The Ann Arbor Center for Independent Living
2008 Annual Feature & Directory of Community Resources, Health and Information
Chairperson’s Corner by Kim Swartz
With the publication of this 19th edition of Access Magazine, the Ann Arbor Center for Independent Living has begun to write a new and exciting chapter in its long and rich history.
This past year, after many years of operating in what I will charitably describe as less than adequate leased space, the CIL made a down payment on a home of our own, a Gathering Place for the disability community. In this new space, the CIL is well-positioned for the future and to continue its efforts to serve the needs of persons with disabilities by creating opportunities to improve housing, employment, and community accessibility, provide access to assistive technology, and ensure individual rights through advocacy.
I believe that making this bold move, while not without risk, was absolutely the right thing to do at this time. In addition to building equity, we will have the opportunity to control and ensure proper maintenance of our space as well as make possible necessary renovations and future expansions. This will give us future capacity to provide a comfortable, spacious and functional environment for staff, volunteers and consumers.
All this comes at a price! Like most new property owners, we made a down payment, obtained a mortgage, and, in coming years, will need to raise funds to meet these expenses and to cover needed renovations and future expansions. You have an opportunity to become, through your financial support, an active supporter of the Gathering Place.
Your support of our upcoming Capital Campaign will make you a true a friend of the Ann Arbor Center for Independent Living and assure the completion of the building purchase and renovation.
William Arthur Ward, a great American scholar, pastor and teacher said, “A true friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities.” We invite you to become a friend of the Ann Arbor CIL and join with us in seeing the possibilities!
President’s Desk by Jim Magyar
I arrived at the Ann Arbor Center for Independent Living on May 16th in 1982. We had four staff members, a dozen or so volunteer peer advocates, eight members of the board of directors, a majority of whom had a personal experience living every day with a disability, and an annual operating budget of a little less than $100,000 per year.
In 1976 we were the first Center for Independent Living in Michigan, and the fourth of now more than 600 across the United States. We were part of the emerging Independent Living and Civil Rights Movement created by and for people with disabilities. The early ’80s were exciting times and we had a growing reputation for amplifying the voice of people with disabilities.
Our small but mighty band of passionate and vocal activists provided peer support, individual and systems advocacy, and a little transportation by way of a well-used lift-equipped Dodge Maxi Van. We also recruited, trained and referred personal care assistants, and served several hundred people with disabilities a year.
We wanted the voices of people of all ages and with all kinds of disability characteristics to be heard by people who were making policy decisions and providing community-based services. Transportation, housing, personal assistance, education and health were our focus areas. Along with many other people and disability-oriented organizations, we worked hard to help pass the Americans with Disabilities Act in 1990.
I thought I would be here for two or three years, just long enough to help this fledgling organization find its sea legs, and then I would be on to broader vistas. But I became hooked, hooked on the people who were breathing their lives into this struggle for freedom and equality. I became hooked on the humanity of it all, on the importance of a struggle to be heard, valued, and included. And I became hooked on the importance of people with all kinds of disability characteristics being able to be a vibrant and active part of life – at home, at school, at work and in the community.
Now, nearly 27 years later I find myself still pushing forward, mentoring others as I was once mentored, and encouraging a new generation of vocal staff members, peer advocates, volunteers, and board members who are as equally passionate and vocal as their forbearers in “The Movement” for recognition and equality. Everyday they provide support, offer hope, and help transform lives. Everyday Ann Arbor CIL staff members and volunteers work diligently to carry out the promise of the Americans with Disability Act.
The Ann Arbor CIL has become a true “Gathering Place” for the disability community. It is a place where peer support and advocacy flourish, where people with disabilities of all ages rally for change, convene to do business, and relax with food, entertainment, and recreation. We share our personal experience with disability and proudly share our disability culture. In doing so, we create a stronger, more inclusive and vibrant community.
I hope you enjoy this 19th edition of Access Magazine.
The Ann Arbor CIL: Providing Support, Offering Hope and Transforming Lives
Since 1976, the Ann Arbor Center for Independent Living has supported thousands of children, youth and adults with disabilities as they strive to be successful at home, at school, at work and in the community.
Where peer support, advocacy, and a sense of community flourish. Here people come to remove barriers that impede their freedom and independence, to spend time with each other, and to work together to make our community a better place to live.
We understand first-hand what it means to have a disability. More than fifty percent of our volunteers, board members and staff are people with disabilities.
A national leader: The Ann Arbor CIL was the fourth Center for Independent Living in the nation and the first in Michigan. There are now more than 600 CILs across the United States and throughout the world. The Ann Arbor CIL is also a founding member of Disability Network/Michigan, the collective voice of Michigan’s fifteen Centers for Independent Living.
We have a broad reach. Each year the Ann Arbor CIL impacts the lives of more than 3,500 people with disabilities through direct services and hundreds more through our disability education and awareness programs.
“The Ann Arbor CIL can make a difference in anyone’s life, whether through help in finding housing, changing a mindset, or making a friend. There aren’t a lot of places in the community where people with disabilities see their peers working and being productive.”
--Anna Dusbiber, Ann Arbor CIL Coordinator of Youth Services and individual with cerebral palsy.
The Ann Arbor CIL really listens. “What people with disabilities say and what they mean are taken seriously.”
--Peg Ball, Ann Arbor CIL volunteer, advocate and individual with spinal muscular atrophy.
It’s a New Day for the Ann Arbor CIL at the Focal Point of our New Building: The Gathering Place
It’s a new day for the Ann Arbor CIL. In 2007, with significant help from many – current and former board members, staff members, friends, family, Ambassador and Mrs. Ronald Weiser, and McKinley – we made a down payment and moved into our new home at 3941 Research Park Drive in Ann Arbor, more than doubling the size of our facility. The move was a big step, and one that created a new foundation for an exciting future!
The focal point of our new building is “The Gathering Place.” The huge café-like kitchen and recreation area is where everyone comes to hang out. It has become a real place of community for those we serve. The building also has several large conference rooms, our Assistive Technology Lab, a number of computer work stations, a large warehouse, grounds for sports and recreation activities, and ample staff and volunteer work areas. With the new building, we have created the ideal environment needed to achieve our mission.
It’s in the Gathering Place where we come together to share our personal experience with disability, convene to do business, and proudly share our common disability history and culture. Here, lasting friendships are forged and true peer support emerges.
The Gathering Place is used by many people and groups. Just a few include:
Ann Arbor Deaf Club, Ann Arbor Chapter of The Lupus Alliance of America, Ann Arbor Chapter of the National Association for the Physically Disabled, Girl Talk (a support group for young women with disabilities), Michigan Cochlear Implant Group, Michigan Chapter of ADAPT (promoting community-based living), Multiple Sclerosis Support Group, Spinal Cord Injury Resource Group, Stroke Survivor & Caregiver Support Group, and the Washtenaw Chapter of the Brain Injury Association of Michigan.
“I’m not a vocal person, but I’ve become part of a community here. Instead of being home with my illness, I’ve made friends. The CIL is a community that understands and accepts me for who I am. No one here asks me why I use a cane.”
--Kathy Schoch, Ann Arbor CIL Consumer and individual with rheumatoid arthritis.
“Youth with disabilities now have a place to come, hang out, and socialize with peers. The benefits of bringing teens, who often feel isolated, together are tremendous. Youth who once were shy now flourish. The Gathering Place fosters a true sense of community among our youth members. This is a home and a place of meaning.”
--Anna Dusbiber, Coordinator of Youth Services and individual with cerebral palsy.
We’ve also formed several strategic partnerships. Joining us in our new home and Gathering Place are the Washtenaw Intermediate School District with a community-based classroom, the local office of the Area Agency on Aging 1b, and the Communication Access Center for the Deaf and Hard of Hearing.
Our Team Helps Individuals Remove Barriers and Seek Out the Resources Needed for Independent Living
When you have a disability, there are all kinds of challenges that create barriers to achieving freedom and independence. At the Ann Arbor CIL, our Independent Living (IL)Team members strive to promote opportunity, full inclusion, independent living, and economic and social self-sufficiency for the individuals they work with and help ensure that people with disabilities have the same access to resources as people without disabilities.
IL Team members Mike Bell, Alysa Mohr, Sue Probert, and George Ridenour understand that solving complex problems takes a great amount of emotional, physical, and financial energy. They have expertise in the availability of local accessible and affordable housing, transportation, community resources, Social Security benefits for people with disabilities, veterans challenges, nursing home transition options, and much more.
The IL Team members are especially skilled at helping people to set goals, eliminate counter-productive behaviors, prioritize and sequence issues to work on, and devise a long-term approach to making a real difference on challenging issues. The staff keep working with people, providing ongoing support and encouragement throughout the process to help them take regular steps to accomplish their goals. “Much of what we do in IL is personal support. We’re great listeners and tireless coaches,” Probert said.
“Sue’s positive attitude is infectious, and she is a friend,” said consumer Elaina Siehl. “Being around her can make my day.”
“Alysa has helped me in many ways,” consumer Carolyn Livingstone reported. “She helped me move into Cranbrook Towers, and she helps me with errands. It’s better than the nursing home. It means a lot to be able to have her in my life.”
Our IL Team Can Help You With:
Independent Living Consultations
Having a disability can affect people in many ways. The IL Team helps people manage disability challenges and learn new ways of doing things. The IL Team also helps people with budgeting, problem-solving and decision-making, goal-setting, managing home environments, and getting organized.
Connecting with Resources and Navigating Bureaucracies
Understanding the world of resources in the community can sometimes be overwhelming and confusing. IL Team members have thorough knowledge of community resources and can help individuals with disabilities seek out the resources they need. The IL Team helps people communicate with employers, landlords, medical providers, and others. They help people fill out forms and make important phone calls.
Often people with disabilities need help standing up for what they need. All of our Ann Arbor CIL staff members help individuals learn about resources, advocate for themselves, and be heard.
“[CIL Advocacy Director]Carolyn Grawi has really helped get support services for my son,” said Robin Simpson, mother of Tim Simpson, who is an individual with cerebral palsy. “She’s helped him get special education, transportation, and other things. I didn’t know there was so much help out there. Carolyn opened my eyes. So much has changed for my son, and she deserves a lot of credit.”
Housing and Transportation
Finding affordable and accessible housing and transportation can be challenging and worrisome for many people with disabilities. Our IL Team members help people find accessible housing and transportation and can also help resolve problems such as disputes with landlords and difficulty paying rent.
IL Team members are knowledgeable about benefit programs available to some people with disabilities, such as Social Security, Medicaid, Medicare, subsidized housing, and food stamps. They help people understand their options, make informed choices, and take steps to get the benefits they need.
IL Team member George Ridenour worked closely with Alice Irizarry and encouraged her to apply for Social Security Disability benefits. Irizarry was concerned that because her disability is more hidden, she would not qualify. Ridenour advised her on the type of paperwork she needed from her doctor for the application, and he wrote a letter for her to take with her to the Social Security office.
“In less than a month, I received a letter from Social Security indicating that I qualify for benefits. Without [Ridenour] I couldn’t have done it,” Irizarry said. Irizarry is now able to help her three children care for her seven grandchildren. About Ridenour, she says, “I love that man. He gave me so much hope.”
Help Finding In-Home Care
The IL Team members can help people find in-home care for things like getting in or out of bed, dressing, taking care of personal hygiene, cooking, and shopping. The IL Team has also helps people advocate with their health insurance providers.
Connecting People with Social Opportunities
Having a disability can sometimes be very isolating. The IL Team members place great importance on the social and recreation needs of people with disabilities. They help people improve their social skills and make meaningful social connections. They can also connect people with peer support.
Washtenaw Talent Exchange
In the Washtenaw Talent Exchange (WTE) people exchange volunteer services with each other to help make life better. “Even those who think they might not have anything to offer find an opportunity to feel productive. It is empowering to give to others, and the Exchange gives that chance to everyone,” says Melissa Sartori, Coordinator of the WTE and an individual who has cerebral palsy.
The exchange has more than 300 members. Volunteers help each other with things like transportation, computer repair, house cleaning, grocery shopping, lawn care, office work, peer support, baby-sitting, car repair, and word processing.
Jim Eller, who has weakness in his right side from a stroke in 2006, volunteers his time and his van to provide transportation assistance: “Transportation is a big thing. [Public transit services for people with disabilities] are a pain in the neck. Giving someone a ride somewhere gives me a feeling of accomplishing something – I know I’ve made a difference. Plus I like doing it, too.”
The WTE is as much about being social as it is about providing services. The WTE also hosts monthly social gatherings and potlucks, which are popular events.
Loan Closet: Medical Equipment and Supplies For People Who Need It
CIL staff member Alysa Mohr coordinates a “Loan Closet,” filled with durable medical equipment and sometimes consumable medical supplies that people can borrow or have, depending on what their needs are. Items such as wheelchairs, walkers, scooters, shower chairs, tub transfer benches, and more are donated to the CIL for us to lend to others.
Although we don’t always have every item a caller is looking for, often we can make a match. “I love being able to tell [someone], ‘yes, we have what you’re looking for, when would you like to pick it up?’” Mohr said. The process is simple; there are no complicated forms, no verification, and no requirement to have a letter from a doctor.
Nursing Facility Transition
Many people with disabilities can find themselves living in nursing facilities when it’s not really necessary. “Too often, people just don’t know their options,” Mike Bell, Ann Arbor CIL Transition Specialist and individual with a spinal cord injury, said. “It’s important that people make informed choices and decide for themselves where they want to live.”
Deciding to move out of a nursing home and reintegrate into the community can be challenging and complicated. Bell helps people evaluate whether moving out of a nursing facility and into their own home is the right thing for them to do. “It’s a step-by-step process, and we help people along the way. There are many things to think about, and there are a lot of risks. But there are a lot of benefits too,” he said.
Bell and the CIL staff help people learn about accessible housing options, in-home health services, out-patient medical care, and transportation options. Bell also assists people in finding resources for home accessibility modifications and in finding household items such as furniture and kitchen equipment.
“One of the most important things we do, though, is help people find social and recreational pursuits. Once the basics are covered, getting connected with social and recreational outlets is the most important step in getting on a path to a full and meaningful life.”
Bell works collaboratively with the Area Agency on Aging 1b, and the Michigan Department of Community Health’s Nursing Facility Transition Project.
“Since 1981 the Center has been a big support to me to know that I could live independently.”
--Tom Bayer, Ann Arbor CIL Consumer and individual with multiple sclerosis.
Attorneys Volunteer Time to Answer Legal Questions
The Center has recently begun partnering with local attorneys to provide on-site legal consultations for consumers on designated Ann Arbor CIL law days. Attorneys David Blanchard and Angela Walker of Nacht and Associates in Ann Arbor began providing pro bono legal services this summer. Free legal consultations are now available every few months.
The first time the attorneys volunteered their time, more than a dozen Ann Arbor CIL consumers got help with legal questions, which covered a variety of issues including disability accommodation rights and employment discrimination. “So many people don’t have access to honest answers on these types of questions, and they are just expected to trust their HR department or their landlord,” Blanchard said. The lawyers also helped with questions about medical leave, tenant’s rights, and criminal defense matters.
Blanchard and Walker meet with consumers in person or on the phone if someone can’t come to the Center. Blanchard said he was pleasantly surprised by the turnout at the first event. “I had a hunch there would be a lot of folks out there with questions, but I had no idea we would be lining up back-to-back meetings . . . the turnout was impressive.”
Information and Assistance
Sue Probert, who has been with the CIL since 2000, leads the Information and Assistance program. Probert has a great depth of knowledge about community resources and is an empathetic listener.
“I’m very passionate about the work I do, and I believe in it very strongly,” Probert said. “People often call with a stated purpose, but usually underneath it is an unstated one. Sometimes the caller can put words on it, and sometimes they can’t.” Probert always listens carefully.
Probert responds to approximately 1,000 individuals each year. Requests come in over the phone, by email, or in person. People from all walks of life make inquiries, including people with disabilities, their families and friends, employers, community partners, social workers, and representatives of other non-profit organizations. “You need energy for this job. In this position you’re exposed to a lot of challenging issues, day after day,” Probert said.
Probert understands the issues because she’s been there. She and her mother both have a disability. “Because of all the things I’ve been through, I get it. When I comfort people and reassure them, it means something, because I’ve been there,” Probert said.
“The biggest issue people call about is housing,” Probert said. “About a third to a half of all calls are about housing, and the problem is usually credit or income problems and the fact that our community doesn’t offer enough affordable and accessible housing.” Affordable and accessible housing is especially important to people with disabilities because managing disability issues can be very difficult without a stable home environment.
Spinal Cord Injury Support Group
Tom Hoatlin, Ann Arbor CIL Director of Development and Spinal Cord Injury Support Program Manager, knows first-hand what it means to live with a spinal cord injury. Hoatlin sustained a spinal cord injury (SCI) in 1991 when he was shot in an armed robbery while managing a suburban hotel. “It’s been a long journey and it’s important to me to help others deal with the same experiences I’ve lived through,” he said
The Ann Arbor CIL has partnered with the U of M’s Department of Physical Medicine and Rehabilitation for more than 25 years. Today, Hoatlin, Mike Bell, Clark Shuler and other peers with SCIs, co-facilitate Independent Living classes and provide peer support at the U of M Hospital, at Special Tree Rehabilitation, and at St. Joseph Mercy Hospital.
“Often they have just been in a life-threatening accident and experienced a traumatic injury,” Hoatlin said. In the group sessions, he and the others work with individuals with newly-acquired spinal cord injuries. When Ann Arbor CIL staff meet with them the first time they are only just beginning to realize the challenges that lie ahead of them. “In most cases the onset of their injury has been so catastrophic that they often don’t know where to begin,” Hoatlin added.
“Helping people learn how to come to terms with a new disability is difficult but the most important thing we do,” Hoatlin said.
SCI Independent Living and peer support group discussions include topics such as home accessibility and modifications, health and nutrition, bowel and bladder management, sexuality and relationships, family support, getting out in the community, transportation and driving, and sports and recreation options. “There is promise when we, as people many years post-SCI, show up on the rehab unit,” Hoatlin said. “We demonstrate that we are happy, perhaps in relationships, have had children after injury, have traveled, have careers and have succeeded. Most importantly, we are leading meaningful lives.”