitty-gritty.

It means my PAs come into my house every morning and start by uncovering me when I am ready to get out of bed, and then sit me up. They move my wheelchair next to the bed then transfer me from the bed to my wheelchair using a slide board. Then they transfer me from my wheelchair to the bedside commode so I can go to the bathroom. When I am finished, they take the bucket to the bathroom where they empty it and clean it.

If you can no longer independently use a toilet, who is going to dump your bucket? Who’s going to wipe your butt if you have to use a bedpan? Who is going to try not to gag when you have diarrhea or when your period comes on heavy and unexpectedly?

When you become disabled, injured or old, your need to relieve your bowels and bladder will not magically disappear. You will still need to pee and poop. When you do go, who will help you?

Are you going to depend on your spouse? That may work if you are married to someone willing to assume the role of caregiver. Maybe you’ll depend on your children, assuming you have them and assuming they live close enough to come help you every time you need to go to the bathroom.

How many times each day do you like to use the toilet? Would that number change if you needed the assistance of another person? On good days, I use the toilet four times. Most days, it is only three. With planning, I can get by with two.

This choice – the choice to determine how many times per day I wish to urinate – is a choice I have because I do not live in an institution. I am not forced to live in a nursing home where someone is tracking the number of times I use the toilet, or how much fluid I drink and void each day. I am not viewed as a patient in need of medical care, but a person with dignity and liberty.

But without Medicaid, the funding source for long-term services and supports for millions of disabled Americans, this choice is gone. To better understand how Medicaid works to make freedom and liberty possible, read this great summary by Rohmteen Mokhtari.

Take away Medicaid and you take away our liberty. Take away Medicaid and thousands of us will face no alternative but to turn to institutional care just to meet our basic needs. I am not the only one predicting this. Read this article from The Guardian to learn how others have been impacted by Medicaid and why they are fearful of the BCRA.

I am fortunate. I have friends and family who have rallied to my side in the past when I have needed short term assistance. I have friends and peers who are willing to protest for our civil rights, who are willing to be lifted out of their wheelchairs and carted off by police. I have a platform that allows me to tell my story.

And as the late disability rights activist Harriet McBryde Johnson wrote, “Storytelling is a survival tool.”

 

 

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12 thoughts on “Telling My Medicaid Story

  1. I always appreciate your willingness to share and provide awareness to the greater public. As you so clearly convey these changes have significant life altering impacts for many. Thank you for providing a deeper understanding for those that may not understand the true effects.

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  2. Thanks to you and your friends for fighting the good fight. I’ve been in denial about disability. My doc told me months ago to file immediately, but the horror stories I’ve read make it seem impossible to get – four-year waits or longer to get the benefits you’ve paid for with every paycheck ( in my case since I was 15 years old). In my state, another two years after receiving SS before you can get Medicaid. So I’d fight to get around $1200 a month – and my meds alone are over $600 monthly. I can’t even think of you and so many others being forced into “care centers” without being very pissed off.

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    • Disability as a social identity is different than ‘disability’ as a benefit through Social Security that is tied to working. I don’t qualify for ‘disability’ because I work. Getting ‘disability’ is difficult because the government wants to prevent fraud. I understand that, but I think the system could be improved. But, Medicaid is different. I qualify for Medicaid to assist with medical care and home care because my state has a Medicaid Buy-In Program for Working People with Disabilities. Any time you want to discuss the matter further, let me know. Medicaid rules change from state to state, but SSDI is the same nationwide.

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  3. Thank you for sharing your story. And thanks for pointing out some of the specific and vital ways Medicaid helps people. I really hope that more leaders and citizens will see the need to do what we can to care for those with disabilities (and for all of us to care about each other, in general). It doesn’t make sense to me that a large group of leaders and citizens want to just get rid of Medicaid. I’m all ears for hearing how we can improve Medicaid and help as many people who need it as possible. But to just take it away without making provisions, that’s just cruel.

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    • I imagine if you ask the Senators who support the BCRA they will tell you they want to preserve Medicaid. But changing the funding to per capita caps or block grants would reduce available funds and pit disability groups against each other as we all compete for smaller slices of the same pie.

      We save money when we provide care in the community. Why is that not a selling point for the Republicans?!

      Liked by 1 person

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