WNYIL ACCESS news Winter 2019

WNYIL ACCESS news Winter 2019

Consumers: It’s Time to See What Kind of Power You Have

Douglas J. Usiak, Chief Executive Officer

Over one-half century ago, when my teachers were attempting to get me to understand our American system of governance, I was too busy trying to get Patty in the next row to smile. So, as a result of that small diversion of my attention in Civics class, I missed some very valuable information on what kind of power that I, as a citizen, really do have.

Now, as an old man, I am facing shocking developments in Administration policy that ultimately may try to restrict my rights as an American with a disability and reduce my ability to live independently and free. But you know…I have some power here, after all — and if we all play this right, you and I can make a difference and/or prevent change that could impact on our quality of life.


So where to begin? I think that I’ll start with…an IDEA! This IDEA that I have could be anything — well, that helps people, of course. But I need to make it known and gain support for it; so, I’m going to call my friends, family, and maybe neighbors, too...pitch it to organizations whose mission makes it likely to be embraced…and look for people, places, businesses, and other entities that have a common denominator, in that they care about the same things I do.

Once I pull together a small, (or large!), working group, I am going to put this IDEA on paper, explaining what it is, why it is, and the potential impact of it. That way, my partners in this effort and I will all be, literally, “on the same page”, speaking about the same thing, as we disseminate the IDEA to gain the support that we need to make it happen.  

SO FAR, SO GOOD! BUT HOW TO PROCEED FROM HERE?

Well, depending on the IDEA, I will want to contact the appropriate elected leader that represents me and my interest. That is, to advance it, I will seek out a legislator. Whom I approach depends on whether the issue is local, Statewide, or National:

LOCAL:
    •  A village, town or City Trustee, Council member or alderman
    •  A County legislator

STATE
    •  Assembly person
    •  State Senator

NATIONAL
    •  A member of the U.S. House of Representative (Congress person)
    •  Federal Senator

Why involve them? To persuade them to incorporate our IDEA into a bill or resolution: a document that can represent what we need to have done, and that my representative can introduce to the other legislators to seek their support. Now comes the politicking! Once we have our IDEA in this bill/resolution form, it usually takes a lot of talking, many meetings, and negotiations to have this bill/resolution move through committees and on to the legislative body’s floor for a vote. But no truly good IDEA fails to have its day.  

Although lengthy and complicated, this process is not a bad thing. In the course of the meetings and talks, many people, media, and community groups become aware of the IDEA, and we may gain greater support as the LEGISLATIVE body considers this. This is vital, as, if they endorse it and pass the bill, the legislature takes our IDEA and forwards it to the EXECUTIVE BRANCH, where it can be signed into law. The Executive Branch also has the power to execute and enforce the law with our IDEA. 

Each level of government has its own Executive:

LOCAL
    •  A Village – the Mayor
    •  A Township – the Supervisor
    •  A City – the Mayor
    •  A County -the County Supervisor or County Executive

STATE – the Governor

FEDERAL – the President

Now, as you probably know, most of the above-mentioned positions are elected by us voters. A few of them are appointed or elected by the Legislature (mostly some County leaders), but even these people are ultimately empowered by our vote. If not for someone(s) receiving the most votes cast, (in most cases), they would not have the job. In essence, the Executive is the branch of government that your vote has hired to executive our IDEA as it is introduced to our community, State, or Country.

However, the reality is that no great IDEA is without its opposition. So, if or when our IDEA becomes “the law of the land”, but the law itself was written badly, “we the people” have the right to challenge the IDEA/law. If we believe that the law is not constitutional, and/or it is not being enforced correctly, we can have this IDEA/law interpreted by the JUDICIAL branch of government, (the Court systems). The Judicial Branch encompasses everything from the local small claims court all the way up to the Federal Supreme Court in Washington D.C. The nature of the challenge to the IDEA, and the level of the IDEA as it became law, will dictate the degree of local, State, or Federal Court system involvement.  

And you know what? We don’t have to take the first “NO” as the answer. We can work our way up through the courts, challenging decisions on the interpretation of our IDEA. So, we can “keep on kicking until the system stops ticking”. (Sorry, I couldn’t resist.)

So, why did I bring this very brief Civics lesson to you, (assuming you are still reading and interested)? Because, as I look around and consider what I have fought for, over the last 45 years of my life, I see that many people believe that the dollar outweighs the value of a human. That we, as people with disabilities, don’t have any value to our society other than the Medicaid or public dollar, which they believe that we all live on. So, if they want to chip away at those dollars, why not?

My efforts over the last more-than-four decades have been to inform our society about the real value of the human. About the fact that we all might not fit the ideal image popularized by the professional models in magazines and on TV, but that the contributions of each and everyone of us, when the disability-based barriers are removed, is invaluable! And for those who do need care and some assistance, that the benefits we get from community life certainly outweigh the costs of isolation in institutional care.

But, even with that said, the systems that benefit those of us who need more than physical barrier removal and communication assistance still struggle to let us remain in our communities. Why? Because, for some in leadership or in rehabilitation organizations, the dollars that can be gained by caring for a person in an institution appear to outweigh the cost savings and improved quality of life for that same person with a disability who is living in their home with family and friends.

So, if you are as angry as I am, consider the concise Civics lecture above, and show your power: the power of your vote and voice. Exercise your political muscle, get involved, and guarantee your rights as an American, just as our forefathers did when they really made America Great!

Want to Have the Power?

Donald LeBer, Chair of the Nomination and Board Development Committee

Did you know that Western New York Independent Living is a consumer-controlled, consumer-directed, consumer-run community-based organization?

Did you know that our Board of Directors, By-Laws, must have a majority of its members who are people with disabilities? 

Did you know that this is recruitment time for the Western New York Independent Living, Inc. (WNYIL) Family of Agencies, during which we are actively seeking people with disabilities who want to help us navigate the future of services, programs, and community involvement for people with disabilities in Western New York? 

If you are interested in considering to be a member of the largest disability-run organization in Western New York, please send a letter of interest, with your resumé and/or a letter telling us about yourself, what you can offer in knowledge and/or experience, and why you would like to be on the Board to:

Donald LeBer, Chair of the Nomination and
Board Development Committee
WNY Independent Living, Inc. 
3108 Main St.
Buffalo, NY 14214

We are looking for people with disabilities (any kind), age 18 or older, from any of the upper 6 Counties of WNY (Erie, Niagara, Orleans, Genesee, Wyoming, and Cattauragus).

We are looking for people of any race, religion, sex, gender-identification, religion and any other identifying factors, as WNYIL embraces diversity in its programing, hiring, and, most importantly, on our Board. We can only grow if the whole community helps this organization.

We are looking for people who: 

  • Have received services from any one of our Family of Agencies: Independent Living Center (ILC), Mental Health PEER Connection (MHPC), Independent Living of Niagara County (ILNC), Independent Living of the Genesee Region (ILGR), OAHIIO. Or are…
  • Teachers
  • Lawyers
  • Laborers
  • Students
  • Business owners
  • Accountants
  • Social workers
  • Family members
  • And so on.

So now you know who we are and what we are. Now it’s your turn to become part of our Family. Please feel free to call Chief Executive Officer Doug Usiak at 716-836-0822, ext. 117, for more information.

The Board meets monthly at 6:00 p.m. and if you become a member will be expected to serve on at least two (2) committees ranging from Finance to Public Policy. We have something for everyone.

Please take this opportunity to express your interest and become a part of an exciting organization that promotes and provides Education to Empower people with disabilities to be Equal partners in our communities.

Send in your letters and resumés by March 29, 2019.

Intern Spotlight

Daniel Colpoys, Chief Community Engagment Officer

Mental Health Peer Connection is happy to have Jacqueline Britton interning with our agency. Jacqueline provides support to both staff and consumers by helping to facilitate Independent Living skills classes with the Enhancement program and helping consumers with their job search in our Job Club. Soon she’ll be participating in consumer home visits with MHPC staff before her internship ends.

Jaqueline studied at Finger Lakes Community College for two years, where she earned her Associate’s Degree in Early Childhood Education. Following that, she enrolled in undergraduate classes at the University at Buffalo, where she is studying Health and Human Services with a concentration in Community Mental Health. 

“I have known many people in my own life that have struggled with mental illness and/or addictions and have always wanted to be part of the solution but was unsure how to do so. By attending college, studying Human Services, and interning here at MHPC, I have begun to learn skills necessary to achieve this goal. Working directly with consumers and gaining understanding on their perspective is the best way to be informed enough to help.”

The Renewal Center is an amazing resource!

The Renewal CenterLisa María Cruz, MHPC Outreach Specialist

[Editor’s note: The Renewal Center is a peer-operated hospital diversion program for adults with a mental health or substance abuse condition, staffed by Mental Health PEER Connection (MHPC) and Housing Options Made Easy, Inc. Individuals in need of non-judgmental assistance with wellness or recovery can walk in to 327 Elm Street, south of Genesee Street in Buffalo, from 3:00 p.m. to 11:00 p.m., seven days per week, to connect to services, supports and resources.] 

While I am the Mental Health Peer Connection Outreach Coordinator, about five months ago, I was really struggling with my mental health, so much that I didn’t show up for work. Even though having a very tough time, I knew that I needed help — but I also knew that I didn’t want to end up in the hospital. I was out of touch with reality, living with delusions and paranoia, but, somehow, I knew that I had to get some assistance.

Not feeling safe to drive, I took an Uber to The Renewal Center, where I talked to a peer who was very compassionate, sharing that she had her own struggles, as well. In the course of our conversations, I began to feel that it was going to be okay. She was also able to link me up to Refreshing Waters Respite, run by Housing Options in Gowanda, NY, a short-stay home for individuals who can use some extra peer support. However, when asked if I wanted to talk to the nurse, I declined, fearing the nurse would send me off to the hospital. 

My husband brought me when I returned to The Renewal Center; I felt stronger this time and wasn’t afraid to talk to the nurse. She referred me to an outside human service agency; and, fortunately, I was able to connect with Leslie Saunders of MHPC, who picked me up and took me to my appointment. 

Admittedly, when I went to that agency, I was a complete mess; because I had experienced trauma as a child, I was regressing and acting like a little girl. Even though I was clearly in trouble, I thought I knew best and sent Leslie on his way, thinking that I didn’t need someone to advocate for me. I tried to connect with it on my own and things didn’t work out. Upon reflection, I know now that Leslie was doing his best to support me, and I’m certain that peer support would have definitely made a difference.

I talked to MHPC Director Maura Kelley about it, and she told me that, “They’re not the only game in town; you have choices.” Ultimately, I linked with a different behavioral health organization, where I’m very happy with my nurse practitioner, who manages my medications, and with my therapist.

I have returned to The Renewal Center several times, as I needed some support from people who understood what I was going through — or sometimes it was just to hang out. I know — for a fact — that by going there, I was able to avoid a hospitalization; and for that, I am extremely grateful!

History Lessons

Lynnette Torgalski, Independent Living Center Director

Feeling like a history lesson. These are politically trying times and would be easy to throw in the towel and say how are we still fighting this fight. Maybe we should add to the school curriculum, or maybe our history books are HISTORY and need a serious update.

Today is February 6, 2019 and I sit and reflect to 1968 the year I entered the world. History in school reminds us of Martin Luther King, Jr and Robert Kennedy’s assassination, student protest and North Korea, but they do not teach us to this day about the disability movement at Berkley College. This protest serving a very different purpose than those across college campuses yet was going on at the same time. Ed Roberts along with 11 other severely disabled students were living in the Student Health Service Infirmary, a part of Cowell Hospital. While living in the infirmary the students formed a group known as the Rolling Quads. The 12 students started their protest with the restrictions placed on them by the rehabilitation counselors. One of the counselors tried to send two of the students to a nursing home, stating they would not be able to find jobs after college. Ed Roberts and others protested, wanted the counselor to be reassigned, and the students reinstated to the college. During the protests, a psychiatrist from the Department of Rehabilitation threatened to institutionalize all the Rolling Quads. Students were reinstated, the counselor reassigned, after the Rolling Quads went to the local paper.

History in school also does not mention the National Association for the Deaf of 1880, The League of the Physically Handicapped in 1930, The National Federation of the Blind and American Federation of the Physically Handicapped in 1940’s and the Paralyzed Veterans of America established with the disabled soldiers returning from WWII.

The independent living movement is tied into the black civil rights movement along with other movements of the late 1960’s and 1970’s. Jean Wirth, a teacher from College of San Mateo who developed a program of monitoring “peer counseling” and support for minority college to decrease drop out rates and asked Ed Roberts and the Rolling Quads to design a similar program for the disabled students. The program they developed was called the Physically Disabled Students Program (PDSP). Included in this program were provisions for personal assistance services, wheel chair repairs, emergency attendant care and help in accessing state, federal and social services rehabilitation programs.

In May of 1971 PDSP began meeting with community residence establishing the first center for independent living with a $50,000 grant from the Federal Rehabilitation Services Administration.

In the 1970’s the CIL founded the Disability Law Resource Center, which became the independent Disability Rights Education and Defense Fund (DREDF), a non-for-profit national law center dedicated to expanding the civil rights of all people with disabilities and their families.

I would not have knowledge of Ed Roberts, Justin Dart, Jr., John Hessler, Judy Heumann, Evan Kemp, Jr. and Pat Wright to name a few if I did not work at an Independent Living Center. They are not all part of the IL movement, but follow similar philosophies and affect the disability rights movement SUPERHEROS.

There are days that individuals, the community and the systems continue to break us down, but that is more reason to get up. Who doesn’t like a little fight now and then! WE were provided the ADA and an arena to fight in…we have it so much better now than in the past…but we have work ahead of us to improve for the future generation.

Farewell from Lois Jircitano, OAHIIO Independent Living Specialist: “Making a Difference”

Lois Jircitano

Dr. Lois M. Jircitano

[Editor’s note: Before her recent retirement from OAHIIO, Dr. Lois Jircitano headed the Native American Independent Living Demonstration Project (NAILDP), a position to which she brought many credentials: a Doctor of Philosophy (Ph.D.) in Educational Administration, Leadership and Policy from the State University of New York (SUNY) at Buffalo (2001); a Doctor of Law and Jurisprudence from the SUNY School of Law (1982); teaching in public education (five years); writing education legislation and regulations as Assistant Legal Counsel in NYS Education Department (NYSED, four years); wrote Tribal legislation and business codes as in-house attorney for the Seneca Nation of Indians (SNI); served in college administration monitoring affirmative action, civil rights, student appeals and employment grievances (one year); served as Associate Professor in Graduate Education and Doctoral Programs at Western Kentucky University (14 years); and at D’Youville College teaching: law and public education; higher education law; special education law and administration; communications in education; cultural issues in education; qualitative research; and supervised nine successful dissertation candidates to earn a doctorate in educational administration (Ed.D.); and served as a consultant to government contractors for Intelligence Technology (IT), human resources placement agencies, and training programs. Did we luck out, or WHAT?]

According to Haudenosaunee [we know it as the Iroquois Confederacy] Traditions, all persons living the culture are responsible for the welfare of each other. In our common history, we shared work, food, shelter space, and human knowledge to enable social and physical survival for generations. In that understanding of life, when I joined OAHIIO to begin serving the Traditional communities in western New York, I did so with the intention of improving services overall. 

I have had a rich history of service to Haudenosaunee communities that precedes OAHIIO employment. The esoteric legal education I was so fortunate to acquire has been shared and dispensed to anyone seeking assistance with family problems or court proceedings when they lacked adequate representation. As a first-time college student, I was useful to others, helping to file financial aid forms, tutoring or editing student work. As a first-time teacher, I taught Native students out-of-school to continue their education to graduation and nurtured their emotional growth on the path to becoming an adult. We have all heard the adage, “To whom much is given, much is expected.” This behavioral rubric is consonant with the teachings of Traditional concepts: that we are all responsible for each other in life. With that understanding, I accepted the responsibilities of an OAHIIO employee to build the capacity of fellow community members to know what services are available and improve their access to these services to create a healthier family and community life. 

One important aspect of OAHIIO employment was my participation on the Statewide Tribal Consult Committee. In this venue, I was able to articulate what service opportunities Native people were still lacking and offer State representatives a vision for changing the status quo through the inauguration of Native service agencies, staffed with community members; certified and licensed under the Offices of Mental Health and Alcohol and Substance Abuse Services. They would be gainfully employed in Health Care programs for Native communities, the funding for which would be channeled through existing New York State agency contracts. This dual role to serve as both an OAHIIO Independent Living Specialist and an advocate for the Traditional communities was necessitated by the dearth of previous service opportunities, which these two essential agencies had failed to provide.  

Nonetheless, in reflection of the services provided to OAHIIO consumers with disabilities, I was particularly gratified with the access to an educational and/or vocational opportunity many individuals received from the New York State Office of Adult Continuing and Career Education Services- Vocational Rehabilitation (ACCES-VR). One individual successfully earned a Welding Certificate at the age of 57; and another will enter higher education to study a life-long dream of becoming a graphic artist. An unemployed youth gained the self-confidence to acquire a driver’s license, enter and complete work training to become viably employed in a setting compatible with his disability. Young women embroiled in Family Court proceedings received legal assistance; children received educational advocacy in school district hearings; and many individuals who had never before applied for food stamps or energy assistance did so to acquire financial assistance.   

These are NOT extraordinary accomplishments, it is what OAHIIO was designed to do and needs to continue doing while developing the capacity for expanded service options. At this juncture, it is incumbent upon the Western New York Independent Living Services, Inc. to foster OAHIIO’s growth in recognition of the years of stoic presence in WNYIL’s efforts to better serve Natives with disabilities.

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Embrace the Difference

Thank you to our Night for Independence Sponsors

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A Night for Independence Gala

A Night for Independence Gala

Disability Pride

Disability Pride

Saturday, July 27, 2019

Canalside

Parade 10:30 a.m.

Parade route will be released shortly

Festival 11:00 a.m. - 2:00 p.m.

Live performances, food, vendors, giveaways and activities

Dozens of Western New York organizations invite you to join us to celebrate the Americans with Disabilities Act and Disability Pride with food, fun, and games. We look forward to having you celebrate with us! For more information contact Marykate Waringa at 716-836-0822 ext. 146 or mwaringa@wnyil.org