Independent Perspective In-Depth #9

Guest:  Lindsay Miller & Meghan Parker

Topic:  New York Association on Independent Living

Duration:  28:20

Published:  May 9, 2021

Host:  Welcome to Independent Perspective In-Depth, a program presented in the public interest by the Western New York Independent Living (WNYIL) family of agencies, courtesy of the Niagara Frontier Radio Reading Service (NFRRS). Using this long format, we'll 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 are delighted to have as our guests for today Lindsay Miller, Executive Director and Meghan Parker, Director of Advocacy of the New York Association on Independent Living (NYAIL). We are your host Jillian Moss Smith and Ernest Churchwell. Welcome to the program, guys.

Guest:  Thanks for having us.

            Thank you.

Host:  Our pleasure. Before we discuss the terrific work the NYAIL supports for citizens with disabilities as our format permits us to explore a topic in greater detail than many other public affairs program, we'd like to start out by learning what our guests have brought to their current positions. Lindsay what experience in the disability field or an organizational administration has contributed to your role as executive director?

Guest:  Sure, so I've actually been with NYAIL since 2008, so I've been with the organization for quite a long time now. I started as Advocacy Coordinator, and I became the Executive Director in 2013. Prior to joining NYAIL, I received a master's in public health, with a concentration in policy.

Host:  Awesome, thank you, and Megan you seem to always be on the forefront of issues of concern to New Yorkers with disabilities as you often issue action alerts. What was your background and advocacy before this?

Guest:  Sure, so before coming to NYAIL, I worked actually at a local Independent Living Center Westchester Disabled on the Move in Yonkers, as their Systems Advocate and then Director of Advocacy, so I have a long history of work in the disability rights movement and independent living in particular.

Host:  When many people hear the phrase independent living, or even search for it online, it brings up visions of communities for senior citizens who need more supports than a typical apartment complex could provide. In the Empire State, Independent Living Centers or ILC's are actually barred from operating residential facilities; that would be a conflict of interest, since they do referrals to the housing situations that would be best for each consumer with a disability. How else do ILCs help people with disabilities improve their quality of life?

Guest:  Yes, that's actually a very common misnomer whenever we're in meetings or talking about ILCs to people who are not familiar with us, make a point of starting by saying we're nonresidential or community-based nonprofits. And I always describe ILCs as an access point or resource point for people with disabilities, their families and others. All of the center's services are focused on helping people navigate the very complicated service systems to access the supports they need to live independently in their community. So, all ILCs have a core set of five services: Information and Referral; Independent Living Skills training; Peer Mentoring; Transition; and individual and systems Advocacy. And then the center's offer additional services and it really varies based on the needs of the community. So many centers in New York State may be providers with OPWDD, the Office of People With Developmental Disabilities, or the Office of Mental Health, many of them serve as fiscal intermediaries for the Consumer Directed Personal Assistance Program. So, they're really designed to meet the needs of the community, and to kind of help fill the gap for the services that people need or the support people need, so that they can live in their own home in their community.

Host:  So, in traditional paternalistic agencies serving individuals with disabilities, staff would tend to dictate what they believe to be the safest path for their consumers to take. Their attitude may be summed up similar to I'm a professional I know how you should live your life. In what way are ILCs different?

Guest:  ILCs are based on consumer control, consumer control. You know, peer services are very popular now particularly in the mental health system, we hear about them kind of more and more now in various service systems but, peer support really originates with ILCs. They're created and required by statute to have the majority of board members and staff be individuals with disabilities. So, all of the services are provided from peers which share the experience, from the perspective that people with disabilities are the best experts on their own needs. And we help empower individuals to take charge of their own lives, their own services, their own decision making, etc.

Host:  Yet you can't underestimate the value of lived experience, but we have a question how many ILCs are there in NY State? As a starting point, the NYAIL website lists 32 member ILCs but that's not in counting the branch agencies and satellites. For instance, there is one listing for WNYIL’s headquarters in Buffalo, but that also includes Independent Living of Niagara County with offices in Niagara Falls and Lockport, Independent Living of the Genesee Region with offices in Batavia and Warsaw, NY, not to mention outreaches like The Renewal Center in South Buffalo and NFRRS in Cheektowaga. I could go further without leaving the five counties WNYIL serves. Do you have an approximate statewide total of ILCs?

Guest:  Yes, so there are 33 corporate entities in NY State that collectively have over 50 offices statewide. So, I mean you give the example of how the WNYIL center is structured and that it's one corporate entity but then there are several satellite and other types of outreach offices. And then the funding really varies among the centers, between state funding, federal funding, both. Sometimes there's local funding or just kind of fundraising efforts that help support having a presence in the community. But so, we do say that there are over 50 offices statewide.

Host:  Wow. Can you please tell us about the NYAIL mission statement?

Guest:  Sure, NYAIL actually recently updated its mission statement through a traditional board strategic planning process. So, our current mission statement reads NYAIL leads Statewide Independent Living Center efforts to eliminate physical and habitual attitudinal barriers to all aspects of life, and to fight for the civil rights and full independence of all people with disabilities. I think when we updated our mission statement recently, we really made the emphasis on our role organizing centers, and kind of the organizing role that we play in NY State.

Host:  Well that's still a rather sweeping and ambitious statement. How does NYAIL work with and support all those ILCs across the Empire State?

Guest:  We provide a number of services and kind of supports to the centers that you would imagine the traditional Trade Association does. So of course, technical assistance to the center network to help build advocacy or help build capacity. We also do statewide advocacy on behalf of the Centers and the people that we serve. And of course, there's also administrative advocacy, helping the centers because the centers have various funding streams. There's often some administrative advocacy needed to help centers maintain and build that capacity. And then more recently we've taken on this program administration role in collaboration with our members where we administer programs and subcontract out to our members to help kind of build the services that the people we serve need.

Host:  So NYAIL administers several programs throughout the state. Can you tell us about those programs and the ways that they serve citizens with disabilities?

Guest:  Yeah, so as I just mentioned, all of the programs that we administer are done in collaboration with our ILCs. So, we play the coordinating role, and then subcontract to our member ILC is to provide staff on the ground, and the focus of all of our programs is on core independent living services. So, the one of the main programs that we have that people are probably familiar with is the open doors program. So, it's a transition program to help people get out of nursing homes and other institutions. So now plays a coordinating role at the state level and then there are a number of Independent Living Centers we staff Transition Specialists, and peers that enter into nursing homes and other institutions and kind of provide that direct service to individuals. We also do education to nursing homes so that they refer people who indicate they want to go home. And then we've got two other housing subsidy programs that really work hand in hand with Open Doors program. That's the Olmstead Housing subsidy program and the rapid transition housing program. And those programs are very similar to Section 8, which some people might be familiar with where we provide a housing subsidy specifically for people with disabilities that are either institutionalized, or at risk of institutionalization, and need assistance, paying for their housing in order to live in the community. And then we administer an advocacy program that focuses on statewide systems advocacy issues. All the centers do individual and systems advocacy, but oftentimes that systems advocacy is focused more at the local level. In this program, the statewide systems advocacy network, helps them to have the capacity to do some organizing around statewide advocacy issues. So those are kind of our main programs over the years. We have other smaller ones, but those are kind of the ones that are most known to the organizations that we work with.

Host:  Well actually, that sounds quite impressive and I salute you. To our listeners I'll mention that if you just joined our program, you're listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL. Our guests are Lindsay Miller, Executive Director and Megan Parker, Director of Advocacy of the NYAIL. We’ll continue exploring the exciting work of this organization.

So NYAIL is also a strong advocacy agency fighting disability-based discrimination and attempts to infringe on or chip away at consumers rights. Over the past few months during the NY budget process, there was a lot of activity around a campaign called Fair Pay for Home Care, would you explain to our listeners what that campaign is and why it is important?

Guest:  Sure. Hi this is Megan, so Fair Pay for Home Care was an effort, largely spearheaded by a group of organizations under the banner of the Caring Majority, which is a group of organizations that serve people with disabilities, seniors, representatives for homecare workers and people displacing years of homecare workers themselves so it was a large group effort all fighting for increased wages for homecare workers. So, NY has one of the worst crises for people's ability to access homecare in the country and it's because the wages that Medicaid, which is really the only insurance that pays homecare workers, basically pays minimum wage or slightly above statewide. And this has resulted in especially upstate, a real lack of aides. So, in the programs Lindsay described we have people all over the state, helping people try to transition out of nursing homes and too often we're unable to get people out, not because of any other reason other than there's no homecare available. And we've been finding this increasingly happening more and more, especially as wages and other sectors, increase. For example, fast food workers, as of July 1 will be making $15 an hour statewide, where everyone north and west of Westchester, in the homecare field will be making closer to $12.50. And so, this is only going to exacerbate the problem we're already finding with an inadequate workforce to make sure that people have the care they need to stay at home. And so we all came together to fight for the minimum wage for homecare workers to be 150% of our region's minimum wage, which we believe would really help address the crisis by bringing many more people into the workforce, it would of course help the workers by giving them more of a living wage. And when we talk about consumer directed personal assistance, it really would improve the ability of people receiving those services to recruit and retain their own aides and because that's been very difficult, increasingly, so over recent years. So, there was a huge campaign, a big push, we had a lot of support, I'm happy to say in the Senate. And we were really happy about that. Unfortunately, it was a big ask in the budget so we, it didn't pass but, we will keep pushing for it because it's such a critical issue, making sure people have the care they need to remain at home, and at  institutions.

Host:  All right, whether an individual with a disability has mobility disabilities, issues of sight or other difficulties in getting around, much of the state doesn't have a whole lot of public transportation outside of urban centers. Since transportation is one of the biggest barriers to independence for people with disabilities in this region, how is NYAIL and the Independent Living network, advocating to address this barrier?

Guest:   Sure. So, as we switch from the budget to the legislative session in New York state we're starting to push more legislative priorities and we have a couple of issues, transportation priorities that we're advocating for to increase accessible, affordable transportation statewide. So, one issue is to increase accessible taxis, which has been a long struggle. But we have a bill that would create minimums, in terms of fleets, so that people could actually get accessible for hire vehicles. We've been advocating for this with the transportation network companies as well. So that's one issue and the other issue is expanding paratransit services so in areas where it becomes more rural and I know this is an issue in parts of western New York paratransit doesn't cover every area, right, it mirrors the fixed route bus, but it doesn't have to go much further than that. And so actually, Senator Kennedy from this area is carrying a bill to double the mandatory minimums in terms of service so that paratransit service would be provided within three miles of a bus stop instead of three quarters of a mile.

Host:  Awesome. NYAIL recently launched a media campaign entitled Living at Home, Not in a Home. Can you tell us about that?

Guest:  Yes, so, over the last year with the pandemic of course everyone was horrified watching the news and seeing just the death toll increasing in nursing homes and just the tragedy that was occurring. And there was so much more attention on nursing homes and the problems in nursing homes, due to the pandemic than ever before. Of course, in independent living we've long known that issues like poor staffing, lack of oversight, poor infection control have like always existed in these facilities because we go in them and we work with people who live in them. And, but most people don't know that and so the popular misconception is that nursing homes are the safest place to be. And we feel strongly, we've always felt strongly that that's not the case. It's also not the place where most people want to be, right. No matter what your age is most people want to age in place, remain in their homes with loved ones and supports and services and so really the network as a whole came together to try to launch a public awareness campaign, essentially, and that we are living at home, not in a home, to really try to raise awareness that these problems have always existed, that there are other options. And there are ways to get assistance with obtaining those options and Independent Living Centers of course being the best place to go to get assistance, and trying to really move the conversation somewhat to not just focus on the problems of nursing homes, but also to get people more aware that there are these community based alternatives that they actually are safer, and really try to get more attention on that. You know we talked about fair pay for home care and trying to get the state to really invest in community-based options instead of just trying to fix what's wrong in the nursing homes. And so, we've done a number of things we've had some great media coverage around the state as a result of we've launched a social media ad campaign, and just trying to get the word out.

Host:  It just occurred to me, how clever, a slogan, living at home, not in a home is because it's a real conversation starter people say, what are you talking about, and then you can just take the ball and run with it from there. Well, moving on, as both sides of the political divide, not to mention a lot of special interests have long known social media platforms such as Facebook, Twitter, Instagram, Tumblr, Tick Tock and YouTube are increasingly popular avenues to provide information to the public and that's not even mentioning dozens of smaller platforms. Does NYAIL have social media accounts that you would like to share so that our listeners can get in on the act?

Guest:  Yeah absolutely so we primarily use Facebook and Twitter. You can find us on Facebook, looking up NYAIL, and on Twitter, we're at NYAIL so @NYAIL. And we really with our social media try to lift up, what the centers are doing around the state as well as what NYAIL is doing as an association, and the advocacy work we're promoting. We share a lot of action alerts and articles of interest in addition to events and things that the centers are doing. And so, it's a great place to find out more about not just what NYAIL is doing but really what's going on around the state.

Host:  Awesome, thank you for sharing that, and does NYAIL have any events in person or virtual coming up that you would like to announce to our listeners?

Guest:  Sure, well, right around the corner, we're doing a legislative week I guess you'd call it. Now that everything is virtual for now the state capitol is closed to visitors, so everything is done via web conferencing. And so instead of just picking one day we kind of have the flexibility of a whole week. So, the week of May 10 the centers are actively scheduling business right now and we'll be meeting with legislators trying to educate them on the barriers that people with disabilities face and what we think some of the solutions are. And we'll also be planning a conference in the fall. So those details are to be determined, but all of that information and details will get pushed out over those social media accounts I just mentioned, so it's a good place to find out more as it becomes available.

Host:  You just reminded me of something talking about your virtual events. This past February, you had the legislative Education Day, where you and volunteers got together on Zoom to address our issues directly to our leaders across the state. How would you say that that went?

Guest:  I think it went well we had an opening program at the beginning of the week where we had a number of legislators who work on issues important to us, spoke to the group and we had a really nice turnout. One of the benefits of doing things virtually of course is more people can participate who might otherwise not be able to make the trip to Albany to come but if it's on Zoom or streaming live on Facebook, which by the way we do a lot of as well, streaming events on Facebook. And it's so much easier for people to participate. And so, I think one benefit is we get more participation, and then we had a really productive week of visits that was really focused on the budget. And the network's always great and meet with a ton of people and do a good job of educating them. And now our sites are focused more on the public policy side of things.

Host:  Well it looks like you really have a handle on the tactics to take to get things done for the betterment of people with disabilities. Something I'm curious about the NYAIL website describes one of your key values as inclusion through diversity and intersectionality, which involves disability led advocacy for justice and civil rights as well as collaboration in solidarity to foster community. Mind you I had to have that written out so that I could say it all correctly. Could you simplify these concepts for our listeners?

Guest:  Yes absolutely so NYAIL and really through the local Independent Living Centers have been focusing more and more in terms of working with other community groups, other stakeholders, we've always done a good job of working with other natural stakeholders like seniors and other disability groups for really proactively making sure that we're working with groups like Black Lives Matter, immigrant groups, LGBT groups, all of which intersect with disability, and all of which have different shared interests. So, there's a lot of getting out the vote activities last fall, doing a lot of just public education and awareness campaigns with different groups. And trying to really promote civil rights, there's been a lot of good work around police reform in local communities that perhaps in the past Independent Living might not have thought that was a natural fit and now they're actively participating right because that impacts people with disabilities but it's important for us to be at the table and also concerned with other groups where disability intersects. So, we've really been trying to step up those efforts, and it's, I'm happy to say the centers have been just doing so many really important projects around the state with more and more diverse groups.

Host:  That's awesome to hear. Is there any aspect of your services that you would like to visit further for our listeners information?

Guest:  I feel like we covered so much. Lindsay, anything you want to touch on that we didn't hit yet.

No, I don't think so. I think certainly just promoting the Living at Home, Not in a Home campaign, we think that's an important public education message and there's information about it on our website and via social media, so we just ask everyone to help spread the word.

Host:  Speaking of getting out the word, I suspect that even after this long of a show some of our listeners probably have questions for you. How can they best contact you?

Guest:  Well, certainly you can visit our website which is, and I know that Megan has already shared our social media so that's certainly another great way to get in touch with us.

Host:  Awesome. Lindsay and Megan thank you guys so much for joining us today. It was definitely very informative for us and our audience and we appreciate your time.

Guest:  Thanks for having us.

Host:  You've been listening to Independent Perspective In-Depth, a program presented in the public interest by the WNYIL family of agencies, courtesy of the NFRRS. Our guests have been Lindsay Miller, Executive Director and Megan Parker, Director of Advocacy of the NYAIL.

This program features the song A Little Ditty on the Dance Floor by Jay Lang available under creative commons attribution noncommercial license.

We’ve been your hosts, Jillian Moss-Smith and Earnest Churchwell. If you wish to hear this program again a couple days after the on air broadcast, you can find a podcast on the NFRRS webpage and on the Programming tab under Bonus Programs, and also on under Public Relations/Podcasts. Have a good week and be safe.