WNYIL ACCESS news Spring 2018

New York State Disability Rights Hall of Fame

Douglas J. Usiak, Chief Executive Officer, Western New York Independent Living, Inc.

This past April 26th, the New York State Independent Living Council (NYSILC), the body that develops, monitors and evaluates the New York State Plan for Independent Living (SPIL), recognized eight individuals for their work for, and on behalf of, people with disabilities. These individuals are the inaugural class — and will, (in the words of Brad Williams, Executive Director of NYSILC), set the bar for future members — of the New York State Disability Rights Hall of Fame.

So, what makes this important to those of us who live day-to-day with a disability? Why should we care, personally, about this new practice of publicly acknowledging people who did good work on behalf of a large, broad group of New Yorkers?

These are a couple questions that also occurred to me, when I had first contemplated this initiative, and these are some likely solutions – to my mind, anyway:

  1. NYSILC is recognizing the contributions and work done by people with disabilities. People who “not only talk the talk, but walk the walk”, and who have: contributed to the advancement of new knowledge, services and programs; initiated greater access to our communities, literature and science; and advanced our State’s ability to embrace all humans, regardless of their physical, mental, sensory, or cognitive limitations.
  2. This becomes an opportunity for those of us with disabilities to drop our – well, let’s face it – self-imposed barriers for equal acceptance by the greater community. This gives us another reason to look at our disability as merely another characteristic of ourselves, like having blonde hair, or being tall, and skinny. It is an occasion for us to stand up with ride, even after years of having much of our communities tell us what we couldn’t do, can’t participate in, and are not able to do. It provides us a day in which we can celebrate people who didn’t take “NO” as the answer, and worked to say, “I WILL”, and after it was all done, “I DID”!
  3. This Disability Rights Hall of Fame provides us the chance to point to others with all kinds of disabilities who can serve as role models. …To assist us in identifying people from our neighborhoods from all around the State who can provide examples to our youth who, unfortunately, acquired a disability, to see that their functional limitation is not the end of one’s life, but just “a bump in the road”.
  4. And finally, it is a way for us to shout out to the rest of the State, to boast and brag about our leadership! Those leaders with disabilities who showed that the limitations we carry impose no limit as to what we can do.

I salute the Class of 2018 of the New York State Disability Rights Hall of Fame. I say “thank you” for all you have done for us, in ensuring that I can have an opportunity to challenge myself and contribute to the greater good. To those five Inductees who are no longer with us, my prayers of gratitude are said for you. And for those inductees of future Classes, who are still pushing, promoting, and changing our world to make sure that the barriers are not society-imposed, I thank you and I am extremely grateful for all that you have done – and are doing – that has enriched my life.

Have YOU watched “Points of View”?

Todd Vaarwerk

If you answered, “What’s that?”, the chances are that you haven’t – or saw it and you just never noticed the title. However, since you’re reading this newsletter, it should have grabbed your attention, as the subjects are always of importance to people with disabilities — like Special Education, Public Transportation Accessibility, threats to the Americans with Disabilities Act or other civil rights protections, and so on. Since 1998, WNYIL has been the lead agency, and taping site, for a cable access public affairs discussion show seen Saturday afternoon at 5:00 p.m. on Spectrum Cable (division of Charter Communications, Inc.; formerly Time-Warner, formerly TCI, formerly Adelphia, etc.) Channel 22. For the handful of suburbanites who have Verizon FIOS, so sorry, but maybe someday…

We have had various Centers for Independent Living around the Empire State that have co-sponsored “Points of View” from time to time, but the most stalwart has been the New
York State Independent Living Council (NYSILC). As the sponsors are paying a commercial production company, Creative Concepts Studios, to tape it, and another firm, CCMaker, to
insert Open Captions for the Hearing Impaired, we can only support four to six shows per year, that are repeated frequently. That means lots of chances to catch what you’ve missed!

WNYIL’s Chief Executive Officer, Douglas Usiak, was the discussion leader for the show’s first 19 years, but has handed off the honor to a frequent guest, WNYIL’s Chief Policy Officer
Todd Vaarwerk. There have been dozens of guest panelists over the show’s run, invited as they had knowledge of the particular show’s subject – perhaps some people you know!

Todd is always looking for suggestions about topics that YOU would like to hear discussed on “Points of View”. Please call him at (716) 836-0822, extension 101 or email him at

We are in the process of putting past episodes on-line on our own YouTube Channel! Plus you’ll find other great videos such as: 15 episodes of “Pioneers of Disability Rights and
Community Organizing”; some prior “WNYIL Year in Review” videos; press conferences, and lots more! Go to YouTube and search for WNYIL.

Check out “Points of View” sometime and see what hot topic is getting aired. Hey, if it’s got WNYIL’s stamp on it, it’s GOT to be GOOD!

New Accessible Van

Thanks to the help of our annual Gala supporters we were able to purchase this new van to transport our consumers to their medical appointments, jobs, and social activities. Special thanks to Main Mobility for making it wheelchair accessible.

    new van

Promoting the Readiness of Minors in Supplemental Security Income (NYS PROMISE)

Carly Lapp

NYS PROMISE is a research project for 2,000 families in New York State with 14-to-16-year-old teens who receive Supplemental Social Security income (SSI). The goal of the NYS PROMISE project is to explore the best ways to help kids with disabilities receiving SSI successfully transition from high school to adulthood. The NYS PROMISE project has enrolled 2090 youth with disabilities who receive SSI and live in Western New York State, the Capital region, or the New York City areas.

The New York State PROMISE is one of six PROMISE awards granted nationwide by the US. Department of Education in October 2013. The PROMISE intervention model was jointly developed by the US Department of Education (USDOE), the Social Security Administration (SSA), the U.S. Department of Health and Human Services (USDHHS), and the U.S. Department of Labor (USDOL). The state research demonstration will be coordinated by the New York State Office of Mental Health (OMH), the contract administered by the Research Foundation for Mental Hygiene, and research and capacity building activities conducted by Cornell University’s Yang-Tan Institute on Employment and Disability.

With a 100% referral success rate of cases from Niagara Falls Parent Coordinator/PROMISE Case Manager, Mia Crumpton to OAHIIO Certified Benefits Advisor, Carly Lapp, numerous
families have greatly benefited from the advice that they have received from benefits review meetings. “I look at the entire family’s benefit circumstances, to get a whole picture. What a lot of the families and the PROMISE individual, that I work with, do not know that there are many special rules that the Social Security Administration has. Especially with regard to students and working, other work incentives and special considerations.”

Carly has seen families positively impacted because of Western New York Independent Living, Inc. assistance, which includes guidance and advice. One instance was the time when
a family that Carly was working with was about to have their power turned off. “The family was in trouble. Mom had just had brain surgery and trying to care for her five children with various special needs. She was very overwhelmed and began to forget to pay her bills. Due to the relationship that I built with mom, she trusted me enough to ask for help. Ultimately, I was able to facilitate, through one of my connections at National Fuel, a payment arrangement, so her electric and heat remained on.”

Can’t We Dream?

Maura Kelley, CPRP,  Director of Mental Health PEER Connection

Some debilitating subtle practices are occurring in the mental health system in New York State, and through first-hand knowledge, right here in Western New York. We Peer Advocates thought we were so successful seeing the number of Psychiatric Beds decrease over the years, thinking we were helping our brothers and sisters into the community. The psychiatric bed count is the smallest number ever, since institutionalization into hospital wards increased in the 1960’s. But what we didn’t see is the movement from one institution to several smaller institutions in the community. Many of our brothers and sisters went to group homes of Single Room Occupancy Buildings consisting of 70 to 100 individuals living together, having their own room, bathroom and TV, while sharing their dining and recreational space. Many take medications on their own, through the very well-known pill boxes, that most of us use. Or by standing in line receiving the pills dispersed to them. This is where our brothers and sisters live. I have seen several housing situations in our community. They are diverse, and I truly believe the least restrictive services are provided for most. This housing issue is a concern, but not my main concern in writing this article.

Many of our brothers and sisters who left hospitals where enrolled, admitted, or assigned to what is called PROS programs. “Personalized Recovery Oriented Services (PROS).” PROS
is a comprehensive recovery-oriented program for individuals with severe and persistent mental illness. The goal of the program is to integrate treatment, support, and rehabilitation in a manner that facilitates the individual’s recovery.” Cited from the NYS Office of Mental Health. So, this sounds great. Recently I have been made aware that many people attending PROS “Graduate.” That’s great, too. I would assume that the graduates are on their way to recovery. To my utter disappointment and great dissatisfaction these “Graduates” are our brothers and sisters sitting on benches smoking cigarettes, calling anyone they can think of during the day because they have nothing to do. However, I have discovered many of them have dreams. I have also discovered some people discourage their dreams stating they are “unrealistic,” “preposterous” or “totally unattainable.”

MHPC, as a catalyst for change, must challenge the status quo. First off, I remember a time I was in the hospital forced to go to a group that was for people who had no “goal” or dreams. I applaud all those brothers and sisters in our community who have “Graduated” that have a dream. Having a dream should be an American Right.

I assure you, if you find your way to Mental Health Peer Connection at 3108 Main St. Buffalo, NY, off the LaSalle train, we will honor, respect, and empower you to strive to reach your dream. We will encourage you to try. We will support you, educate you, and be a Peer with you. WE will do this, because we are dreamers, too. We know what despair and isolation and being out of sorts feels like. We too, have “Graduated” into the abyss. Once, a hospital even gave me a plastic chip because I graduated. Three hospital discharges later, they did not give me a chip when I left they gave me a desire to advocate. At MHPC, Peers can be a catalyst for change with you. Call 716-836-0822 ext. 126.

Why Should Anybody Care What Happens to Criminals?

Rafiq J. Salim, Peer Support Specialist

Tomorrow’s criminal will be someone’s parent, child, friend, lover or teacher. Maybe even yours. Will that person that you today hold close, dear and fully human become, when caught and convicted of a crime, someone other than the person you know today? Will that person then deserve to be shackled, caged and brutalized in dark places – prisons – we know nothing about but ignorantly insist are “not that bad?” How is it that we come to think about the contempt and deliberate degradation to which prisoners are subject as deserving.

The belief that “criminals” deserve to be treated as animals allows us to ignore the inherent barbarism of human encagement. And of course, ‘encagement’ is not a proper term and
it lacks the self-serving balm of kind euphemisms for this level of barbarity. So, I find it perfectly appropriate for capturing the inherent savagery of doing to human beings what we
find unconscionable with dogs. Hyperbole?

Imagine, locking your sweet loving pet in a cage with a huge, mean, junk yard dog. Imagine your loving pet, in that cage, brutally raped, maimed and brutalized into fearful submission. Now imagine that your pet’s cage is but one in a row of 40 cages stacked four high on one side of a cage block. This is what we do to human beings in the name of crime and punishment, law and order. And it gets worse.

When ex-cons, felons, parolees – whatever term we use to separate them from us – return to the community, we do not acknowledge these human beings as traumatized survivors of the systematized hell we have designed. For those that receive Office of Mental Health provided therapy and/or psych meds in order to adjust to life in a cage, there is immediate housing and mental health treatment in the community. There is no treatment or services to address the mental health disabilities these human beings suffer as a result of encagement itself e.g. paranoia, anxiety, depression, post-traumatic stress disorder. Instead, we dump these human beings in the community with little support and lots of obstacles and then blame these individuals without the skills and support to survive in the ‘free world’ for not trying hard enough.

Why should anybody care what happens to criminals? Because we are them – human beings. Perhaps we should consider creating a less savage response to harmful deviant behavior other than human encagement?

Doug Usiak in Hall of Fame

We of Western New York Independent Living, Inc. are proud to announce that our Chief Executive Officer, Douglas J. Usiak, is one of the three still-living 2018 Inductees into the
New York State Disability Rights Hall of Fame (HOF). To learn the significance of this honor, please see the overview article on page 1. For more about what bases were used for
his admission, please see the full-page summary of his lifetime of advocacy on the New York State Independent Living Council (NYSILC) website at: https://www.nysilc.org/

Customer Experience Survey

Your experience at Western New York Independent Living is our measure of success. Feel free to fill out the survey online at: https://www.surveymonkey.com/r/WNYILConsumerExperience

National Disability Institute

Protecting Your Money 

Individuals might receive offerings from others that they do not know.  These offerings might be for a free trip, work from home job offers, computer assistance, threats of lawsuits, request for money to help stranded family members that an individual may not know, immigration assistance and requests for donations from organizations they are not familiar with.  There are situations that these type of requests are crimes.  It is important to be aware that sometimes people are trying to get an individual’s personal information and money.  To protect your money and identity, It is important to learn the skills of recognizing these events, preventing your loss and reporting these situations. Please refer to the listing below for information about scams, fraud, identity theft and ways to report these crimes. 

Attorney General:  http://www.naag.org/naag/search-page/search-results.php 

Charity Scams: visit the BBB Wise Giving Alliance:  http://www.give.org/news-updates/ 

Computer Identity Theft:  http://www.ftc.gov/bcp/edu/microsites/idtheft/ 

Consumer Financial Protection Bureau:  http://www.consumerfinance.gov/AskCFPB 

Federal Trade Commission (FTC):  http://www.ftc.gov  Toll-free:  (877) 382-4357 

Identity Theft:  http://www.consumer.gov/ 

Identity Theft:  https://www.identitytheft.gov/ 

Internet Crime Prevention Information and Reporting:  http://www.ic3.gov/ 

IRS Impersonation / “Last Ever Contact”:  http://www.treasury.gov/tigta/ 

Mail Fraud: Take questionable mail such as “foreign lottery winning notice”, etc. back to your local Post Office for reporting. 

Telephone calls:  https://www.consumer.ftc.gov/scam-alerts Toll free:  1-888-382-1222 

NDI cannot confirm that these websites are accessible by screen readers such as JAWS or Zoomtext. 

Amazon smile

When you shop at AmazonSmile, Amazon donates 0.5% of the purchase price to Western New York Independent Living, Inc. Bookmark the link
http://smile.amazon.com/ch/22-2316065 and support us every time you shop.

Consumer and Attendant Surveys on CDPAS

The Western New York Independent Living Family of Agencies (WNYIL) is pleased to enable many citizens with disabilities to have the ultimate say over their own home care through our Taking Control Consumer-Directed Personal Assistance Services (CDPAS). Who would know better how these services could be improved than its Consumer/Employers and Personal Attendants (PAs)?

WNYIL has created two brief, self-explanatory, on-line surveys that we request Consumer/Employers and PAs complete, so that their experiences with CDPAS will be as satisfactory as possible.  They can be submitted anonymously, but, there is space for your name, telephone and email if you have a personal concern and wish a Taking Control Representative to contact you.

If you are a Consumer Employer, please click this link, or copy the URL: https://www.surveymonkey.com/r/TCCOnsumerEmployer

If you are a Personal Assistant, please click this link, or copy the URL: https://www.surveymonkey.com/r/TCAssistant

Thank you for taking a moment to help us improve our services for everyone!

Ready or Not the Change is Coming

Medicaid Service Coordination changing to Health Home Care Management 

By Lynette Torgalski, Director of the Independent Living Center of Erie County 

Medicaid Service Coordination will be changing to Health Home Care Management as of July 1, 2018. The reason for the change is due to a more person-centered approach that not only encompasses supports for individuals with an intellectual and/or developmental disability, but also their behavioral health and wellness. The change comes full of uncertainties for us all. I am here to tell you that you are not alone. Being a parent of a child living with an intellectual and developmental disability who receives MSC services, what I can tell you as the Director of the Independent Living Center is the following.  

The Office of People with Developmental Disabilities, Care Coordination Organizations and Agencies with MSC have been hosting forums statewide to educate individuals and family members regarding changes in their services.  

The following starts as of July 1, 2018:  

  1. 1. Medicaid Service Coordinators will now be Health Home Care Managers.  

  1. 2. Services will no longer be provided through your current agency, but many Medicaid Service Coordinators will be transitioning with their current individuals.  

  1. 3. There are three Care Coordination Organization serving the Western New York Region (there are six statewide): 

  1. a. Prime Care Coordination 

  1. b. Person Center Services of Western New York  

  1. c. LIFEPlan Care Coordination of New York 

  1. 4. If you are enrolled in waiver services. Those services will be provided by the same agency they are currently with.  

  1. 5. Individual Service Plan will now be known as the LIFE Plan.  

  1. 6. Health Home Care Management will coordinate: 

  1. a. Continuation of activities with OPWDD 

  1. b. Working with the Department of Health  

  1. c. Additionally, working with Office of Mental Health  

  1. d. And supporting the overall wellness of each individual   

  1. 6. Health Home Care Managers will be receiving additional training and support in providing these new services.  

Additionally, I can tell you from participating on multiple levels that the collaboration has been a very open conversation. OPWDD, Agencies providing MSC and the Care Coordination Organizations are meeting on a weekly basis, if not multiple times in a week. The Care Coordination Organizations are asking how the MSC are currently providing services, completing intakes and about concerns from the individuals and/or family members they work with. Individuals and families have been provided information regarding OPWDD and Agency information sessions. Attending a forum is a great opportunity to learn first-hand what is coming, to ask questions and to voice your concerns. Please check with your MSC to see what additional information sessions will be available and take a first-hand opportunity to be involved.  

The goal of this change is to be person-centered and to help all individuals in achieving their desired outcomes by improving services. So, put yourself in the center of this change, have control over what the future holds, not just now but continuously.