News
What's your story? Tell us a little bit about yourself.
An account executive at a major public relations firm and publicist for two Wisconsin rehabilitation centers, Jean was recruited in 1969 as a volunteer by the National Spinal Cord Injury Assn/Milwaukee; an event that changed her life. She has lengthy experience in addressing the rights of people with disabilities to live successful lives in the community. As a volunteer with the Milwaukee Chapter of the National Spinal Cord Injury Association, she led Wisconsin efforts to incorporate accessibility into the statewide building code in 1973-76 and served as chair of the DIHLR building code committee when it completed a complete revision of the statewide code. She was also involved in the landmark court decision Barthel vs. Biernat in 1976 that was the first in the nation to prohibit a public transit system from purchasing new inaccessible buses until they had adopted a plan for serving the transportation disadvantaged. She was appointed by County Executive Bill O’Donnell to the board of directors of the Milwaukee County Transit System after that litigation was settled to provide oversight as the transportation services were developed and funded. During the late 1970s, she represented NSCIA on the state-level planning committees for the development of the Community Options Program (COP). In 1981, she joined the management team of former state representative James Wahner at the Milwaukee County Department of Health and Human Services. In that capacity, she was the team leader for Milwaukee’s implementation of COP for all populations. In addition, she co-chaired a Wisconsin statewide task force in 1987-88 that planned for the evolution of county nursing homes for people with serious mental illnesses following a US Supreme Court decision disallowing federal Medicaid funding for such facilities. She was the CEO/founder of Strategic Partners from 1991- 2019, a public services redesign firm. In that role, she has participated in projects relating to disability in Florida and Georgia.
As a retiree, Jean has seized/assigned/been recruited for the opportunity to write the story of the great Wisconsin revolution in disability access, rights, and choices that she, Dan Johnson, Ellen Daly, Mike Falconer and many others witnessed and fostered between 1965 and 1990. She explains that their thesis is simple and clear: Pre-ADA, Wisconsin led the way. Their website is www.Wisdisabilityrights.com. The Facebook page is Physical Disability Community-Wisconsin. “Both still need ongoing work,” she admits.
How are you involved with self-determination? Why did you join the SD Network?
Jean joined the Network in 2015 when she was working with ERI and Dan Johnson to organize the logistics and content for a memoir. They were also pulling together Wisconsin's response to ADA's 25 anniversary. She was involved in self-determination before there was a name for it. When they implemented COP in Milwaukee in 1984, consumer-directed care was the goal from the beginning. She explains that now, Electronic Visit Verification (EVV) is a major challenge, but Wisconsin has been given an extension. “Hopefully, they will get it right,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Jean states that Wisconsin has much better resources to support self-determination that most states. “IRIS is a national leader, and the work that Lynn Breedlove is doing internationally to spread the word and share information with countries in Europe is amazing,” she says. She also comments that consumers are now very sophisticated advocates. She believes that the efforts in 2018 when Congress was considering repealing the ADA were first class and very successful. She says, “it was the disability lobby that won that fight.”
What tip or resource would you like to share with people who want to be more self-determined?
Jean is a firm believer in networking. “It takes a village, so it is critical to network and spend time with other people who are in charge of their own care. Today, there are online forums and internet resources that didn't exist in the 1980s and early 1990s,” she explains.
What are some of your hobbies?
Jean is a big ice hockey fan. She loves to travel (she went to Scotland for three weeks this summer after working to improve her physical condition for a year) and loves spending time with her grandkids (both in high school). She’s a member of the board for her condo community and she has learned a whole lot about land use and overdevelopment as a result.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
It’s often said that there are five seasons in Wisconsin—Winter, Spring, Summer, Fall, and Road Construction. Obviously, calling road construction a season is a facetious way of saving that there’s a lot of road work that goes on from about April until November. Road construction often leads to delays and detours. Even though it’s necessary to keep the roads functional and safe, people usually get aggravated by it because it takes longer to reach their destination. Nothing really can be done about it other than leaving earlier or finding different routes. It’s part of life. Many people with physical disabilities don’t drive, but we often experience our own type of road construction so to speak—navigating through life in an “accessible” world.
Unless one is unable to, people don’t think about how many times they did step up and down from something each day. Whether it’s stepping in and out of a vehicle, stepping off a sidewalk to cross the street, or riding a escalator in an airport, people step up and down multiple times a day. People who have mobility issues often are very aware of these things because we have to find ways to overcome these simple steps that most people take for granted.
Thanks to the Americans with Disabilities Act, most public places are “accessible.” I put the word accessible in quotes because, in my opinion, it’s a relatively loosely used term in today’s day in age. Don’t get me wrong, I’m very grateful for the advancements in accessibility over the last 30 years. They have greatly improved my life and have allowed me to do and experience many wonderful things. However, with that said, there is still vast room for improvement. I also should mention that in many cases things that are deemed accessible often require people to go to great lengths in order to access whatever it is. Let me explain.
My parents and I recently returned from a trip to Las Vegas. We’re not huge gamblers, but I love the city because there’s always so much going on. Since I love going there, we usually go once a year. After the airlines ruined my power chair a few years ago, I only fly with my manual wheelchair, so I have to be pushed everywhere. I’ll write about getting through an airport in another journal another time, but everything from getting an accessible shuttle to our hotel to crossing the street we seemed to run into barriers.
We’re pretty seasoned travelers, so my dad had booked a wheelchair accessible shuttle to the hotel. We get there, and, of course, vans from the transport company were there; however, not the accessible one. We had to wait over a half hour for it. We finally get to our hotel and start walking around. There are lots of skywalk bridges between the hotels on the Strip. Each side of the skywalk has stairs, an escalator, and an elevator. In Vegas, elevators seem to frequently break down. Multiple times, we found ourselves stuck on a skywalk because an elevator was out. When that happened, we usually had to go back down in the elevator that was working and find a different way. Admittedly, very unsafe, but there were a few times where my dad justice tilted my chair back and took in me down the escalator (we found some nice people to stand in front of me in case I’d fall).
Skywalks weren’t the only thing. There were four steps up to the pool deck at our hotel. If people with mobility issues wanted to go to and from the pool area, they had to find a hotel employee who would have to call another employee to walk us through the back to get to and from it. This would take forever, so my dad just pulled my chair up and down the stairs each time. Our hotel’s casino had four stairs in the middle of the going to the lower tier where the main entrance was. The ramp was under construction all the while we were there. Again, they wanted people who used wheelchairs and scooters to wait to be escorted around the back. We never did this because we didn’t want to wait—my dad again pulled me up and down each time. When you have a limited time on vacation somewhere, the last thing you is wait to be escorted because you can’t do stairs.
Vegas isn’t the only place where these things happen. It’s really everywhere. Many places’ accessible entrances often aren’t their main entrances. While I’m thankful there’s an accessible entrance, it doesn’t seem fair to me that I have to use a different entrance then everybody else. Obviously, that’s just my opinion, and I understand that everything can’t be made totally accessible everywhere.
Though, our “road construction” isn’t what most people think of, it’s still aggravating. While it’s fun to fantasize about, I don’t think there will ever be a totality accessible world. There will probably always be roadblocks and detours people with disabilities to overcome. Life is full of detours and roadblocks for everyone—not just those with disabilities. It’s hoping we handle and persevere through them that shows a person’s character!
***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.
DISABILITY SCOOP: Apartments Pair People With Developmental Disabilities, Older Adults
By SD Network, 2019-10-02
A new housing development in Minnesota is intended to help people with disabilities mingle with others outside of their own group. Bethesda, a Watertown, Wis.,-based nonprofit, is building the $18 million, 52-unit complex of apartments and townhouses for people with intellectual and developmental disabilities and people 55 and older. People will live independently in their own apartments, but mingle in common areas to socialize, take classes, exercise and practice yoga.
Thanks to a new rule, all 50 states and Washington, D.C. have mandates that require some level of insurance coverage for the treatment of autism. Insurance companies are now required to cover treatment for autism that is “medically necessary and appropriate and is not experimental,”
WHITEHOUSE.GOV: Presidential Proclamation on National Disability Employment Awareness Month, 2019
By SD Network, 2019-10-02
President Trump proclaimed October as National Disability Employment Awareness Month.. In the proclamation, it talks about how we need to reaffirm a commitment to fostering opportunity for people with all abilities to use their skills and talents in the workplace.
CHANNEL 3000: Disability Rights Commission votes not to support Madison plastic straw restriction proposal
By SD Network, 2019-10-01
The city of Madison is considering fining restaurants that give out plastic straws unless a customer asks for one first. This proposed ordinance's whole purpose is to cut down on the amount of waste, particularly of single-use plastics, in the city, but the proposal is drawing criticism from a number of groups. The Disability Rights Commission doesn't support it claiming many people with disabilities rely on straws.
MILWAUKEE JOURNAL SENTINEL: These motorized outdoor wheelchairs can handle any terrain, are free to borrow and come with a trailer to haul them
By SD Network, 2019-10-01
Hiking is a common outdoor in Wisconsin. Now people who have mobility issues can experience the beauty of the outdoors like never before. Thanks to an organization called Access Ability Wisconsin, there are now 15 all-terrain outdoor wheelchairs and 12 trailers that people can borrow for free (with a $50 deposit) at eight locations around the state. These wheelchairs can go almost anywhere — up hills, over mud, through forests, even on 12 inches of fresh Wisconsin snow.
- Adults, 18 and over, with any type of disability, mental or physical health condition are encouraged to participate
- The survey should take about 20 minutes to complete
- Responses are anonymous
C NET: Comcast's Internet Essentials delivers low-cost broadband to people with disabilities
By SD Network, 2019-10-01
According to a recent study, people with disabilities are less likely to use the Internet than any other group. Of the more than 56 million people in the US who have a disability, many haven't been able to afford service or have lacked the digital training to access the internet. What this means for people with disabilities is that they often miss out on the benefits and opportunities that high-speed internet connectivity affords the rest of the population. That's where Comcast's expansion of its Internet Essentials program comes in. The program has been modified several times over the years to include low-income veterans and people receiving public housing benefits.
WISCONSIN BOARD FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: Annual Report 2018-2019
By SD Network, 2019-10-01
Every year BPDD puts together an Annual Report detailing our grants, projects, conferences and policy work outcomes for the previous year. Our federal charge in the Developmental Disabilities Act is, identifying the most pressing needs of people with developmental disabilities and developing innovative and cost-effective ways to meet these needs in a manner that upholds human and civil value. Councils (Boards) must include, at minimum, 60% people with developmental disabilities and their family members.
The BPDD State Plan, informed by statewide input from the disability community, focuses primarily on
two areas: Full Participation in the Community & Advocacy Efforts. During 2018–2019, we have made
significant progress in all our goal areas.
You can find a link to our 5-year state plan here: https://wi-bpdd.org/wp-content/uploads/2016/09/2017-2021-State-Plan-Final.pdf
Starting in 2020 we will be hosting a number of Community Conversations around the state to gather input for our next 5-year state plan. Please read through our current state plan and our annual report so you can help us develop our new state plan to address the needs of the disability community.