WNYIL ACCESS news Winter 2018

Fight for Rights

Douglas J. Usiak, Executive Director

I remember years ago, when we were actively fighting for our rights. That is, to ensure that people with disabilities could work, play, and go to school, by eliminating the many barriers that were keeping them from participating on an equal footing with their non-disabled neighbors. It may seem hard to believe now, but, back then, we had to prove to the public the real value of people with disabilities to society. We demonstrated that living independently in the community was far less expensive to the taxpayers than placement in nursing homes and institutions. We worked with schools to prove that their providing appropriate accommodations could enable a kid with a disability to make the Honor Roll. And we provided evidence that customers with disabilities could have a positive economic impact on their bottom line, if the community businesses would just make their facilities accessible.

Now, abruptly, we are faced with the reduction, the limitation, or perhaps even the elimination of some of those rights we fought so hard to gain. The Rehabilitation Act, Section 504 (non-discrimination in federal programs); the Individuals with Disabilities Education Act (IDEA, accommodations in schools); the Air Carriers Act (airport access); the Fair Housing Act (non-discrimination in sales or rentals); the Americans with Disabilities Act (ADA, lots of provisions!); and the list goes on. These laws are consistently being ignored, challenged, and taken to court, in a perverse attempt to curtail our Country’s efforts to include every citizen in all aspects of society.

 

So, why am I bringing this up to you, here?

 

Because, with encouragement from the highest levels of government, we citizens with disabilities, people who are different, individuals who don’t fit into some other people’s world view, are being pointed at, called out, and outright being discriminated against! Those of us who collectively bear the mantle called disability are, once again, being put into the spotlight for our differences, not our contributions. If you read and watch the news regularly, you will see that there is an increase of violence against many people who are not “the norm”. Many who should be cracking down on the perpetrators just make excuses and shrug; this type of enforcement is no longer their priority — if it ever was.

 

As did our fathers before us, and their fathers, and their fathers…(well, you get the idea), we need to stand up, (or wheel up), and say STOP”! We need to make our voices heard and heard loudly! We need to re-educate those who believe that, because of our differences, we do not have the right to be Americans. We need to write, email, call, and meet with our leaders, and let them know what we think. Our predecessors didn’t spend so much of their time and energy to push for IDEA, the ADA, and the dozens of other laws and regulations that helped eliminate the barriers to participation of citizens with disabilities, just to see them erode now.

 

Don’t allow our own proverbial wall to block us from our hard-won rights. Get into the fray and — once again — make sure that our decision-makers, (wherever they are), hear your thoughts! Make sure our leaders know that we people who are different can make a difference! And are Americans, as entitled to that identity as any other human who walks, (so to speak), upon this ground.

 

It’s been said that the smartest person in the world is Steven Hawking, the theoretical physicist and cosmologist. However, he cannot talk without assistive technology, can’t move around without his electrical wheelchair, and is unable to eat without a person to assist him, yet he is contributing every day to the knowledge base of mankind.

 

Think about this: how many others are trapped within their bodies? How many others are prevented from equal participation because of their lack of access to the world around them? How many others are unable to contribute because they are different, and are prejudged and institutionalized without trial?

 

Too many, I say! If you believe, as I do, that we, as Americans, need to have our thoughts and voices heard by those in the seats of power, get out there and do so. Make it known that you have a right to be equal, you have a right to education, you have a right to a role in society. Empower yourself to get into the fight of your life; or should I say, for your life!

 

Caregiver Circle – Only a Call Away

The Caregiver Circle is a new phone network that links individuals together to discuss questions, concerns and to seek feedback from other caregivers in similar situations. The Caregiver Circle is ideal for working caregivers, individuals who may not be able to leave their home due to care giving responsibilities and/or transportation limitations. This network is open to all caregivers caring for a loved one with confusion or forgetfulness. The Caregiver Circle will be facilitated by an individual trained through WNY Alzheimer’s Caregiver Partnership.

 

 

Our 1st Caregiver Circle took place on Wednesday, December 20th from 12:10 p.m.-12:55 p.m. We discussed the holidays and the information from the Alzheimer’s Association.
Individuals shared their experiences (good and bad) about caring for their loved one with memory impairment during the holidays or just listened in. Hopefully, the experiences
people shared will help others!

 

The Caregiver Circle met again on Wednesday, January 10th from 12:10 p.m.-12:55 p.m. If you have any questions, please contact Jill Yasses at 343-1611 or jill.yasses@co.genesee.ny.us

 

Directions how to call into the Caregiver Circle:

1. Dial 585-815-7991

2. Message will play saying “Please enter your conference bridge number now”. Please enter: 101

 

Once your bridge number is successfully entered, you will be prompted for your access code. Enter Access Code: 2581

Mental Health PEER Connection and two other peer-run mental health organizations to begin a Crisis Diversion Program

MHPC logo

Until now, individuals experiencing a mental health crisis, or “pre-crisis”, often found themselves with no option but to go to a hospital emergency room – in which staff may be well experienced in treating physical ailments, but less in offering the peer perspective of someone who “has been there”.

 

An alternative to the E.R. that has been successful elsewhere in the nation, “The Wellness Room” has been established by Erie County’s only three peer mental health agencies: Mental Health PEER Connection (MHPC), Restoration Society, Inc. (RSI), and Housing Options Made Easy, Inc. Individuals who are at least 18 years old and have a primary mental health condition or substance abuse, and are experiencing a mental health pre-crisis or crisis, will be able to talk to a Medical Health Professional AND talk to Peer Specialists who have also gone through crisis. As it began operations on January 12th, those in need can just walk in to The Wellness Room from 3:00 p.m. to 11:00 p.m., seven days per week, at 327 Elm Street at Genesee Street in Buffalo, NY 14203.

 

The Wellness Room’s mission is to provide a safe, supportive, non-judgmental environment that empowers those who are struggling with the principles of wellness and recovery, which can then inform constructive self-care decisions. In The Wellness Room, where they can come and go as they choose, guests will experience a setting filled with hope, strength, resources and peacefulness, to enable them to make a new start and begin planning the directions they wish to take.

 

There are NO cookie-cutter solutions. Specific services, that are designed to meet individuals’ needs, include: Diversion Activities and Therapies, such as Art, Music, or Journaling. Providing community resources, namely Peer Services; Education and Tools for Continued Wellness; Advocacy and Community Outreach. Funding has been provided by the New York State Office of Mental Health.

 

The Wellness Room can be called directly at (716) 884-5216, or more information is available from Leslie Saunders of MHPC at (716) 836-0822, extension 163.

 

Mental Health PEER Connection is a member of the Western New York Independent Living, Inc. family of agencies that offer an expanding array of services to aid individuals with disabilities to take control of their own lives.

 

Restoration Society, Inc. (RSI) is a peer-operated agency that offers recovery-based person-centered services serving adults, 18 years and above, with the recovery vision that all individuals can lead active lives filled with hope and satisfaction and make valuable contributions to our community.

 

Housing Options Made Easy, Inc. is a not-for-profit supported housing and community support agency developed and operated by, and for, recipients of mental health services, to provide: choice, empowerment, self-sufficiency, community integration, hope, respect, trauma-informed cultural awareness and acceptance, diversity and inclusion.

RSI logo  logo

Douglas J. Usiak of Western New York Independent Living, Inc. to be inducted into The New York State Disability Rights Hall of Fame

NYSILC logo

 

The New York State Independent Living Council (NYSILC) has announced the eight inaugural inductees into the State Disability Rights Hall of Fame (HOF), and one of the distinguished honorees is Douglas J. Usiak, who has been Executive Director of the Western New York Independent Living, Inc. Family of Agencies since 1983. All eight will be honored in a ceremony on the evening of Thursday, April 26th, 2018 at the Troy Hilton Garden Inn.

 

“Our disability community is blessed with considerable talent,” said Brad Williams, Executive Director of NYSILC. “The diverse efforts and accomplishments of the 2018 inductees will establish a benchmark for future years.”

 

While Douglas J. Usiak has dozens of significant accomplishments over his lifetime, those given by the HOF Selection Committee as particularly important to his receiving the honor are that he:

  • Developed peer-run programs over three decades at Western New York Independent Living, with locations ranging from Buffalo, Batavia, Niagara Falls, and OAHIIO (Native American Services), and services specializing in mental health peer connection, youth transition, consumer-directed services, aging and waiver services.
  • Co-created and directed a syndicated public affairs radio program, [which will soon reach its 1,500th installment], and was the driving force behind the “Points of View” cable access issue discussion show.
  • Was the Principal investigator with the National Institute on Disability Rehabilitation Research (NIDRR)’s Rehabilitation Research and Training Center (RRTC) on Independent Living Management (ILM).
  • Wrote 21 articles for journals and research between 1996-2015 on wide variety of topics including assistive technology, quality of life, independent living, and evaluation.

The other living honorees are: Clifton Perez (Rensselaer County) and Marilyn E. Saviola (Kings County). Those who will receive the award posthumously are: Anna Fay (Westchester County); Patricio (Pat) Figueroa, Jr. (Albany County); Constance Laymon (Schenectady County); Terence J. Moakley (Queens County); and Michael Peluso (Albany County).

 

Information about the event, promotion, sponsorship, and tickets to the Hall of Fame event are available at a Hall of Fame (HOF) web page: https://www.nysilc.org/hof

 

The NYS Disability Rights Hall of Fame is a program of the New York State Independent Living Council, Inc. (NYSILC). NYSILC is an independent, nonprofit state council, looking to promote independent living for people with disabilities across New York State. The council’s primary responsibility is to work with state partners to develop, monitor, and evaluate New York’s three-year Statewide Plan for Independent Living (SPIL).

‘Teach Your Children Well’

Cynthia Printup-Harms

Every two years, for the past six years, OAHIIO has had the privilege of having Todd Vaarwerk, WNYIL’s Director of Advocacy and Public Policy, coordinate a disability simulation at the Tuscarora Indian School. This event has caused me to realize how important it is for us to teach children, constructively, about people, of all ages, with disabilities.

Children are naturally curious and may have never seen an individual with a disability before. Seeing someone with a prosthetic or missing limb, a white cane or a service dog, an individual in a wheelchair will naturally elicit many questions.

It is important that we teach our children that people with disabilities are able to lead very successful, independent lives.

We are not to take pity on people with disabilities. Taking pity can foster the idea that people with disabilities cannot be their own advocates or complete tasks on their own. When discussing people with disabilities, do not discuss them with a tone of pity. Children can pick up on how you feel about an individual or a situation from the tone and language you use. Taking away any negative will create a calm open feeling towards the person.

We need to model positive relationships. Make it a point to interact with disabled individuals in your life in a positive, productive manner. Demonstrate that people with disabilities have social lives, jobs, families, and interactions, just like everybody else.

Talk about what makes people with disabilities the same as everyone else rather than what makes them different. Look for similarities. They might like the same music or the same video games or the same sports. This is where learning people’s stories is helpful.

 

Discuss appropriate ways of speaking with individuals about the disabilities they have. A child might blurt out something like, “what’s wrong with him/her?” in public. Remove the idea that having a disability is “wrong” in any way and that the individual with a disability has a body part that is “broken.” Instead, impress the importance of appropriate conversation 
such as greeting people with “hello” and “how are you?” If someone wants to learn more about an individual’s disability, they should do so in a non-offensive way.

 

Encourage empathy and peer relationships with children whom have a disability. If your child knows a student at school with a disability, encourage him or her to become friends with that child. Children with disabilities can often be left out of social events and peer groups. One way to build empathy in a child is to encourage him or her to be inclusive of others.

 

Not all disabilities are physical or even visible to others. Some conditions, like autism, are behavioral. Discuss these disabilities with your child as well when talking about physical disabilities. Teach them to broaden their understanding of disabilities, that disabilities extend far beyond what can be seen or heard.

 

Treat people with disabilities as individuals, not one homogeneous group. We need to teach our children that everyone is different and that’s okay. Everyone is different, and we should teach our children that no matter how a person differs from us, we still are to love and respect them. This principle can help with everyone’s self- esteem.

 

Everyone wants friends, love, and happiness. Attitudes can be contagious, especially the good ones. 

Filling a Gap in WNY

Skye Amari, LMSW, NYCPS-P, MHPC HCBS Coordinator

Since June 2017, Mental Health Peer Connection has been serving people with mental health disabilities through a program called Home and Community Based Services (HCBS). HCBS is a new and groundbreaking service for peer organizations, including MHPC, and the people we serve. For the first time, mental health peer services are seen as an evidence-based practice, and are thus able to be provided and paid for through Medicaid. Our HCBS Peers can now bring affordable support to people’s homes and communities, and meet people as often, and as long as they wish. Like most people who walk through MHPC’s doors, people who work with MHPC through HCBS want to get support from someone they relate with, and transition from their home to their community, through help gaining employment, better housing and benefits, learning skills to become more independent, and more. However, HCBS allows us to provide more in-depth peer support to people who have had trouble accessing and successfully using other mental health services. This is also the first time MHPC is providing peer services outside of Erie County; in addition to Erie County, MHPC is now able to provide services in Chautauqua, Cattaraugus, Genesee, Orleans, Wyoming, and Niagara Counties — to people in some of WNY’s most underserved areas. As a consumer of mental health services, the program I coordinate personally matters to me.

For the first 23 years of my life, I grew up in a rural area of Central New York, not unlike many rural areas of WNY. Living over an hour from a city, 30 minutes from any grocery store or gas station, and being used to a foot of lake effect per day was challenging. However, over time, I developed mental health issues, and it became an even greater challenge. By the time I was 20, I left my home about twice a month, and had been forced to take a leave of absence from college. I reached out for help many times - but there was only one place within 60 miles that accepted Medicaid. I did not find it useful - not only because it was far away, and the quality was poor, but because as a transgender person of color with disabilities, I could not find a person who could relate to and help me understand and get through my experiences. When I moved to Buffalo, I found people who I could relate to; it changed my life, and I was able to begin my recovery.

I know from hearing the stories of the people we serve through HCBS, many of them are in similar situations that I was. However, our peers at MHPC fill this gap; we are meeting the people who need it the most — wherever they are — with the ability to provide what they may be lacking: quality, choice, advocacy, affordability, accessibility, diversity, and empowerment.

I have been coordinating MHPC’s programs for one year now, including HCBS. I never dreamed that I would have the opportunity in life to be a peer and a social worker, or to help people work to obtain the same opportunities I was empowered to create for myself. HCBS is — and will be — successful at MHPC because it consists of true peers like myself, who share our experiences, struggles, and successes, to help people empower and create change and opportunity for themselves.

American Sign Language Classes

Beginner I — every Monday from 4:00 p.m. — 5:00 p.m. at Independent Living of Niagara County, 746 Portage Road, Niagara Falls, NY 14301. Starts March 5th for 8 weeks through April 23rd.

Lockport location - Christ Community Church, 140 Genesee St., Lockport, NY 14094. Every Thursday from 3:00 p.m. — 4:00 p.m. Starts March 8th through April 26th.

Cost: $45 includes class fee and book. For more information contact Jeanette at 716-402-5508 or email jgrimaldi@wnyil.org

Lesson Learned

Cathie Campbell

 

 

She was damaged goods, running from her demons
Grabbed the bottle and sipped the sweet juice
Never realizing, she couldn’t escape those demons
They were buried deep within

Not even aware; she had been consumed

The disease had the control and power, she had lost her sight
 

Lesson after lesson

Never reflecting, always projecting
She stands and screams, falls to the floor

Shatters to dust, she is no more

 

Emerging from the dust, a demented and damaged version
She sipped the juice, fell in love with the disease

Good at the game she spun her web and lured him in

Never letting him in and always getting him before he even had a clue
Love her he did, but he got none in return

Her defiance kicked in and she began to self-destruct
Unable to leave the house she’d become a recluse
Judge, jury and executioner, she ran away

 

Lesson after lesson

Never reflecting, always projecting
She stands and screams, falls to the floor

Shatters to dust, she is no more

 

Emerging from the dust, a self-loathing ‘n guilt ridden version
She drank the juice, hopelessly lost in the disease

She surrendered in defeat, tried to make amends

All of a sudden she is faulty, and there is no mercy in the sentence

You condemn her, kicked her when she was down, tried to make her feel less than
Cause you had drank her juice, owned her disease and then it consumed you
Finally she was set free

 

Lesson after lesson

Never reflecting, always projecting
She stands and screams, falls to the floor

Shatters to dust, she is no more

 

Emerging from the dust, a broken and ready to quit version
One swig of the juice, she embraced the disease

Still not realizing, she’d been everywhere she’d  gone

Her defiance kicked in and she began self-destructing again

She set out to prove them all wrong; she was capable of love

She settled and then got even less, unable to man up and admit the mistake

Down the aisle she flowed enraged by the disease, she knew she was out of control

The disease spread, it infected her kids, they were now consumed

 

Lesson after lesson

Now reflecting, instead of projecting
She stands and screams, kneels to the floor

She prays to be healed, closed minded no more

 

Emerging from the fog, a determined and wiser version
The emotional gates were released; drowning, unable to breathe

The wreckage of her past crept up, shadowed her days and nights

A reminder of the part she played, she was unable to accept and forgive herself
The harder she held on the tougher it got, she was taught to surrender

She released her hold and regained her sight, she had been blessed
She took all those lessons learned and put them into play,

She listened to her instincts and got in tune with the world around her
She became aware!

 

Lesson after lesson

Now aware, ready to face the fear

She stands and looks in the mirror, faces the demon and falls gracefully to the floor
She’s been blessed and the disease is no more

Emerging into clarity, an aware and willing version
Armored with angels - she faces her last demon

It all began here, from deep within; in order to receive we must first give
She searches deep within and finds the one she could love all long

She is now the source, the light is shining bright

She will no longer run away, rather stand, face and embrace!

She is free, and she is ME!

Consumer Needs Survey

Consumer Needs Survey of individuals who have received services at WNYIL. The Board of Directors would like to hear from you and what your needs are in regards to programs and services. Available online at https://www.surveymonkey.com/r/2LFRCX9 or call our Intake Dept. to do the survey over the phone at 716-836-0822 ext 126.

This survey will close on March 31, 2018.

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Anyone who makes at least a $5 donation to Western New York Independent Living will receive a $5 gift card thanks to our friends at Delta Sonic good towards oil changes, car washes, and/or detail services!

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.

Embrace the Difference

Embrace the Difference. We are all connected, no matter what difference we may have. We are a participating charity! Learn more at: www.EmbraceThe Difference.org

People Inc.

Blue Cross Blue Shield

Pro Carpet

Integrity Health Group

Miranda Real Estate

EFPR Group

Northtown

Queen City Imaging

ebc

Caretime

Clauss & Company

M&T Bank

Frank's Mobil

HealthWork