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State Budget Update
As most of you have heard, Governor Walker signed the budget on July 12th, 2015. The budget has lots of changes to Wisconsins Long-Term Care programs. Weve added several informational links on ourLearn about the Budget page. After our Coffee Break on Wednesday, we'll start a discussion on the topic and we encourage you to join in and share your questions and thoughts. We'll be sure to send out a link to it when it when it's posted.
Join us for another Coffee Break!
Coffee Break: Wisconsin's State Budget and the Future of Long-Term Care Programs: Wednesday July 22ndfrom 9:30am to 10am
Wisconsin's state budget has been passed by the legislature and Governor Walker has signed it into law. In the process, Gov. Walker made numerous line-item vetoes.
So what changes to the long-term care system are inthe new state budget? How will theyaffect you and the people you care about? Will you still be able to self-direct your services? Is IRIS going to disappear? What will happen to Family Care and the ADRCs?
Join us for a Coffee Break with Lynn Breedlove, board president of InControl Wisconsin and outspoken advocate for self-determination, as we talk about what we know (and don't know) about the future of the long-term care system in Wisconsin. Bring your questions, comments, etc. as our Coffee Breaks are an opportunity to talk with each other about topics we care about.
Before the Coffee Break, you may want to check out thisFAQ from the Survival Coalition about the State Budget and long-term care. Those links can be found on ourBudget page.
The Coffee Break is a live discussion (written chat) on the Network, open to all members. Each Coffee Break has a different theme - participants will be asked to share their thoughts, questions, ideas and challenges on the subject.
You can join the discussion (chat) any time during the Coffee Break. Just sign in on the SD Network during the time you want to participate on the Network and then go to the Chat Room.
There's no need to register - however, it would help if you would RSVP so we have some idea if you will be joining us.
Take our One-Minute Poll
In our last one-minute poll, we asked what their favorite summer activities were. 30% of people said they enjoy going to festivals and about 17% enjoy going to sporting events. 20% of people like going swimming and about 27% enjoy having cookouts.
This month were asking how you feel about the future of Long-Term Care in Wisconsin now that the budget is passed. Take ourone-minute pollnow!
It Only Takes "Five"
Take five minutes to check out what's happening on the Self-Determination Network:
- Pauls Dream: Read this incredibly inspiring story written by Jim Wahner about a quadriplegic from Milwaukee who had powerful impact on the movement for disability rights and self-determination in Wisconsin in the 1970s.
- Give your Feedback: The Wisconsin Board for People with Developmental Disabilities is asking for your input while developing their next five year plan.
- Let Your Voice be Heard: Heres a chance to voice your opinions and concerns about the future of Managed Care in Wisconsin.
- Register Now: Registration is now open for this years Self-Determination Conference.
- Medicaid Incentives: Read about a new bill that wouldprovide financial incentives to states for helping people with disabilities live and work in the community.
- ABLE Act Rules: Learn about the rules being proposed for the ABLE Act.
- Service Animal Resource: This is a great resource about the ADAs service animal provisions.
- Great News: An article about how the ABLE Act was recently signed into law in Wisconsin.
- Post news or start a discussion: It's easy to do and a great way to share information and network with others!
Stacys Journal
This month Stacy discusses some of her challenges and experiences whentravelling with a disability. We encourage you to ask her questions and/or share your experiences as well.
New Members
Stop by to welcomeour newest members:
- Thisfatherhas been involved in supporting people with disabilities for over 30 years.
- Shes a greatadvocatefor others.
- Shes anIRIS participantwho wants to stay informed about the changes.
- Thisparentwants to advocate for self-determination.
- Shespart of IRIS.
- Sheworks for a nonprofitthat serves adults with disabilities.
- Thismothercares about issues impacting lives of people with disabilities.
- Shes veryconcerned about the future of IRIS.
- Shes aBenefits Specialist.
- Thishusbandis a caregiver for his wife.
- This person is anEmployment Services Director.
- She hassupported people with disabilitiesfor the last 19 years.
- She is involved in thelong-term care and employment field.
- Shes thedirectorof a vocational rehabilitation program.
- He is theWorkforce Development Managerat a Easter Seals.
- Shes asocial workerwho works with adults with disabilities.
- Thismotheris a caregiver to her adult son.
- This person isconcerned about the changes to IRIS.
- Thisparentis an advocate for her adult child.
- Thisguardianwants to better understand the changes that may affect their lives.
- Heworkswith individuals with disabilities.
- Thisgraduate studenthopes he can play a vital role in preserving IRIS.
- Shes anIRIS Consultant Supervisor.
- Sheworks for LSSand wants to learn more about self-determination.
- Thisteacher and parentis very concerned about the state budget.
- She has been a mental health consumeradvocatefor ten years.
- Thismotherwants to advocate for her daughter.
- She ispassionateabout long-term care for people with disabilities.
- He has beenworkingin long-term care since 1977 and is very concerned with where Wisconsin is headed.
- Shes thedirectorof an Independent Living Center.
Do you know someone who should join the Self-Determination Network? Spread the word and invite friends, families and other interested folks!
Upcoming Events
Here's a sample ofupcoming eventslisted on the Self-Determination Network:
- ADA Free Pontoon Boat Rides on Madison Lakes: June 14thto August 16th, Tenney Park, Madison WI
- Audio Conference: ADA Anniversary Update: 25 Years Later: July 21st, 1pm to 2:30pm, Online
- Coffee Break: Wisconsin's State Budget and the Future of Long-Term Care Programs:July 22nd, 9:30am to 10am,SD Network Chat Room
- Milwaukee Brewers vs Cleveland: July 22nd, 1pm, Miller Park, Milwaukee WI
- Adaptive Sports and Recreation Expo: July 25th, 9am to 2pm, Nathan Hale High School, West Allis WI
- 3rd Annual Disability Pride Festival: July 25th, 12pm to 5pm, Brittingham Park, Madison WI
- State-wide Institute on Best Practices in Inclusive Education 2015:July 27thto 29th, Westwood Conference Center, Wausau WI
- Cogworld Conference: July 28th, 8am to 12pm, Holy Wisdom Retreat Center, Middleton WI
- Celebrate Wisconsin's ABLE Act Creation: August 10th, 10am, Options for Independent Living, Green Bay WI
- Medicaid Managed Care Forum: August 31st, 9am to 4pm, State Capitol, Madison WI
- Self-Determination Conference: November 9thto 11th, Kalahari Resort, Wisconsin Dells WI
- Across the Lifespan Conference: December 3rdto 4th, Chula Vista Resort, Wisconsin Dells WI
- Wisconsin Transition Conference: February 18th to 19th, Kalahari Resort, Wisconsin Dells WI
Post your eventon the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions? ContactStacy Ellingen.
The Self-Determination Network is powered by In Control Wisconsin and supported financially by ourmembersandSponsors. We couldn't keep this Network going with you! Find out how you can help support the Network.
PREFACE
This story memorializes the teachings and inspiration of little-known Milwaukee quadriplegic, Paul W. Hunt, and his powerful impact on the movement for disability rights and self-determination in 1970s Wisconsin. His name does not pop up in Internet searches or appear in history books or publications on disability issues, yet Paul Hunts vision and advocacy triggered a rookie state legislator, three governors, and legions of advocates to blaze a trail of new laws, regulations, and awareness relating to access and independence for people with all types of disabilities.
PAULS DREAM
He led from his bed and sparked a Wisconsin disability rights revolution!
I met Paul Hunt on a cursedly hot, muggy Thursday evening in early August, 1970. I was a hard-perspiring, 30-year-old Democratic candidate for the Wisconsin Assembly earnestly door-knocking my way through his west side Milwaukee neighborhood. Paul was a 31-year-old quadriplegic who had the misfortune of diving into a Browns Lake rock pile and shattering his neck at the age of 17. The accident left him a non-ventilator C-7 high quad with paralysis in his legs, arms, and chest, no voluntary use of his hands and fingers, some minimal use of wrists, biceps and shoulders, and no bowel or bladder function. As I learned later, none of this deterred him from marrying, building a successful telephone answering service, inventing and patenting a toy airplane operated by a remote control joy-stick and living a transcendent life of vision, inspiration and good humor.
We were an unlikely pair. Paul, the brilliant, largely self-educated, catastrophically injured and confined son of a wealthy Milwaukee area family, who became an entrepreneurial businessman, history buff, and inventor like his hero Benjamin Franklin; and I the product of a Milwaukee working-class family, a cold war army veteran, former Capitol cop, mayoral aide, college lecturer, and office seeker yearning to battle urban ills and protect the environment.
Getting Acquainted
Our first meeting could easily not have happened. By the time I arrived at the corner of 84th and Center Streets that night, I was sweaty, drained, well beyond crabby, and rapidly approaching the muttering to myself stage. As a dedicated door-to-door campaigner, my plan was to knock on at least 50 doors a night, but the cumulative effect of purgatorial August heat and two months of walking Milwaukees sidewalks had gnawed away the soles of my shoes and much of my resolve to continue. Unwilling to take another step, I fussed with the voter list on my clip board, checked my supply of hand-written Sorry I missed you cards, and jealously wondered what other, smarter, members of my grad school classes were doing with their summer evenings.
After several more minutes of self-pity and procrastination, I struck a bargain with myself to make just one more stop before trading hot concrete and rancidity for a blissful blast of air conditioned heaven and the healing waters of a cool shower. Glancing down at my walking list, I saw my 45th and last visit of the night would be at the home of Paul and Margaret Hunt. I silently prayed they would not be home.
Darkness was starting to close in as I doggedly marched up the short rise from Center Street toward the Hunts modest one-story white frame house at 2758 N. 84th Street. The front of the house featured an oversized bay window with tightly drawn drapes allowing only a faint glow of light to refract through them. As I approached their door, I instinctively shifted into full candidate ingratiation mode and silently reviewed my doorway monologue: Hello Mr. or Mrs. Hunt; my name is Jim Wahner and Im running for the Assembly in our area. I know you folks always vote (flattery always gets them) so Im stopping by this evening to introduce myself, drop off a piece of my literature, and answer any questions you might have about my candidacy. I could recite those lines in my sleep having already uttered them in the presence of more than 3,000 residents of the 15th Assembly District.
Seconds later, I punched the Hunts doorbell and was startled by a loud, masculine voice booming from an intercom mounted directly above the door. Come on in, the doors open, and then a second voice many octaves higher saying ding-dong, ding-dong, come on in. Before I could react to the unusual dual greeting, the deep voice boomed again come in, the doors open and once more there came the much higher pitched ding-dong, ding-dong, come on in.
Pushing the door open, I peered into the dimly-lit front room of the tiny house. As my eyes adjusted to the light, I could make out a husky, thick-set young man lying in bed naked to the waist. My first instinct was to abandon any introductory sales pitch and bolt for the door proffering a hasty apology for invading his privacy. Then I noticed a wheelchair in the room and in a soaring moment of revelation, the presence of illness or disability began to dawn. Sensing my unease and confusion, the man in the bed said Its ok, cmon, pull up a chair.
Unsure how to proceed, I hesitantly crossed the room, blurted my standard opening lines, awkwardly, gave Paul Hunts wrist a light squeeze, and sat down. The big man blew right past my introduction and sweaty grip. I know who you are. Ive been following your campaign through some friends and my answering service customers, and Ive been waiting to meet you. Before I could muster a reply, the air was shattered by a shrill, sphincter-clenching, wolf whistle that nearly percussed me out of my chair but solved the mystery of the double welcome at the door.
Oh God, Im sorry, thats Othello our Mynah bird; he thinks he has to butt into every conversation, said Paul with a look of bemused but apologetic concern. With that, I broke out laughing, Paul flashed a smile the size of a frying pan, and all the fatigue and bleakness of my day faded. Othellos unnerving outcry had blown away any initial awkwardness or tension between us.
Despite Othellos continuing outbursts, Paul and I easily fell into a long, friendly, get-acquainted conversation covering his life, my background, his business, my campaign, his accident, our mutual love of sports and Fats Dominos music, his interest in games like cribbage, chess, bridge, sheepshead, and his fascination with World War II history. I learned that his wife Maggie, a rehab nurse, was at work that evening, and even made the acquaintance of Chris, the familys lively wire-haired Terrier. Paul and I personally connected that night, and it was after 10:30 before I said good night and drove home savoring the joy of the evening and my new friendship with a smart, high octane fellow with a captivating and magnetic personality.
For the next several days I wondered who is this amazingly likeable man who suddenly dropped into my life, and how is it he knows so much about me and my campaign? All I knew for sure was that I was touched at gut-level by his warmth and affability, and in awe of his strength, courage and positive attitude in the face of such daunting disability. Never did it occur to me that in a very short time he would have a powerful and lasting impact on my life, my thinking, my agenda as an elected official, and much more importantly -- the quality of life of thousands of people with disabilities facing a mine field of barriers and challenges.
The Election
Four weeks later Paul called to congratulate me on handily winning the September primary election. He was upbeat to the point of exuberance as he shared the news that he was designing a survey questionnaire he would personally be administering to a random sample of voters in the district. The plan, according to Paul, was to use his custom-designed high tech (for 1970) telephone system which included a speaker phone and a manual pulsar that activated an automatic dialing system. This would make it possible for him to make phone calls without having to dial, push buttons, or manipulate switchboard plugs. Not knowing him that well, I didnt take the sample survey idea very seriously. Shame on me for doubting!
The day before the November 3rd election Paul called to wish me luck and asked how I was feeling. I told him I was as jumpy as the proverbial long-tailed feline in a room full of rocking chairs. He said Dont worry, my buddies and I have just finished tabulating our polling results and we figure you will get somewhere around 70 percent of the vote. I expressed thanks for the prediction and help but reminded him I was running against an incumbent in a highly competitive two-party district and would be perfectly thrilled with 51 percent of the vote. He laughed, called me a pessimist, and told me to prepare to party hearty on Election Day.
Pauls survey results were golden, and by 9:00 oclock the next night it was clear I was going to win a seat in the Legislature with nearly 72 percent of the vote. As we celebrated with friends, family and supporters at Bricklayers Hall, further election reports and trends made it clear Patrick Lucey would be Wisconsins first four-year Governor, and 68 other victorious Democrats would soon comprise a formidable majority in the state Assembly.
After a brief stop downtown at Governor-elect Luceys victory party, I headed home to call my parents and to give Paul the good news. It was late when I reached him, but, of course, he was never far from his phone. During the first part of the call, we mutually basked in the thrill and excitement of our victory -- he crowing about his new-found prowess as a political pollster, me happy to have accomplished a long-sought goal and giddy with the knowledge I would not have to knock on any more doors for a while. As we talked, I could hear Othello in the background appropriately heralding my election with several choruses of dah-dah-dah-dah-di-dah Charge!
After a few more minutes of election night revelry and figurative back slapping, Paul abruptly shifted the tone of our conversation saying You know, now that you are going to be my representative, our relationship is going to change. Curious, I asked how it might change. He explained that his role as a campaign worker was now over and his role as an active constituent was about to begin -- and as such he had a long list of issues to take up with me.
When I started to quiz him about what issues we would be discussing, he dodged saying he didnt want to get into a business discussion on election night and requested I call him later to set a time and date for us to meet and talk. I told him my wife and I had a Door County vacation planned, but I would phone him right after our return. He said When we meet, bring along one of those long, yellow legal pads, and allow plenty of time because Ive got a lot to tell you.
The Tutoring Begins
On a cool Saturday morning in mid-November, I returned to the little white cottage on 84th Street with three yellow legal pads tucked away in my handsome, new, tan leather American Traveler briefcase. Paul was fired up and greeted me with a boisterous Hello, Mr. Assemblyman-elect. Now rested and relaxed, I quipped back, And good morning to you Mr. Gallup but he didnt laugh. Apparently, Paul wasnt the least bit familiar with George Gallup, a pioneer in the field of American political polling.
Deflated by the thud of my misfiring humor, I dropped into a chair next to Pauls bed and took stock of my new friend. Unlike the supine, half-naked gent from our first meeting, this time his bed was partially elevated and he was dressed in a white short sleeved T-shirt with a special device attached to his right arm to facilitate feeding himself, holding a pen or pecking away at an electric typewriter. Seeing him in that slightly elevated position was different from looking directly down at him in a hospital bed, and made for improved eye contact and communication.
What I saw was a bright-eyed, fair-skinned, clean-shaven, pleasant looking man with a round, full face anchored by a strong chin and a sharply delineated Superman jaw line. His head was garnished by a crop of neatly combed, slightly wavy brown hair. Despite the grip of paralysis and being bed-ridden for much of the past 14 years, his stocky six foot four inch 250 pound football linemans body still conveyed a surprisingly youthful image of strength and vitality.
He was all business that day, and began by describing what everyday life was like for him and most of his acquaintances with disabilities. He spoke eloquently and without visible notes or outline in an even, pleasant cadence occasionally punctuated by a slight increase in volume and a mild snarl when something especially annoyed him. It was clear he had given his subject many hours of thought and incubated his ideas over a long period of time while waiting for someone who would listen and might possibly even act.
His remarks were big picture and disability wide--covering the deaf, blind, mobility limited, elderly, war veterans, polio victims, auto accidents -- and focused on macro areas like architectural barriers, transportation, housing, employment, education, civil rights, recreational opportunities, rehabilitation, and horror stories from the medical assistance program. His central theme was that too many people with disabilities were effectively denied access to society and community and relegated to living out their lives as second class citizens.
He hammered away on phrases like People have disabilities; society creates the handicaps and limitations, repeating it at least a half dozen times in the first hour. At another point, he paused, looked directly at me and said Jim, people in wheelchairs are prisoners on their blocks, streets and curbs are built to confine us; builders build us out when they should be building us into their buildings, and public transportation is absolutely of no use to most of us. Barely taking a breath, he said People think theres just a handful of us so why bother, but the census figures I checked show we are a significant minority group of over 300,000 people in Wisconsinand those numbers are two years old.
In his view, the battle needing to be waged by people with disabilities and their allies was at its broad, philosophical core a struggle for freedom, independence, inclusion, empowerment, and dignity, so everyone, regardless of their limitations, would be enabled to live, work, and contribute to the maximum extent of their physical and mental abilities. What began as a steady shower of words became a passionate three-hour downpour of facts, anecdotes and deeply-held convictions. Trying to stop or slow him down would have been like asking a tornado to turn around and go home.
Despite the passion and intensity of the message, there was no malice in his voice and his monolog carried little in the way of demonization or finger pointing at individuals or organizations. Instead, he chalked up much of the problem to a patronizing rather than enabling culture, and to painful stereotyping language that labels and dehumanizes people along with a dashes of plain old ignorance, lack of awareness, and an occasional pinch of overt discrimination. His approach was amazingly kind, thoughtful, almost noble, and I had the feeling he was delivering a message for everyone with a disability rather than just himself. Whatever his intent, I found myself drawn to the man and to a vision that seemed so basic, simple, sensible and doable.
The Ask
My seminar with Professor Hunt was an eye-opener, and I was a human sponge scribbling out a dozen pages of notes. We were together for about five hours. For the first three, I mostly listened; then he spent much of the last two fielding a truckload of my nave questions. While I had more than a passing interest in civil rights issues, the disability side was new to me, and poking into challenges faced by people with various disabilities wasnt on my new legislator priority list of things to doand Im sure it showed. As a newcomer, pieces of his powerful message of reform initially seemed a bit far out, almost utopian, but the majority of it resonated with me as areas where a number of relatively small, common sense changes could go a long way to easing the pain.
Near the end of our time, Paul asked whether as a newly-minted state elected official I would consider taking on some of the challenges he cited. I was not surprised by his request; in fact, I had expected it, but found myself wary of it. While he had made an enlightening and credible case for taking action on multiple fronts, I wasnt at all sure what life would be like in the new Legislature, and even less confident about what I might actually be able to deliver as a rookie legislator. I thought, what could be worse than promising a political magic show to this good man and then showing up with neither a rabbit nor a hat to pull it out of?
Ignoring his question, I asked Where would we start? What is the most logical and important first step that would benefit the greatest number of people? Without a seconds hesitation, he said The curb cuts start by pushing for the curb cuts, people will be unfamiliar with the idea at first, but then theyll quickly see they really do make a lot of sense. Heck, if a person cant get off their block, they cant get to work. Without another word, I leaned into the unknown and promised the big man in the bed I would give curb cuts my best shot.
Two weeks later we visited again. This time, I sprawled on the floor near Pauls bed taking notes on a legal pad as we haggled over the language to be included in our curb cut bill. I also tried my hand at sketching a rough drawing showing side and top down views of how our ramps would look and then added in some real-life dimensions I had received from the University of Illinois Champagne Urbana where curb cuts were commonplace. Paul had numerous suggestions, and we literally drafted our version of the bill on his living room floor. As we worked, Othello screeched his beak off demonstrating an uncanny ability to bark like a dog while occasionally dropping an F-bomb or two.
First Priority: Curb Cuts
On the second day of January 1971, I plowed my way to Madison in a heavy snowstorm to be sworn in by Chief Justice Harold Hallows and begin life as a state legislator. After being duly oathed, officed, and oriented, I explored my way through the cavernous granite and marble halls of the Capitol in search of the offices of the bill drafting section of the Legislative Reference Bureau. Armed only with a promise to a constituent and friend and my crude sketch of how Paul and I thought a curb ramp should look, I presented myself at the cubicle of Attorney Peter Dykman.
Dykman was new to bill drafting, and his section was already flooded with hundreds of requests to draft everything from one line resolutions to complex rewrites of vast sections of the statutes. He sat poker-faced and tired looking as I excitedly outlined the bill I had in mind and waited for him to erupt into spasms of enthusiasm over the concept of curb cuts and how they would be the most brilliant innovation presented to mankind since the bread slicer. None of that happened. Instead, he quietly took my information, admitted he was drowning under a tsunami of bill requests, reminded me that the leaders of the Legislature and many senior colleagues were ahead of me in line, and it would be at least April before I would see a first draft of my bill.
True to his word, it was late April before I had a jacketed bill draft ready for circulation and introduction. The next challenge was to find a Senator, preferably a Republican in the solidly GOP Senate, willing to risk co-sponsoring a bill with an Assembly freshman from the other party. As luck would have it, a week later as I was leaving the Capitol through the South Hamilton Street exit, the Promised Land came into full view. There was Senator Raymond Heinzen, a moderate Republican dairy farmer from Wood County, struggling mightily to maneuver a lady in a wheelchair down three levels of steps to the sidewalk. I watched with cruel glee, as he safely but not skillfully landed the chair on level ground and headed for the Inn on the Park and the high curbs of South Carroll Street.
I ran after them arriving just in time to say Let me give you a hand Senator and to help ease the chair-bound lady down the curb. We then crossed the street together and avoided the curb on the other side by illegally moving out of the crosswalk and swinging into the driveway that leads to the hotels underground parking. Once back on the sidewalk, Senator Heinzen thanked me and introduced the lady in the chair as his wife Reba, explaining that she had sprained her ankle and needed the wheelchair for a few days while visiting with him in Madison.
Like a hawk pouncing on a hapless field mouse, I swooped in and breathlessly informed the Senator I had just drafted a bill designed to address the curb and wheelchair problem he and his wife had just encountered. Before he could blink or register a response one way or the other, I asked if he would be willing to meet with me to discuss the bill. He agreed, and the Wahner-Heinzen curb cut alliance was born the next day over a cup of coffee.
On May 12, 1971, our draft bill calling for curb cuts in all cases of new and replacement curbing was soberly read by Assembly Chief Clerk Thomas Fox, and introduced as Assembly Bill 848 by Representative Wahner and Senator Heinzen. Upon hearing the Chief Clerks description, one of my more irreverent colleagues sitting a few seats away cackled loudly Hey Wahner, what are you going to do, chip out all the curbs in the state? The comment was followed by a ripple of laughter in the Chamber but nothing could dampen my spirits. I was happy. I called Paul, and told him we were underway. He was ecstatic.
Pauls Death
On New Years Day morning 1972, I received a call from Pauls younger brother Dyson with the news that Paul had died the night before. The news of his passing was an unbearable punch in the gut for me and all who knew him. Friends told me he had been fighting some bug, but I had no inkling of the seriousness of his condition. Various versions of what caused his death floated around, everything from pneumonia, a weakened immune system, an unsuccessful course of anti-biotic treatment, all of the above, none of the above.
Much later, I had the opportunity to discuss his passing with Maggie Hunt who was not only his widow but an experienced nurse who had worked with many quadriplegics. She summed it all up quite simply: It was respiratory arrest he just stopped breathing. After a slight pause, she added wistfully Paul knew the odds were against him. He had been very close to death several times. He knew his life would not be long he was so vulnerable to pneumonia, bladder infections, and his lung and kidney functions were so easily compromised. Thats why he wanted to make the most of his time he wanted to make every second count for something and he did.
Maggie would know. As a student nurse at St. Josephs Hospital in 1957, Margaret Maggie Hamilton would quietly sneak up the back stairway late at night to avoid the charge nurse and spend time with Paul in his room talking, playing cards and falling in love. In early 1959, after the death of Pauls father, Maggie moved in with the Hunt family and helped with his care, and in July, 1964 they were married. During the next seven years, the tiny lady who carries less fat than a stalk of celery, and is known to friends and colleagues as Mighty Maggie managed Pauls care while holding prominent teaching and nursing leadership positions throughout the Milwaukee area.
Two days after Pauls death, I joined a large group of mourners at Paul and Maggies new dream house on Stickney Avenue in Wauwatosa. The mood at the wake was somber and the tear spigots were open wide. The sum total of all the many conversations in the room boiled down to a unanimous belief that Paul represented the kind of work God only does on his very best day. Yet even as we wept and grieved over the thievery of his death, I, like many others, quietly renewed my resolve to carry on as I had promised, and to do all in my power to keep Pauls overarching vision of inclusion and independence alive. Even Maggies sorrow-filled thoughts on the back of Pauls Mass card struck a note of hope.
THE MYSTERY OF PAUL
Oh MY God!
Paul is Dead!
I Am Alone---
I Am Weak---
I Am Sad---
Am I Dead?
Now I Am!
Tomorrow I Live
Without My Paul
Our Paul
A Different Life
For All
Because of Paul
A different life indeed, for him, and for everyone he touched. Pauls perspective on life was not that the glass is always half full, but that it is constantly at flood stage overflow. Appropriately, the other side of his mass card reads Paul W. Hunt, Inventor, April 1, 1939 December 31, 1971 and features a photo of him lying on his side in bed with Othello perched on his extended left arm. The quote from Thomas Wolfe beneath the photo sums up Pauls view of life.
If a man has a talent and cannot use it, he has failed. If he has a talent and uses only half of it, he has partly failed. If he has a talent and learns somehow to use the whole of it, he has graciously succeeded, and won a triumph few men ever know.
Curb Cuts and a Task Force Too
With the cold truth of Pauls death still lingering, there came a gust of good news. On March 2, 1972, the curb cut bill, legislatively known as Assembly Bill 848, had received final legislative approval. After 10 months of committee hearings, amendments, votes, speeches, educating, and consciousness-raising. I had my first tangible proof, or dare I say concrete proof, that the Wisconsin political climate was open to considering reasonable accommodations for people with disabilities.
On April 24th, I proudly stood next to Governor Patrick Lucey in the Capitols ornate, rococo-style conference room as he rolled his Parker pen across the signature line of Assembly Bill 848 and propelled it into the Wisconsin Statutes. Luceys signature made Wisconsin the first state in the nation to adopt the concept of curb cuts in all new and replacement construction. It was a great day, and the room was packed with family, friends, colleagues and disability advocates--people like Maggie, Senator Ray and Reba Heinzen, Ellen Daly, John Doherty, Jean Logan, and numerous others -- most of us intensely mindful of the one person who couldnt be physically present but who was so completely with us in spirit.
Immediately after the bill signing, the Governor put the cherry and chopped nuts atop our banana split by announcing the formation of a State Task Force to delve into the challenges faced by people with physical disabilities and appointing me to chair it. This was a somewhat risky political move on the Governors part because he had already commissioned a flotilla of task forces on other subjects and was reaping some editorial criticism for presuming to run the government by task forces.
A Quiet Revolution Unfolds
The signing of AB 848 and creation of the Task Force sent a euphoric chain reaction rattling through the media and every disability group in Wisconsin. Enactment of the curb cut law and the Governors supportive pronouncement stirred the Milwaukee Chapter of the National Paraplegia Foundation, Societys Assets of Racine, Wisconsin Association of the Deaf, Registry of Interpreters for the Deaf, Wisconsin Council for the Blind, the Occupational Therapists, Physical Therapists, Wisconsin Rehabilitation Association, United Cerebral Palsy, Handicapped United, and so many other groups to the realization that good things were happening.
The squeaky wheel of change was now turning and its motion produced a generation of new leaders, a fresh fever of organizing and agenda building, and bolder advocacy strategies than ever before among disability groups and their allies. Almost overnight, issues of access and inclusion for people with disabilities was on the public policy agenda the impossible dream was looking more like an attainable dream and I was in demand as a speaker to bring the message home. I knew Paul was smiling.
The remainder of 1972 was a fast-paced trip on the hamster wheel of legislative life. When I wasnt campaigning for re-election or traveling the state to speak with as many disability-related groups as possible, I was helping the Governors staff find a diverse mix of knowledgeable and available people to populate the Task Force--and successfully wangling funds from the Legislatures Joint-Finance Committee for just one more study group.
In early February 1973, Governor Lucey and I kicked-off the first Task Force meeting in Madison. The Governor issued an Executive Order charging the group with studying areas such as transportation, housing, employment, consumer affairs, education, rehabilitation, and recreation, as they affect people with handicaps, and with preparing a report which details the barriers they encounter and outlines practical recommendations for action to eliminate those barriers, thereby, assuring Wisconsin citizens with handicaps the full enjoyment of their civil rights.
Joining me on the Task Force were Republicans Senator Everett Sy Bidwell of Portage and Representative Sheehan Donoghue of Merrill, along with 30 other individuals drawn from academia, the medical field, business community, state government and non-profit disability and aging groups. Ten members of the group lived every day of their lives with a serious disability; counting those with disabled family members, the number rose to 15. Throw in a rural mayor, an urban county sheriff, a Dane County farmer and an inner city black pastor, and you had all the ingredients for a zesty human stew.
The Dominos Fall
On March 22, 1973, the fresh energy and assertiveness coursing through the disability rights movement flashed across the front page of the Milwaukee Journal with a story and photo of protesters who snarled traffic by rolling their wheelchairs into the busy downtown Milwaukee intersection of Plankinton and Wells Streets. The upstarts known only to themselves as the Crippled Commandoes, were objecting to Milwaukees lack of accessible public transportation for people with limited mobility. Arrests were made, but the genie of activism was out of the bottle, and both Milwaukees daily newspapers began to editorially call for a transit system everyone could use.
On March 23rd and 24th of that same year, the Task Force held its first public hearing in Milwaukee at Goodwill Industries amid heavy media coverage. Hearings followed in Beloit-Janesville, Madison, Eau Claire, Wausau, Appleton, La Crosse and concluded on June 1st in Superior. All were well attended and the media coverage was impressively heavy. The voice of Wisconsins disabled community was speaking out about its needs and being heard.
In August 1973, my colleagues and I introduced a cluster of 10 bills dealing with accessibility issues. First we called it the Accessibility Package, then the Mobility Package, and finally settled on Freedom Package. We combined the Freedom Package with a modest but very effective print marketing theme featuring a photo of the Statue of Liberty with the bolded words The Trouble with Wisconsin is emblazoned across it, and then below in equally bold letters the words We cant use it! Now Paul had to really be smiling.
Collectively, the Freedom Package bills proposed requiring buildings undergoing major remodeling to construct wider doorways, provide wheelchair access to public rest rooms, ensuring accessible polling places, removing jury duty restrictions, ending employment discrimination, allowing income tax deductions to cover the costs of removing architectural barriers, and revising the 1972 curb ramping law to provide better cues for blind pedestrians. The bills relating to remodeling, accessible bathrooms and curb cuts were approved the next year and those successes triggered a highly-organized effort by advocates to revise the state building code.
On April 1, 1974, at the Assemblys request, Attorney General Robert Warren issued a five-page legal opinion stating there is no state or federal constitutional provision compelling states to require public buildings to be accessible to people with disabilities. Then he added The Legislature has an affirmative duty to ensure equal access to public buildings, seats of government, and other government buildings to all constituted classes of citizens, including the physically handicapped. While finding no constitutional imperative, even Bob Warren was saying Hey folks, you really need to do this.
On July 19, 1974, I presented the final report of Wisconsins Task Force on Problems of People with Physical Handicaps to Governor Lucey at Goodwill Industries in Milwaukee. It was a day of alpine highs for everyone and one of the proudest days of my life. The 33-member Task Force had worked for 18 months, held eight public hearings spanning 11 full days, and listened to 135 hours of testimony from over 400 witnesses. As I handed a copy of the 416-page report to the Governor, I told him We believe we are sending you the most comprehensive report ever compiled on the everyday challenges faced by people with disabilities.
Surprising no one, I dedicated the report to The teaching and vision of my friend, the late Paul W. Hunt, who knew our most wasted natural resource is our people, and believed that all people must have the opportunity and independence to work out their own destinies if they are ever to truly know the largest dimensions of themselves.
In accepting the report and its 250 recommendations, the Governor issued an Executive Order directing that All planning of new state facilities shall incorporate a commitment to barrier-free design to allow usability by all people including those with sight, hearing and mobility problems. The order further directed That state agencies which provide services to the public shall investigate and incorporate all practical management changesto provide more complete accessibility to the public.
More energized than ever, a group from the National Paraplegia Foundations Architectural Barriers Committee pushed to finalize the work of bringing the state building code into compliance with all the new legislation requiring accessibility. By January 1, 1975, a revised state building code went into effect mandating access for people with disabilities.
On January 8, 1975, I introduced a sweeping, first in the nation, disability-focused civil rights bill. When it came to the floor of the Assembly for a vote, it was accompanied by petitions from all over the state containing 34,000 signatures in support of stronger civil rights protections for people with disabilities. At the time, itwas the second largest legislative petition drive in the history of Wisconsin and Assembly Bill 1 became law on May 12, 1976.
In addition to Assembly Bill 1, my colleagues and I introduced an updated Freedom Package of 13 bills related to securing the rights of people with disabilities. They ran the gamut from simply removing labeling terms like invalid, deformed, crippled, deaf and dumb, from the statutes; forbidding discrimination in the selection process for jury duty; establishing parking for the disabled; and requiring aspiring architects to demonstrate knowledge of barrier-free design before they are licensed.
Also in 1975, nearly two years after wheelchairs clogged downtown Milwaukee traffic to protest inaccessible buses, former Wisconsin Attorney General, now federal judge Robert Warren, enjoined Milwaukee County from buying buses whose designs ignored the needs of the elderly and people with disabilities. The lawsuit, brought by Randy Bartels, a man with cerebral palsy, was based on the provisions of a new federal law found in Section 504 of the Rehabilitation Act of 1973 requiring that reasonable accommodation must be made when federal money is involved.
On July 6, 1977, Governor Lucey resigned to become U.S. Ambassador to Mexico, but the dizzying pace of legislation and administrative changes continued during the short tenure of Acting Governor Martin Schreiber, who had been interested in aging and disability issues throughout his public life.
With the signing of the Budget Review Bill in July 1978, Schreiber and the Legislature created the Governors Committee on Problems of Deaf and Hard of Hearing People, appointed 18 people to serve on it and asked me to chair it. The Committee was created to study the needs of the deaf and the appropriate role of the state in meeting such needs. It was a direct outgrowth of the 1974 Task Force which I and many others felt had not sufficiently examined the needs of Wisconsins deaf, deaf-blind, and hard of hearing community.
On May 25, 1979, I presented the final report of the Committee to new Governor Lee Sherman Dreyfus who had defeated Martin Schreiber the previous November. In an exceptionally emotional ceremony, the usually jovial, red-vested, Dreyfus accepted the report by acknowledging that Wisconsins deaf citizens had been largely ignored. Promising better days, he said The state has paid little attention to the problems of deaf and hard of hearing people. We see the white cane for the blind, we see the wheelchair, but I have lived in a society where we do not see the deafness. With the help of this report, the Legislature and the Governor and the people of this state will do something about that. You have my pledge.
Between 1977 and 1980 at least 10 more pieces of Freedom Package legislation were passed implementing more of the work of both the earlier Task Force and the Deaf Study Committee. A new State Bureau for the Hearing impaired was created, sign language interpreters were assigned to regional state offices, emergency communication systems were upgraded through use of visual warning signals and the mandating and placement of teletypewriters in Sheriffs departments and other critical locations.
Looking Back
I look back in happy astonishment at the evolution of rights, services and respect for people with disabilities that has unfolded since my life collided with Paul Hunts on that hot night in 1970. By my count, at least 25 pieces of legislation directed toward the needs of physically and developmentally-challenged people were enacted into the statutes between 1971 and 1980 not counting numerous budget amendments, administrative rules, and executive orders. Much of the legislation passed quite easily once policy-makers understood the needs of people with disabilities and became aware and sensitized to the many barriers society had placed in their paths.
In addition to the legislation, two task forces scrupulously spotlighted the needs of people with all types of disabilities; a building code was extensively rewritten to accommodate all and not just the able-bodied; courts and legal systems responded to new laws and societys changing view of disability; and three governors effectively coaxed their administrations into action on behalf of greater inclusiveness and sensitivity to the needs of people with disabilities.
Most heartening to me was the way so many people with disabilities rallied to the movement, recast themselves as advocates, became educated on the issues, and charged ahead to challenge and beat down the barriers that in many cases had consigned them to second class citizenship. They replaced apathy with activism and education, and dramatically enlarged the circle of public awareness and understanding. Not all the challenges were met or solved and many new ones and some of the old remain today -- but a mighty effort was made, and the overall impact on the lives of thousands of Wisconsinites with disabilities was of seismic proportions.
As I prepared to leave the legislature at the close of 1979, I also drew deep satisfaction from the fact that many of my colleagues in both parties and both houses had picked up on the mantra of inclusion, empowerment, and disability rights. Representative Mary Lou Munts of Madison expanded the agenda into the rights of children with disabilities and the behavioral health area.
Kenosha Senator John Mauer, guided by the superb advocacy of deaf-blind constituent Edith Simons, proved relentless in pushing most of the legislation that came from the Study Committee on needs of the deaf, deaf-blind and hard of hearing and laid the groundwork for later establishment of a text relay system for the deaf that has been upgraded to the current video relay system. My departure guilt was further eased by the knowledge that Justin Dart Jr. had publicly said good-bye to corporate life and was barnstorming the country beginning his long, national campaign to gain approval for what ultimately became the Americans with Disabilities Act of 1990.
Paul
To the best of my knowledge there are no iconic monuments or memorials honoring Paul Hunt; no current local or state leadership or service awards bear his name, praise his work, or extoll his virtues; no scholarships emulate his spirit or inspire the young to be like him and reach for the stars. Neither footnotes nor asterisks mark his legacy, yet for me and many others, Paul was the galvanizing impulse, the prophet-teacher, the spark that ignited so many of us into a wildfire of activism and thereby sped countless others into blazing motion enabling us to shape a quiet Wisconsin revolution and write a chapter of access and empowerment into the book of the American disability-rights movement.
I dont presume to know or understand what metaphysical magic led me to stop at that one last door in the hot summer of 1970. But I did stop, and it led me to Paul and a promise, to lifetime friends and heroes, to the chronology above -- and to some of the richest and most fulfilling years of my professional life.
In a few days the 25th Anniversary of the Americans with Disabilities Act will be nationally celebrated in Washington, D.C. I will be there, and Paul is going with me.
Jim Wahner 6/9/2015, All Rights Reserved
For most working adults, going on vacation is something they look forward to. Im no different. For people with disabilities, travelling can have some unique challenges.
Growing up, I was very fortunate in that my family traveled a lot. Ive been fortunate enough to have been in about 40 out of the 50 states in the US and Ive been to Canada and Mexico a few times.
Traveling when you have a physical disability can present many different challenges. From simple things such as finding an accessible restroom to dealing with places where there are only flights of stairs, traveling anywhere when youre in a wheelchair can be pretty interesting.
I have both a power wheelchair and a manual wheelchair. I use my manual chair when we go to relatives houses (because theyre not accessible) and when we fly some places. When I was a lot younger, we used my manual chair a lot more than we do now because it was a lot easier for my parents to move me around because I was smaller, and I was young enough that freedom wasnt an issue. Now, when I have to be in my manual chair for any length of time I cringe. When Im in my manual chair, Im completely dependent on people to push me everywhere. As much as its an inconvenience though, I wouldnt have been able to go to half of the places Ive been without it.
Though thanks to the ADA, accessibility in the US has immensely improved over the years, its far from still perfect. One of the areas that still needs improvement is airline access. Most airlines have accessible jet ways now, but wheelchairs still cant fit on the plane. The aisle chair they provide to get onto the plane is so small and little, that most people in chairs can hardly sit on it. Generally people in chairs, like myself would much rather be able to take their chairs right onto the plane, and get buckled down there. Theres also the issue of getting an accessible van if the person wants to bring their power wheelchair. Its nearly impossible to find a rental place that has a van with a lift. Thats why when we flew when I was younger, I always brought my manual chair.
However, a few years ago, I discovered a friend from college always flew with her power wheelchair. I approached my parents with the idea of flying to Las Vegas with my power chair. Vegas is a perfect city to fly to with a power chair because you dont have to rent a vehicle. Everything is pretty accessible and accessible cabs and buses are readily available. We flew there with my power chair a few years ago, and it was awesome! It was so much easier on my parents not to have to push me everywhere, and I obviously loved the freedom and independence it gave me.
Recently, we flew to Vegas again with my power chair. I was so excited for this vacation. It had been awhile since I had been away, and I was really looking forward to being able to use my power chair again out there. That excitement quickly ended as soon as I started driving my chair off the jet way in Vegas. Something was messed up with the joystick (the controller). When the airlines put my chair in the storage, they werent careful and likely grabbed the chair by the joystick wire. It would go a couple feet and then abruptly stop. It progressively got worse throughout the day. My parents and I soon realized that this wasnt going to work all week.
Fortunately, we were able to rent a manual wheelchair from the hotel and buy belts to hold me in. We called the airline to report the damage, and they had a wheelchair repair company come get my chair. They ordered a new joystick and had it overnighted. For some reason, however, the repair company was unable to program it. They returned my chair with the new joystick in a bag. We had to drag it all the way back through the airports when we returned home with it not working properly. As soon as we got home, we took my chair to our wheelchair place, and they had the joystick hooked up and working within a matter of hours. While the airlines did pay for the wheelchair repairs and the rental of the manual chair, it wasnt much of a vacation for my parents or I. I felt extremely bad for mom and dad because they had to push me everywhere in that extreme heat. They felt bad for me because I basically lost my independence for the week, and they knew how much I had been looking forward to the trip. We made the best of it though.
We wrote a letter to the airlines explaining the trouble we went through. Were waiting on response back. The guy from the wheelchair place in Las Vegas told us that airlines set aside three to four million dollars per month for wheelchair repairs like these. Now, what does that say? I think airlines need better training on how to handle special needs equipment. They need to understand that medical equipment is not just more luggageits items that peoples lives depend on!
I think it may be awhile before I fly with my power wheelchair again, but, hopefully, someday I will. Regardless of the challenges, thanks to my wonderful parents Ive been to a lot of places and experienced more things that many people will never be able to. And for that, Im very grateful!
What travel experiences have you had? Share them with us.
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
Great news on theNational Disability Institutewebsite stating that Governor Walker signed the ABLE Act into law on July 12th.
Wisconsin Becomes Latest ABLE State
On July 12, Governor Scott Walker signed into lawSenate Bill 21, the Wisconsin State Budget. The ABLE Act was included as a provision to the underlying bill.
The ABLE Act will allow certain individuals with disabilities and their families the opportunity to contribute to a tax-exempt savings account that can be used for maintaining health, independence and quality of life. As passed, the ABLE Act requires each state to independently establish, implement or contract with other states on the availability of ABLE accounts.
National Disability Institute (NDI) has long championed the ABLE Act as a critical strategy to providing a pathway to a better economic future for all people with disabilities. As the nations first nonprofit dedicated to improving the financial health and future of all people with disabilities, the organization has extensively documented and called attention to the daily reality and extra expenses associated with living with a disability, and the challenges of navigating the complex web of government rules to maintain public benefits eligibility.
NDI applauds the Wisconsin State Legislature and Governor Walker for their support of the ABLE Act. We look forward to working with other states on crafting and passing similar legislation.
For the latest updates on the status of state ABLE legislation,please visit National Down Syndrome Society's ABLE State Bills webpage. To learn more about the ABLE Act,please visit NDIs ABLE Act webpage.
The Department of Justice has published a new 9-page ADA technical assistance document,http://www.ada.gov/regs2010/service_animal_qa.html" target="_blank" rel="noreferrer noopener">Frequently Asked Questions about Service Animals and the ADA|http://www.ada.gov/regs2010/service_animal_qa.pdf" target="_blank" rel="noreferrer noopener">PDF, to further assist covered entities and people with disabilities to understand how the ADAs service animal provisions apply to them. The document answers questions that continue to be asked since the publication of the Departments 2011 document,http://www.ada.gov/service_animals_2010.htm" target="_blank" rel="noreferrer noopener">Revised ADA Requirements: Service Animals.
***Thanks to the Great Lakes ADA Center for this information.
Another interesting article inDisability Scoopwritten by Michelle Diament about the new rules the IRS is proposing for the ABLE (Achieving a Better Life Experience) Act. She explains some of the proposed guidelines and implications.
IRS Proposes Rules For New ABLE Accounts
By Michelle Diament
Six months after a federal lawpavedthe way for tax-free savings accounts for people with disabilities, officials are providing details on how they expect the new program to operate.
In aproposed ruleissued Monday, the Internal Revenue Service unveiled guidelines for the Achieving a Better Life Experience, or ABLE, Act. The federal law is designed to allow people with disabilities to save money without risking their government benefits.
The proposal offers specifics for the first time on how the new accounts should function and clarifies what types of expenses money saved in an ABLE account could be used for.
Advocates say theyre pleased that the IRS took a lenient view in determining what counts as qualified disability expenses under the law. Though the ABLE Act mandates that money can be used for specific purposes including transportation, housing and education, the law also allows for other expenses and it is up to regulators to determine what should qualify.
The Treasury Department and the IRS conclude that the term qualified disability expenses should be broadly construed to permit the inclusion of basic living expenses and should not be limited to expenses for items for which there is a medical necessity or which provide no benefits to others in addition to the benefit to the eligible individual, the proposal states.
The view that expenses must merely offer a quality of life benefit for a person with a disability rather than be of medical merit is significant, said Heather Sachs, vice president of advocacy and public policy at the National Down Syndrome Society.
Were glad to see that a person with a disability would not have to justify the purchase of an iPhone or something similar as a medical expense, Sachs said.
Other details within the proposal are causing concern, however. The reporting and oversight requirements outlined go beyond those governing 529 college savings plans that the ABLE accounts were modeled on and could make the disability savings vehicles onerous to administer or utilize, advocates and state officials say.
As I read the proposed regulations, every time individuals with disabilities want to spend even a single dollar of their money, from their own ABLE accounts, they have to file paperwork with the state demonstrating that each is a qualified disability expense,' said Nebraska State Treasurer Don Stenberg. This is a slap in the face of Americans with disabilities, is an unreasonable and unnecessary burden on them, and will create administrative burdens that will increase the costs qualified individuals will need to pay to use the program.
The proposed rules will be up for public comment for 90 days before the IRS issues final regulations.
In the meantime, several states are working to make the ABLE Act a reality for their residents. Despite the federal law, each state must put their own regulations in place before making the accounts available.
Currently, the ABLE Act has been enacted in 22 states, according to the National Down Syndrome Society. Each of these states, however, is still working out details related to administering the program.
Sachs said she expects that states will likely wait for the final IRS rules to be issued before allowing financial institutions to begin offering ABLE accounts.
Source:http://www.disabilityscoop.com/2015/06/23/irs-proposes-rules-able/20401/
DISABILITY SCOOP: Under Bill, Medicaid Would Incentivize Community-Based Options
By SD Network, 2015-07-07
This is an interesting article inDisability Scoopwritten by Michelle Diament about how a bipartisan group of senators who are proposing a bill which wouldprovide financial incentives to states for helping people with disabilities live and work in the community. Under the bill, a five-year program would be established in 10 states. It will be interesting to see what comes of this.
Under Bill, Medicaid Would Incentivize Community-Based Options
By Michelle Diament
A bipartisan group of senators is looking to provide financial incentives to states for helping people with disabilities live and work in the community.
The lawmakers want to establish a new Medicaid demonstration program that would offer financial bonuses to states for encouraging community-based outcomes. Under a bill introduced this week, a five-year program would be established in 10 states.
States have financial disincentives to do more under the current system. This bill would try something different, said the measures chief sponsor, U.S. Sen. Chuck Grassley, R-Iowa. For participating states, it would change the incentives and help states do what theyd really like to do to better serve individuals with disabilities.
Specifically, the legislation known as the Transition to Independence Act would offer bonus payments to participating states for meeting certain benchmarks. Payments would be tied to increasing integrated employment and decreasing jobs paying subminimum wage, those located in segregated settings and day habilitation placements for individuals with disabilities receiving Medicaid-funded home or community-based services.
The bill is co-sponsored by Sen. Ron Wyden, D-Ore., and Sen. Bob Casey, D-Pa.
It has support from a wide range of disability advocacy groups including the American Association of People with Disabilities, the American Network of Community Options and Resources, the Autistic Self Advocacy Network, the National Association of State Directors of Developmental Disabilities Services, the National Down Syndrome Congress and Autism Speaks.
Source: http://www.disabilityscoop.com/2015/06/19/under-bill-incentivize/20397/
Register Now for the WI Self-Determination Conference!
Scholarships are available to individuals with disabilities experiencing financial hardships. Click here formore information and a scholarship application.
Monday Evening Kick Off Event
The Monday evening Kick-Off event In All FAIRness is set in a State Fair atmosphere and will feature interactive games, Fair food and fun all focused on learning more about disability rights, advocacy, and the ADA.
Keynotes/General Sessions
Join us inMoving Self-Determination Forward!
#SDMovingForward
Opportunity to Provide Input to Board for People with Developmental Disabilities Plan
By SD Network, 2015-07-07
BPDD is developing a new five year state plan. We need your input!
We need to know what you think are the most important issues that BPDD should work on to support individuals with developmental and intellectual disabilities to live, work and fully participate in community life.
Also, please share this survey link with others in your network.
If you have any questions or would like assistance in completing the survey contact Ann Sievert atann.sievert@wisconsin.govor call608-267-9897.
Weigh in on the Future of Managed Care
in Wisconsin: Submit Comments byJuly 27
The federal government has just issued some important rules that will shape how Wisconsins new managed care system the future Family Care and IRIS will operate in Wisconsin.
This rule will outline how managed care is run in the future in Wisconsin.
Advocates, participants and their families have untilJuly 27to provide comments on how these systems should work. Comments from individuals are essential as the insurance industry will also be weighing in. Every comment counts!
Whats in this rule?
ThisPowerPointoutlines key sections of the rule and gives ideas on comments you can make.
You can read the complete 653 page rule:here
An executive summary of five important areas for people with disabilities and their families to comment on is below.
1. Defining Home and Community Based Long-Term Services and Supports
- Many people with disabilities rely on Medicaid for more than just doctor visits. They also need personal care, transportation, meaningful activities during the day and community employment supports, among others.
- The rule is very focused on medical care and provides very few details on home and community based services.
2. Network Adequacy
- As with other parts of the rule, definitions about whether there are enough providers in an area are similar to those used in private health plans (medical healthcare) and are not specific to the types of community-based long-term services that people with disabilities need.
- The rule tells states to determine whether there are enough providers within a reasonable distance from you.
- The rule indicates that stakeholders should be engaged, but it does not define what meaningful input looks likeincluding how many people, who is at the table, how often they should meet and what their roles should beor how stakeholders should be engaged.
4. Defining Profits and Administrative Costs
- The rule describes a standard called a medical loss ratio that outlines how much of insurers' revenue ends up going to the medical costs of patients versus administrative expenses and profits.
- The rule sets an 85% standard, meaning 85 % of insurers' revenue has to go to medical costs.
5. Monitoring Quality
- The rule requires managed care companies to use performance measures, monitor the quality of their long-term services and supports, and states that quality measures must include an effort to rebalance toward community integration.
- Ratings are based on indicators that are used in medical-type care and do not outline specifics for long-term services and supports. Long-term services and supports are very different from medical care supports. Many HMOs or MCOs lack experience serving people with more complex needs and those who self-direct their services. The rule does not specify any separate ranking system specific to long term care services.
***Thanks to the Wisconsin Board for People with Developmental Disabilities for sharing this information with us.