Independent Perspective In Depth Episode 2

Guest:  Mark Shaw

Topic:  ILNC Advocacy for PWD

Duration:  25.32

Published:  March 14, 2021

Host:  Welcome to Independent Perspective In Depth, a program presented in the public interest by the Western New York Independent Living family of agencies courtesy of the Niagara Frontier Radio Reading Service. Using this long format we will be exploring the broader issues affecting the community of people with disabilities, in discussions with knowledgeable individuals from a variety of organizations and backgrounds. We're delighted to have as our guest for today Mark Shaw, Independent Living Specialist and Systems Advocacy Associate with Independent Living of Niagara County. We're hosts Jillian Moss Smith and Ernest Churchwell. Welcome to the program, Mark.

Guest:  Thank you.

Host:  So Mark, we understand that working to overcome your own disability prompted you into advocacy and taking a leadership role. Could you tell us about this?

Guest:  Well, when I got sick, almost 20 years ago, almost died from it. When I came back, I was in a coma, I could not speak, I had to relearn pretty much everything. It enabled me when I could talk again I was oftentimes discounted as not knowing what I was talking about. Or just not knowing in general. And it just irritated me to the point that sometimes I just wanted to scream. And it taught me to grow and become   the voice for those who either can't speak literally or maybe they're just too timid to speak up for themselves in fear of making somebody else mad or uncomfortable. So I have no problem speaking up for them, being their voice in either account.

Host:  I believe you had a leadership position in a local organization?

Guest:  Yes, I was on the board of directors. I represented the eight counties of Western New York for the Brain Injury Association of New York State, or for short BIANYS. I did that for a little over a year, might have been a little over two years. But there was another stepping stone along the way.

Host:  Alright, well, on to the main business. Since the 1970s when they were inspired by civil rights successes of proponents for minorities, the elderly and women, grassroots advocates of people with disabilities worked on the system's level, pushing for ramps and curb cuts for wheelchair users, Braille signage for the blind, sign language Interpreters for the deaf, picture boards for those with communication disorders and much more.

Discrimination also occurred for individuals, for instance in covert test cases by NBC News, it was discovered that the paperwork of job applicants with obvious disabilities were thrown out, while those of able bodied allies with fewer work qualifications were accepted. Similar results occurred for people of each type seeking housing with few opportunities being offered to would be renters with disabilities.

As an employee of Independent Living of Niagara County, which is a member of the Western New York Independent Living family of agencies, advocacy is one of the five independent living core services that the organization provides. Can you tell us generally what advocacy consists of in respect to the organization and your duties?

Guest:  Well, the agency, what we particularly focus on in Niagara County, is having our love of towns and our tale of two cities, more or less. But for Niagara Falls to get on board with the ADA, and the ADA standards, the city's or towns or private stores or businesses, whatever are not in compliance or a complaint is brought to us. I go and check out and/or send a letter to have them fix their mistake or the problem, the complaint. And now I try to get out for them doing accessibility checks for new places, service such as the Heart and Soul Soup Kitchen here in Niagara Falls.

Host:  Awesome. Very important job. Without mentioning the names of consumers can you tell us some examples of advocacy work that you and Independent Living in Niagara County have worked on?

Guest:  Yes. Recently, just a few weeks ago, you wouldn’t know it was just a few weeks ago with the weather today, but not too far away was a curbside and sidewalks that were not taken care of. We had a consumer that came to us and posed a complaint that they weren't taken care of. And she contacted the town of Niagara Supervisor, and he got right back to her and he was not real happy with the businesses on the side of the road that was his township.

Host:  Alright. If you've just joined our program you're listening to Independent Perspective In Depth, a program presented to the public interest by Western New York Independent Living. Our guest today is Mark Shaw, Independent Living Specialist and Systems Advocacy Associate with Independent Living of Niagara County. We'll continue exploring his advocacy work in the community.

So Mark, the agency recently entered an overarching program of the New York Association for Independent Living, with the aim of furthering advocacy efforts in Western New York called the Statewide Systems Advocacy Network or SSAN for short. What can you tell us about the purpose of the program?

Guest:  The purpose that I've gotten so far is to bring the whole disability community all across the entire state together and work as one voice. So we can get better funding for things such as Access to Home, and other types of services so we have more to offer, we can do more basically for the people we serve.

Host:  Even as New York State is working to function more as COVID-19 restrictions are gradually lightened, there are certain activities that need to take place as part of the SSAN program. Can you elaborate on those so our listeners will know what to expect in the coming year?

Guest:  Well some of the expectations for what we have to do, we can do a lot. At this point in time, as far as like sending email blasts out, different important announcements or different things that we are trying to gain is important and, but also partnering up with other grassroots agencies, spread throughout the communities, and working together with them on different things, whatever it might be at that particular point in time.

Host:  And does ILNC partner with other advocacy focus agencies in the area and if so what initiatives or activities have you worked on together?

Guest:  We haven’t really partnered with anybody other than, Sarah Lockword, she is a great woman, I have to give her credit. And it is disability perspective on things that need to be accomplished or need to happen to bring the city in to compliance. In Niagara Falls we have the ADA task force which basically addresses the same things as there's a couple brought to us within the city, whether it’s sidewalks, accessibility of parks, our buildings. We bring to them, to the city to get it solved or come to some sort of solution. And we are currently in the works of trying to form a partnership with Niagara Falls Housing Authority because they’re about to do a big reno? project on one of their housing units, as well as more housing right in that area. It’s going to be like housing avenue revitalization or something like that. But they've been, well, we're trying to get them to be. And so far we got pretty good support for it, but they have a disability outlook so things can be made accessible to all. If something’s not going to work we can stop them before it is fully constructed and has to be demolished to be fixed which would not be very cost effective. So we’re trying to save them money by noticing it before it is finished and has to be removed.

Host:  Something that you were alluding to is the cost of retrofitting to make places more accessible. As you're more familiar with the ins and outs of the Americans with Disabilities Act then am I, aren't there some aspects in which older buildings are grandfathered in, so to speak, or for where making the changes is considered to be an undue burden. And so we can't really press for that kind of change as we might like?

Guest:  Yes, when they're over a certain age they can be grandfathered in, and don't really have to be in compliance until their brand models as refurbished we have to offer then it varies on depending on the degree of rehabilitation what they need to have done, as far as accommodations. But if they’re remodeling, its all brand new, they have to comply.

Host:  It's good to know that there is that avenue anyway. Generally speaking, while your agency has seen some successes over the years, I don't recall anybody's saying that Niagara County has essentially become a utopia for people with all disabilities although maybe I just missed the bulletin. What barriers to equality for people with disabilities are out there now that still need to be worked on would you say?

Guest:  Well, we're still fighting for equal access in housing and transportation. And prior to the pandemic, with the new mayor here in Niagara Falls, he was going to bring on individuals with disabilities, and citizens in city hall. But with the pandemic everything got put on hold but there are challenges we face all over the place.

Host:  And Mark if people with disabilities are facing certain obstacles to equality, such as, perhaps like a business that doesn't offer disability parking spaces or that isn't fully accessible to people with disabilities, I think now we know that you can assist them. But how can you help them in these types of situations?

Guest:  Well, I mean I don't personally advocate for them. I can go in and address the building owner, and or management, they get things taken care of. In the recent past we had an issue with a certain local health fitness gym and their shutting down their elevator due to the pandemic. I had to educate them that yes, the government and the state law is one thing but federal law and the ADA is a higher standard that trumps them so that got taken care of too.

Host: Because ILNC is part of the SSAN network that brings in Centers for Independent Living from all across New York State and I believe there's what 46 of them, something like that. Are you ever able to call upon the resources of some of the sister agencies for particularly large efforts?

Guest:  If we needed to we could reach out to the other sister agencies across the state. I know we can reach out to NYAIL, it’s kind of like the end of a song? And it will go and spread out from there so if we need it, this is when they have our back we’d have their backs, as one need wants its the other?

Host:  Something that's fairly current is people wanting to get their COVID-19 coronavirus vaccines and we've noticed that every few days, New York State, opens it up to larger chunks of the population, they've just lowered the standard from people over 65 to people over 60 as well as certain other classifications, I believe, what can you do in the way of educating people concerning vaccines in their availability?

Guest:  Well we can't really push it. We can help them to understand the facts. And they have their dignity of risk, if they so choose to take the vaccine or so chose not to, that’s really all up to them. All we can do is educate them, help them find the answers that they might be looking for and to help them if they so choose, help them find a distribution site to get vaccinated.

Host:  Just wondering, the state attorney general, not that long ago came out with a report indicating that COVID-19 related deaths in congregate care facilities such as nursing homes had been considerably underreported. And there's some including one in Newfane that have made the news in the past for being super spreader situations. Have you had any personal experience in helping people deal with these issues?

Guest:  Not with the actual individuals that are in there, there’s a whole other team that does that. But I've dealt with and helped a lot of the family members. I've assisted a lot of family members that have loved ones in the nursing homes that don't want them out of there or don't feel that they're getting their proper care. And I've gone head to head with an administrator of a nursing home. Prior to the pandemic I assisted with helping a woman relocate from Newfane nursing home as well.

Host:  Well, as you may be aware, the Director of Independent Living of Niagara County, Sarah Lanzo had an editorial in the Lockport Union Sun and Journal in late February in which she points out that our leaders have not been taking advantage of an obvious solution to the congregate care facilities super spreader situations, which is helping people get the resources and the tools they need to live independently in the community. Things like Money Follows the Person, Open Doors, Consumer Directed Personal Assistance Services, and certain other programs that people could easily connect up with if they had talked to you at the agency. What can you offer with regard to these better alternatives?

Guest:  Again, we can't push people into making one decision or another, it's ultimately up to them. We can just educate them. And, I mean, personally from being in the hospital for months to the day, and being in the hospital several times after that, I would much rather be out on my own, be out in the community with personal care assistance and such to help me. Rather than being locked away in a facility whether it be a hospital or a nursing home or other.

Host:  Well, Mark, you’ve raised a lot of questions in people's minds and I'm sure they'll still have some even though this is a longer program than our traditional five minute show that’s heard on a commercial station in the area. But I'm sure you're eager and willing to provide answers to people if they contact you, can you tell us what is the avenues that people should use to be in touch with you?

Guest:  They can call the agency's local phone number here in Niagara County is 716-284-4131 and I am at extension 208. Or they can email me at

Host:  Great. Well, that's in the event that people didn't catch that they can always call Western New York Independent Living, the mother agency and be directed to people at you, our Batavia office, or any place else. Any case, we thank you so much for being with us. And let's, oh I'm stepping on co-host’s Jillian’s line, I'm sorry about that.

That's okay. Mark, thank you so much for being with us today. We and those listening are grateful for all that ILNC does for the consumers in the community.

Guest: Thank you.

Host:  You've been listening to Independent Perspective In Depth, a program presented in the public interest by Western New York Independent Living family of agencies, courtesy of the Niagara Frontier Radio Reading Service. Our guest has been Mark Shaw, Independent Living Specialist and Systems Advocacy Associate with Independent Living of Niagara County.

This program features the song A Little Ditty on the Dance Floor by Jay Lang available under a Creative Commons Attribution, non-commercial license.

Where your hosts, Jillian Moss Smith and Ernest Churchwell. If you wish to hear this program again, a couple of days after the on the air broadcast, you can find a podcast on the Niagara Frontier Radio Reading Services website, at on the Programming tab under Bonus Programs, and also on under Public Relations Podcasts. All please have a good week and be safe.