News

Meet Barb Wollner.  When she’s not traveling the world or reading mystery novels, she is busy helping people with self-direction.  She is a firm believer in using this Network as a resource to connect with others.  She encourages people not to be afraid to reach out for assistance and support.  We are so fortunate to have Barb as a member of the Self-Determination Network!

How are you involved with self-determination?  Why did you join the SD Network?

Barb is one of the Self-Directed (SDS) coordinators for Community Care, Inc. She joined the Network to take advantage of the pool of experience of the members of the Network.  “There’s always up-to-date information coming out of the Network,” she says.

Tell us some good news - what's the most exciting thing happening for you  (or in Wisconsin) in terms self-determination?

Barb explains that the good news is the fact that we have moved beyond just talking about self-determination. There are so many resources now to assist people along the way. “Whether it’s needing an advocate, information on housing options or some practical advice on hiring employees, there are people who are knowledgeable and willing to make changes happen. That’s happening on an individual person to person level as well as impacting the system as a whole,” she says.

What tip or resource would you like to share with people who want to be more self-determined?

“Don’t be afraid to reach out and ask for assistance, brain storming, or just for support,” Barb says. There are people within the Network who may have run into the same issue at some time.

What message would you like to share with the members of the SD Network? 

Barb would like to share that she values the diversity and knowledge the different members bring to the Network.  “Especially in this time of political uneasiness, the determination and thoughtful way roadblocks are tackled is appreciated,” she explains.

What are some of your hobbies?

Barb is an avid traveler; she has been to 16 different countries. She also enjoys reading and says that mystery novels are her favorite.

***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.

AbleGamers, a nonprofit organization that aims to make video games accessible for people with disabilities, is creating Player Panels to connect gamers with disabilities with video game developers. The panels would test games that companies are developing and offer advice on how to make them more accessible.  To keep the panel members safe, AbleGamers will liaison between them and the companies. They will vet incoming requests for advice as well as make sure the panel members are paid for their work. AbleGamers is aware that many people with disabilities are on Social Security and cannot receive extra money without it affecting their benefits and is working with companies to offer alternative compensation. One idea is to give the panelists gift cards to popular stores.

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Uber was recently sued by the Equal Rights Center, a civil rights nonprofit based in Washington, D.C., for violating the Americans with Disabilities Act. The suit is based on Uber's Washington, D.C., area services, and alleges that Uber is incapable of adequately providing services to customers with nonfoldable wheelchairs. And even though some cars are wheelchair accessible, there is no way for drivers to indicate that their vehicles are accessible or for riders to request it. Although Uber has introduced the UberWAV app for riders with disabilities, an investigation by the Equal Rights Center showed that riders using the app paid up to twice as much and waited on average eight times longer for rides than people who use Uber's nonaccessible service. The lawsuit alleges that Uber's vehicle requirements actively discourage Uber drivers from operating accessible vehicles.

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Most people don’t think twice about stepping off a sidewalk curb or running up a flight of stairs to get to their favorite restaurant.  People normally don’t think about things like making calls to companies or being able to use public transportation either.  Tasks such as these seem simple to most Americans.  However, for people who have disabilities, being able to accomplish these things is a sign of major progress.

July marked the 27^th anniversary of the Americans with Disabilities Act (ADA).  The Act which became law in 1990 which is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else. Some of the things it does include: it ensures that people with disabilities have the same employment opportunities and benefits that those without disabilities have and that employers provide reasonable accommodations for employees with disabilities, it requires that all public programs, places, and events are accessible to those who have disabilities, and it prohibits places of public accommodation (hotels, restaurants, stores, doctor’s offices, etc) from discriminating against people with disabilities.  In addition, the law requires telephone and Internet companies to provide a nationwide system of interstate and intrastate telecommunications relay services that allows individuals with hearing and speech disabilities to communicate over the telephone.  Among many other things, it also requires that public transportation be accessible to everyone.

Another significant law for people with disabilities was also redone and renamed in 1990. Previously known as the Education for All Handicapped Children Act (until 1990), the Individuals with Disabilities Education Act (IDEA) is a piece of legislation that ensures students with a disability are provided with Free Appropriate Public Education that is tailored to their individual needs.  In short, the goal of IDEA is to provide children with disabilities the same opportunity for education as those students who do not have a disability. Some of the elements it includes are Individualized Education Plans (IEPs), Least Restrictive Environment, and Transition Services.  Among others, these components allow students with disabilities to receive education just like their peers do.  Public schools have to provide support and services to students with disabilities to meet their educational needs. Today, more than half of children with disabilities are in general education classrooms for most of the school day.

Fortunately, for me, I was born at a pretty opportune time as far as accessibility is concerned. I was just five years old when the ADA took effect, so I really don’t have much recollection of what things were like previously.  Same goes for the IDEA.  The first version of it took effective in 1975, but I think students with disabilities were still pretty segregated back then.  It disheartens me to think that there were so many people with disabilities that were left behind before these laws took effect.  Society lost out on millions of Americans with great potential.  It truly breaks my heart to think about all of the children who were institutionalized all of their lives just because they had some sort of a disability.  Children weren’t the only ones effected either.  Millions of adults with disabilities lost out on the opportunity to lead successful and productive lives because support wasn’t available.

Personally, I’ve greatly benefited from the IDEA and the ADA.  Thanks to the IDEA, starting in Kindergarten, I was able receive the services and support I needed to be able to be in all regular education classes with my peers.  I was then able to receive vocational rehabilitation services which provided me with the support I needed to earn a college degree and find employment.  The ADA allows me to be able to go almost everywhere I want/need to go.  It also protects me from getting discriminated against because of my disability.

Having said that, I believe that there’s a lot that should be done with the ADA.  Under the law, when businesses add on or remodel, they have to make the entire building accessible; however, as I recently found out, there are some stipulations to the rule.  A popular restaurant in my hometown recently added a rooftop deck.  I was excited because people were saying how cool it was; I figured that since it was an add-on they had to have put in an elevator to make it accessible.  Unfortunately, that wasn’t the case.  Since they serve the same food and “have the same décor” inside the restaurant (which is accessible), they don’t have to make the upper deck accessible.  To me, that’s unfair.  A rooftop deck obviously has a different atmosphere than an inside of a restaurant.  Another thing that really irritates me is that many older businesses choose not to remodel or add-on just because it’s too expensive to bring the building up to code.  While I understand it from the economic standpoint, I also believe it’s time to put some time stipulations on those businesses.  Airline regulations are another topic that should be looked at and improved.  Everything from check-in desks, to security, to plane accessibility could vastly be improved in my opinion.

So, while laws such as the Americans with Disabilities Act and Individuals with Disabilities Education Act have immensely improved lives for people with disabilities, there is a lot that still needs to be done.   A lot of progress has been made in the last 50 years; I’m looking forward to seeing what will be done in the next 50 years!

***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.

This is an interesting article about the redesigned symbol of access.  It explains that original the sign everyone is familiar with is a stationary figure that is sitting down. The redesigned image is moving, looks active and more capable. Some people think this new image is giving into the ableist school of thought--discrimination in favor of people who aren’t disabled. On the contrary, this is a direct result of various efforts of activism within the disability community.

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The Circles of Life Conference invites interested presenters to submit a proposal (or two) for the 2018 annual Circles of Life Conference scheduled for May 3-4, 2018 at the Paper Valley Hotel in Appleton, WI.  Between 400-500 individuals with disabilities or special health care needs, their families, and professionals from across Wisconsin attend the Circles of Life Conference each year.  We are looking for presenters including parents, family members, youth and adults with disabilities or special health care needs, professionals, providers, volunteers, or other potential presenters with information or expertise in a broad range of topics that affect families and individuals with disabilities.  Please consider submitting a proposal for the 2018 conference or share this information with other individuals who would be excellent presenters. Visit the Circles of Life web site at: www.circlesoflifeconference.com for application materials. The deadline for proposals is: October 5, 2017.

On July 26th, 2017, the Department of Justice published "27 Years of the Americans with Disabilities Act," a document that provides brief case highlights about the Department's Americans with Disabilities Act (ADA) enforcement efforts this year. The document recognizes the ADA's 27th anniversary and notes the Department's role in advancing the ADA's goals of ensuring equal opportunity, full participation, independent living, and economic self-sufficiency for people with disabilities.

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Here's another article about the direct care worker shortage in Wisconsin.  It reiterates that it has reached a crisis level and that advocates feel that there needs to be more than a 2% increase for long-term care and home care organizations, which is what Governor Walker recommended.  Due to this shortage, people aren't getting the crucial care they need to survive.  Although, grateful for any increase at all, advocates feel a rate increase of around 15% is needed to make a real impact.

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 Self-Determination Network News:

July 2017

Connect | Share | Learn | http://sdnetworkwi.org/  

Registration is now open for the 10th annual Self-Determination Conference. This conference ​works ​to ​empower ​people ​with ​disabilities ​in ​Wisconsin ​to ​have ​more ​control ​over ​their ​lives. ​More ​than ​600 ​people ​each ​year ​participate ​in ​the ​conference ​to ​learn ​more ​about ​self-determination ​and ​self ​directed ​supports ​so ​they ​can ​live ​independently, ​be ​members ​of ​their ​communities, ​and ​use ​public ​funds ​efficiently. ​The ​conference ​participants ​include ​people ​with ​disabilities ​and ​their ​family ​members, ​direct ​care ​providers, ​and ​professionals ​from ​Wisconsin’s ​disability ​community. Register today! 

Changes to Medicaid and the AHCA

The Senate has delayed its vote on the American Health Care Act (AHCA) until after its summer recess. There is a lot at stake for Wisconsin in this vote. The AHCA cuts federal Medicaid funding by 25% over 10 years and eliminates key health care protections for children and adults with disabilities. Estimates indicate Wisconsin could lose $1 billion in funding and put many essential programs and supports for children/adults with disabilities and seniors at risk. These significant cuts to Medicaid mean cuts to Wisconsin programs like Family Care, IRIS, the Children’s waiver, BadgerCare, mental health programs like CCS, Katie Beckett, SeniorCare, autism services, therapies like OT, PT and Speech, personal care, supports provided in schools and even Aging and Disability Resource Centers. Many of these are “optional services” in Medicaid and are at significant risk of being cut or eliminated.  We encourage people to continue to contact the Wisconsin Senators to ask questions and share their thoughts about this bill.

 Stacy’s Journal

Whether it’s going to the store to get milk, going to work, going to a doctor apportionment, or meeting friends for dinner, most people get out of their house on a daily basis. For many people with disabilities, going out isn’t always easy. In this month's entry, Stacy discusses how transportation is often one of the biggest barriers she faces. We encourage you to share your experiences as well.

Take five minutes to check out what's happening on the Self-Determination Network:

• Guardianship Survey:  The Wisconsin Board for People with Developmental Disabilities is conducting a survey in hopes of gathering information from a variety of stakeholders about their knowledge of and experience(s) with Wisconsin's adult guardianship system and children transitioning into adulthood to assist the  Board in better understanding which issues should be prioritized for short-term and long-term planning and action.  The survey closes August 1st.
• Caregiver Awards: Do you know a caregiver or team that deserves to be honored for the great work they do?  The Wisconsin Long-Term Care Workforce Alliance’s Annual Caregiver Awards are the only statewide recognition of these outstanding individuals and teams working tirelessly in all service locations.  Nominations are due August 1st.
• Big City Challenges:  Even with the American with Disabilities Act (ADA) and federal legislation to protect the people  with disabilities, studies find that too many American citizens are restricted in where they can go or live due to lack of handicap-accessible accommodations. Find out what many people feel is causing this.
• New Technology Eases Transportation Issues:  Public transportation often causes difficulty and stress for people with disabilities. Read about how modern technology firms are working to change this. 
• Update to Building Accessibility Standards:  The  International Code Council recently released an update to 2009 Accessible and Usable Buildings and Facilities standards that provide greater accessibility to buildings for persons with physical disabilities and incorporates new elements of building design.  Learn what the new standards include.
• Pros and Cons of On-Demand Services:  These days, people can do anything from make doctor appointments to get groceries or prepared meals delivered with just a click of a button.  While these on-demand services are often very for people with disabilities, they  often come with  some limitations.   Read about the benefits and risks of three common on-demand services.
• MCOs and Consultant Agencies Selected for Dane County:  The Wisconsin Department of Health Services recently announced the managed care organizations selected to serve Family Care members and the IRIS consultant agencies that intend to serve participants in the IRIS program in Dane County.  Find out which care organizations and consultant agencies were selected.

 Upcoming Events                                    

Here's a sample of upcoming events listed on the Self-Determination Network:

• Adaptive Water Skiing:   July 22nd, 5p.m. to 8p.m., South Wood County Park, Wisconsin Rapids WI
• Adaptive Water Skiing:  July 26th, 10a.m. to 4p.m., Brittingham Park, Madison WI
• 2017 ADRC Open House: Focus On ABiLiTY:  July 26th, 1p.m. to 4p.m, Health & Human Services Building, Waukesha WI
• Adaptive Water Skiing:  July 26th, 2p.m. to 6p.m., Fischer Park, Burlington, WI
• The Green Room With Dawn Green:  July 26th, 6p.m. to 8:30p.m., Fuel Cafe, Milwaukee WI
• AbilityWI Now!:  July 26th, 9p.m. to 10p.m., Online 
• Disability Pride Festival: July 29th, 12p.m. to 5p.m., Tenney Park, Madison WI
• Adaptive Water Skiing Picnic: July 30th, 10a.m. to 8:30p.m., Fischer Park, Burlington, WI
• Adaptive Water Skiing - Veterans Clinic:  August 9th, 9a.m. to 3p.m., Lance Park, Twin Lakes WI
• Adaptive Water Skiing:  August 9th, 10a.m. to 4p.m., Brittingham Park, Madison WI   
• US Wake Sports Festival:  August 15th to 16th,  Traxler Park, Janesville WI
• Adaptive Water Skiing:  August 16th, 2p.m. to 6p.m., Fischer Park, Burlington, WI
• Adaptive Water Skiing:  August 23rd, 10a.m. to 4p.m., Brittingham Park, Madison WI
• Fishing Has No Boundaries:  August 26th, 4:30a.m. to 1:30p.m., Lakeshore State Park Inlet Grounds & Docks, Milwaukee WI
• Adaptive Water Skiing: September 6th, 2p.m. to 6p.m., Fischer Park, Burlington, WI
• Red Roskopf Day AbilityFest Celebrating Communities And Families:  October 1st, The Golf Club at Camelot, Lomira WI
• Veterans' Resource Fair:  October 16th-17th, Waukesha County Expo Center Arena, Waukesha WI
• 2017 Self-Determination Conference:  November 1st to 3rd, Kalahari Resort, Wisconsin Dells WI  

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.

Whether it’s going to the store to get milk, going to work, going to a doctor apportionment, or meeting friends for dinner, most people get out of their house on a daily basis.  It’s the natural thing to do.  For many people with disabilities, going out isn’t always easy.  In fact, it’s often one of the biggest barriers.

Growing up, I was blessed that my family was able to take me places just like any kid. As I’ve written about in past entries, I’ve probably traveled to more places than most people my age.  Before getting our first wheelchair accessible van, my parents took me places in a car and took either my stroller or manual wheelchair.  I was young enough that the independence factor (when I use my manual chair as opposed to my power chair, I have to depend on others to move me around) didn’t really matter.  When my parents got their first wheelchair accessible van, I remember thinking it was so cool being able to go places in my power chair.  It brought a whole new meaning of independence to me.  As I got older, we used the car and my manual chair less and less.  My independence became more prevalent, so the van became my main means of transportation.  Now, we just occasionally use my manual chair for things such as visiting relatives and vacations where we fly.

When I started at UW-Whitewater, I found a whole new means of transportation—my wheelchair!  Yes, UW-Whitewater had a service that gave students with disabilities rides around campus.  In most cases, I think the Department of Vocational Rehabilitation (DVR) funds this for students who need it.  For a few years I was there, they also offered off-campus rides.  Students paid extra for this service and vans would take people to places such as stores and restaurants.  I used the service for a couple of years, but the service hours weren’t very convenient and it just wasn’t worth it.  I think they have stopped offering off campus rides now actually.  I used the on-campus ride service pretty regularly, but I also just went around in my chair quite a bit.  Whitewater is a pretty small town and the campus is small, so I could go anywhere in my chair (as long as the weather was decent).  It was awesome!  Whitewater also had a decent accessible cab service that my friends and I frequently used.  I had my manual chair down there as well, so oftentimes, my friends would just put me in their cars, and we’d go places. 

It wasn’t until after college that I realized just how big of a barrier transportation was going to be in my life.  My parents live outside of the city, so public transportation wasn’t an option.  I couldn’t cruise very far in my chair either.  I solely relied on my parents to take me everywhere.  That was a huge adjustment from college.  I had to schedule everything around their availability.

When I moved to Oshkosh, things got a little better, but not by much.  My apartment is in the city, but no stores or restaurants are real close by.  I used to go for long cruises all around town in summer.  However, unfortunately, that came to an end two summers ago when my chair quit on my way back from the park.  My whole family was out of state at the time, and it was a huge mess.  Fortunately, some nice people stopped to help me and they were able to figure out to call my care agency I had at the time (I’m nonverbal and of course didn’t have my communication device with me, so that added to the circus).  Needless to say, I don’t venture further than around the block by myself anymore!

Oshkosh does have accessible public transportation available.  Their bus system is accessible. A few years ago when I was working with DVR to try to find employment, they actually had me do bus training to see if it’d be a reliable source of transportation for me.  Unfortunately, due to many factors, it didn’t work out too well.  The closet bus stop is about two blocks away from my apartment which isn’t far, but if it’s raining or snowing, I have no way to protect my electronic equipment.  Plus, the bus schedule is very confusing, and it’d be nearly impossible to coordinate it with my care schedule.  There are two or three accessible cab companies in Oshkosh.  One is connected with the city bus system; that’s the one I use to go grocery shopping every week.  I have a standing ride to and from the store every week, so I don’t have to have someone call in each time.  They pick up and drop off my staff and I right in my apartment driveway.  It works okay.  Again, timing is an issue.  It has improved recently, but there have been times where we’ve waited well over an hour for a scheduled ride.  This wouldn’t be a big deal except that I only have staff for a certain amount of time.  I also wish there was some way that I could setup rides and ride the cab independently.  Currently, the only way to schedule a ride is over the phone.  Eventually, with technology advancing, I’m hoping that will change.  They also only take exact cash from people like me (I’m not on the MCO so I don’t get ride tickets).  I’m physically unable to hand the driver money, and I don’t feel comfortable having them root through my stuff to get it.  I wish that they had some sort of a pass or something I could buy.  Maybe in time they will.

Cabs are affordable for in-city daytime trips; however, if you want to leave the city limits or go somewhere outside of normal business hours, the prices skyrocket!  I live less than 40 miles from my parents, and if I wanted to take a cab to their house, it’d cost me over $250 one way!  I think that’s insane!  For now, thankfully, my parents are able to cart me around to most of the events I want to go to.

Relying on others for transportation definitely puts limits on a person’s life.  Not being able to go where and when you want can be very frustrating.  Self-driving vehicles are becoming more and more advanced.  I don’t know if it’ll be in my lifetime, but someday there will be self-driving accessible vehicles widely available (and affordable).  All a person will have to do is program where he/she wants to go using a phone or computer and then the vehicle will automatically go there.  How incredibly amazing will that be?  It’s hard to even fathom, but it will be life changing for many of us with disabilities.  I can only hope I see that day come! 

***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.