hello lovely peoples, I'm Michele, this is my wheelchair Betty, and you're watching Rebel Wheels NYC
and today we're gonna talk about... stuff. and it's gonna be about the time they
tried to force me into a nursing home. alright. I can get through this
story. it's not that I don't want to tell the story because obviously I'm doing it.
no one is forcing me to tell the story. I think it's an important story to tell. but is
it a topic that I like revisiting? no. is it still something kind of still haunts me a
little bit to this day? yes. so, if you follow the show, you know that
I... my brain often or sometimes has problems processing things in real time
and there's there's a delay in processing things. sometimes it's not at
all. my brain's like "pow pow pow what's up people? I'm the brain
processing real-time feelings about myself. it's a good day" and sometimes
it's a little minor delay, a moderate delay and then every once in a while, though not so
much uh... these days, a more severe delay. so, uh yeah. at the time I was living in an
apartment that was not wheelchair accessible, so I need to find a new home.
I needed to go from Medicare HMO, so I currently... what I had at the time rather and
to straight Medicare, because Medicare HMO would not cover the wheelchair.
basically the HMO that I had at the time, basically it would give you a wheelchair
if you're paralyzed and couldn't get out of bed, but as long as you can get out of bed,
you didn't "need" a wheelchair, whereas with straight Medicare you could get a
wheelchair. so I had to figure that out and then my brain went *fart noise* and I had this
not like... it didn't make that noise. that would be like "uh oh. call the doctor."
and then I had a severe medical setback.
you know, my body was under a lot of physical stress, because I had no choice
but to walk around my apartment. and I was limping very slowly. a lot of times
I would just fall down because walking all the time wasn't always an option anymore.
it's... that's where things were at. so, if you are Medicaid, they will give you a
caseworker. that seems to be, from my understanding. if you're on Medicare, you don't get
a caseworker. not by default. what you can do is
find a social worker who takes your insurance. so, I ended up going to this
one person who said "yes, I am, not only am I a therapist, but I also have
experience with people with disabilities. I can help you out. I want to help you out."
see, now I know. processing disorders. that's a thing. they're pretty fucking
common. back in the day, I thought I had this rare brain, I was the only person
who had this and I didn't know that it was a processing disorder. didn't know that was
a thing, and so I thought I had like amnesia. like everyone thought I had
amnesia. everyone thought I was just forgetting things, which is not the case. I do not, I was not
forgetting things, I just don't always process it and come up with the answer
in real time. so you know, I... I just I basically when I saw her, I just broke down
and started crying, because she was talking to me, and I was struggling to
process what she was saying. I'm struggling to like answer her, and you
know, it was like "okay, don't worry I'm gonna help you. I want to help you". she
did... help me, in ways... in ways she helped me and in ways she fucked shit up. Um, it
was one of those things. on one hand, like when I went to my neurologist, at the time that I
had, she'd come with me. yay! but when she did that, the doctor and the social worker,
would talk to each other about me, but never include me in the
conversation like I wasn't even in the room. nay! nay? I don't know why we're going all old school here, but eh whatever.
she and the neurologist arranged for VNS, which is visiting nurse services to come to my home
and that did provide me with a home health aide, who helped me...
well, basically she didn't help me, she cleaned up my apartment and kept it tidy and also
helped me with any cooking that I was having problems with. yay! and they also provided
me with a physical therapist which was nay!
because after maybe a half an hour to an hour of seeing me, this physical
therapist said "you're never gonna get better. ever. so, just give up" and you
need to get... your only chance is to move into a nursing home. and I said to her, I
mean 1.) I was like that sounds... like weird because first of all, again, she just ,
like met me. she's seen me for maybe a half an hour to an hour. 2.) but then
also it's like, it's like, I know my body. listen, I never... when I have a setback I never
get back to fully where I was before the setback, but if I work on things cognitively
and physically, I can get things back up to a point, uh close to that point, where I was.
but she didn't, she was like "lalala" [not listening] you need to be nursing home. and what happened was, I was
relying on the social worker to help me find a new apartment
that was wheelchair accessible, but what was happening is that instead of her looking
for apartments, which I thought she was doing, all she was doing was looking in
to um, because basically the physical therapist, social worker and the
neurologist I was seeing at the time, all agreed I should be in a nursing home. there's no way I can
live on my own. um, which I'm doing right now and I've been doing for years. but...
spoilers. so I thought she was looking for apartments and turns out she wasn't. all
she was doing was collecting brochures for nursing homes. and I was so upset and so
crushed because I really thought like she was gonna help me. I think in her
mind, she thought she was helping me, at the same time, or well she wasn't, but
then, two it's like she wasn't being honest about
it, you know. I wish she had said "hey you know what? I don't think you should be living on your
own. I don't think you can do that. I don't feel comfortable as your social worker, finding you your own place
but I will help you find a nursing home. instead of saying "oh yeah I'm looking looking, I'm
looking" and then being like "surprise! nursing home stuff!" and I think they were
sort of hoping, that I'd be like too much in set back mode and too cognitively, like
sploot [cognitively impaired] to do it on my...it's like to find my own place and I'd have no choice but to
rely, in a nursing home. which is really really shitty. I also found out from the
occupational therapist, and basically he told me that, it's... it's kind of common in
the industry, for peop... some people to push for patients to move to nursing homes
not because that's what's best for them, but because this way,
should... I, you know, fall but I'm in a nursing home, that physical therapist
cannot be held legally responsible, so there's often a push for what's best for
the physical therapist, and not what's best for the patient. and I was like wow.
and after I heard that, I basically refused any more physical therapy.
I'm not gonna see her anymore. and after, at this point, I have been kind of...
doing my own cognitive exercises and getting to a place where I was able to
process things more in real time. I think the fact, that I did have a home health aide,
that was cooking and cleaning for me, did give me a chance to kind of rest, but
also kind of put my energy towards physically getting stronger. and I did get to
the point where, barely and I struggled, and it caused, I had a setback after
I moved, basically I found my own apartment. and I also found out that
they can't.. they couldn't because I'm on Medicare, they could not legally push me,
force me into a nursing home. my mom was against it. she's like "no, she can live
on her own. she just needs, like... like help and that's a motorized wheelchair and
the occasional home health aide." that's really what I needed at the time.
but the thing is, if I was not on Medicare and I was on Medicaid and I was in need of
long-term care, meaning I need someone to come on a regular basis, they could very
well force me into a nursing home and I wouldn't really have a lot of rights to
say no to that. so, what... when my friend Gregg came over and we made a video about
ADAPT, which is a really awesome disability rights activist group, um, one thing he
did talk about was the D.I.A and the Disability Integration Act.
GREGG: the main focus of ADAPT for roughly the last... 30 years... you know, 27 years and change has been
G: getting people out of institutions and into the community. and so um, one of the
G: ways we've been trying to do that is to push laws, recognizing, you know, that
G: people have a right to be in the community. there was a case, in... in, that came
G: out of the Supreme Court in 1999 Olmstead versus L.C.,
G: that was the first time that the Supreme Court recognized that disabled people
G: had a right to live in the most integrated setting appropriate.
MICHELE: but basically what happens it's like, any state that has Medicaid... this is to my
understanding and hopefully I'm getting this right,
every state that has Medicaid, offers long term care. however there's two forms of long
term care. there is like community-based or like home-based...um, long term care and then
there's institution based long term care. and what happens is that, because the way
things are right now, they cannot cut funding for institution based long-term
care. however, as gregg was saying, one of the first things to go, when there is
need for budget cuts, is the community-based long-term care. which
means people are being forced... and are like that... forced into nursing homes and
institutions. and... and who live could live at home if given the proper accommodations and long term care
G: who could live at home instead of a place where they don't get to pick their own
G: meal time or who gets to visit them or when they have guests. So, the D.I.A is centered
G: around getting people into the community. it basically says that if you are
G: offering long term supports and services, you must offer them in the community
G: setting. we worked with Senator Schumer and Representative Sensenbrenner to
G: draft, which is the Disability Integration Act or D.I.A.
MICHELE: so that's it. that's my story. I want to share it. please take action and together we can change
things 'cus it doesn't to be this way. take care. bye.
GREGG: I mean, who doesn't want to live in their own home?
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