The New Normal

In The New Normal, we talk with Nicole LeBlanc, DETAC’s Self-Advocate Advisor, about the consequences of the COVID-19 pandemic for people with disabilities – mostly detrimental in terms of increased risk and unemployment, but also some changes that have benefitted people with disabilities such as remote work and telehealth.

Nicole LeBlanc is the Self Advocate Advisor with DETAC. Nicole has a keen ability and interest in public policy and excels at communicating the needs of people with developmental disabilities to public officials.

Nicole worked for over eight years at Green Mountain Self-Advocates in Montpelier, Vermont as Advocacy Director supporting her peers with disabilities to feel comfortable talking to their elected officials and as a Project Assistant for the Inclusive Healthcare Partnership, working to help people with disabilities get their healthcare needs met.

She has had internships at the Administration on Intellectual and Developmental Disabilities and Association of University Centers on Disabilities. Since 2011, Nicole has consulted for Self-Advocates Becoming Empowered and the Autistic Self-Advocacy Network. In 2018 Nicole served as the Dr. Ruth Sullivan policy fellow and from 2018 to 2019 she was the Self Advocacy Resource and Technical Assistance Center (SARTAC) fellow at NDRN where she produced “Real Jobs for Real Pay”, a booklet advocating competitive integrated employment. In 2019 Nicole joined HSRI as the Coordinator of the Person-Centered Advisory and Leadership Group (PAL-Group) in the National Center on Advancing Person Centered Practices. Nicole just recently accepted a contract role with Not Dead Yet to educate Maryland and Virginia legislatures on the dangers of physician-assisted suicide laws. In 2020 Nicole created the toolkit called “Why Employment Matters” on talking to families about employment.

She has given talks, webinars and keynotes throughout the country on Autism, the dignity of risk, presumption of competence, Person Centered Planning, healthcare access, the “new normal” after COVID-19, tele-health, Build Back Better, voter access, competitive integrated employment, self-managed services and Home and Community-Based Services (HCBS).

In 2019 Nicole won the David Joyce Advocate of the Year award for outstanding policy advocacy on Capitol Hill and in 2022 she received the Steve Bartlett award that recognizes and honors a person in the private or public sector who demonstrates a strong commitment to using the political system to advance public policy in support of people with disabilities.

She earned a certificate of professional studies from the University of Vermont. In 2018 Nicole was the first self-advocate to complete from the Vermont LEND program.

Her motto is: Control your own destiny or someone else will.

Donald Taylor has been with TASH since 2014, where he is the Manager of Membership & Communications, responsible for membership and chapters, data systems and communication, and collaborates closely with other staff to make sure TASH systems support their work. Donald comes from a background of data systems, operations and business analysis, going back to the 1990s. Donald came to the world of disability while pursuing a degree in history. The history profession is deeply interested in the eugenics movement of the early twentieth century and fellow students studying biomedical systems of oppression inspired in him the desire to make a contribution to this aspect of social justice.

Announcer: You’re listening to the AOD Disability Employment Technical Assistance Center Podcast, where we learn from people who are working to improve competitive integrated employment and economic outcomes for people with disabilities.

In today’s episode, we talk with Nicole LeBlanc, DETAC’s Self-Advocate Advisor, about the consequences of the COVID-19 pandemic for people with disabilities – mostly detrimental in terms of increased risk and unemployment, but also some changes that have benefitted people with disabilities such as remote work and telehealth.

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Donald Taylor: Nicole, introduce yourself for our listeners.

Nicole LeBlanc: My name’s Nicole Blank. I live in Silver Spring. I wear a gazillion hats. I serve as the Self Advocate Advisor for the Disability Employment TA Center. I’ve been in the disability field since October 2007. I’m originally from Vermont.

Donald Taylor: And how did you get into the disability field?

Nicole LeBlanc: Well, I discovered the self-advocacy movement in Green Mountain Self-Advocacy back when I lived in Vermont, when I was transitioning into a shared living provider in getting developmental services. And I discovered the self-advocacy movement was one of the best kept secrets in Vermont, you know, and it’s like, and I, prior to the Selfy movement, you know, somebody always wished to be normal. I was always teased, picked on. I was always like the odd, weird kid, the outcast you could never fit in socially.

Donald Taylor: And then how did you end up coming to Washington, DC?

Nicole LeBlanc: Well, I discovered, my first time I stepped foot in the nation’s capital was a 2009 disability Policy Seminar where I met Kareem Dale, Lois Curtis, Sarah Peterson, and I was like, wow, now this is a place I could see myself as somebody who’s always been following politics and stuff – the Bill Clinton sex scandal – somebody who’s always wanted to be a change agent.

Donald Taylor: So, you’re one of the most opinionated people on the issue of COVID I know. Tell me what are your feelings overall about the, COVID and the pandemic are.

Nicole LeBlanc: The disaster that didn’t have to be this bad. Especially given that, you know, Bill Gates is warned about the threat of a pandemic since 2014. It’s like from day one, if we had just given told everybody ware M95s, you know, and invest in cleaning air and like, and most recently studies have come out showing that people with autism, neurodiverse populations are at high risk of long COVID. You know, an autistic doctor in Vermont opened up a practice just focused on neurodiverse populations, all because she was seeing, you know, a massive wave of long COVID in the autism and neurodiverse population. Because people with autism often have an overreactive immune system.

Donald Taylor: So you’re one of the most, the, you’re in probably like the 95th percentile of most-cautious-around-COVID people I know. Tell me what your personal thinking on the issue is.

Nicole LeBlanc: Well, until this becomes the common cold, masking is the new normal. You know, if everybody would just, you know, you know, and if we would spend on focus on cleaning the air, you know, that would help, you know, and hey, you know, and me personally, you know, just doubling up wearing an M95 mask makes me less anxious.

Donald Taylor: I just was talking with someone else here in the office and like, you know, we were talking about like when we mask and when we don’t mask. You know, there’s places where I obviously always wear a mask, like on the subway. Sometimes I don’t wear a mask when I go into the grocery store. I mean, I do most of the time, but at this point I feel like I don’t know what to do. Like, I feel like there’s no guidance.

Nicole LeBlanc: Yeah.

Donald Taylor: Everybody’s been cast loose. It’s figured out for yourself. I mean, I still, to this day, I still don’t do any optional activities. Like I don’t go to restaurants. I don’t go to bars. Like, I’m not going to a public place still, especially not right now with a whole new [strain]…

Nicole LeBlanc: Yeah …

Donald Taylor: … the middle of winter …

Nicole LeBlanc: … and flu season and having flu on top of it.

Donald Taylor: Yeah. Um.

Nicole LeBlanc: Like, you know, and because when you look back, you know, at beginning where you saw, you know, flu cases and norovirus, you know, if anything that is shown is, you know, having bad flu season doesn’t have to be the norm, if we, you know, buck-up and make sacrifices, like masking, hand-washing. The same way we stop stomach flu is the same way we stop this pandemic. You know, stomach flu is a super-spreader, just like COVID and it can be stomach flu, just like COVID can be spread asymptomatically.

Another comparison: how many of us grew up in the nineties, lived with people who smoked cigarettes? You know, in the nineties, kids got, it was common for children to get massive gazillion ear infections every single year be due to secondhand smoke, being exposed to it in an indoor setting. As soon as my parents, all my uncles, everybody stopped smoking, people like me stopped getting a million chronic ear infections, which all those antibiotics now, antibiotic, even though they’re getting rid of the chronic ear infection, they’re now causing colon cancer, which is why colon cancer screening is 45. It’s like it’s airborne. Cigarette smoke is airborne, you know, we know we need to look at these COVID mitigation measures as, you know, just like airport security, you know, we, what do we do when we go to the airport? We take off our shoes, go through all that, you know, and put up with pat downs. As much as we hate being patted down a million times, you know, we just suck it up and do it. It’s why we, you know, show up two hours prior to flight. It’s no different than airport security.

Donald Taylor: What is your own sense of what we should be doing right now? And …

Nicole LeBlanc: Right now everybody should be, you know, keep doing, you know, hand washing and masking and we should be spending billions of dollars, you know, stop spending money on war and spend money on cleaning the air. This is airborne. It is. It’s circulating in the air. Even after somebody leaves the room, you know, their germs are still in the air. You know, that’s the thing. The World Health Organization, everybody, needs to say this is airborne. And we need to make vaccines, hopefully, you know, there’s talk of nasal vaccines that can go through the nose that block infections. Until we get something like that, that can block infections, get rid of the threat of long COVID, make this just become just another common cold where, you know, take the Alka Seltzer Plus, zinc, vitamin C, and all that, Vicks VapoRub, until we get to the point where it’s just a regular cold with no long-term complications like Crohn’s disease, gut dysbiosis, and all that, until we’re not hearing about long COVID, it ain’t gonna be in the rear view mirror. You know, when we stop hearing about all these complications, people having strokes. I know one person, a therapist who also has autism, she caught COVID twice and she had a mini stroke. You know, these midigation measure the, you know, they not only protect you, but they protect the immune-compromised, the highest risk populations. You know, when the high risk populations are protected, everybody wins. You know, health is the real wealth, not silver and gold, as Gandhi would say.

Donald Taylor: So let’s talk about the economic impact of COVID. Tell me how it’s affected the employment of people with disabilities.

Nicole LeBlanc: Well, in the beginning it led to, you know, massive job loss, especially for central workers and people at high risk, you know, needing to get unemployment insurance. You know, one, you know, a big plus was all the unemployment, extra unemployment bonus bump, along with stimulus checks, which, you know, personally, I say, you know, we should be doing stimulus checks, you know, ongoing, every month. We should move to universal basic income. Plus it would also helps mitigate the loss of income needed when it comes to needing to quarantine and all that. And we need to adopt paid sick leave in this country. You know, right now, you know, people, the CDC should not be telling people, oh, five days quarantine, five days. You can go back, but five days math, you know, you should, it should be complete 14 days, you know, go back when you test negative. And, and when it comes to, you know, planning for disasters, like responding at it’s, you know, in the beginning you used to say upfront, you know, we need to play the better safe and sorry mentality until we figure out how this whatever spreads, which you look back when we were doing all surfaces and all that, and then all of a sudden now we more clear that this is airborne.

Donald Taylor: So tell me, tell us specifically how it’s impacted people with disabilities. Like something you’ve talked about is how, because people with disabilities are overrepresented in the essential workers’ field, it’s really impacted them a lot more than other people.

Nicole LeBlanc: Mm-Hmm, it’s what, you know, many people with disabilities work in food, filth, flowers, you know, and while the hazard pay and stuff like that is nice, in addition, you know, many people had to stop working in the beginning due to their risk factors. So that unemployment bump and payments definitely helped.

Donald Taylor: And how is …

Nicole LeBlanc: In addition the stimulus checks, you know, also generally speaking, gave, you know, peace of mind. You know, they enabled us to, you know, absorb the cost of this pandemic universe of, you know, buying technology, buying N95 masks and other work-from-home equipment.

Donald Taylor: And how has it affected people with disabilities via the way it’s affected people with disabilities’ support staff?

Nicole LeBlanc: Well, in the support staff, we’ve had lots of staff turnover. One thing it’s nice is the [Medicaid] Appendix K flexibilities, you know, allowed a certain bunch of, you know, bureaucracy that you could say be waived, which, you know, if there’s any one thing when we look at the normal Appendix K should be part of become standard, part of the new normal, you know, and having, you know, hybrid, you know, having virtual options for everything. Conferences, you know, making telehealth accessible and not insisting on, oh, everybody show up at the office five days a week. You know, many people with disabilities prior to this pandemic were denied for work from home as an accommodation. You know, telehealth is also good, it’s convenient, it saves the cost of transit, you know, wasting time sitting in traffic. Especially if all you you’re going to do is, oh, these are your blood test results. These are your labs. Your B12 is low, your vitamin D is low. For instance, somebody who gets regular blood work, you know, telehealth allows you to do nutrition appointments. I just had a nutrition appointment this morning with my nutritionist, and tomorrow I have one appointment with my naturopath, which will all be virtual, click on a link. No need to run around. The big thing with telehealth is, you know, we need, still need to work on making platforms easier, more accessible. Especially when we look at the older generation that isn’t as tech savvy, you know, when we make everything accessible, plain language, you know, everybody wins regardless, disability or not. You know, keep it short, sweet, simple, to the point.

Donald Taylor: This is sort of reiteration of the previous question, but what practices that have come about from the pandemic and our response should be preserved to enhance accessibility?

Nicole LeBlanc: Well, preserving, you know, Appendix K, telehealth, remote therapy, having all college classes have a virtual component, not just a face-to-face component. Have everything hybrid between business, work, conferences, events, healthcare, you know, we should bring back doctor house calls. Like if we look at, you know, that’s one thing that could help right now: we’re getting, making vaccine access more accessible to people. In the beginning here, when the vaccines first came out, the vaccine website to go get a vaccine or register for at a clinic is not very accessible. First, I called my primary care doctor, they say, oh, go call 211 or 311, Montgomery 311, and then call that and to get the runaround. Finally, I asked somebody I know at SEEC, which is an agency right down the street from me, and they’re like, here, fill out this paperwork: we’ll take you. We’ll take care of you. Yes, vaccine access needs to be accessible. I even sat on Zoom calls, you know, all on, and a Facebook group, all on figuring out how to get people with disabilities vaccine access and brainstorm, figuring out. And one thing, all pharmacies and all doctors should have all vaccines, whether it be Pfizer, Moderna or whatever. It’s like, you know, you didn’t have to go through all these hoops. When we do flu vaccine, I can just walk into Walgreens here, fill out the paperwork, there’s your shot. And that’s that. Keep it short, sweet, simple, to the point.

Donald Taylor: What should grantees know about how they can support their remote staff?

Nicole LeBlanc: Well, provide job coaching, provide natural supports. Many people with disabilities, especially autism, who don’t have intellectual disability like me, do not get any HCBS supports. Voc rehab only provides short term, 90 days, and then you’re on your own. You know, having supports, using Google Docs, using, you know, accessible meeting platforms, providing help with covering cost of certain things, work from home stuff, doing check-ins, you know, not holding, when it comes to sitting up meetings, not holding back to back to back to back Zoom meetings without giving people a break to breathe. One downside, when we look at before this pandemic, and after, you know, with everything, a lot of meetings being virtual is, you’re not given that five minutes to breathe between meetings. Whereas when we were all face to face, we had at least five, 10 minutes to breathe, you know, run off to hear, run off to there. And quite often you’re seeing people, you know, in the beginning they were working more than 40 hours or whatever their regular schedule was and just jamming stuff in, in addition things like, you know, having multiple turnover, supervisors and all that, can lead to burnout. As somebody who used to work for state government, who left state government in 2020, due to burnout.

Donald Taylor: How, how have people with disabilities been taking advantage of the new options for teleworking and other remote access?

Nicole LeBlanc:It’s led to, you know, increased employment opportunities. You know, many people disabilities, you know, right now say, you know, we should not be rushing people back to an office. You know, we’re not endemic, first of all. And you know, and the new normal needs to be flexible. The new normal needs to include the needs of the disability community. You know, we do not wanna return to a normal, a normal that excludes us. Flexibility and control is essential. In addition, you know, we should, we should look at moving as a society and move to a shorter work week, which will help reduce burnout, you know, have make every Friday, let’s say, you know, a mental health day, which will help cut down on the burnout, Zoom fatigue. Focus on, you know, a New Year’s resolution, focus on slowing down, live in the moment. When we look at our, our culture so much is hustle, hustle, hustle, jam, jam, jam. Whereas you look at countries like Iceland, it’s so paced, laid back, focus on living in the present. You know, in addition here, you know, we should have a loose dress code. That’s been the best things, you know, is not having to always adhere to a conservative dress code. As somebody who comes from Vermont, who prefers laid back, you know, I’m not, you know, the person who’s like big on suits and all that. Laid back dress code is essential in the new normal.

Donald Taylor: Tell us about the trauma that many of the especially vulnerable people have felt as a result of the rest of the population going back to normal.

Nicole LeBlanc: Well, it’s, it makes people never scared, cuz long COVID is still a threat that people, the general public and our government continue to downplay. From day one, we’ve all said this was gonna be a mass-disabling event. We need to approach this pandemic as it’s, act like it’s cancer. If cancer was spreading like this, would we be downplaying it? No. Yeah. Every time, you know, if we were approaching this as if it’s cancer, we wouldn’t be acting this way, you know. Cause when you hear the word cancer, the C-word, feels like a punch in the gut. And it just makes everything stop, your world stop, every time you pick up the phone and hear somebody say that word. You know, we’ve seen health disparities, you know, many people with disabilities were denied ventilators, denied the ability to have staff come to them if they have to go to the ER, the hospital, which is, you know, many of us here, you know, also have difficulty, you know, communicating, like communicating events, da da da. Like for instance here, you know, on March 13th, like ended up going to the ER, when what was determined to be a panic/anxiety attack. I woke up on the 13th having chest pain, sweating, which prior to this year, I’ve never had panic attack in my life. And if anything, you know, this pandemic has given the whole world a simulation of what it’s like to be disabled. When you look at ADD, it’s raised anxiety levels, it’s raised concentration levels. And we look at the great resignation, you know, one thing that that led to the great resignation is people are tired of burnout. People are tired of not having control. And, you know, authoritarian-type management styles are not gonna cut it going forward. You need to focus on, you know, if you take care of your workers, meet their needs, you know, then you’ll have a better bottom line. It’s time to put people before profit. Health is the real wealth, not silver and gold. You don’t know how good you have it till it’s gone. You know, we take, you know, this pandemic is exposed how much we take for granted.

Donald Taylor: How has increased flexibility in employment benefited people with disabilities?

Nicole LeBlanc: Well, it’s led to, you know, more people with disabilities getting jobs. It’s definitely increased, you know, and, and we look at the worker shortage, here has helped, which, you know, which right now, if we really truly wanna address the worker shortage, you know, one thing that would be smart is to get rid of the benefit cliffs in SSDI, where the all-or-nothing cash cliff, and get rid of asset limits, and earnings caps. SSI, SSDI, expand Medicaid buy-in. You know, doing that would help long-term and solving the workforce crisis, you know.

And then the DSP shortages, you know, the direct care. We need to stop paying direct support providers, lousy wages. You know, you make more working in an institution than you do in a HCBS setting, which isn’t fair. And then, of course, if you self-direct, one advantages of that, not only can it, you know, possibly reduce COVID risk exposure, compared to being in segregated settings where the risk of COVID is off the charts; by doing self-directed services, it also allows you to put in measures to reduce risk and pay your staff a higher wage. So instead of paying somebody, oh, let’s say 15, you could maybe pay somebody, I don’t know, 20-something and take less hours. Like for instance, agencies in Vermont I know that are allowing people to be more flexible with taking less hours and paying more, no staffing prices, yet people that are keeping wages at 15 or whatever are still struggling. Everybody in this country deserves a livable wage. We must get rid of sub-minimum wage. It’s time that we start treating our caregivers with respect, and it’s time that we start supporting families.

Now many families talk about how they feel forgotten. They feel like they’ve been, they feel disposable. I know one one mother in Vermont who developed long COVID from the Delta variant when she and her son with autism, who uses FC or supported typing, caught it back in 2021. And it’s, like, she has struggled massively to deal with getting support for her son, so that she can focus on healing. You know, and paid sick leave needs to be mandatory and paid leave in general, you know, the era of going to work for the cold is over. It’s time for common sense solutions to fight our nation’s gravest challenges. And it’s time to get comfortable with being uncomfortable and build and foster resilience. Now, we must use this crisis and use it to prevent the next one. It’s time to, you know, do the dirty work and let’s make this the last pandemic we ever have to deal with.

Donald Taylor: Nicole, thank you for talking to us today about an issue I know is very important to you.

Nicole LeBlanc: Well, hank you for having us, listening us today and joining us on this program. We look forward seeing you in a future episode.

Announcer: You’ve been listening to the AOD Disability Employment Technical Assistance Center podcast.

Today we spoke with Nicole LeBlanc, DETAC’s Self-Advocate Advisor.

The AOD Disability, Employment Technical Assistance Center, or DETAC, is a project of the Lewin Group and TASH, created by a grant from the Administration for Community Living to provide evidence based training and technical assistance to Administration on Disabilities grantees aimed at improving competitive integrated employment and economic outcomes for individuals with disabilities across the nation. To learn more about DETAC, visit AoDDisabilityEmploymentTACenter.com for news and alerts about upcoming webinars and podcasts. You can follow us on Facebook and Twitter.

Music for the DETAC Podcast is an original composition and performance by Sunny Cefaratti, the co-director and autistic self-advocacy mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org.

We’ll have another episode on competitive integrated employment for you in the near future.

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This discussion was originally recorded on January 5, 2023.

This audio recording and transcript has been lightly edited for content and clarity.