Unknown: The isolation that has affected so many of us during the pandemic can be especially rough for people with disabilities.

It's hard because you're always stuck home and, and, and you're just bored, you know?

Beyond loneliness, how have people who require daily in-home assistance balanced the need for care with the risk of catching the virus.

We'll discuss it tonight on Alaska Insight.

Thanks for joining us for a discussion on the extra layers of difficulty that the pandemic has brought to individuals with disabilities.

Joining me is Maggie Winston.

Maggie is a disability advocate who lives in Kenai and Mark Regan is the Legal Director of the Disability Law Center of Alaska.

Welcome both of you.

Thank you for having us.

Yeah.

Thanks for being on.

You were both on earlier this week on Talk of Alaska.

But for those who didn't catch that program, Maggie, tell us a little bit about - you're the former chair of the Governor's Council on Disabilities and Special Education.

Tell us a little about yourself and how you found your way into disability advocacy.

Sure, well, I found my way into disability advocacy by suddenly acquiring a spinal cord injury.

When I was 21, in 2005, I had young, one-year-old twin boys, and my life completely turned upside down.

I had to learn a new way to live in a completely new body.

And so I really started puzzle piecing my life together in the ways that we're going to be meaningful for me.

That meant I wanted to live away from my family, I wanted people to come into my home and care for me.

And I needed transportation and needed to be able to go wherever I wanted to go, which means I needed a new vehicle that was accessible for my wheelchair.

I started joining different boards and councils.

I, my very first board was the Independent Living Center of here on the Kenai Peninsula, which started my very first job also after I graduated college.

So I started as a Systems Advocate for a Center for Independent Living, and really gave me the tools and confidence that I needed to help me be able to address some of those systemic barriers that are put up accidentally, you know, for a world that's not made for people with disabilities.

You know, before I move on to Mark, I just want to say to you, Maggie, what an inspiration you are, because the fact that you had this horrible thing happen to you at 21 as a young mother, and went on and, you know, went to college and finished your education, and then went on to do all this work.

Instead of just deciding, wow, I'm just going to sit here because it's kind of over that that is just such a an amazing thing that you've done, and what an inspiration for other people to just keep going.

So thank you.

I think that I was lucky, and set up with all of the things that would make me successful.

Because the going to college and having my own house and my own car and having a relationship and a family.

Those are the things that lots of people want.

That's not, it's not something that's super out of the ordinary.

But I was well set up with systems that are in place to be able to make me successful.

Fantastic.

Mark, tell us about the Disability Law Center and the services that the Center provides.

Disability Law Center is a law firm that protects people with disabilities and advocates for people with disabilities.

We've been around under different names since the 80s.

And what we do to help people with disabilities during the pandemic is on make sure that the services that they're getting, try to advise them and represent them in cases, to make sure the services they're getting get them the maximum amount of independence that they can get.

And so if you have somebody who has significant needs and needs people to come into a home to take care of them, well, we want to make sure the person is there to do the right things, to be there as often as possible, to get the basic things people need to do to be independent done: helping the person, get up in the morning, take a shower, get food, take care of stuff that needs to be done, and also get out into the community.

And that's been a question in the pandemic, where people have daily routines that involve doing things like going to shop.

And there are some difficulties when it comes to dealing with that during the pandemic, and it's the job of the system to help people have the maximum independence and the maximum community contact, even when we're in a pandemic.

Did you have to add more staff?

Because it seems like logistically, that would be a huge challenge to make sure that people still have access to daily assistance, as you were describing, and in a safe way, how did you handle this, this extreme need during the pandemic?

One good thing I suppose about life during the pandemic, is that for people are getting Medicaid funded services, from home health agencies, from community agencies and from others, there's been a rule during the pandemic, that the state is not supposed to reduce services, and the state is not supposed to cut eligibility.

So some of the things that at the start of the pandemic we were very worried about, some of those things were that people would be cut off benefits.

And people really haven't been cut off benefits.

It's, it's a happy accident, it was also deliberately designed by Congress, back almost a year ago, that people weren't going to lose services.

What we do run into are people not being able to take advantage of services that the law says they're supposed to get on, because it just isn't logistically possible for the home health aide to be there at particular times, it just isn't logistically possible for the day habilitation program to help somebody get out into the community in the way that it was done.

And also, there are a lot of people with disabilities who work from home and weren't working from home at the time the pandemic started and changes for people with disabilities and in terms of working from home, have been just like changes for office workers everywhere.

It's, it's a different world, and a lot less of it is done with the same group of people in the same way as was done before the pandemic.

And I do want to drill down a little bit in that area about employment later on in the program.

But Maggie, I want to go back to you.

Following up there on Mark's comments about access, what-in your day to day life, are there resources that have become more limited or non-existent because of the pandemic?

And if so, how have you adapted?

Well, I think the most difficult part really has been access to my staff and to my DSPs, I've had three staff that were out with COVID, and one that was out for the same amount of time, caring for a family member with COVID.

And so it can be really scary, when you don't know who's going to come in in the morning and help you get out of bed.

Or when you don't know who's going to come in for the next shift and help you get back into bed and help to make dinner and to do literally all of the things that you would do by yourself with your arms and your legs.

So just not knowing when and if that could happen for long periods of time is pretty anxiety-inducing.

And are you, where are you in the lineup for be getting access to the vaccine itself?

Because certainly, when you're in a wheelchair, the thought of getting an illness that could attack your lungs is you know, just I mean, it's frightening for everyone, but for you I imagine there's a lot more anxiety around that.

Certainly, being a quadriplegic and a wheelchair user does make me more susceptible to lung disease.

Again, I was very fortunate in that Alaska has prioritized some individuals in congregate settings and so I was able to have access to the vaccine.

Last month, the end of December, I got my second dose three weeks ago now.

So I feel very fortunate.

That's fantastic.

I did have a question from a mom.

After we spoke on Talk of Alaska, a follow up email, where she asked about the risk of people with Down syndrome.

She sent me several articles that she'd read that said, there's a much higher rate of risk.

With COVID.

For people with Down syndrome.

Realizing that you're not a doctor, and neither is Mark, but have you heard about a heightened concern for folks that have Down syndrome with COVID?

Certainly, I've heard some things and have asked this of several doctors.

Now, in some meetings, we, we've been having family ECHO meetings, where you get together professionals and advocates and kind of talk about COVID issues.

And the best that I have heard is that people with developmental disabilities oftentimes can have trouble understanding in public when a mask needs to be on and, and in keeping it on, or just issues with routine and washing hands, things like that.

So it's sort of unclear, I think, at this point, and my opinion, would be that I just don't know, either.

All right, Mark, I want to turn back to now the state of Alaska has guidelines for assisted living and group homes.

But it's not a mandate, how has that complicated for things for people living in facilities that are restricting visitors because of COVID?

We wish there were ways for people to visit and to leave the places where they're living and come back that were unrestricted.

But it's understandable that there are restrictions in the pandemic.

It's also understandable because the way Alaska works, and I think most states work, that there are going to be different rules and different ways to do things, depending on where you live.

And depending on how great your needs are.

So there'll be different rules for nursing facilities, there'll be different rules for the Pioneer Home, there'll be different rules for assisted living, there'll be different rules for just living in your own home.

And they're all a little bit different.

Some of them are going to lead to legal disputes, most of the time, they're not.

What people need to do is they need to be innovative, they need to be thoughtful, they need to, to have new ideas about how to stay in touch with each other.

And there are some things that can be done that are just taking advantage of technology.

There are some things that can't, and particularly for people with cognitive impairments and people with mental illness, the need for regular routine that you're comfortable with, the need to make choices about what you're going to do, those are really important.

And so the extent we all have to do things differently during the pandemic, sometimes there is a greater burden on people who live with others who don't want others to get sick and the place where you live, you don't want to get sick yourself.

There are things that you need to do, and as Maggie was saying, there are things you need to do that you're not going to be used to doing, you're not going to be comfortable doing.

But you you have to make those changes in order to keep everybody around you safe.

And that includes caregivers as well as your say fellow residents of a group home and everybody has to work together.

How has that played out in more complicated housing situations like homeless shelters, in, here in Anchorage, and in other places across the state, frankly?

Well, here in Anchorage, people who are in Anchorage will remember that there was a great effort to find shelter for people in the Sullivan arena and Ben Boeke, down on Chester Creek.

And there were then some issues about how people were able to live their lives while in a place where they were together with others where others would maybe get them sick or they would get sick or exposed to COVID.

And so there were some complicated issues about whether you could leave a shelter, even if the shelter was as big as the sole of an arena and come back to it.

Fortunately, we're not in the same position so far as mass shelters, now, as we were earlier.

I think that's an improvement.

And I think that people's living situations have gotten a little bit easier over the course of the pandemic, and by easier, I mean, just a little bit more predictable, a little bit safer and a little bit fewer difficulties in, in moving from place to place.

But this has been going on for what 10, 11 almost 12 months.

And there's going to be a need for people to get vaccinated, there's going to be a need for people to start moving around again.

And that's going to affect people with disabilities' living arrangements, just as much or more so than it's going to affect living arrangements elsewhere.

All right, thank you.

Maggie, you're a mom, as you mentioned earlier.

Parenting during a pandemic, it has really been a whole new ballgame.

What have you heard from parents of children with cognitive disabilities about the extra layers of challenge right now?

Just especially how challenging it is, for education, especially distance education is super difficult when you have a kid that needs extra services.

Mm hmm.

Yeah.

The the social isolation that has been forced on us has been difficult for most of us.

Jena Crafton is an Eagle River disabilities advocate who serves on the Governor's Council on Disabilities and Special Education.

And Jena joined us earlier this week.

And she says she loves to be around people.

But with things shut down, she's had a hard time staying connected.

And it's hard because you're always stuck home and, and and you just bored, you know?I just miss people to go out and, and, hang out with friends and be more social.

I miss hugging, high fiving.

i miss hanging out with friends and, and have a life.

So Jena really brings that home, you know, she loves to be social.

She said that's her superpower that she's a very social person.

And so this has been hard.

What else are you hearing about how this is playing out in the disability community?

Have you seen increases in depression?

We'll start with you, Maggie and then we'll we'll go to Mark.

But have you have you talked to parents or individuals that are having a rough time or, or a regression of social skills, perhaps for some?

I certainly think that we're all in this together with depression, and anxiety, and just the fear of the not knowing.

But, but yeah, there are people that really need services, in order to just get out into the community.

And in order to, to learn new skills and be able to maintain skills, that involves getting out into the community.

And it involves accessing a community and really learning from your peers or learning from others.

And you certainly see, people with fewer instances of access to that when they can't get a DSP to come into their home.

Or when they can't get out of their home because they live in a group home.

So you certainly see more instances of stuff like this happening.

And are you seeing an increase perhaps in the difficulty in finding consistent homecare, resulting in an increase in accidents for people trying to get by on their own?

Oh, that would definitely be a question for the folks over at APS.

But I can only imagine that you would you would definitely see more and more accidents and abuse and things like that happening with people that are just stuck at home all the time.

Mark, follow up there.

Are you getting any reports about those things?

We're not getting statistical reports about an increase in accidents or an increase in abuse.

But there is a a reason why I think we're not getting reports and why the system as a whole may not be getting reports of increased depression or of increased trouble.

It's not because people aren't having a hard time.

It's not because people aren't depressed.

It's because contact with the medical system goes down, when you're under, when you're under, you know, lockdown type restrictions, other restrictions that stop you from doing relatively routine things to stay connected.

So if you're used, if you're somebody with a mental illness, and you're used to having regular therapy appointments, and those therapy appointments have shifted over to things on a screen, or maybe you're not bringing a new problem to somebody's attention, because you're figuring that you might get the virus when you you go to your, out into the community, and you're not supposed to go out into the community.

So I think there is a reason why medical problems and social problems, like abuse, are not showing up maybe as public because we're not in as much touch with each other as we used to be.

And so it's harder for us to get relatively routine things checked up on.

And so that I think he is a reason why we're not sounding the crisis bill, because we aren't in touch with each other enough to do that.

In, in our final couple minutes here.

I heard a story recently on an NPR program On the Media that talks about how acknowledging the fact that many of us have never been concerned with narrow hallways or cramped office quarters until the pandemic and this need for social distancing.

But for people with mobility challenges and other disabilities, it you know, it's a constant thing, the built environment is a constant challenge.

Mark, can we, what can we learn from their experience to help redesign infrastructure to better help us in the future?

And are those conversations taking place?

The, the story referred to people with disabilities as oracle's for the future, that we should be listening to them in their experience to help us better design workplace settings for opportunities that make access easier for everyone?

Let me give you a happy response to part of that question.

One of the surprising things, at least to me about how we've all been responding to the pandemic, is how much has been done over why I want to say over the Internet, and that dates me.

But how much can be done through virtual contact to keep routines the same way.

I am glad on behalf of employees with disabilities, that working from home and working from wherever you happen to be living is so much easier now than one would have thought before the pandemic.

It's a way that I can work, it's a way that Maggie can do things, it's a way that everybody can do things to get stuff done.

Now, I want to say something on the other side, your affiliate in in Bethel, KYUK ran a story earlier this week, I think or late last week, about how kids are failing classes.

And if we're talking about people with disabilities and the need for contact and the need for personal contact, that also applies to students, and maybe even more so to students.

And we have a long - after people get vaccinated, after things are sort of back to normal - we have a long difficult road to follow in trying to catch up for people who have lost years of education, a year of education, basically, yeah, because of it.

Well, I wish we could continue on but we're out of time.

Thanks Mark and Maggie for helping us better understand the challenges and opportunities for people with disabilities in Alaska.

Before we wrap up tonight.

Let's hear from Jena again regarding the importance of staying in motion to stay healthy, both physically and mentally.

"Stay active, like doing Zumba or doing a hard boot camp class.

And, and stay positive, and do mindfulness and take walks, do activities, call friends.

See, if people want to call me they can ask me.

Call me for anything, I'm always there that anybody needs help.

Practice mindfulness and take walks.

Simple, smart advice to help yourself stay positive through this tough time.

Here's some other excellent examples of staying active for health and happiness in creative ways that are safe and family friendly.

These TikTok videos come to us courtesy of Cindy & Vic's R&R in Anchorage that provides person-directed services for adults with intellectual and developmental disabilities.

The simple joy of fresh air exercise, singing and laughing together, free activities that are good for all of us.

That's it for this edition of Alaska Insight.

Be sure to tune in daily to your local public radio station for Alaska Morning News and Alaska News Nightly every weeknight.

Be part of important conversations happening on Talk of Alaska every Tuesday morning and visit our website alaskapublic.org for breaking news and reports from across the state.

We'll be back next Friday.

Thanks for joining us this evening.

I'm Lori Townsend.

Goodnight.