Support Groups & You

by Bruce Meissner Ph.D

Today I’d like to talk a bit about support groups, how they work and how they can help.

Whether you’re dealing with a chronic illness or disability, emotional problem, life transition, or just want to learn more about a particular issue, your community may have a group where you can come together with people in similar situations and develop strategies and other interventions that can help you deal with these personal and sometimes complex issues.

Support groups give encouragement, a level of intimacy and camaraderie, particularly during difficult times. As face-to-face interactions within the community are becoming more and more scarce, support or self help group comprised of people in the same situation may help fill that void. Over the past 25 years, there has been a huge increase in the number of support groups in the United States. Today there are several hundred’s of distinctly different types of support and self help groups in our Country.

Although support can vary greatly, some common themes shared by all is that they are places where people can share personal stories, express emotions, and be heard in an atmosphere of acceptance, understanding and encouragement. Consumers share information, resources, and engage in peer counseling. By helping others, group members commonly feel strengthened and empowered themselves though the process. Besides furnishing support, some groups also focus on community education and advocacy.
Here at PACE we try to address many important and sometimes personal issues in our low vision support groups. Our groups discuss general issues surrounding vision loss and blindness, along with specific issues such as magnification, home safety, transportation, activities of daily living, advocacy and much much more.

All are welcome to attend our groups and we encourage you to tell family and friends about us.
Group Schedule
1. Piatt Co. (Monticello), the “See You” low vision group meets the 1st Tuesday of the month at Maple Point Assisted Living Center in Monticello from 1:30-3p
1000 N Union Drive, Monticello IL
2. Champaign Co. (Urbana), the “East Central Illinois” (ECI) low vision group meets the 1st Wednesday of the month here in Urbana at PACE Inc. from 1:30-3p
1317 E. Florida Avenue, Urbana IL
3. Champaign Co. (Rantoul), the “Prairie Village” low vision group meets the 3rd Friday of the month at the Prairie Village Retirement Community from 1-2p
200 International Drive, Rantoul IL
4.Vermilion Co. (Danville), “VIPIO” (Visually Impaired Persons Inspiring Others) low vision group meets the 4th Monday of the month at the Danville Public Library from 1:30 -3p
319 N. Vermilion Street, Danville, IL
5. Edgar Co. (Paris), the “Edgar” low vision support group meets quarterly (every 3 months) on the 4th Wednesday of the month at the Paris Public Library from 1:30-2:30
207 S. Main Street Paris, IL
6..Champaign Co. (Savoy), the “Windsor of Savoy” low vision support group meets the 4th Friday of the month at the Windsor of Savoy Independent and Assisted Living Community from 10:30-11:30
401 Burwash Avenue, Savoy IL
7. Douglas Co. (Tuscola) “White Caners” low vision support group, is currently being reestablished and we hope to have news of new meeting day/time for this group in the near future. Announcements will be made.

Remember everyone is welcome and if you have any questions about these groups feel free to contact Bruce Meissner Ph.D., CRC, Coordinator of Visual Impairment Services at PACE Inc. Center for Independent Living. Thank you and I hope to see you soon.

Visual Impairment Services

PACE welcomes Bruce Meissner as the newest member of our team, and asks you to welcome him as the new Coordinator of Visual Impairment Services. Bruce returns to PACE after getting his P.h.D in Rehabilitation Science from Southern Illinois University Carbondale.

During his PACE career, Bruce has worked with Judy West as an intern the the Visual Imapairment Services program, and has also worked with Hadley in the Personal Assistant Program

If you or anyone you know is experiencing vision loss due to a new or worsening condition, accident, or for any other reason, Bruce would be happy to meet with you to discuss how PACE might be able to help with assistive technology, skills training, peer counseling, or a support group.

In any case, please contact Bruce at 217-344-5433(voice), 217-689-0289(video), or by email at bruce@pacecil.org.

Sheltered Employment, and the Pay Scale

Recently, discussion around the office was sparked by this blog post from “The Hill”

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By Dr. Fredric K. Schroeder – 07/30/13 10:00 AM ET

For most of human history, society has believed that people with disabilities are incapable of productive work. This was the belief in 1938, when Congress exempted employers of workers with disabilities from paying their workers the federal minimum wage. Since then, attitudes about workers with disabilities have slowly changed, and our nation’s laws and policies have changed with them. Recognizing that Americans with disabilities could work and make a living, Congress passed the Rehabilitation Act in 1973. This historic law recognized that people with disabilities should not be discriminated against in employment and strengthened a system, funded by the federal government and administered through state agencies, that prepares Americans with disabilities for competitive employment in the mainstream workforce.

Despite this important policy shift, however, the provision of federal law allowing certain employers to pay workers with disabilities less than the federal minimum wage remains in place. Although many Americans with disabilities receive the training and opportunity they need to find jobs that are both personally and financially rewarding, some 400,000 workers with disabilities remain trapped in segregated, subminimum wage employment in what is called the “sheltered workshop” system. Many of these workers have intellectual disabilities and are placed in sheltered workshops by their legal guardians out of misplaced compassion and the outdated belief that disabled people can’t really work. This is no longer justifiable for any reason, if it ever was; it is discriminatory and immoral. The National Federation of the Blind, on whose board I serve, and fifty other organizations of people with disabilities support legislation that would repeal the obscure provision of the 1938 Fair Labor Standards Act that keeps this unconscionable practice alive.

Until now, people with disabilities and their advocates have managed to keep the rehabilitation system legally walled off from the separate and unequal subminimum wage employment system. When I served as commissioner of the Rehabilitation Services Administration during the Clinton administration, we issued regulations ending the practice of rehabilitation agencies placing individuals with disabilities in segregated, subminimum wage jobs and counting them as successful employment outcomes. Imagine my dismay when the latest reauthorization of the Workforce Investment Act, which contains the reauthorization of the Rehabilitation Act, was introduced and referred to the Senate Committee on Health, Education, Labor and Pensions (the HELP Committee) with language—in a new Section 511—that would allow rehabilitation agencies to place workers in subminimum wage employment.

The effort to pass this legislation is being led by HELP Committee Chairman Senator Tom Harkin (D-Iowa) and ranking member Sen Lamar Alexander (R-Tenn.), who claim that they have introduced this new provision to curtail the placement of young people in subminimum wage jobs. Harkin has good reason to want to stop this practice—one of the most shocking and shameful instances of subminimum wage employment was exposed in his state a couple of years ago. A turkey processing operation was paying men with intellectual disabilities forty-one cents an hour and housing them in an unheated, roach-infested “bunkhouse.” I do not doubt Harkin’s sincerity, but I do question his method of trying to stop it from happening again.

Section 511 purports to permit placement in subminimum wage work only as part of training for later competitive employment, with a review of the worker’s status required every six months. But this approach would merely write subminimum wages into the Rehabilitation Act—where there has never before been any language authorizing subminimum wages. Sheltered workshops often claim that they are training their workers, but we know from sad experience and extensive study that 95 percent of the workers who enter sheltered workshops never leave them. Section 511 does nothing but require a rehabilitation counselor to certify that a worker is in “training” every six months. This proposal will simply make the rehabilitation system complicit in the exploitation of disabled workers from the time they are old enough to leave school—or possibly earlier—until they die.

The way to end discrimination against and exploitation of workers with disabilities is to stop allowing the payment of subminimum wages. A bill being considered in the House of Representatives, the Fair Wages for Workers with Disabilities Act, would do this responsibly.Sabotaging the Rehabilitation Act by placing language in it that allows rehabilitation agencies to place workers in sheltered workshops, even with purported restrictions, won’t work, and in fact will make the situation worse. When the HELP Committee considers this legislation on Wednesday, Section 511 should be stripped from the bill.

Schroeder served as commissioner of the Rehabilitation Services Administration under President Bill Clinton from 1994 until 2001. He is currently first vice president of the National Federation of the Blind and a research professor for the San Diego State University Research Foundation.

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Below is my response to the post

While it may be fundamentally unfair for these provisions to exist for the disabled, a couple of real world issues exist: Most of the jobs which a large number of these sheltered workshops perform could be easily automated or outsourced, and having this wage structure is the only thing keeping the companies who enter into these agreements with agencies like DSC from using one of these options.

Truly, these provisions shouldn’t exist, but the truth is that: if they didn’t, the jobs probably wouldn’t exist here at all.

The follow-up question might be: would the people in these workshops be better off following some other avenue (i.e. college programs)? But then again, some of the college programs for people who might otherwise be in one of these workshops have been described as “nothing but warehousing.”

While philosophically, it’s easy to come out absolutely opposed to these things (which I do), there are real world questions which must be answered about what truly happens to the people who have these jobs, and I don’t think the answer is “They’d still have the job, but with better pay.”

So while the carve out seems repugnant, maybe it’s necessary???

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So what’s your opinion, where should the act go, and what are the alternatives?

THE ADA AND THOSE WHO FOUGHT FOR IT

While the Americans with Disabilities Ace is paving the way for great changes in the lives of us with various disabilities, and deserves celebration, does anyone consider the people who fought for it? To me, the strength, courage, persistence and forward-thinking of the men and women who sacrificed to  make the lives of future generations of people like themselves deserves as much attention as the benefits of the law itself.

For many of us, the idea of being militant, standing up for what we believe or know to be right despite its challenges, — legal and otherwise, — may seem impossible, and even frightening. Many of us have been taught, by society as well as by family perhaps, to not make waves, to be noticed as little as possible. In short, to be invisible.

The movers and shakers who brought about the creation and passing of the ADA weren’t just professionals; they came from all walks of life, and risked whatever was important to them to make things happen.

So, along with recognizing the value of the law itself, let’s celebrate the lives, efforts and power of the people who made it happen, and hope that, like them, we may live with courage, caring and a vision of what the future can hold for all of us.

Good Summer Read

My friend loaned me a book she thought I might enjoy: She was right! It was SO good, I must tell you a little bit about it.  The title is The Story of Beautiful Girl by Rachel Simon.  Rachel is the  sister of a person with disabilities, and wrote a book about her experiences with her sister.   You may have heard of, because it was made into a Hallmark film – Riding the Bus with My Sister, (2005).  If you’ve seen that beautiful film, hang on if you read the book, because it’s even better!

The Story of Beautiful Girl is fiction, but tells the story of deinstitutionalization of people with disabilities.   The story begins in 1968, on a stormy November night, when a mute young woman,  Lynnie, and a deaf man, Number 42,  show up at a random farmhouse occupied by a widowed retired elementary school  teacher, Martha.  Lynnie is holding a newborn child, which the couple hides in the attic.  Shortly authorities arrive and Lynnie is captured.  Number 42 escapes.    Just as police escort her out the door, she whispers to Martha “hide her”.  That’s where the history of the characters begins to be uncovered; the drama and suspense of the hiding and the struggles of the characters unfold.  The beautiful language informs the reader of the horrors of institutional living, and the movement created for people to exercise their civil rights of self-determination.

If you’re looking for a good summer read – pick up this book, but clear your calendar because if you are like me, you won’t be able to put it down.

Ahh Spring; Preparing for Disasters with a Disability

AH  SPRING!  It’s finally here.  Just when I’m feeling all up-beat about the awakening of the earth, the budding of the trees, the joy of longer days of sunshine coaxing the flowers to bloom, the newscasts remind me that it’s also a time to get ready for possible damaging storms.  To me, this is the only negative thought of the season of Spring.

In my life experience, I’ve learned that most negative thoughts can be replaced by a positive attitude.  So I just gather my emergency preparedness items and realize how blessed I’ve been to live through a handful of tornadoes and am no worse for the wear – because I’ve been prepared.  I’ve got my flashlight, radio, extra batteries, some candles and matches – in a watertight container.  I keep a blanket handy, along with my bicycle helmet and a hatchet.  My cell phone is always near, and I have a stash of granola bars, nuts and raisins, peanut butter and crackers, and jugs of water.  If things get bad, I even have a first aid kit.  At the risk of sounding boastful, I even keep my pet taxi handy to keep my pet safe. So I figure I pretty well know how to play the disaster preparedness game.   Until I received the Emergency Preparedness Tips for Those with Functional Needs from the Illinois Terrorism Task Force.

I was amazed at how poorly I’ve been prepared for weather, or any other type of disaster!  This handy publication has chapters with specific disaster tip with titles such as:  Cognitive Impairments, Deaf or Hard of Hearing, Life Support Systems, Mental Health and Substance Abuse Problems, Mobility Impairments,  Senior, Service Animals and Pets, and Visual Impairments.  There are several pages listing what should be in a Disaster Kit, and a form for you to make your own Health Card.  It also includes several Agency references and the FEMA Guide:  Preparing for Disaster for People with Disabilites and Other Special Needs.  Go online to check it out: http://www.illinois.gov/ready/SiteCollectionDocuments/PreparednessTips_FunctionalNeeds.pdf.

 

 

 

DPN: Deaf President Now

Q: What major event took place in the deaf community in 1988?

A: Deaf President Now (DPN)!  In March 1988 deaf students at Gallaudet University rose in protest and it became known as “the week that the world heard Gallaudet.”

I had already left the previous year, so I was unable to participate.

I woke up one morning in March 1988, a cold and snowy day and went down to the corner to purchase my daily newspaper as was my habit. The headline on the newspaper was stunning: “Students Close Gallaudet University.” I couldn’t believe it!

As the week unfolded, details started trickling out bit by bit. An old friend who was outside the Mayflower hotel when it all began told me how angry students booed the announcement that a hearing president had been hired. He told me how the students had marched all the way from that hotel to Capitol Hill or the University (I can not remember which it was).

One night I drove to the campus just to see what was going on and to get a taste of the atmosphere. It was unreal, with the students totally in charge. I was allowed on campus because I was deaf, but they turned back others who were not deaf.

The editorial cartoons, the marches, Marlee Matlin on Nightline…that week was so memorable. It marked a true turning point for the deaf/hard of hearing community. Employers began to take more notice of potential deaf employees, deaf people who had never been promoted received promotions, people around the world started to change their attitudes, and deafness was everywhere in the media for a while.

What was most impressive about that week was the way the deaf/hoh community pulled together and the public relations machine was so effective. It showed that when the deaf/hard of hearing community really wants something, it knows how to get it.

“Deaf President Now” is ancient history to the current generation of deaf children. But it paved the way so that a deaf child today CAN dream of becoming president of Gallaudet University.

As everyone was saying in 1988…PAH!

Transportation: Arenas of Advocacy

Very few topics touch all of our lives like that of transportation—After all, this topic shapes how we get work and school, how our friends and family come to us,  and how we all get to the most important parts of our lives.

The importance of this issue is why PACE is committed to being a strong voice in the area of transportation, and why it is necessary for all of us to remain up-to-date on the most recent developments in this arena.

One such development is the Long Range Transportation Plan (LRTP); The LRTP is one of the documents which will play a large part in determining how the Champaign-Urbana metropolitan area develops all the way to 2040.

The first opportunity for you to get involved, learn about the LRTP, and give your opinion on things we might not be thinking about will be on Wednesday, February 27 at 5PM on the fourth floor of Illinois Terminal. At this event, you will get to view the informational video, witness the unveiling of the interactive website, and meet with the people developing the plan. We encourage all of you to come and be a part of this important piece of CU’s continued growth.

The other major transportation arena PACE is involved in is the Human Services Transportation Plan (HSTP). The HSTP is a gathering of social service agencies, transportation providers, and state agencies in Champaign, Clark, Coles, Cumberland, DeWitt, Douglas, Edgar, Macon, Moultrie, Piatt, Shelby, & Vermilion counties.

The HSTP is concerned with building a unified transportation network across this vast expanse in which those with disabilities and those individuals with limited income can travel seamlessly. The HSTP is focused on ensuring that riders have access to the recreational, employment, and health resources which exist in East Central Illinois.

In both of these arenas, PACE is advocating on behalf of our consumers, and working to ensure that the Champaign-Urbana metropolitan area and indeed all of East Central Illinois is an inclusive community which works for all of its residents. We encourage you to watch for updates on the HSTP, and definitely attend the LRTP Kickoff meeting on Wednesday, February 27th.

Community Reintegration

The Community Reintegration Program is designed to reintegrate individuals between the ages of 18 – 59 who are interested in moving back into the community from a nursing facility setting, and are only barred by their financial situation from doing so.

The Community Reintegration Program is intended to be a one-time process to help with the initial set up of basic living arrangements, as well as linkages to services needed to live independently.

What the Community Reintegration Program can do for nursing home residents:

–         Locate and secure affordable housing

–         Assist with the first month’s rent and deposit

–         Provide household items

–         Provide assistive equipment and devices

–         Arrange home remodeling for safe living environment

–         Provide training in independent living skills

–         Make referrals of personal assistant services

–         Provide personal assistant management training

–         Provide case management

–         Provide advocacy and peer support

For more information about the Community Reintegration Program contact Chris Bott or Sherry Longcor at 217-344-5433

Pursuit of Happiness

Monday, January 21st was Martin Luther King, Jr. Holiday.  I had the day off work, so I took the opportunity to go with another Part-time PACE Staff member to visit a former consumer who now lives out of our service area, who we’ll call Kevin, and who happens to be a friend of my co-worker.

Kevin’s life story fascinates me.  He was born with cerebral palsy prior to passage of the ADA.  His public education was basically an exercise in warehousing by the small local school district.  At age seven, his parents divorced; and he was taken in by his parental grandparents.  This caused deep resentment by the grandparents toward Kevin’s mother.  They loved and cared for him as responsibly as they knew how.  As often happens in loving families, the caregivers feared allowing their youngster to grow and become independent from them.  The grandparents wanted Kevin to remain their little boy.  But Kevin was becoming a man.  He was very conflicted, like all people are as they grow older; he wanted to be a man, but wasn’t sure he had the skills to make his own decisions, and he didn’t want to hurt his grandparent’s feelings.  When he came to PACE he was taught communication and advocacy skills, and began to let his grandparents know, that he loved them, but at the same time wanted more independence.  Too, his grandparents began to face the fact that they were becoming less and less able to physically provide all the care Kevin needed.  So they moved into a retirement facility and Kevin moved into a nearby group home.

I had visited Kevin 13 months earlier.  What was clear at this visit is that Kevin is doing exceptionally well; is extremely happy; and is becoming his own man in his own right.  The group home is lovely and well staffed.  Kevin, to his grandparent’s chagrin, has his own bank account, debit card, and is managing his funds well.  He has a new,  reciprocally loving relationship with his mother; who is taking more responsibility for her son’s wellbeing.  He is making life decisions for himself, such as a living will, arranging his own social events, and things he just wasn’t allowed to do before he became his own advocate.

Both myself, and the other staff member who was with me on this pleasant outing, agree – thinking of Kevin is an uplifting and rewarding affirmation of the power of one finding their own voice and using it to make their life better.

Earlier that day, I listened to President Obama’s second Inaugural Address and could apply his words to Kevin’s American experience of living with freedom and liberties that once were denied him.  He is living his life in pursuit of happiness.  And seeing that helps me live mine in the same way.

 

 

PACE has had a makeover

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The next time you come in to your Center for Independent Living we hope you will be happy with the new look.   We sometimes forget to look around when we get so busy with important issues and needs but we stood back and said it is time to update our look.  After wallpaper removal, sanding and painting we chose carpet and cabinets for the mini kitchen.   The colors are BRIGHT so be ready.   Never fear the conference room is mellow.    We still need finishing touches and I have a surprise to bring in an outdoors look to our, alas, windowless office.  Once it is ready we will announce an open house.  We are however open for business and you can get a look anytime.