News
June 2017
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2017 Disability Pride Fest
The 5th annual Disability Pride Festival will be held on Saturday July 29th from 12p.m. to 5p.m. at Tenney Park in Madison, near where the Yahara River empties into Lake Mendota. Each year, the festival brings together artists, performers, advocates, and organizations to celebrate the contributions made by people with disabilities to the local community. Well-known local talent such as Tara Ayres, Tani Diakite and the Afrofunkstars, First Wave performers Lewis Elder, and others have graced the stage in previous years. This year, Gaelynn Lea, winner of NPR’s Tiny Desk Competition, is coming back. New groups of performers will be joining the fun as well. Visit the website for more information!
Changes to Medicaid and the AHCA
Members of the U.S. Senate are working behind closed doors on their own version of American Health Care Act (AHCA). The U.S. Senate is preparing to vote on the AHCA within the next two weeks. 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.
There have been no public hearings held on these major proposed changes. 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.
In addition, the Senate is also debating things such as even larger cuts to Medicaid, weakening protections for people with disabilities and other pre-existing conditions by allowing states to charge them more for health care, and allowing states to stop providing Essential Health Benefits (rehabilitative services and devices, mental health services, prescription drug coverage, etc...).
There is going to be a Community Conversation About Changes to Medicaid in Wisconsin held in Oshkosh on Thursday evening of this week. We encourage people to attend and/or contact the Wisconsin Senators to ask questions and share their thoughts about this bill.
The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better. For June, we shine the spotlight on Ann. This enthusiastic IRIS Consultant just won an award for Customer Experience/Living the Brand. She encourages people to be creative and to dare to dream. She enjoys watching people light up when they start discovering life’s possibilities. Stop by this month's Member Spotlight to get to know Ann.
Who should we shine the Spotlight on next?
Ever want just one day where everything goes right? In this month's entry, Stacy shares how she was bound and determined to make that day happen, but, sometimes, life throws you unexpected curves. We encourage you to share your experiences as well.
Take five minutes to check out what's happening on the Self-Determination Network:
- Inclusive Design: Making sure that websites and apps are accessible to people with disabilities has become a big emphasis. Learn the difference between "accessibility" and "usability" when it comes to websites and apps, and what things developers have to think about when creating them.
- Long-Term Care Survey: The Waisman Center is conducting a WI Adult Long Term Care Survey. Take the survey now.
- Accessibility of Fitness Centers: A recent study found that people with physical disabilities have limited opportunities to participate in physical activity. Read about the factors causing this.
- Health Care Kit: The Wisconsin Board for People with Developmental Disabilities has developed a Self-directed Health Care Kit designed to help individuals with developmental and intellectual disabilities advocate for their own health care. Check it out.
- Disability Statistics: A report recently came out about disability statistics in the US. Take a look at the statistics for Wisconsin.
- SPARKS Grants: Applications are now being accepted for SPARKS Grants which are mini-grants of $500 to $3,000 are designed to help community groups of people with disabilities and family members make a change in their community. Apply today!
- Partners in Policymaking: Partners in Policymaking is a leadership program for self-advocates, siblings, and parents of children birth to 21 meets six times in the coming year from Friday at noon to Saturday afternoon in Madison. Learn more and apply today!
Here's a sample of upcoming events listed on the Self-Determination Network:
- Adaptive Bike Station Launch: June 21st, 4p.m. to 5p.m., Hart Park, Wauwatosa WI
- Community Conversation About Changes to Medicaid in Wisconsin: June 22nd, 6p.m. to 7:30p.m., Oshkosh West High School, Oshkosh WI
- Adaptive Water Skiing: June 28th, 10a.m. to 4p.m., Brittingham Park, Madison WI
- Wisconsin Youth Leadership Forum: July 9th to 14th, Edgewood College, Madison, WI
- Adaptive Water Skiing: July 12th, 10a.m. to 4p.m., Brittingham Park, Madison 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
- 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: 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
- 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.
Ever want just one day where everything just goes perfect? I think everybody does. For me, that day was my sister’s wedding day. She probably didn’t realize this, but I had been thinking about the day for years—even before she met her now husband. I knew that it was likely that she’d fall in love and get married before me. Of course, it wasn’t easy for me to emotionally accept, but I had it in my mind for years that I was going to do everything in my power to make her wedding day all about her. I was determined to make it the perfect day for her.
The wedding planning started last summer. They picked a church and venue in the Madison area where they live. Of course, my sister made sure everything was wheelchair accessible. We spent a day in August shopping for her wedding dress with his sister and mom. Admittedly, that wasn’t the easiest thing for me to do. Watching my little sister try on wedding dresses with our mom and her future mother-in-law and sister-in-law brought many thoughts to my mind. I wondered if I’d ever get the chance to do that. However, I tried the best I could to put my emotions aside, and be there for my sister.
Last fall, she asked me to be her maid of honor. I kind of figured I’d be in the wedding (because I’m her only sister and we’re pretty close), but I wasn’t sure I would be the maid of honor because physically I wouldn’t be able to help her much on her special day. True to her fashion, she didn’t let my limitations make that determination though. I was her sister; therefore, I was going to be the maid of honor in her wedding.
Since I do some freelance graphic design, as part of their wedding gift, I designed their save-the-date cards for them. As maid of honor, you usually throw the bride a wedding shower. I obviously couldn’t do that physically myself, so my aunt and I organized one at my parents’ house. My aunt took care of all of the food, and I was in charge of the invitations, decorations, and games. My mom and I also went to a shower for Steph hosted by his sister. Again, those selfish thoughts crept into my head while attending the showers, but I did my best to push them aside.
Originally, for the wedding weekend, I had one of my personal care assistants setup to come to Madison to help me. I thought that it’d be perfect—that way my parents wouldn’t have to worry about doing my cares; they could have one weekend where they focused solely on my sister. That was truly my hope. Unfortunately, that didn’t happen. My care worker backed out about two months before the wedding, and I wasn’t able to find anybody else for the entire weekend. Doing what my family does best, we adapted. I found a friend who lived in the area to feed me at the reception, and my parents would do the rest of my cares that weekend.
The festivities started the first Friday in June. My parents and I actually went down on Thursday to start getting things setup. We had some time to explore Madison and had some great family time. Friday, before the rehearsal, the ladies went to the Capitol and did State Street. I loved it because I had never been down there before. The other two bridesmaids were so nice and accepting. It was a great time. The rehearsal and rehearsal dinner were very nice. I was able to fight off my mind from wandering pretty well, and I was all set for Saturday.
Saturday morning, my mom and I got our hair done first, and then we waited while the others got their hair done. I had gotten dressed early that morning because it was just easier. The other girls got dressed at the nature center where the pictures were taken. Everything was going great until we started pictures outside. Very suddenly I knew something wasn’t right. I started having severe stomach pain and was very light-headed. My sister knew something was wrong right away. They brought me back inside and laid me down. They called my parents to come get me. They took me to the church where I laid down for a half hour before the ceremony. By this point, Steph was ready to cancel the whole thing and rush me to the hospital. There was no way I was going to let that happen. It started five minutes late and they skipped a song to shorten it, but the ceremony went on. I was able to hold it together through it. All I could do was keep apologizing to my sister. At the reception, I spent most of the time in the back room because I was so in much pain. I’d try to go out and be social for about ten minutes at a time, but then the pain was just too bad that I had to go back and tilt back in my chair. My poor parents spent most of the night helping me instead of enjoying the festivities. I was able to give my speech using my iPad which was very important to me. Then, there was an hour or so where I felt great. I was able to dance and enjoy the family who was there, but, unfortunately, the pain returned.
Finally, around 9:30, we decided I couldn’t wait any longer—I needed to go in. My poor sister was calling hospitals to see if they accepted my insurance on her wedding night. My parents and I didn’t even say goodbye to people. We just ran out. Steph helped load me into the van and my parents drove me to UW Madison Hospital. We spent 15 hours in the emergency room and I was eventually admitted for a night. It ended up being another gastrointestinal issue likely due to having cerebral palsy.
Words will never be able to describe how terrible I feel that this happened on my sister’s wedding day. I feel like I was such a burden. Even though, people keep telling me it wasn’t my fault, I will never be able to forgive myself. It was supposed to her big day and I will always feel like I ruined it. I keep apologizing to Steph and my parents. They keep reminding that I did all the important parts, but I think I’ll always carry guilt about it. I think I even feel worse about it because I was trying so hard to make the day perfect for her.
I don’t ask “why me” very often, but, admittedly, under these circumstances, I certainly did. Life just isn’t fair sometimes. I’m beyond blessed to have great parents, a great sister, and now a great brother-in-law who will never blame me for this fiasco. I guess that defines the true meaning of family, doesn’t it?
***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
Wisconsin Board for People with Developmental Disabilities Partners in Policymaking
By SD Network, 2017-06-14
The applications for Partners in Policymaking are now open, and the application package is available at: http://wi-bpdd.org/index.php/partners-in-policymaking/ This leadership program for self-advocates, siblings, and parents of children birth to 21 meets six times in the coming year from Friday at noon to Saturday afternoon in Madison. You will learn about all the public programs people with disabilities use, and how you can impact programs and policies to improve the lives of people with disabilities and their families statewide. All costs of the training, overnights, and meals are provided through BPDD funding. You must commit to the Core Values of community inclusion and integration listed in the application, and commit to participate in all 6 weekends.
SPARKS mini-grants of $500 to $3,000 are designed to help community groups of people with disabilities and family members make a change in their community. People with disabilities must be at the center of the project and participate at all levels. This year’s SPARKS mini-grants have a priority on transportation ideas/strategies. Priority will be given to under-served and under-represented groups. The mini-grant also includes a full day of support and technical assistance (Sept. 27, 2017) and ongoing support during the year of the grant. Applications are available at: http://wi-bpdd.org/wp-content/uploads/2016/12/2017-18-SPARKS-Grant-Application-Revised.pdf
This is a very interesting article about disability statistics in the US. It has disability statistics catagorized by age, state, county, and city. It's interesting to see the statistics for Wisconsin.
The Wisconsin Board for People with Developmental Disabilities has developed a Self-directed Health Care Kit designed to help individuals with developmental and intellectual disabilities (I/DD) advocate for their own health care and support clear communication between the individual and their health care practitioners. The kit includes a set of forms for tracking health care concerns and interventions.
More than 1,500 people responded to Survival Coalition's survey asking how Wisconsin's disability community uses our state's more than 20 Medicaid programs, and how their lives would be impacted if Medicaid changes (e.g. funding is cut and per capita caps are imposed as passed in the House version of the AHCA). Here is a sampling of those statewide results, organized by Congressional district, along with information about Medicaid and Medicaid funding in Wisconsin.
How are you involved with self-determination? Why did you join the SD Network?
Ann has been an IRIS Consultant with TMG/Magellan for five years. She joined the Network to stay informed about self-direction, work strategies for people who self-direct, and to hear the latest about concerns and legislation.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Ann explains that she loves to see the light in the eyes of people when they start to think of life’s possibilities and how the IRIS program can partner with them to enable them to have the life that they want.
What tip or resource would you like to share with people who want to be more self-determined?
Ann encourages people to “dare to dream.” She explains that people should be creative and brainstorm with their IRIS consultant. “ASK! Don’t assume that the thing you need to achieve is not covered by IRIS. Partner with your consultant to make it happen. You are in the driver’s seat of your life…go where you want to go, do what you want to do and be who you want to be,” she exclaims! Her personal theme is, “there is no such thing as Impossible.”
What message would you like to share with the members of the SD Network?
“Foundational to Self-Direction is Problem Solving from the consumer up,” Ann says. Ann explains that each organization needs a consumer advisory committee to identify what is not working well and to brainstorm creative remedies. People want their programs and services to be sustainable, flexible, and effective. They know what needs to be fixed. Get them together and develop creative solutions together.
***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.
DISABILITY AND HEALTH JOURNAL: Fitness facilities still lack accessibility for people with disabilities
By SD Network, 2017-06-08
According to a recent study published in the Disability Health Journal, individuals with physical and mobility disabilities have limited opportunities to participate in physical activity due to barriers in the built environment, the lack of knowledge of fitness staff, and the costs associated with membership fees at recreation facilities. Previously, only a handful of studies examined the accessibility of fitness facilities for individuals with disabilities. The results of this latest study indicated that none of the facilities examined were fully compliant with the Americans with Disabilities Act (ADA).
Of the fitness facilities included in the study, the majority received a low accessibility score in all sections other than programs, parking, and water fountains. The study found similar results in both urban and suburban facilities, regardless of whether they were built after the passage of the ADA. Further research is needed to plan how to remove barriers in fitness facilities.
The Waisman Center is conducting a WI Adult Long Term Care Survey, The survey is now available for individuals or family members to complete. People who receive adult long-term care support were mailed letters by WI DHS.