Disability Rights New York

Guest:  Helen Hellmuth

Topic:  Disability Rights New York


Published:  July 4, 2021

Host:  Welcome to Independent Perspective In-depth, a program presented in the public interest by Western New York independent Living (WNYIL) family of agencies, courtesy of the Niagara Frontier Radio Reading Service (NFRRS). Using this long format, we will be exploring the broader issues affecting the community of people with disabilities and discussions with knowledgeable individuals from a variety of organizations and backgrounds.

We are delighted to have as our guest for today Helen Hellmuth, Senior Advocate with Disability Rights New York or DRNY. We are your hosts Jillian Moss Smith and Ernest Churchwell. Welcome to the show, Helen.

Guest:  Thanks so much for having me. I am quickly going to do the COVID thing, I have a dog, I hope he stays quiet during this interview, but if he doesn't…

Host:  He just wants to make a guest appearance.

Well, we love women's best friend too. Okay, we'll be getting into some of the details of your program as the show continues, but can you tell us in broad terms how DRNY goes to bat for people with various disabilities?

Guest:  Definitely, so, DRNY, we provide free legal and advocacy assistance to people with disabilities through a variety of channels. We provide technical assistance, direct advocacy, representation at hearings, monitoring and much more that we'll get into later on.

Host:  Awesome. And when was your organization founded and what geographic area does DRNY serve?

Guest:  DRNY was first founded in 1989 under a different name, Disability Advocates Inc., and so for 25 years Disability Advocates, Inc, advocated for and litigated for the rights of people with disabilities, and then in 2013, we were designated by the Governor as the Protection Advocacy and Client Assistance Program in New York State, and have been operating as DRNY ever since. We serve all of New York State, including New York City but we do have three physical offices, one in Rochester, Albany and Brooklyn.

Host:  Marvelous. Over the years, DRNY has come to play a pivotal role as you just indicated in the Federal Protection and Advocacy or P&A System, as well as the Client Assistance Program, or CAP throughout the state. First looking at P&A, it has the distinction of being created primarily to prevent a recurrence of the horrors that happened in one institution, the Willowbrook State School for children with intellectual disabilities in Staten Island.

Senator Robert Kennedy toured it in 1965 and deplored it as a snake pit for its massive overcrowding, with 6000 residents, 50% more than the school's capacity, plus filthy conditions, dangerous and unethical medical experiments and abuse of the residents.

Over the next several years disgusted employees were whistleblowers who smuggled in some journalists to film the conditions. The best-known local TV reporter Geraldo Rivera won a Peabody Award in 1972 for his expose. This led to state legal action to present the protect the Willowbrook class of liberated residents and the facilities closure but that was not until 1987. Considering its pivotal role in how people with intellectual disabilities are treated. Is there more you can tell us about this infamous institution?

Guest:  There are a ton of resources available online for listeners who are interested in learning more about the horrible conditions at Willowbrook, but what Willowbrook really did was expose the truth about the vulnerability individuals with disabilities face when living in state run facilities, and the sickening truth is, many of these institutions existed. So, in 1975, Congress determined that states were not capable of overseeing the delivery of the services themselves so the Protection Advocacy Program for people with developmental disabilities was created to serve as an independent oversight agency to make sure that individuals at these facilities were being treated fairly.

Host:  How do you work with the P&A System to assure decent treatment for your consumers?

Guest:  As the P&A, DRNY why has access and the authority to monitor at facilities that provide care and treatment to people with disabilities. This includes the ability to inspect and photograph, all facility areas used by people with disabilities. And so, under this authority DRNY may also speak to individuals at these facilities. So DRNY is able to hear firsthand the conditions that individuals are living in, and then advocate or litigate for necessary changes. We do a lot of monitoring at nursing homes, rehab centers, jails, and also polling places.

Host:  Well, we salute you for everything you're doing. Exploring another aspect that's under the P&A umbrella is an effort that has its own DRNY Advisory Council. Protection and Advocacy for individuals with Developmental Disabilities or PADD. We know that developmental disabilities include far more than just intellectual disabilities as some may assume. What are some other disabilities that fall under DD?

Guest:  The definition of developmental disabilities in the DD Assistance and Bill of Rights Act is a severe disability, with a mental or physical impairment that an individual must have acquired prior to the age of 22. It must be expected to be lifelong and result in limitations in three or more major areas of life. Some examples of developmental disabilities are ADHD, autism spectrum disorder, cerebral palsy, learning disabilities, however, the list is much longer, that's just a sampling,

Host:  Such as epilepsy, Spina Bifida, Acquired Brain Injury, Friedreich's ataxia and it kind of goes on and on.

What sort of assistance does DRNY provide under PADD?

Guest:  Our PADD program serves individuals with ID/DD and provides a wide range of services, many of which I mentioned at the top, investigation monitoring, directly for representation, advice and counsel. Recently PADD issued an investigatory report with the ACLU of New York, and the New York lawyers public interest group about New York state's response to protect people with ID/DD in group homes during COVID. So, they're doing a ton of work.

Host:  An outreach somewhat parallel to PADD is the Protection and Advocacy for Individuals with Mental Illness program, or PAIMI, created by government mandate which also has its own DRNY Advisory Council. How does DRNY serve this constituency?

Guest:  The PAIMI program provides similar services as PADD but instead of representing individuals with developmental disabilities they represent individuals with mental illness or emotional impairments. And to be eligible for services through PAIMI, an individual must have a significant mental illness, as determined by a medical professional. And to speak a little bit on the Advisory Council, the PAIMI Advisory Council has nine members, majority of whom must be diagnosed with a mental illness. The primary role that the council serves is to advise DRNY on its priorities and advocacy for individuals with mental illness.

Host:  If you've just joined our program you're listening to Independent Perspective In-Depth, a program presented in the public interest by WNYIL. Our guest Helen Hellmuth, Senior Advocate with DRNY will continue exploring the crucial work of this organization.

Over the years, various organizations in Buffalo and Rochester have hosted the Western New York office of CAP, the Client Assistance Program, which helps those with vocational rehabilitation issues. Have all of its functions in the Empire State been centralized in the capital district with DRNY?

Guest:  So, the CAP team serves the entire state as do all programs at DRNY.

Host:  Awesome and what type of circumstances would prompt an individual with a disability to turn to CAP, and how do you serve that consumer?

Guest:  CAP assists individuals navigating ACCES-VR, and the New York State Commission for the Blind. So an individual may contact CAP if they're experiencing roadblocks with either of these agencies; like if there's a lack of communication with their VR counselor, disagreement over an employment goal, if they need help applying for services, or if they think they need due process. I like to say if you ever have an issue related to ACCES-VR or the State Commission for the Blind, contact CAP just to see if they're able to assist. For example, earlier this month, CAP represented an individual at an impartial hearing, and the client was reimbursed, almost $7500 in tuition payments that was previously denied by ACCES-VR.

Host:  Bravo. While we've been dealing with these larger issues, we'd like to know more about you, Helen. As Senior Advocate, what is your role within DRNY?

Guest:  So my work is split between two programs, I work for the Assistive Technology Program, and also the Voting Access Program, which they go very well together because when you think of voting, one thing that many people think of is voting machines, and that is assistive tech. I have an individual caseload where I assist individuals who need help obtaining assistive technology, and I also do a lot of voting access work which involves serving polling places for accessibility, assisting people filing administrative complaints, and working with the board of elections to eliminate accessibility barriers at every point in the election process.

Host:  Awesome and what prior experience helped prepare you for this sort of advocacy?

Guest:  I grew up around disability and I didn't realize that not everyone had that experience. My grandfather, he acquired a TBI when I was five years old, family friends have had some severe disabilities. And then, what really prepared me to advocate was in college, I had an internship at a residential group home for teens with mental illness, and I saw firsthand the complicated hoops that these young adults had to jump through to get the support that they needed, and immediately after graduation, I started working at an Independent Living Center as an ICAN advocate, and I soon found myself at DRNY.

Host:  Well, we're very glad that it brought you there. Turning to very timely subject, events particularly in the last couple of years have compelled the public to consider possibly uncomfortable issues of injustices historically committed against minority groups. DRNY has made its position as an anti racist organization clear through its CARE, the Committee on Advancing Racial Equity. All subgroups of society include members with disabilities. How does CARE advance their concerns?

Guest:  Intersectionality is really at the core of all of DRNY’s work. You can't look at a person without looking at the whole person and internally, the care committee organizes ongoing in-service trainings to educate staff about race related issues and facilitate discussion. DRNY publicly addresses race-based violence and provides suggestions on how to provide culturally competent care to BIPOC communities, particularly those with disabilities. The voting access team, specifically that I work for, we created a series, a training series called Change Begins at Home, in which we have elected officials, and individuals with disabilities from different communities, talk about the intersectionality of disability, race, and local elections and how they all work together.

Host:  So, this may be a related question, but can you elaborate on the initiatives DRNY is involved with around citizens with disabilities and their right to independently cast a private ballot?

Guest:  We do so much in this specific wheelhouse. One of our biggest initiatives is going out to polling places on election day, and serving locations for accessibility, and then we report any accessibility concerns back to the local Board of Elections Office. We also represent people in the Help America Vote Act (HAVA) administrative complaint process when they have experienced, HAVA Title III violations at the polls. We do a lot of public education trainings to self advocates and self advocacy groups, about a variety of topics like general voting rights, what to expect when you arrive at the polls so they feel more confident when they, when they go to vote and mock elections. And, of course, we host voter registration drives and help individuals with registering to vote. So similar to what I said earlier about PADD if there's ever an issue with ACESS-VR, I always recommend contacting CAP, if anyone has a question, or wants to host a program related to voting, chances are the HAVA team will be able to help out.

Guest:  Alright, and you may have mentioned it, but ACESS-VR is Adult Career and Continuing Educational Services - Vocational Rehabilitation. Also, as a means of helping individuals with disabilities to become a more informed electorate, DRNY supports mayoral candidates forums such as the one WNYIL held recently for the city of Buffalo's mayoral primary. In what other cities have these forums taken place?

Guest:  DRNY, along with the Self Advocacy Association for New York State, Western New York. Independent Living Center and many other co-sponsor organizations hosted candidate forums ahead of the primary elections in Albany and Buffalo. We also, DRNY, worked with the New York City Campaign Finance Board postproduction to provide American Sign Language interpretation for the Democratic primary debate on May 13. You can find that on DRNY’s YouTube page. And because of DRNY's advocacy, moving forward, all debates hosted by the New York City Campaign Finance Board will provide American Sign Language interpretation and closed captioning. Our goal is to host another Meet the Candidates Day ahead of the general election to give voters with disabilities even more opportunity to ask the candidates questions that directly impact them, so be on the lookout on DRNY’s Facebook page for dates and registration links for these events, or if you're interested in learning more, you can contact me directly.

Host:  So, in recent years political considerations have led to particular news outlets being lionized by one group and disparaged by another. The need for people with disabilities to be informed consumers who can seek out the truth behind what is being said has never been more important. What types of media literacy trainings does DRNY facilitate?

Guest:  This is a new training within DRNY, it came about after meeting with self-advocacy groups. And one of the biggest takeaways from the 2020 election was advocates not knowing if the information that they were consuming was factual or if it was fake. This training was created to give advocates the tools and confidence they need to practice media literacy. It gives tips and tricks things to look out for.

Host:  Alright, DRNY engages in systemic and individual litigation, on behalf of people with disabilities who rarely have the resources to pursue fair treatment through the legal system on their own. What are some examples of cases that DRNY has fought?

Guest:  There are so many, and I'm going to talk briefly, I'll talk briefly about one but if you're interested in reading more about the past litigation, you can visit drny.org, and click litigation from the drop down menu to read about whatever case seems most interesting to you.

Host:  This is a long show, we got time for you to do more than one.

Guest:  I've got one good one for you. It's a recent case is DRNY’s lawsuit against Dollar General. DRNY, along with Carlson Lynch filed a nationwide class action lawsuit against Dollar General alleging it stores were not accessible to people with physical disabilities, and the settlement resulted in Dollar General training its field management team and all store personnel on title ADA Title III compliance. They now must provide a free toll free customer assistance blind phone number on all entrance doors with the international symbol of accessibility, giving instructions on how to report accessibility concerns, and district managers will also conduct quarterly compliance checks within the stores to make sure that the aisles are clear, that they're accessible.

Host:  That's awesome. I'm sure you've inspired many listeners to consider reaching out to you for advocacy and how does one go about getting services from DRNY?

Guest:  There are several ways to contact our office, you can call our intake team, toll free at 800-993-8982, you can email us at mail@drny.org, or write to us at 725 Broadway, Suite 450, Albany, New York 12207-5001. Someone from our intake team will contact you to talk about your concerns, and they will assign your service request to one of our programs for an attorney to review.

Host:  It's gotten so that despite the CDC guidance, people pretty much have to check a New York State website to find out what our standards are in terms of when and where people can meet. As of this day in late June, early July, are DRNY staff people meeting in persons with its consumers and if not, do you anticipate that changing in the near future?

Guest:  Our offices are currently still closed to the public. However, asterisk, if an individual has an extenuating circumstance or needs to meet in person, as a reasonable accommodation, they can speak to their attorney or advocate assigned on their case and discuss scheduling an in-person meeting.

Host:  Are there any other DRNY services we have not touched on that you would like to let people know about?

Guest:  Definitely. So, DRNY has nine CAP and PNA programs that support individuals with various disabilities and in specific problems. The PNA program that support individuals with various disabilities in specific problem areas like assistive technology and social security. So the way our programs are divvied up, you may be assigned to a program based on your disability; for example if you have a developmental disability or mental illness, or, depending on the problem area that you have specific to something like assistive technology or social security. We also have a new program that creates more equitable access for the deaf and hard of hearing community by providing ASL interpreting at events and adding ASL to all of DRNY’s YouTube videos. And the best way to learn about our programs is by going to our website at drny.org.

Host:  Alright, I'm sure people listening have questions about services that we haven't touched on yet in today's program. We were wondering what are the best ways for someone to reach out to DRNY, and we've got plenty of time left so if you want to give websites and email addresses and phone numbers and whatnot, go to it.

Guest:  I will do you one better, I will give you my direct contact information so if you have any questions about anything I mentioned today, or if you're interested in voting types of events and you're looking to organize something I would be the person to call for that. My email address is helen.hellmuth@drny.org and my direct number is 518-860-8158.

Host:  Awesome, thank you so much for being our guest today, Helen, we really appreciate it.

Guest:  Yes, thank you, thank you for having me. It was great.

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 NFRRS. Our guest was Helen Hellmuth, Senior Advocate with DRNY.

This program features the song A Little Ditty on the Dance Floor by Jay Lang available under a 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 of days after the on air broadcast, you can find a podcast on the NFRRS webpage nfradioreading.org on the Programming tab, under Bonus Programs, and also on wnyil.org on their Public Relations/Podcasts. Have a good week and be safe.