Incorruptible Mass
Incorruptible Mass
22. Disability rights: We need more funding for independent living, esp under COVID
Jordan Berg Powers, Jonathan Cohn, and Anna Callahan chat with Harriotte Ranvig about Massachusetts politics. This is the audio version of the Incorruptible Mass podcast, season 4 episode 22. The video version is available here.
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Anna Callahan 0:00
Hi everybody, this is Incorruptible Massachusetts. Our mission is to help you understand state politics. So we go over why it's so broken, what we could have in our lives if we fixed it, and how you can get involved. Today we are speaking with Harriotte Ranvig, who is a disability rights organizer extraordinaire. And before we introduce Harriotte, I'm going to go ahead and have Jordan Berg Powers and Jonathan Cohn introduce themselves. Jordan.
Jordan Berg Powers 0:29
My name is Jordan Berg Powers. I use he him and I have several years of experience in Massachusetts politics across the state.
Anna Callahan 0:36
And Jonathan.
Jonathan Cohn 0:36
Jonathan Cohn. He/him, based in Boston, I've been active on a number of issue and electoral campaigns here in Boston.
Anna Callahan 0:46
I am Anna Callahan. She/her, here living in Medford. I'm very interested in fixing up our state making it really represent who we are. So Harriotte Ranvig, I would love for you to introduce yourself and Mass Adapt, and a little bit about your personal history too.
Harriotte Ranvig 1:03
Sure. My name is Harriotte Ranvig. I've lived in Somerville since 1983. And I happen to have become blind. By the age of 14. I grew up in South Georgia, I was fortunate enough to get homeschooled by my parents for five years, ended up being also fortunate enough to go to a private high school, very small in New Hampshire, and be the first blind student likewise in my undergrad at a small liberal arts school called Antioch college. Two of my five years I spent in Germany studying literature, and working with multiply-disabled children. So that's just the first little quarter of - no, third of my life. I'm 75 years old. And so I've also had the good fortune. I'm a musician. I've been a massage therapist. I am what's called an ethno musicologist, which means music and culture. And I have performed the music of North India. I also have done disability advocacy, off and on since 1985. And I've also worked with women coming out of our criminal justice system to aid them in education and vocational opportunities. I spent a good deal of time raising my two children, one adopted daughter from India. And then I got much more actively involved in 2013. I was invited to participate in a brand new chapter of National Adapt, which is Mass Adapt. National Adapt, started in a very informal way with a handful of people in Denver, Colorado, chaining their wheelchairs to transit buses, and themselves to their chairs for two days just after Fourth of July 1978. And that was the beginning of the movement, so that we would have accessible buses around the cities of the United States. Also, many of these people were the original writers or beginning of writing the Americans with Disabilities Act. So there's quite a long tradition of nonviolent action, carried to different cities. I participated in and been arrested in Little Rock, Arkansas, I've been arrested by various police in the gallery, when they when they shot down an amendment in the last four years for small businesses to be accessible. I've been arrested in the rotunda with 40 other people making enough chanting noise to stop the first vote of the ACA in 2017. So this is a little bit of background. So Mass Adapt, not only joins with National Adapt for actions, but we do our own actions here.
Everything from, you know, going to protest issues of access to various agencies and businesses to sitting in with National Adapt to protest when Charlie Baker five years ago wanted to reduce the number of personal care hours for people who are disabled, many of whom are actually working and without personal care they could not work and would often land up in nursing homes. And that brings us to the crux of the problem. Nursing homes have wings for people who have been injured and have to get rehab. But if you are already disabled, and your care level goes down, you can land in a nursing home. If you don't have family, friends, and other means to get yourself out, you can be trapped in that nursing home. And probably under the radar is the fact that a third to a half of the deaths that have occurred in those 700,000 deaths in the United States from COVID are people with disabilities, not just old guys like me who, you know, well, they don't have to live too much longer, you know, whatever. Nursing homes, and the fact that the majority of Medicaid funding goes always to private, and, you know, public nursing homes, too many of them are private. And so that's sort of my beginning. And I'm happy to carry on. And also, here's some responses to
Jordan Berg Powers 6:08
I want to say I think people people don't know, so I just wanted to highlight for you that we think of nursing homes, and we think of these, these care centers as just age restricted, like you have to be 68, 69 or 70. and above. Can you just highlight again, what the point that you've made because I think it's an important point.
Harriotte Ranvig 6:26
Yes, you could be 12 years old, or 14, and on the street, let's say in Mattapan, or someplace, you know. And you get shot, and your spinal cord is injured. They have no problem keeping children in nursing homes. No problem at all.
Jordan Berg Powers 6:48
And once you get in unless you have a strong advocate it's really hard to get out because they want to keep that money. That's a good money flow for that facility.
Harriotte Ranvig 7:01
That's right. That's right.
Anna Callahan 7:02
And that's my understanding is that a lot of the work, especially during COVID, that a lot of the work that Mass Adapt, I mean, we could go on for many episodes on the work that Mass Adapt does, but but during COVID there was an effort to help for there to be funding for people to have care outside of congregate settings, right? A congregate setting means you're inside of a nursing home, you're sleeping in a building with other people, and you have care attendants who go from one person to another person to another, which is really bad in terms of spreading COVID. It's like a recipe for spreading COVID. And as you said many, many of the deaths that have happened have been in congregate settings. And so my understanding is Mass Adapt has really been trying to get funding for people to have personal care attendants that can help them lead their lives outside of these very dangerous congregate settings.
Harriotte Ranvig 7:58
That's accurate. And we have made some great deal of progress since the 70s in that we have five or 10 independent living centers around Massachusetts. The first being established in Western Mass called Stavros. But the problem is, if the funding is too restricted, aiding people and their transitions out of nursing homes is difficult, and preventing them from going into nursing homes is difficult. And then you add disaster relief to that and you've just got another layer that is very intense. And the other point I wanted to bring out, which I'm sure Jonathan and Jordan and you all know, that I didn't know until I started working with Adapt, is we do get a big chunk of Medicaid for our state. And with the American Rescue Act as well. However, usually massive amounts, I mean, always massive amounts will go to supporting nursing home patients or people, right? And so the tidbit that's left over for personal care attendance is inadequate. We have 91,000 people using wheelchairs, probably a third of which are using power chairs. So that's another area we need the Medicaid funding for. Think about it, you know, your car costs x ,your bike costs x, you know, but a power chair, they say bare bones is $5,000 to $10,000. No it's 20,000 and most of our bodies, if you've had a broken neck or whatever, you have to have all kinds of other customizations to your chair. So it can cost 50,000 or more. And in this rescue package, they were saying, oh, well, we could give you... You know, the state government gets to put its stamp on it. They say I think we could give you one and a half million dollars. Plus we might give you another million for the first year. And then you'll get another million after that until 2024. You know, so the figures don't work. Just incredible. And that's why I got on a hearing. Go ahead.
Jordan Berg Powers 10:33
And who was it that made that proposal?
Harriotte Ranvig 10:38
I would assume HHS.
Jordan Berg Powers 10:41
So the baker administration is the...
Harriotte Ranvig 10:44
Yeah the Baker administration, hand in glove. And in fact, thanks to Pat Jehlen, my senator, being on the Joint Finance Committee, I squeaked into the last hearing. And I did hear your podcasts on the sort of need for hearings, but the uselessness of them in that they go for seven and a half hours, and I stayed on the entirety of it to make sure I could speak. Yeah, they may all get recorded. But who in the world has time to listen to all of them? And make notes? So? Yep, I don't know if it's just window washing. And maybe it is. But there you are.
Jordan Berg Powers 11:31
And I think it's important, because there was a lot of media coverage and push that Baker should just get to spend the money however he wants. And I think it's important to note that when that happens, it reflects his values, which is, you know, corporations get money. You know, health insurance gets bank rolls, right? The private side of this gets the money and regular people don't - the people who need it. And so that's why it was so important that we have democratic oversight for this process.
Harriotte Ranvig 12:02
That's right. That's right. That's right.
Anna Callahan 12:06
There's one particular congregate setting that I know Harriotte, you have spoken about and that Mass Adapt has been working on and that's the Judge Rotenberg Center, do you want to give us a little intro to that?
Harriotte Ranvig 12:20
Sure. Way back when I was working at Mass Office on Disability as a client assistant advocate, we were basically the people who negotiated between the two major rehab commissions: the Mass Rehab Commission for everybody but blind people. And then well, there were three - there was a Commission for the Deaf and Hard of Hearing, which was almost brand new at that time. And then there was a Commission for the Blind. And so we negotiated when people were not getting appropriate, necessary services. And while I was working there, I learned of the Judge Rotenberg Center, which had a different name, which was in Providence, Rhode Island, and we have a Disability Law Center, they managed to get that thing shut down because they use these horrible aversive treatments, like spraying ammonia, water, and in in kids faces and they're trying to control/pattern kids with deep emotional autistic disabilities. They moved to Canton Massachusetts quite some time ago. Though they are not getting funding for Mass Students to go there, they call themselves a school. They have horrible shocks, which are at a torture level. And somehow New York state funded by Medicaid is sending young people, mostly of color, to the Judge Rotenberg Center. So Mass Adapt in conjunction with maybe eight or ten other chapters of National Adapt, we literally invaded their campus. And they were so afraid of the media coverage. Mind you, we had to charter a train, we had to walk and roll out three miles. They were so scared when we literally managed to get all the way to their campus into their main admin building that that though they came out and grabbed one of our leaders by the necktie, they didn't charge us though the police came out, because they didn't want to have to deal with the publicity.
Anna Callahan 14:43
This is a place that it was in Rhode Island. Adapt managed to get it shut down in Rhode Island because of the abusive, quote unquote treatments that they do to the kids that go there. It opens up in Massachusetts. Adapt again has a win in ensuring kids from Massachusetts are not allowed to-
Harriotte Ranvig 15:09
First they were until we advocated and shut that part of it down unless they were private families paying for their kids to be there.
Anna Callahan 15:22
So a lot of amazing advocacy work that you've already done. And yet, this is still an institution in the state of Massachusetts doing this and, and adapt is still working to really have the whole place shut down.
Harriotte Ranvig 15:37
That's right. And we even had to go to the head of the FDA and we vigiled outside of his house in DC. And because Obama had said it was banned and put regulations which the FDA would not publish. So you know, goes on and on and on. And we've been out there just with Mass Adapt, as well as recently as just before COVID. And they had signs all over their property, 'trespassing'. So we just stood across the road, and stood with all of our stuff, and the police welcomed us, they know it's a hellhole. And I was also mentioning before we started that the now retired/out of office Jeff Sanchez, did his best to make sure his adult nephew who had been abused there for years into docility would be the proof that the therapies there were good so that the bill to stop it would not go through. And that, of course is now history, but we still haven't managed to get our bills through.
Anna Callahan 16:59
Any comments from my regular peanut gallery?
Jordan Berg Powers 17:02
So just to clarify, there was a bill that we couldn't get through his committee. And his excuse for the reason that this torture center should be allowed to move forward is because he claimed that there was one person that it was helping, who was related to him, essentially.
Harriotte Ranvig 17:22
Yeah essentially, I mean, other people came and protested to the contrary. And it wasn't a seven hour hearing, it was more like a two or three hour hearing. Because for some of us who are disabled to get into the statehouse, and onto the hearing list is problematic, you know, so we didn't have zoom, then, you know,
Anna Callahan 17:42
I loved something that you said. I think you said it before we hit record. And if you already said it, then I'd love to have you repeat it. When you were in Germany and taking care of disabled kids you had a realization about...
Harriotte Ranvig 17:56
Oh yes, I didn't say that yet. I started when I was 16 for three months as an intern in Aberdeen, Scotland with a network of schools called Camp Hill. And so I wanted to work in Germany as well as an intern, and I connected with a sister school. And the way people with disabilities are related to is that regardless of physical or mental disabilities/distortion, there's a whole human being inside of each of us. And that was named or shall we say, exampled for me, with all the adults that I met, quite a lot of international people, who worked in these places.
Anna Callahan 18:45
Yeah, that is beautiful and I think really speaks to this Judge Rotenberg Center question. You know, yeah, that these kids deserve to be treated well.
Jonathan Cohn 18:54
I can tell folks are interested in the bill for this session to ban the use of aversive therapy is H.225, an act regarding the use of aversive therapy by Danielle Gregoire.
Harriotte Ranvig 19:10
Oh good. And Daniel Gregoire is who represented...
Jonathan Cohn 19:14
She's the state rep from, is it Marlborough, Jordan? Marlborough or Westborough.
Harriotte Ranvig 19:21
Good. Oh it's Danielle? And the last name again?
Jonathan Cohn 19:28
Gregoire. And H.225. Currently has had a hearing yet but has been referred to the Committee on Children, Families and Persons with Disabilities.
Anna Callahan 19:42
And Harriotte, you've spoken already so many times about when you've been arrested in different places and doing different actions and how Mass Adapt and National Adapt, have and even outside of Adapt. I know that you have your own separate activism that you have worked on. I would love for you to just talk for a minute or two about nonviolent-action. And the times when you have seen it really succeed.
Harriotte Ranvig 20:09
Yes, yes. Well, the one of the times that was really in the last five years, it struck me particularly. Well nonviolent civil Disobedience is something that's been around for a very long time, even before Gandhi, but Gandhi made it famous. So in 2016, Baker and the Executive Office of Health and Human Services made an executive decision that people who are living at home with personal care attendants should need only 40 hours a week. And that is ridiculous. If you are a quadriplegic, and you need to be bathed and toileted daily. And you may work a full time job, such as my friend Michael Muehe, a retired director of the Cambridge office for persons with disability for 20 odd years. You need 60 hours a week. So if we were to accept that limitation, that's the kind of thing that would put people back in nursing homes. So what we did, we united with National Adapt, and took maybe 100 to 150 people and to Ashburton place, a 21 storey state agency building, and we had a conference set up with Mary Lou Sutters, the head of Executive Office of Human Services. And she talked to us very sweetly. There were about 10 of us in her lobby at that point lobbying. And she said, 'Oh, I'm so glad you came.' And then she went away. She said, 'Oh, I'll listen, I hear what you're saying.' She went away, completely uncommitted to what we had to say. So we had people manage to block all the elevators. And that's a big building. And we shut down the building. And I think, though we weren't that many people, as I said, maybe some maybe 50 or 70 people outside maybe 50 people inside, it was shocking enough. And embarrassing enough, that Baker reneged on the 40 hour limit. I have to say, that kind of direct result is not so common. But it worked this time, and, and what Adapt and you know, other other disability groups who unite with us, what we're committed to, is continually demonstrating or making ourselves visible, so that the public remembers that disability is a club that is not discriminating. However, it is always going to affect people of color, and people who have too little income far more than white folks. So that's the ugly reality of it all. I'm very passionate about this as you can tell.
Anna Callahan 23:53
We love that. So one thing I want to highlight is you're talking about in 2016 really fighting for people to be able to have lives outside of nursing homes. And so when we talk about it being especially important under COVID, I would love to hear you talk about what the importance is of being people being able to live independent lives. I'm not talking about COVID, right, obviously under COVID, you know, leads to horrible, horrible things. But talk about the importance of people being able to live outside of nursing homes and congregate settings.
Harriotte Ranvig 24:34
Well I think the huge story. which is an invisible story for most of us is that, ironically, any of us has the right to get nursing home care. But we don't yet even with the Americans with Disabilities Act and the Olmstead Act, have full rights to live independently in our own communities without being segregated, for example, seniors shouldn't be segregated. Nor should people with disabilities be segregated, right. But the awareness that we don't have the right, and also the awareness that it is far cheaper for the budget, to have us be in personal care at home, even including our wheelchairs, and our Hoyer lifts, and everything else that we may need, than to be in a nursing home, you know, $75,000 to $100,000 a year coming out of that Medicaid from people's hard earned money, right?
Anna Callahan 25:41
That's right. The nursing home industry, I'm sure has a lot of lobbying dollars to make sure that that money is going to go to them.
Harriotte Ranvig 25:50
That's right. In fact, in my first arrest, I was sitting in at the Arkansas nursing Home Association. And they were so confused. They'd never seen 200 people in wheelchairs around and then we'd just occupied the place and they were dumbfounded. And mind you, do you think they have enough accessible sidewalks? That means you have to roll around on the streets, and that makes you arrestable. Wow, they don't like it. There's more and more to be done. And, of course, we know from the terrible example of the Soldiers' Field home, which has kind of avoided litigation. But I think it's still in the process of being litigated for the first real pandemic load of deaths in a nursing home. But we just can't even get a real figure on those deaths. So keeping people out of nursing homes is enormous. I mean, you know, we should be funding the personal care, I mean, the independent living centers in a far greater way than we do. So ask me more questions. That's as far as I could say, right now,
Anna Callahan 27:13
Harriotte, I could talk to you forever, we could all talk to you forever. It's, it's really, both fascinating, and just just riveting even to hear your personal stories. I'm going to go ahead and close this out, because I know we're coming up on time, Jordan and Jonathan you have any final thoughts?
Jordan Berg Powers 27:36
Thank you for your time. And I just think there's something really important, I think, underlining the message that you have for us today, which is that government's role in this is to facilitate people getting to make their own decisions and giving them opportunities to excel and o help them get the things they need to excel, right? If you need somebody to be at home with you as a personal care attendant, so you can live your life to its fullest then that;'s its role instead of seeing disabled people as cash cows, which I think is currently the way they see them, not as people, but as an opportunity to make money. And it needs to be that we see them as people, and we need to figure out how every single individual gets what they need to thrive.
Harriotte Ranvig 28:26
Yes, yes. Because we all deserve quality of life, as best as you can get it.
Jordan Berg Powers 28:31
Right. Yep. Amen.
Anna Callahan 28:33
I think it's good for people instead of money being here.
Jordan Berg Powers 28:37
Yeah, to bring it back around. I think that's what it was that underlies it.
Jonathan Cohn 28:41
A lot of this discussion reminds me of one book. It's called The Poverty Industry by Daniel Hatcher that looks at some of those nursing home schemes and other ways that you often see state governments and private industry kind of working together and diverting money away from those that need it most. One, thank you, again, it's just been fascinating. And also, it's deeply impressive about all that you and other activists have been able to do. And one of your later comments just reminded me of the way that's the right kind of activism, especially as a protest function to be able to make it visible when others would rather stay invisible. And that element of organizing and simply being present in a space so that there is a problem that they cannot kind of brush aside. And then they have to actually face the problem and force it to a resolution.
Anna Callahan 29:42
Thank you. That is such a key point. We are here. And we're here to represent even if we're a small body. One out of five Americans has some disability or other visible or invisible, denied or acknowledged There you are. Thank you for the opportunity to share.
Harriotte, thank you so much. What a pleasure. We will talk to everybody next week. Great
Transcribed by https://otter.ai