On this last episode, we look back on 23 years of joyous, difficult and always informative conversation.
What’s happening right now is scary for all of us. But for many with intellectual and developmental disabilities, it has been an even greater challenge. Coronavirus has stripped away routines of school, work and community that once filled up each day.
So what’s the best way to cope with this new normal? How do parents and guardians provide special education at home? And for those living independently or in group homes, what supports are still available?
We’ll hear from experts in special education policy and psychiatry.
Produced by Julie Depenbrock
- Molly Whalen Executive Director, D.C. Association for Special Education
- Dr. Lance Clawson Psychiatrist
- John Bogasky Parent and Special Olympics Volunteer
KOJO NNAMDIWelcome back. What's happening right now is scary for all of us. But for many with special needs, living in the time of coronavirus has been an even greater challenge as closures and stay-at-home orders strip away the routines of school, work and recreation that once filled each day. So, what's the best way to cope with this new normal? How do parents and guardians provide special education at home? And for those living independently or in group homes, what supports are still available?
KOJO NNAMDIJoining us now is John Bogasky. He's a parent and Special Olympics volunteer. He's also a member of the SEEC's Business Advisory Committee. The SEEC being Seeking Employment Equality and Community, a nonprofit that supports people with developmental disabilities. John Bogasky, thank you for joining us.
JOHN BOGASKYSo happy to be here, Kojo.
NNAMDIAlso joining us is Molly Whalen, executive director of the District of Columbia Association for Special Education, or DCASE. That's an alliance of nonpublic and charter schools that provide special education services to D.C. students. Molly Whalen, thank you for joining us.
MOLLY WHALENThanks, Kojo.
NNAMDIJohn, I'll start with you. I wonder if you could start off by telling us a bit about your own kids.
BOGASKYSo, my son is 28. He lives independently, and he is among the fortunate. He still has his job. He is an essential federal employee. He works on the maintenance team at the Smithsonian, but the museums are closed, so there's not a lot of maintenance to do. So, he's only going to work about one or two days a week, and that's a good thing. The rest of the time, it's TV and video games. Really all of the things that he was doing are shut down.
BOGASKYIt's a bit terrifying for his mom and I, because, you know, kids like him, they don't entirely understand what's happening. They learn new skills slowly, and we've all had to learn new skills about social distancing and hand hygiene, and the like. Yet he's getting on the Metro and going downtown to work, and so we try to teach him. We hope he's doing the right thing. We'd love to bring him back and have him live with us, but that would undo years of success in helping him live independently. And he's a 28-year-old guy, and he ain't really interested in living with mom and dad.
NNAMDIMolly, tell us about your kids.
WHALENMy kids are 18 and 20, both have autism, and both are still in special education schools. In fact, I've got one Zoom, I think it's history going on. I'm not quite sure, but one Zoom classroom going on in the kitchen. And another a synchronistic program going on in the dining room. And I'm on the phone with you when I'm not working. So, one school is terrific. They got on incredibly fast. They trained their staff up in a week and launched Zoom classrooms and Google classrooms, and they're doing it pretty well, and even doing tele-therapy for related services. My daughter gets speech and social work, mental health support.
WHALENThe other school took a little longer and it's a little clunkier, and it's a little harder for him. I agree with John, one of the hard things is really trying to explain this to students who have, especially kids with autism and developmental disabilities, have a harder time kind of grasping some of these bigger issues. And also, as a parent, you don't want to terrify them too much. But this is my son's last year of school, and he's applying to different workforce development programs. And all of that's been on hold. And there's a lot of not even knowing what's going to happen next for him.
NNAMDIJohn, what has this experience been like for your son, and for you?
BOGASKYHe's bored. He's tired of sitting in the house, and he doesn't get -- I can give you a good example. When the government shutdown happened, he also didn't understand that, but his fix for that, he would simply call me every night and find out if he needed to go to work the next day. So, he really doesn't understand, yet he knows there's a virus, he knows to be careful of it. But how it's going to happen and how it's going to play out, he just doesn't have that logical understanding.
BOGASKYWe've changed his -- you know, some of his activities have moved to Zoom. You know, he's had -- I call it his 2D social life. And so we have had Zoom calls, but he's not that good with the technology. I know the other night, we were doing a Zoom call, and he has an iPad and an iPhone. So, I had him do Facetime on the iPhone, so I could see the iPad screen, so I could help me log into the Zoom call that he was trying to get onto.
NNAMDIYeah, a lot of new difficulties and new experiences. I'd like to bring Dr. Lance Clawson into this conversation. He's a psychiatrist in Bethesda, Maryland, working primarily with children and adolescents. Lance Clawson, thank you for joining us.
LANCE CLAWSONThank you, Kojo.
LANCE CLAWSONHow are the individuals you work with who have special needs experiencing this pandemic?
LANCE CLAWSONWell, I think really John and Molly just gave several wonderful examples. And it's different depending on whether you're in the adult services world, as John Bogasky's son is, versus Molly's children who are still in the school world, kind of the available structures and supports are different. But it's a challenge all the way around, because there's so much new learning that families and individuals with developmental disabilities are having to do and learning to adapt. I think the fact that there haven't been particularly clear messages coming through some of the state agencies, as everyone's scrambling to try and, you know, pick up the pieces and say: how can we salvage this?
LANCE CLAWSONSo, a lot of the work I'm doing is really kind of making sure that people are kind of implementing ways to adapt to this new life given that we may not -- we really don't know how long it's going to last. So, lots of education, as John Bogasky was saying, about, you know, safety, new social rules, creating schedules each day for the kids. You know, what time is wake up, what time is breakfast, what time is lunch, what time is exercise. Try to engage in a lot of wellness things and things that are engaging to them.
LANCE CLAWSONBecause it's very difficult. You're talking about individuals who would have more difficulty, many times, with kind of really adaptive leisure skills. So, it takes a lot of work on the part of the families and the part of the agencies to keep these folks kind of engaged. Because, otherwise, if they're sitting around, I mean, like anybody else, you could get depressed, you could become anxious. There are a lot of things that can happen down the line. So, there's lots of preventive work that, you know, I'm trying to get folks to be involved in.
LANCE CLAWSONI've been talking to some of the special education schools and how they're approaching it, and just trying to get the folks in my practice to kind of realize this is a big challenge that could be going on for a while. We need to adapt the best we can. And it's nice to see some of the agencies like DDA in Maryland working hard, so that some of the adult support providers can do it virtually and still get paid.
LANCE CLAWSONBut, as I was listening to your last segment, there are still huge issues around personal support providers for the adult community in terms of, do they have adequate PPEs, do they have adequate training, do they get sick leave. These are all ongoing issues for the system. COVID brings out inequalities in the system, or just problems with the system. And so you can see them in the special needs community as much as you can in, say, your previous segment on the home healthcare community.
NNAMDIIndeed, they're connected, as Angela in Brentwood wants to remind us. Angela, you're on the air. Go ahead, please.
ANGELAHi, Kojo. I actually wish the earlier segment and this segment had been tied together, because I still think it integrates the home health aide situation just in the fact that, you know, someone who's -- whether they're physically or mentally disabled, still need a home health aide. And so home health aides are like the Swiss Army knives of the low-hanging fruit of the whole medical industry. It's part of a system.
ANGELAAnd, I hate to say, they don't really get the respect that they deserve, a lot of the times. You know, you have a lot of parents who are currently working at home, and they have a special needs child or they have an adult or a parent with dementia. And they still need somebody to physically come into the home and assist with that, because they're still working, but they still need that assistance.
ANGELASo, again, now the home health aides not only have to do all the things that they've been doing, now they've got to help a child with some sort of special needs with homework. Maybe they've never done that before, you know, and all these other kind of things that are kind of are tacked on to it.
ANGELAAnd I think, a lot of times, because of how home health aides receive their education, they kind of really feel like trade school people, people with Associate Degrees. They don't really get the respect that they should. So, they don't get the insurance that they need. They don't get the PPEs that they need. They just don't get the respect that they should. I think that's a systemic problem that's never really talked about. I see a lot of brown and black women who do these jobs. But, like I said, because of the education level, we just kind of leave them out there.
ANGELAAnd last point, my mother had dementia, which is a mental disability. And the thing about these agencies, you know, older people, they like consistency. So, the thing is I had a person that was coming at almost full time, maybe overtime. And at one point they called me and said, well, Ms. Thomas, we can't have this person come into your home anymore. And I said, well, why not? They said, well, we have to come up at a certain hour. So, that highly upset my mother because they're now trying not to pay people overtime. So, it's part of this whole system that's just, you know, like I said, they treat home health aides like the Rodney Dangerfield of the industry. We just don't get any respect. Thank you.
NNAMDIThank you very much for your call, Angela, and for underscoring that point. Mary writes on our webpage: a lot of people don't realize that direct support providers, DSPs, are absolutely essential during a pandemic and all the time. And that, right now, they're protecting some of the most high-risk people by risking infection themselves.
NNAMDIThere's also a DSP crisis that existed even before this pandemic. Wages -- which are often set by the government -- are lower, and there aren't enough skilled DSPs to do their jobs. Direct support professionals are people who work directly with people with physical disabilities and/or intellectual disabilities. Molly Whalen, how have you been doing since schools closed nearly a month ago?
WHALENWell, I think that's, you know, really bringing it back to what is happening in our school systems. There have been so many different messages from, both being in a tri-state area of D.C. and Virginia and Maryland, from the state education agencies about what is expected, what's not expected, guidance. I mean, we're practically getting new guidance from the Office of State Superintendent for Education here in D.C., the state education agency, daily on what schools should be doing with their students with disabilities.
WHALENWe have some counties -- PG, I know for one -- who's not talked to parents at all about how to do special education services for students. And these are all, you know, IPs are federally mandated and regulated. We're not talking about the importance of missed services for students and social distancing and all of these areas. And I work with a couple of, you know, nonpublic special education schools that, you know, didn't even know if they were going to get paid by their counties or not, but have said, you know, our kids have huge social, emotional and mental health needs in the best of times. This is the worst of times, and we have to provide those services.
WHALENI have to call out two terrific schools, the Chelsea School and the Katherine Thomas School. Both of those schools really ramped things up to be able to do tele-therapy and mental health. And it's not easy. I mean, being able to train your staff and your teachers, and also really to getting schools to talk to parents about how this works. We're being expected to be therapists and teachers, and, at the same time, trying to figure out how I get to the grocery store because it takes me three hours to do grocery shopping. (laugh)
WHALENSo, it's just exhausting. It's probably the hardest month I've ever had with both my kids, and both professionally. It's hard to be -- you know, we talk about home health care aide and health care workers. The teachers on the frontlines as well. I mean, these teachers and therapists are exhausted and they're doing the same things at home. It's hard.
NNAMDIAnd speaking of tele-therapy, Dr. Lance Clawson, tell us a little bit about the fact that your in-person sessions have come to a halt. How is tele-therapy going, and what's different about the interactions?
CLAWSONWell, fortunately I've been doing some tele-therapy prior. Many of my colleagues had never done it before, and had to become very quick studies. But much of what Molly's saying is it's creating a lot of demands that people hadn't been dealing with before. I mean, therapy, it can very much depend on the individual, because, you know, in general, when you're doing tele-therapy, you're seeing someone that you've known and that you have seen in person. So, that helps quite a bit.
CLAWSONBut some of the nuances are harder to pick up. And for individuals with developmental disabilities, many times, engaging them over tele-therapy -- and I was just on the line with the Ivymount school teachers and other special ed schools -- keeping them engaged can be very difficult. So, we were actually talking about how to keep the kids engaged for their lessons in the same way that I'm trying to kind of engage them and keep the conversation moving, and still do some therapeutic work.
CLAWSONSo, once again, more falls to families across the board, even with the tele-therapy, particularly developmentally delayed individuals, because the family members need to kind of help set it up, be more of a support, help provide some of that extra data or context, because it can be really difficult for an individual, you know, with developmental disabilities to kind of give you, you know, the short story on how things are going and what their current feeling state is and type of thing. So, I'm much more dependent on the families over tele-therapy to get a better sense of what's going on.
CLAWSONAnd I think, with the school work that Molly was talking about, there's a tremendous demand that's been placed on the parents when they're trying to work and get their kids in therapy and do the schoolwork. And then they've got me telling them to keep them on a regular schedule, etcetera, etcetera. It's a lot for everybody, but so far, for me, it's working out pretty well. Although how long it's going to go on, you know, there are real problems with doing distance therapy when someone's having a psychiatric crisis. And I've been involved with that, you know, quite a bit in the last few weeks.
NNAMDIJohn Bogasky, are you still able to see your son, John?
BOGASKYI still see him. We bring him -- to fill the weekends, we started doing dinner and a movie at mom and dad's house on Saturday night. So, we bring him home. He keeps his distance from his mom, because his mom -- some of the medicine she takes weakens her immune system, so she's more vulnerable. So, we just -- and that's really hard for her, but that's what we have to do. I'd like to give a shout out to my son's DSPs, his personal support counselor and his job coach, but both of whom have continued to support him during this. So, we've been fortunate this time that we have very good ones supporting us from SEEC.
NNAMDIBut, John, some who live in group homes are no longer allowed to have visitors or to even visit their own families. What are the reasons for that?
BOGASKYWell, I have a friend who went to visit her son in a group home and the son had to come out of the house and meet her in the driveway, because that's the only way they could meet. And the reason is to reduce the cross-infection in the group homes. I mean, the group homes -- what was happening before is all of those people have different activities. They'd go to their activities, they'd come back, they'd see other -- different staff would come in and out. It's a big crowd of people moving back and forth, creating a lot of exposure.
BOGASKYTheir lives have really locked down. They can't have people visit. Their day programs are shut down. They're sort of there in that facility, in that group home -- maybe they go for a walk once in a while, but otherwise that's it. And they're limiting the number of people coming in, because these people are also often more vulnerable to infection than the general population.
NNAMDICastle Shipit tweets to us, my son has autism and ID and lives in a group home: I fear for both my son and the staff. Everyone is at risk. Lack of funds and low wages are only magnified by this crisis. Mary Ellen tweets: in group homes for people with disabilities, it's impossible to social distance, really. People with disabilities have also historically been forcibly isolated. Now, service providers often work hard to integrate everyone into the community but the virus makes that impossible. And now here is Pedro, in Maryland, with his experience. Pedro, you're on the air. Go ahead, please.
PEDROYes, good afternoon, Kojo, and also good afternoon to all your guests. Yes, I have a seven-year-old autistic, nonverbal son who generally goes to a therapy center from 9:00 a.m. to 4:00 p.m. We drop him off in the morning. We pick him up in the afternoon. Prior to the pandemic, a week -- I'd say a week into -- more like five weeks ago, his mother and I decided to pull him out of the center because of the exposure to other children, to the therapists there.
PEDROSo, he stayed at home for about a week, of course, with the parents, and we started noticing how any skills that he gained, he quickly lost, you know, because a lot of kids in the spectrum, they work off of a cycle, you know, routine. So, his therapy center decided to start sending therapists to the house after, you know, they realized that a lot of parents were pulling kids out.
PEDROAnd, I'll be honest with you, that was the best thing, because my son, he has certain skills that he still works on, like feeding. You know, we started having trouble feeding him, etcetera. So, the fact that they were able to come out was just a blessing. And it wasn't just because, you know, now we had a child that we'd have to take care of. Now, it was all the gains that we had amassed, now we're going to slowly start losing them, because, you know, even though my son's mother and I, we're proud parents. You know, we firmly believe that we're the best parent out there. It's just those skills that we don't have that we can provide for this child.
NNAMDIThank you so much for sharing your story with us, Pedro, and good luck to you in this difficult time. Here now is Pam, in Maryland, also. Pam, you're on the air. Go ahead, please.
PAMHello. I work in the Prince George's County Public Schools, and I just wanted to say that, yes, we are indeed providing special education services, as we speak. We are providing -- the self-contained classes are meeting on Zoom. The latest services, including speech pathology, OT are being provided. And the co-teachers in the general education classes are working with their students through Zoom and Google Classroom. So, we definitely are providing special education services, all around.
NNAMDIThank you very much for sharing that with us. Molly, I'd like you to share. What has it been like setting up distance learning for two children at once? What tools have your children's schools provided for remote learning?
WHALENYeah, and I think it really depends if your children are in a public school setting or a special education program. Some of the available resources that are coming in for the public school students are not open to the private special education students. We had to dig up an old Dell laptop to use, since we were having some things going on all at the same time.
WHALENAnd I think the other piece is that we're seeing lots of pockets. I appreciate the caller who called in, but we're still hearing from lots of parents in different jurisdictions that they haven't heard from their teachers. They haven't heard how this is going to be set up. They haven't heard how to do tele-therapy. So, there's pockets of things happening, but not consistency.
WHALENWe have some schools being, you know, kind of sending out, you know, packets. You know, I talked to one parent who said, I got a 120-page packet of worksheets and how do you set that up or how do you even -- you know, as Dr. Clawson was saying, how do you get a student with developmental delays or autism or attention issues to focus on those pieces? So, for us it's the same thing that's happening everywhere.
WHALENI heard a joke the other day that said, I wonder when the kids learn who their teacher is for next school year. I sure hope it's not me, the parent, again.
NNAMDIYeah, I heard that.
WHALENBecause, you know -- and also my other favorite one was, it was like all these, you know, new math kids are about to learn how to carry the one from their new home school teachers, because we don't -- we're parents. We don't necessarily know how to do algebra equations. And the frustration level for students with disabilities and developmental delays and intellectual disabilities is really, really low. They can get frustrated very easily.
WHALENAnd if technology's not working, if the Wi-Fi -- our Wi-Fi went out last week in the neighborhood and so all the Zoom calls went down, the frustration for your kids is just insane. And they're also -- well, my kids have autism and they're probably, like, not minding this lack of social. (laugh) They go to school and they go to programs like Best Buddies and Special Olympics and all of these other things because they need that social interaction. And it has to be kind of pushed upon them when you have DD and ID.
WHALENAnd, you know, without that there, I really worry about the regression, not just academically but socially, emotionally, for my kids and all of our students with disabilities. Just in D.C., the kids with disabilities were scoring less than 8 percent proficient on standardized testing before this happened. Imagine how bad the regression is going to be for all of our students with disabilities after this.
NNAMDIIndeed. DD writes on our webpage: while so many of us are lamenting the disruption of our daily lives, there are individuals and families like my parents and brother, who are barely hanging on. The inability to explain or understand the realities creates a constant stream of meltdowns and stresses that cannot be alleviated in any way. Concern for the individual is significant. The worry about the caregivers is even greater. Dr. Lance Clawson, we only have about 30 seconds left. What kind of advice can you give in that situation?
CLAWSONWell, to create -- one, that it takes a higher level of kind of parental involvement, and to create the new routines as quickly as possible, things that are pleasurable, to use kind of some of the basic behavioral principals they've learned over the years in terms of rewards for engaging in effort for work, to regular bedtimes, to make sure they're getting plenty of exercise. Because all of these things, these changes in their life can lead to these regressions and decompensations that we're talking about.
CLAWSONSo, it's trying to create the new normal as quickly as possible, but it's tough for the families. So, the families, the parents have to monitor themselves. How well am I doing? How do I take care of myself?
NNAMDIExactly. I'm afraid that's all the time we have. Dr. Lance Clawson, Molly Whalen, John Bogasky, thank you all for joining us. Today's show was produced by Julie Depenbrock. Coming up tomorrow, on The Politics Hour, Charniele Herring, the majority leader of Virginia's House of Delegates, gives us a preview of next week's special session. And D.C. Councilmember Elissa Silverman will try to give us some advice on navigating unemployment insurance in the District. That's all coming up tomorrow, at noon. Until then, thank you for listening, and stay safe. I'm Kojo Nnamdi.
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