So apparently, New York State Governor Andrew Cuomo (along with The Department of Health) see no problem with forcing over 70,000 disabled and senior New Yorkers, against our will into nursing homes and institutions – ‘cus ya know, he’s all about justice.

For many months now, while New York State Governor Andrew Cuomo has been going on about his “Justice Agenda,” he’s been throwing seniors and disabled New Yorkers under the bus. The attacks have been brutal but the most recent attack may be his worst yet.

WHAT YOU NEED TO KNOW:
1.) The CDPA (or Consumer Directed Personal Assistance) program creates over 100,000 jobs for the community.

2.) The CDPA program empowers over 70,000 disabled people and seniors to have a choice as to who comes into their homes, and assists them with intimate things like bathing, getting dressed, eating etc.

If this was you, wouldn’t you want the dignity to have a say as to who comes into your home?

And while Cuomo’s proposed cuts would absolutely destroy the program, this whole time he’s been saying how it’s not his intent to impact the quality of service. It really begged the question: Is Cuomo outright lying or does he genuinely not understand how this works?

However, in a recent story by Spectrum News, the terrifying truth was revealed.

When asked how will he make sure that people will still have the same access to the popular and much-needed Medicaid program, Cuomo and the DOH replied “The state… is currently not aware of any access issues, particularly since there is [an] excess bed capacity in hospitals and nursing homes.”

It’s to the point where several CDPA agencies and disability organizations are actually suing Cuomo & The DOH because they realize these cuts aren’t intended to just change the program-they are meant to outright eradicate it.

And so after my near panic attack subsided, as a disabled person I could not help but wonder: Is Cuomo lying or does he not understand the difference between the freedom of being in your own home versus being forced against your will into a nursing home and/or institution?

Image description: Pink background with three rows of decorative plates (6 in each row) On top, in bold yellow font with a minor black shadow reads: Inanimate objects vs disabled people: a psa

You see, after my brain developed a second brain cyst (benign but still shaking things up), I became mostly bed bound and spent a month or so in the nursing home. I’ve received care in an institutionalized setting and now in my home – so I know not only is there a difference, the gap in the quality of care is enormous.

1.) In the month that I was in the nursing home , I received only two full showers. Sometimes they’d give me a partial sponge bath (only washing minimal parts of me, and usually leaving the soap on, which irritates your skin.)

In my home, I get daily sponge baths (and sometimes actual baths if I have the mobility/energy to get into the shower, which is sometimes an option now that I’ve gotten stronger – due to being home.) I am cleaner, I am healthier and no one ever leaves the soap on.

2.) In my home, I am free to use what works with my body, like my heating pad which I rely on to help the muscle spasms and pain in my back.

In the nursing home, they took away my heating pad for 3 days when I first arrived, causing a decrease in mobility, increase in back muscle spasms and a whole lot of pain. I barely slept as a result. (Meanwhile, they were more than eager to offer me drugs.)

3.) In NYC nursing homes, there are no motorized wheelchairs allowed. I was given a dinky manual wheelchair that did not have the spine support that I need (and that my motorized wheelchair has). Being forced to use the manual wheelchair was physically painful and only made me worse. Furthermore, I was told that if I needed to leave my room, that I could ask the staff and they would wheel me around, but the place was grossly understaffed and this was just not true.

At home, I am able to use my motorized wheelchair to get around (when I can), sometimes my PCA gives me a lift with the manual wheelchair (when I can’t), and sometimes I am even able to walk slowly around my apartment. After a month, in the nursing home, I was no better (if not worse) when I arrived. At home, I’ve only gotten stronger.

4.) One time two nursing home workers came into my room to assist my roommate in getting ready for the day. One was extremely rough with my roommate (who was very much aware but not very verbal) and so she started to cry. The kinder worker said “Be gentle. it breaks my heart when she cries” to which the more vicious and burnt out staff person replied “don’t bother. she’s just a lump.”

That would never happen in my home, because with the CDPA, I am able to hire – and if needed, fire the people who work for me, creating a more empowered dynamic.

5.) Even though I was in the nursing home for over a month, the staff would frequently make mistakes with the vitamins that I take. Each day I would get varying amounts, and once I was given the wrong thing. When I asked what I just took, the person didn’t even know. This mistake further messed with my health for 2 days after the fact. I can’t even imagine what happens to people who are on medications but can’t speak up.

At home, I get the vitamins that I need and with a steady amount each day. As a result, my health has improved.

I could go on with many more examples, and if you ask people in the disability community, the stories are often far worse, and sometimes violent. The fact is, nursing homes are nothing short of glorified hospitals, where the facilities are highly understaffed, and where “care” is a dehumanizing assembly line.

Besides the fact, that there is actually a shortage of open beds in nursing homes & institutions, the fact that I need to explain that there is a difference between living in your home and community vs living in an institutionalized setting, this in itself shows that Cuomo is not fit to be making decisions about the lives of over 70,000 disabled and/or senior New Yorkers. How does he not know? Did he not do any research before proposing drastic cuts? Or perhaps he just doesn’t care.

 

DO YOU LIVE IN NEW YORK? If you do you can tell him YOU care. You can tell him hands off the 100,000 jobs the CDPA program creates and that it is not okay to force over 70,000 disabled and/or senior new yorkers out of their homes, out of their communities, and into institutions and nursing homes.

You can reach his office at: 1-518-474-8390
Twitter: @NYGovCuomo
Facebook: @GovernorAndrewCuomo
Web: https://www.governor.ny.gov/content/governor-contact-form

DO YOU LIVE OUTSIDE OF NEW YORK? If so you can share this on social media (tagging him in your post) so he knows that the people are aware of this and they are not having it. Let him know, this is not okay.

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Michele Kaplan (or @RebelwheelsNYC) is an intersectional activist, artist, writer and youtuber, currently exploring the art of effective mostly bed bound activism and self care in the age of Trump – and now Cuomo.

Published on August 13, 2019