Do I Look Like I Should Be in a Nursing Home?

A couple of months ago, I got a call from an organizer friend of mine.

Like any good organizer, she gave me a brief explanation of the campaign she was working on and then set-up a one on one to talk further about how I could support her efforts.

The morning our coffee date rolled around I got a text from her saying that something work-related had come up and, if it was OK, I’d be meeting with her colleague instead. “No problem on this end,” I said, assuming that the meeting would be very cut and dry; I’d offer to help in some way and that would be that.

Here I’m talking about the ‘Home Care’ issue in a short Youtube video

Soon after, I rolled my wheelchair into the coffee shop across the street from my office, ordered an iced chai and tended to the ever-growing list of things I had to do.

A few minutes later my meeting walked in. Turns out, it was a guy I’d worked with on a project a few years before, but didn’t know well. We did the standard catching up thing and then he got into the reason for our meeting.

As soon as he started talking about the campaign, my emotions welled-up.

The ballot initiative he was helping to organize focuses on one of the issues most dear to my heart – people with disabilities being able to receive the care they need at home, instead of being forced into an institution.

I first learned about this issue several years back when I read No Pity by Joseph Shapiro (you can read parts of this life-changing book here).

Essentially, the problem is this: Medicaid, which is the health insurance most PwD (persons with disabilities) have, must provide nursing home services by law but community-based approaches, like home care and small group home care, is optional and decided state by state.

This means that far more people are in nursing homes than need or want to be. It also means that taxpayers are spending way more on healthcare for these people than is necessary – nursing homes are more than 10 times more expensive than home care!

All the research shows – and people with disabilities will tell you – we are happier and healthier at home.

How cruel is it to deny people freedom because they need help getting dressed, bathing or preparing food?

How backward is our health care system that it prioritizes nursing home interests over the health and happiness of people with disabilities?

There have been bills, like the Community Choice Act, introduced at the federal level to address this unethical incarceration of PwD, but they have all stalled in Congress. (You can learn more about this issue as well as the CCA here.)

All of this was rushing into my mind as the organizer told me about the ballot initiative he was working on, which was being led by senior and disability rights groups around the state.

Proposal 4, Keep Home Care a Safe Choice, in a nutshell, would ensure that people who needed help with every day tasks, like taking medicine, getting dressed, bathing and the like would have the choice to have someone come into their home to provide these services, rather than being forced into a nursing home to receive care.

It also would ensure that people looking for help with these tasks, and trained professionals looking to help with these tasks, could all be on a state-wide registry with information about specific needs and preferences, which would enable each of them to find the right fit.

A board of consumers and consumer advocates (that’s PwD and seniors, as well as their advocates) will be appointed by the governor to manage this registry. This is an empowering approach for seniors, people with disabilities, and home healthcare workers.

Rather than just being commodities, the folks affected by this initiative will ultimately be directing how it functions.

“Where do I sign?” I asked enthusiastically after the idea was explained to me.

In fact, I did sign a pledge of support. I also shared the names of friends with disabilities who might be interested in helping with the campaign in some way.

A few weeks later, I even agreed to make a short video explaining why I support Prop 4.

But before I left the coffee shop that day, the guy I was meeting with said, “You know, this is something I really care about on a personal level too. My sister’s only in her 20s, but she has a disease and will be losing her eyesight in the near future. Her life is going to change a lot and the more I think about that, the more I realize how much work we have to do for people with disabilities.”

What I thought would be like any other meeting turned out to be much more. I left with deep gratitude for the work that was being done and renewed hope that we can achieve progress.

I left that meeting and rolled across the street to the cell phone store to inquire about why the email on my phone wasn’t working. It was surprisingly un-busy. The lone guy working there quickly fixed the problem and then said, “I notice you’re in a wheelchair.”

“You noticed correct,” I responded.

I thought it was a weird intro to a conversation, but ended up being glad I heard him out.

“My son’s in a wheelchair,” he continued. “He’s 14 and has a birth defect. He needs a lot of help and we don’t really know anyone else with a disability.”

He pulled out his phone and showed me a picture of a precious little boy who appeared much younger than 14 and had a face just like his dad.

He then went on to tell me that he drives from Toledo every day to Detroit for work because they can’t move away from his son’s home health care providers and he couldn’t find a job any closer to home.

My heart broke for his family – and simultaneously I was excited by the timeliness of this conversation. Immediately, I began telling him about Prop 4 – the Keep Home Care a Safe Choice initiative.

It is in these connections that progress is made. Without the personal stories, Prop 4 is just one more thing on the ballot.

But when we delve a little deeper, it is easy to see how a simple vote YES on Prop 4 November 6th, can help thousands of people live healthier and happier lives at home with their families.


About Dessa

Originally a Southerner, Dessa loves the charm and hospitality of Detroit. Dessa is a proud Little Person, using her disability to challenge, endear, and cut lines at amusement parks. Training community organizers by day and earning her Masters of Social Justice after hours, Dessa loves shifting paradigms, breaking glass ceilings, and honoring the Feminine Divine. Click here to read more about Dessa

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