Jennifer Mathis
March 24, 2020 - 2:00pm to 3:00pm

Joyce welcomes Jennifer Mathis, deputy legal director and director of Policy and Legal Advocacy for the Judge David L. Bazelon Center for Mental Health Law to the show. Ms. Mathis will share advice and suggestions for those dealing with mental health issues, post-traumatic stress disorder (PTSD) and employers dealing with increased anxiety due to isolation working from home

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Transcript

BENDER CONSULTING SERVICES

MARCH 24, 2020

BENDER PROGRAM

1:00 PM CT

 

Services provided by:

Caption First, Inc.

P.O. Box 3066

Monument, CO  80132

800‑825‑5234

www.captionfirst.com

 

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This text, document, or file is based on live transcription.  Communication Access Realtime Translation (CART), captioning, and/or live transcription are provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.  This text, document, or file is not to be distributed or used in any way that may violate copyright law.

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>> Joyce bender:  Welcome to the show, everyone.  I know we're going through such a difficult time.  And I am ‑‑ and we are Voice America working to help you in any way we can and specifically in my case to people with disabilities.  You all know for the past 14 years Disability Matters with Joyce benders has been an effort to bring education, information, quality of life to everyone living with disabilities and awareness.  Now we have to use this platform because it is the platform that is national and international for people with disabilities to get information out to them. 
       If you missed last week, Maria Town the CEO of AAPD and Kelly Buckland the CEO of NICL were my guests and ‑‑ oh, my goodness they brought important information.  Both live with mobility issues.  I would suggest that you go back and listen to that show.  Subscribe to this radio show to the podcast on Apple or Spotify or Stitcher make sure you get it.  We want to get the news out.  We want to get this information out to all of our brothers and sisters living with disabilities.  Share it.  Make everyone aware so we can be sure everyone gets the most news on time as they can. 
       So today I am ‑‑ I've got to tell you.  I met Jennifer Mathis years ago.  From that day forward I knew this woman is smart.  She's really smart.  She's dedicated.  She is passionate about people living with mental health disabilities, all disabilities, but this is her area of expertise.  And when I had a question, that's who I would call.  Any national issue, whether it was during the gun violence where they talked about people with psychiatric disabilities, no matter what it was, I would pick up the call ‑‑ the phone and call Jennifer. 
       She is so highly thought of nationally, really as a disability rights voice for people living with mental health disabilities.  She is the reason I am on the board of Bazelon Mental Health Policy that she works for.  You need to listen carefully to this program. 
       Welcome to the show, Jennifer.  How are you? 

>> JENNIFER MATHIS:  Thank you, Joyce.  I'm good.  I'm hanging in as we all are trying to do. 

>> Joyce bender:  Well, you are today to be a very important voice for many, many people because as you well know, people with mental health disabilities are going through such a time. 
       We have this emergency in our country right now with COVID‑19.  I thought maybe that first you could talk about ‑‑ tell our listeners what we are doing at Bazelon to ensure the rights of people with mental health disabilities to make sure they're treated equally during this time. 

>> JENNIFER MATHIS:  Sure.  So we've been, I feel like doing COVID‑19 work almost round the clock these days.  There are several different types of things we're doing.  First and foremost we have been very focused on these legislative vehicles that these bills that are moving through Congress because that has the potential to provide a lot of leave for so many different segments of society, address so many different issues where people are hurting and in danger right now.  That has been a really difficult process as anybody who is following it knows.  And we're now on the third legislative bill and negotiations have broken down a couple of times.  And they're continuing.  Let's hope that we can get something out soon.  And I think there will certainly need to be more bills.  I will talk a little bit about some of the things that are in those bills, some of the things that may not be in the bills, the things that have been tossed around and considered. 
       Another thing that we're doing is we're continuing to do our cases that we've got.  We've got a couple of existing cases where we're enforcing the rights of our clients.  In many of those cases in pretty much all of those cases it's a whole new ball game now.  It's a whole new world.  And I think we're all struggling to figure out how to ensure that their rights get implemented and enforced in this environment.  It's really ground so many things to a halt. 
       We have all of these community integration settlement agreements.  We've had thousands of people with psychiatric disabilities who have been transitioning out of institutional settings and into the community.  Now, all of a sudden, everything has stopped. 
       It is a disaster because community providers are not able to serve all the people they need to serve given the current restrictions on them in many cases.  People are just not moving out.  People are stuck in institutions.  Institutions may be death traps right now.  And we're all trying to figure this out.  And what can we do with telehealth that isn't already happening?  And how can we greatly expand that?  What changes do we need to make to ensure that people can get what they need? 
       And then thirdly, I've been spending a fair amount of time on another important issue, which we can talk about later on, about rationing of medical treatment of life saving treatment for people who have COVID‑19 as we have seen in other countries, we may be headed pretty soon to where some of them have been where we're overwhelmed in our hospitals, and we clearly don't have enough resources.  We don't have enough ICU beds.  We don't have enough ventilators by any stretch of the imagination.  And what many systems have done in those circumstances is adopt rationing systems where, if not everybody is going to be able to have their life saved, then you need to figure out who you're going to give the treatment to.  As with so many other things in life, what has happened, I think historically when people have implemented those type of rationing schemes is that disabled lives are devalued, and people with disabilities are often left to die because people think that their lives either weren't sufficiently high quality in the minds of people without disabilities or that they didn't think they were going to survive.  And Lord knows how many times people with disabilities have outlived the predictions of their survivability by the medical profession.  But that is a very, very serious concern.  It's a life and death matter. 
       So we've been doing a variety of things from trying to get something into this legislation to we just filed a complaint with the HHS Office of Civil Rights over the weekend, and we have been doing other things.  We've been advocating directly with HHS to try to do a guidance and met with them.  And had sent them some principles. 
       I know NCD had gotten involved and CCD, which I was involved with as a cochair of the consortium of citizens with disabilities rights task force.  We sent a letter, which many people were very ‑‑ that was very important to HHS to try to urge them to do a guidance. 
       So some of those some of the big picture ‑‑ that's a big picture summary of things we're working on.  I could talk a little bit about some of the issues that are in ‑‑ that are tossed around in these bills if that would be useful and how they relate to people with psychiatric disabilities.  Would that be helpful? 
       (Silence)

>> JENNIFER MATHIS:  Hello? 

>> Joyce bender:  Sorry.  Jennifer, what is the website at Bazelon? 

>> JENNIFER MATHIS:  It's www.Bazelon.org. 

>> Joyce bender:  Why I'm telling you all that, I am so honored that someone of Jennifer's stature would take time to be on our show today.  She really is, though, a national leader for all of us living with mental health disabilities.  That's why I told you, make sure you share this with other people. 
       Why I asked for that website, you heard how much they're doing at Bazelon.  This isn't like a huge company.  This is very small.  Look what they're doing tirelessly.  So dig in to that pocket book, that wallet.  Make a donation today.  Get it out.  I don't care how small.  But we can't help people if we don't have revenues coming. 
       Jennifer, I would really ‑‑ I know there's so much going on right now with these bills and what happened in Washington.  So why don't you go ahead and talk about that. 

>> JENNIFER MATHIS:  Sure.  So, yeah, a lot of the issues that are faced by people with psychiatric disabilities are the same issues faced by people with other types of disabilities.  And a lot of the things that Maria and Kelly talked about, I think are issues as well for people with psychiatric disabilities. 
       I want to highlight a few of the key things that we have been focused on.  I would also say frankly there are a lot of the same issues that other broader communities are concerned about.  We have common cause with the homelessness community, the civil rights community, the unemployment rights community, and so many others.  It's been useful that everybody is advocating for so many of the same things. 
       It is nonetheless, it seems to be an endless and significant slug, and we're not getting so much of what we need.  But I would say certainly one of the most important things that is in these bills to some extent or in some of these bills, but it's just not nearly enough is support for home and community‑based services.  That is so key.  As I mentioned before, what we're seeing in our cases is that people have been stuck now in institutional settings.  It is a scary situation.  It's not only as it always has been a violation of people's civil rights that they are stuck in these institutions when they could live in more integrated settings.  Thousands and thousands of people in our cases around the country. 
       In addition to that, in the cases these institutions have become even more prison like.  Some of the nursing homes where some of our folks are in Illinois, people are not even allowed to go out the door.  They're not committed there.  There should be no restriction on them doing it, but because of the restrictions around COVID‑19, that has happened.  So they are not only needlessly segregated, they literally can't leave.  And it is run like a prison in many ways now.  And they have no prospect of getting out in the near future because everything has shut down. 
       It just makes it more and more urgent.  And the other thing I should say is that institutional settings, whether they be nursing homes or psychiatric hospitals or prisons or jails, right now are probably the most dangerous settings that one could be in terms of this pandemic.  We've already seen that one of the first places it started was in a nursing home in Washington state, that started in the US.  And so many people died in that nursing home.  It's been so difficult to contain the spread in institutional settings. 
       There started to be some cases in one of the psychiatric hospitals in Washington state.  You're starting to see some cases break out in other institutions.  And these places really, I think, have the potential to become death traps.  So it is just our usual concerns times 150 right now that we get people out. 
       It is ironic that actually if you look around the world, there are efforts, including in this country, to start releasing people from jails, people who don't have a record of violence or aren't there for a violent crime, people who ‑‑ the jail ‑‑ the correctional administrators decide if we're going to release some folks, these are the folks we think we can release right now.  We've got people getting released from jails, yet people are stuck in disability institutions and there has not been the same kind of talk about let's get lots of folks out now.  In fact, it has been so much the opposite because the community system is shutting down and collapsing. 
       So we desperately, desperately need help there. 
       The one thing I would say about these legislative pieces is that everybody talks about HCBS, home and community‑based services.  That's something that the disability community understands, a set of services where it allows people with disabilities to live in their own homes in their own communities.  We all think about HCBS and understand what we're talking about.  But with mental health, I think because the financing sometimes works a little bit differently under the Medicaid system which is pretty much the whole public mental health system is financed by Medicaid, HCBS by itself doesn't always clearly mean community mental health services. 
       So I've been a little bit concerned, and I think it's important for people to carry the message that it needs ‑‑ whatever you mean by HCBS, it needs to be clear in these bills that it's not just what we call HCBS waivers, because those usually don't include people with psychiatric disabilities for complicated reasons. 
       So there's other services.  They're funded by other parts of Medicaid.  They're not always labeled HCBS, even though the home and community‑based services.  But most of the community mental health services are funded separately under what's called the Medicaid rehab option.  I deposit want to get too wonky about it, but the point is that it just needs to be clear that whatever Congress does with HCBS it needs to be clear that it's also covering mental health. 
       So that's probably the most important thing.  I think some of the other things certainly medication issues, those ‑‑ that's an issue in these bills.  There are various fixes that people have asked for. 
       (Beeping)

>> JENNIFER MATHIS:  ‑‑ being considered, having people be able to have additional supplies of medication because, of course, the concern is people will run out of medication and usually you can't refill a prescription until you are at the end of your last supply.  So right now people are either not going to be able to get to a pharmacy, not going to be able to get their new prescription either because they're quarantined or they're sick or there's no transportation now, any number of any other reasons, or their kid is in the house.  That they be able to have more flexibility.  So that's certainly another issue that has come up. 
       Unemployment insurance, paid leave for people who have to be out of work, paid leave was addressed, paid sick leave anyway, in one of the prior bills that was passed, relief bills, but it really wasn't enough.  It was two weeks of paid leave for some people.  That's ‑‑ given how this is stretching out, I think this is not going to be nearly sufficient. 
       So I think those battles are continuing, and then there's concerns about some of the negative things that we keep hearing.  There are provisions that are being tossed around to waive provisions in the IDEA for kids with disabilities, to waive Every Student Succeeds Act which does and require goals and services for kids with disabilities in school.  Those are concerning, efforts to use the pandemic to try to ‑‑ understand why people would be concerned that it would be harder to provide some of the services that we've been providing once everybody is doing something like remote or distance learning, but that doesn't mean that you leave kids with disabilities by the wayside and say, oh, well, we're not going to educate you anymore. 
       So that's been concerning.  There were provisions that I think people were seeking to basically waive or change the ADA in terms of workplace rights, confidentiality concerns.  I guess they could ask more questions of employees with disabilities or disability‑related questions, medical questions they usually wouldn't be able to ask because it wouldn't be job‑related.  That was pretty concerning because it seemed like people were seeking very broad changes which are not necessary.  In fact, the EEOC has issued a guidance about how you deal with a pandemic and what an employer can do.  It does say employers can do certain things that under other certain circumstances ‑‑ sorry, other circumstances they might not be able to because now it would be consistent with business necessity.  So they've addressed that already.  There isn't a need to change the ADA to give employers more rights or rollback workers' rights. 
       That's a summary or sum of the highlights of what's in these bills and how it affects folks with psychiatric disabilities. 

>> Joyce bender:  Well, actually I'm going to start with the most recent thing, what you just talked about, which is kids ‑‑ children at home with disabilities.  You know, I know what you're talking about, how the Secretary of Education is trying to roll something out where there would not really be a demand on the IEP services.  What ‑‑ this was just asked of me.  What would happen?  What would happen to these children? 

>> JENNIFER MATHIS:  Right.  I have no idea what would happen.  It's a frightening prospect.  I mean, let's hope that does not happen.  Certainly folks should be aware it would be for presumably a limited period of time.  It would not be permanently changing the law.  But nonetheless, even for a temporary period of time, we could be talking about a significant period of time.  And it's obviously unacceptable for kids with disabilities to simply not be able to get any of the help that they need. 
       I think some of the answers will have to be very similar to the community‑based services issue that I was talking about before with getting people out of institutions, the community providers ‑‑ they're having to deal with a different situation where they can't have contact with people.  And their job, what they do every day in engaging people and helping people navigate different situations in the community and helping people get housing and helping people get jobs and helping people integrate and helping people build skills.  It's all a lot of in‑person contact. 
       Well, a lot of that can potentially be done remotely.  And so people are exploring more and more telehealth.  I think a lot of the services for kids in school, whether kids with disabilities or kids without disabilities, people are now doing Zoom learning.  So I think people will have to be creative and figure out how to do a lot of the services that they used to do before through different ways, through the phone and through the computer and video.  Lots of concerns obviously, lots of families don't have access to the computer technology.  It's unclear how this is all going to play out.  But I mean the answers have to be that we have to get creative about how to do things differently rather than just saying, we're giving up on these kids, and we're giving up on these people.  All we can do is just waive the requirements because we couldn't possibly help them. 

>> Joyce bender:  Well, it's a terrifying thought.  But this is why this show is so important so that you can be vigilant.  If you're a parent, you can be on this.  You know to follow.  Wait.  What are we doing in our state?  Of course, this would be federal, that you would need to know what's going on so that together we can hold the course so to speak. 
       Well, hey, every half hour we have our news break, Advocacy Matters.  And we have Peri Jude Radecic with us.  Pare, how are you? 

>> PERI JUDE RADECIC:  Hey, Joyce.  I'm doing fine.  I'm practicing, you know, what the governor is asking Pennsylvania to do which is work remotely.  Disability Matters rights for Pennsylvania is open.  Our intake system is open.  Doors are open remotely virtually. 

>> Joyce bender:  That's good for everyone to know.  That's good for everyone to understand.  I'm glad you brought that up.  Para, what do you have for us today? 

>> PERI JUDE RADECIC:  It's interesting and I want to support what Jennifer has been talking about that legislation.  At Advocacy Matters what's important is that people take action.  Always take action.  Today is an important day.  So there are numerous ways and different organizations you can go through to take action on this third piece of legislation that's moving through the Senate today.  So you can go through the Senate for public representation.  You can go through Bazelon.  You can go through the National Disability Rights Network and find an easy way to participate and take some action. 
       I think that's important.  Because, yes, we are told to participate in a community exercise of isolation.  And, yes, staying at home is an act also of community care.  But we have to do something for advocacy for ourselves. 
       Right now, right today that's going to one of the organizations that we rely on nationally to take some action on these bills that are moving through Congress and do something for yourself and for the entire community and make sure that people with disabilities are included in the legislation that Jennifer's talking about. 
       It's as simple as clicking on a link, filling out your name and address, and telling Congress to include people with disabilities, to include people with mental illness in the legislation that's moving through Congress now.  That would include increasing funding for community mental health because we've lost so much funding over the years.  So we will have a couple of actions on our website soon that you can participate in to get in to a point where you can access.  We are not expendable.  And we're not going to rest until the legislators create equity for our community throughout this crisis.  So we're going to keep posting information like other organizations, we'll have our own COVID‑19 resource.  We're working on that web page now. 
       So that's the only way we're going to make it through this crisis, and we're going to do it together.  So, really, it's important that people take action and do it through advocacy. 

>> Joyce bender:  So true.  Hey, Peri, how about giving us the website. 

>> PERI JUDE RADECIC:  It's disabilityrightspa.org.

>> Joyce bender:  What a great organization that it is.  Peri, I want to thank you for fighting the fight for all people with disabilities in Pennsylvania.  I mean, you have done so much.  I am so ‑‑ just proud to have you with us. 

>> PERI JUDE RADECIC:  Thank you and thanks for having this important topic today. 

>> Joyce bender:  Absolutely.  Thanks, Peri.  Well, Jennifer, you were talking about ‑‑ I have a question.  When you were talking about rationing, now, I'm picturing this.  I'm picturing two people with coronavirus, one 50 in pretty good health.  The other person with disabilities like ‑‑ any disability but cystic fibrosis, whatever.  Where are they going to give that help to first?  My guess it's going to be the healthy participate. 

>> JENNIFER MATHIS:  That's exactly right.  And that's what we're seeing happening in Italy and that is what is showing up in some of the state's protocols.  Some of the them have specific guidelines for crisis care standards or they call it standards when you're managing scarce resources.  And there's a number of them online.  Actually, we were following what was happening in Washington state because there were some articles about that, including a couple New York Times articles talking about what was happening there.  Because Washington state, of course, is one of the places where we have the highest number of deaths. 
       Those articles set out some pretty concerning things about the protocols.  So we looked at those protocols, and they say things like, well, in deciding who gets the treatment if there's not enough to go around, one of the things you consider is, they call it baseline functional status like loss of reserves in energy, physical ability, cognition, and general health.  So what does that mean?  That suggests if they think you don't have as much, quote, unquote, physical ability as somebody else, then you may ‑‑ that may count against you.  You may get lower priority.  What does cognition mean?  If you have an intellectual disability, does that count against you?  If you don't have what they consider good general health, does that count against you? 
       There were other protocols online from Washington that said overall survival may be qualified as healthy long‑term survival, recognizing that this represents the weighting of survival of young otherwise healthy patients more heavily than chronically debilitated patients.  Yes, if you have the cystic fibrosis or if you have any number of significant disabilities, intellectual disabilities, spinal muscular atrophy is named ‑‑ not in Washington's protocols but in some others ‑‑ certainly we know folks who have final muscular atrophy who in some cases use a vent themselves.  But they live their lives and they're good lives.  There's no reason why we should say, well, they should die so that we could give an ICU a better ventilator to somebody else instead. 
       So, yeah, it's pretty concerning.  They sort of invite doctors, it seems, to make decisions based on generalized assumptions about people with disabilities, either about their quality of life or about how much treatment they think they're going to need.  And that's pretty concerning. 
       We know this is against a backdrop of long history of bias, I think, whether ‑‑ I'm not suggesting that it is fueled by bad intent, but it is certainly fueled by misunderstandings at a minimum.  In the medical profession about the lives and capabilities with the people with disabilities.  This is a scary, scary time. 
       We have protocols online in a state that are going to be used soon, according to the press that's coming out.  And so that made many of us really anxious about the prospect of significant numbers of people with disabilities dying because they're going to get put to the bottom of the line in terms of who gets hospital beds and who gets ventilators. 
       So that's the issue.  We filed a complaint.  Did it very quickly over the weekend on behalf of the ARC, the United States, disability rights Washington, the P & A.  A group called self‑advocates in leadership.  I think there was another plaintiff.  There's Ivanova Smith who is an individual with an intellectual disability.  We challenged ‑‑ this complaint it filed with HHS Office of Civil Rights.  The lawyers are Bazelon and Sam, the center for public representation, the autistic self‑advocacy network, disability rights Washington, and the ARC.  So what we are saying is that this scheme is discriminatory, that it disadvantages people with disabilities in ways that are not called for, not appropriate.  It invites doctors to make decisions based on unfounded assumptions about their disabilities. 
       It's going to treat them essentially differently simply because they have a disability.  So somebody like Ivanova says, I have an intellectual disability.  This talks about cognition being a factor that counts against you.  I may not get a vent if I get, he COVID‑19 and I'm in the hospital.  I may get turned away.  But why should I?  There's another person, Rose, who we listed as an example in the complaint.  Rose has cystic fibrosis.  Rose says, well, they're going to say that because I have cystic fibrosis, looking at these guidelines, they may just count me out.  But in fact, my breathing capacity is actually good compared to most people's.  But they don't ‑‑ they're not going to do that kind of an assessment potentially.  They're just going to count me out based on the kinds of protocols that they have. 
       So we are hoping that HHS will issue a decision very quickly on that, because everything is moving fast.  Who knows?  But it seems that within the next month or so we could be in situations where in Washington or other states people are triaging in hospitals and they are deciding who lives and who dies.  We just want to make sure that people with disabilities don't become a big casualty of bad decision making because of the built‑in bias in that process. 
       (Silence)

>> Joyce bender:  That would be terrible, Jennifer.  I'm sitting here ‑‑ I couldn't each speak for a few moments.  I'm thinking about what you said.  I was actually speechless.  Because you know what?  That's like eugenics.  That's horrible.  It is.  It's like eugenics.  It's like, okay.  You are healthy.  You don't have a disability.  You, you do have comorbidities, you have more than one disability that includes a psychiatric disability.  Imagine if they made making decisions like that.  I mean, it just takes my breath away. 

>> JENNIFER MATHIS:  That's right.  It's interesting.  We filed a complaint at the Bazelon Center.  We filed a complaint with the American Disability Association a couple weeks ago with HHS on an organ transplant issue.  It's a similar set of issues.  It's a different context but the same idea, medical treatment in this case really scarce organs when there aren't enough to go around.  That's another area where you have the same conversations about who lives and who dies, who gets the organs, who distant?  And what kind of schemes do you use?  And I think it's an area where we have seen that there is a long history of disability‑based discrimination.  That has really gotten more attention because that has been happening more ‑‑ obviously this issue of rationing life saving treatment in a pandemic doesn't come around that often.  But the organ transplant issue is always with us.  So there have been a number of states that passed their own laws.  We think the ADA applies clearly but since that hasn't changed the world.  Some states have passed specific laws about this. 
       One of the things I've noticed is that if you look at the laws on the books now ‑‑ not the laws but the protocols in many organ transplant centers or hospitals, you'll see that a lot of them have exclusions or negative ways for psychiatric disability.  So we just had this situation where we had a woman who was trying to get a pancreas transplant for diabetes management.  It was not actually a life and death situation in her case but it's important.  And she was denied the transplant simply because she had PTSD.  It was anything about her PTSD in particular.  They had an issue with and they couldn't articulate and didn't have even any basis to suggest that it would impact her negatively.  But the decision was, you have PTSD.  You're out. 
       So certainly this issue is very real of disability‑based discrimination and these types of decisions about medical treatment and who gets it and who doesn't in a rationing situation. 

>> Joyce bender:  Terrible.  Hey, Jennifer, I want to talk to you specifically about people with metal disabilities, let's say clinical depression, bipolar, no matter what it is but that are at home isolated.

>> JENNIFER MATHIS:  Yes. 

>> Joyce bender:  What suggestions do you have?  Because as you know, that can actually ‑‑ that can be a life or death situation for those listening ‑‑ for the people listening to the show right now, what advice do you have? 

>> JENNIFER MATHIS:  I think probably the most important thing is each if you are physically isolated, you know, you don't have to stay socially isolated.  And you can reach out to people, and you need to stay connected to people.  We all should be doing that right now.  Somebody recently suggested ‑‑ actually I think it was Mark Salzer at Temple University who said we shouldn't be saying social distancing.  That's the wrong word.  We should be calling it physical distancing because we really don't want to be doing social distancing.  We want to be doing social connection.  Yes, we may need to have physical distance and physical isolation, but that is very different than social isolation which is incredibly damaging.  So let's not let our physical isolation become social isolation.  I think it was such an incredibly important point.  And I hadn't thought about it that way.  Then right after he said that, the World Health Organization came out and said something very similar.  That's an important point because you're isolated in your home and we're used to seeing people and spending time with them physically doesn't mean that's the only way we can connect to people.  It is important to connect other ways. 
       You know, I think that this is the key to good mental health services really is connecting with people.  And whether it's people with mental health issues that aren't necessarily that significant on the spectrum, people who are going to therapy or seeing a counselor or people who have very significant issues who are receiving peer support services in a crisis or people who are getting supported employment services or people who are under ‑‑ doing something called motivational interviewing where often people who have lived in an institutional setting for a long period of time, it's hard for them to even envision what life is like to live in the community anymore. 
       So to help them think what their desires are and get in the community.  It's a all about connection.  It's all about developing relationships and we have all these fancy names and structures for our mental health services, but really, you know, at the core it is all about relationships.  It's all about social connection, building relationships, trust with people, having people that you can talk things through with, that you can disclose information to and feel comfortable about it and have help working things through.  So it really is, I think, the key whether it's a significant psychiatric issue that someone is dealing with or, you know, something a that is just the ordinary person going to counseling.  It's all really important to maintain social connection and not isolate ourselves even if we're physically isolated in our homes. 

>> Joyce bender:  Don't you think it would probably be a good time to either use the phone like calling someone or even better yet FaceTiming versus just texting?  I saw you mentioned that on the Bazelon site.  And I can see why you did.  I can't believe when you talked about that social distancing, the first time I heard it was a month ago from a friend of mine, Richard Roberts who works for an embassy in okay that with a.  He wrote many books on vocabulary and communication.  He sent me an email and said, I wish they would call that physical distancing.  So now when we all think about it, I can see why did we do that? 
       What do you think about that?  Don't you think that people should try to, you know, actually talk on the phone or What's App or FaceTime, whatever? 

>> JENNIFER MATHIS:  I did.  I think it's whatever works for people.  I think that texting for a lot of people is kind of ‑‑ it's not as rich a communication method as others because it's, you know, it's hard to text fast.  It feels more limiting.  On the other hand, some people actually communicate better that way or more comfortable.  So, you know, I don't remember ‑‑ I think I have ‑‑ I may have sent you something for mental health America which has tips on communicating with people and staying in touch and relaxing and all of that.  But I would say that in terms of texting versus calling or whatever, it really just ‑‑ it seems like ‑‑ and I've certainly learned from generations younger than I that people have different ways than I do of communicating or relating to people that they prefer. 
       So I don't know.  I don't want to be prescriptive.  Basically whatever makes people comfortable and there are some folks who because of a disability, because of autism or something else, they don't like to talk on the phone too much.  So whatever works for people really.  But the important thing is to stay in touch and there are a couple of New York‑based mental health coalitions that yesterday put out something called Strive for Five which was a set of principles I liked that basically says we're going to have goals of connecting to five people that are important to us every 30 days or something like that. 
       So having those kinds of goals, I think, and making sure that you stay connected is important for some people.  They might want to do a lot more than Strive for Five or not so much.  But it is just important to, I think, maintain the contact that you need.  And it shouldn't ‑‑ it is harder when you're physically isolated, but it is not impossible. 

>> Joyce bender:  Well, what about people that now are having a hard time with a therapist meeting with them? 

>> JENNIFER MATHIS:  Yeah.  I do think that is a problem, and it is going to become more of a problem I have also seen people with the opposite problem where a therapist or a psychiatrist is saying, you have to come in person and meet with me because I'm not going to renew your prescription or I'm not going to continue seeing you if you don't show up in person.  And that also creates problems for people who feel not safe.  I'm going on public transportation right now or literally I can't go on public transportation right now because it's been cut.  Or they can't leave their homes because they're quarantined.  I think all of these things are problems. 
       I think that therapy certainly can be done over the phone.  People should be flexible.  Psychiatry can be done over the phone.  It is not the same experience, but, again, I think that we are in an environment, a situation where we need to start being more flexible doing things a little differently than we had done them before.  And get out of our box of, you know, saying we can't do it this way because we don't do it this way.  We never do it this way.  It's essential to do it always the way we've done it and start adjusting.  Because we need to do that to keep ourselves alive and keep ourselves happy. 

>> Joyce bender:  Well, first of all, Jennifer, I cannot thank you enough for being with us today.  The website again for Bazelon is ‑‑

>> JENNIFER MATHIS:  Www.Bazelon.org. 

>> Joyce bender:  Yes, with our great CEO Holly O'Donnell.  I want to make sure ‑‑ we have great so many disability leaders, Eve Hill, Maria, so many people involved at Bazelon.  Remember what I said about taking time to make a contribution. 
       You know what I was thinking, Jennifer?  This is going to be a time like pre‑ADA when Justin and Yoshiko ‑‑ and hello, Yoshiko, I know you're listening.  We all worked together in unity to get this passed.  Guess what?  This is going to be a time, you break down the silos, and we all work together because, yes, our lives do depend on what happens here. 
       So I hope that happens.  Then, Jennifer, to you, thank you for fighting the fight for people with mental health disabilities.  You do so much for this country, and I just many so honored to count you as a friend. 

>> JENNIFER MATHIS:  Oh, thank you so much.  I'm honored to be on the show.  And I so appreciate you addressing this topic.  It's so important, and this is really the time more than ever that we have to make sure that people are listening. 

>> Joyce bender:  Yes, that's right.  And also, I want to thank employment options, Wells Fargo, peoples for being a sponsor and Highmark.  Highmark has been a sponsor of this show for four years.  So thank you so much.  And thank you to our listeners throughout the world.  We have 17 countries with listeners.  China actually being the largest listener.  I want to say to all of you, when you have a disability, it doesn't matter where you are in the world, you are still our brother or sister.  And we care about you as you have gone through this terrible, and are going through this terrible crisis, but together we have a voice that can make a difference. 
       Jennifer, do you have a message you want to leave with our listeners? 

>> JENNIFER MATHIS:  Well, I would say, you know, a couple things.  One, don't stay isolated as we talked about.  Physical distancing but not social distancing.  That's really super important right now.  Number two, pay attention and advocate, advocate, advocate.  This battle is happening on the federal level.  And to the extent that people can get on the NDRN website or get on other websites to pay attention to what's coming in their email box and contact their members of Congress, that's super important.  But even after these federal battles are done, there's going to be a lot of advocacy people need to do with their states, so be in touch.  Be in touch with your local advocacy community, with the PNA, with the independent living centers, and all the local disability groups to pack together and figure out what you need to be doing.

>> Joyce bender:  And speak up. 

>> JENNIFER MATHIS:  Yes, exactly.

>> JOYCE BENDER:  You know what.  We end every show with a quote.  And, he Jennifer, hearing everything you said today, our quote today is Martin Luther kind junior who said our lives begin to end the day we become silent about things that matter.  As she's saying right now, don't be silent.  This is Joyce Bender, America's voice where Disability Matters at VoiceAmerica.com.  Be safe, everyone.  Talk to you next week. 

(Music)

(Radio show concluded at 1:57 PM CT)

 

 

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