News

A new wheelchair has been invented that is lightweight, waterproof, and does not require batteries. The PneuChair, created by the University of Pittsburgh Human Engineering Research Laboratories, debuted this month and is a promising product. While traditional power chairs cannot handle wet conditions and take hours to charge, PneuChair is completely waterproof and is charged in minutes using an air compressor. The PneuChair can travel three miles before needing to be recharged. Additionally, the PneuChair weighs only 80 pounds and can travel up to five miles per hour.

Although the PneuChair is not yet commercially available, it is currently assisting the patrons of Morgan's Wonder World, an accessible theme and splash park in San Antonio. Production is scheduled to begin by the end of the year. The designer sees a future for the PneuChair in stores, parks, airports, and nursing homes, and as a primary wheelchair for some users. After mass production, the designer believes the PneuChair could change the lives of many people with disabilities around the world.

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Whether it’s a fancy restaurant or a fast food restaurant, going out to eat is a common activity for most people.  Eating is a necessity of human survival, but it’s also a very social activity.  No matter what kind of event people attend, it’s very common for eating and drinking to be involved. 

For people with some disabilities, eating can pose a variety of challenges.  Depending on the circumstances, some people cannot eat orally and have to be tube fed.   Fortunately, I’m able to eat orally.  In fact, my friends and family will say that I love to eat!  People are surprised how much I eat because I don’t gain much weight.  The reason why is because my body never stops moving unless I’m sleeping.  I do need assistance eating though.  I’m not able to prepare meals or feed myself.

Needing assistance eating has its challenges as well.   One of them being that unlike most people I can’t just grab a snack whenever I want.  When I have care shifts, I need to make sure I get enough to eat and drink to last me until the next attendant comes. 

There are a few finger foods I can eat on my own, but because of my poor fine motor skills, I often drop things on either myself or on the floor.  Sometimes, I can handle things such as string cheese, beef jerky sticks, and hard candy myself.  Though, again, those things have to be unwrapped and placed where I can easily grab them. Recently, because of staffing issues, there have been a few times where I’ve fed myself breakfast.  The meal consisted of string cheese, fruit snacks, and pretzels.  Not the most nutritious breakfast, but those are things that I kind of eat myself.  Due to an aide calling in sick late the night before and nobody picking up the morning shift (I was stubborn and didn’t want my parents to come up to help), I slept in my wheelchair one night.  The night before I had my night aide put finger food on my table for the morning, but I also had her put my morning pills on the table.  I also had her duct tape a cup of water to the table.  Now, people have to understand that I take five small pills, and having pretty limited fine motor ability, picking up these small pills and getting them into my mouth takes talent.  Somehow, that morning, I was able to get all five pills in my mouth without dropping a single one!  I think it was luck more than anything; I probably couldn’t do it again. 

Because cerebral palsy affects all of my muscles in my entire body, muscles in my mouth are affected too.  Sometimes, I uncontrollably roll food off my tongue.  Food often gets on my clothes.  When I’m at home, I usually wear a towel on my shirt when I eat or drink anything.  When I’m out to at a restaurant or in public, I try using napkins instead because it’s more acceptable. 

Having to be fed has some psychological effects as well.  My friends and family don’t have a problem feeding me in public though.  Until a few years ago, my friends and I would go out to eat all the time and they’d feed me.  Now, since most of my friends have significant others and families, it’s a little different.  I usually have my mom come to feed me because it’s just different.  I’m sure they would have no problem still feeding me, but I feel weird having them assist me when they have their own children to worry about.  It’s just one of those awkward situations.

When I go out to eat, people do stare.  It does make me self-conscious, but I try to not let it bug me.  It’s just one of those things that I kind of ignore.  Obviously, some foods are messier to eat than others.  Normally, I don’t take that into consideration when choosing what I want to eat simply because I figure I should be able to eat what I want.

 Healthwise, up until a few years ago, I had no food restrictions.  When I started having serious gastrointestinal Issues a few years ago, I had to adjust my diet.  I have acid reflux (which is common among people with cp), so I have to avoid acidic foods.  I also don’t eat fast food anymore because we It doesn’t sit well with me.  Certain textures of food do mess with my gag reflux.  For years, I thought it was just something with me, but I’ve learned others with CP have the same problem.  Things with certain textures, such as pies, yogurt, and filled donuts, I can’t eat because those kind of things make my gag reflux bad.

Many people don’t even think twice about grabbing a snack from the fridge.   For many people with disabilities and health conditions, mealtime isn’t always an easy time, but since eating is an essential part of life, we do what we have to! 

***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.

Missouri recently launched its program for ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their  benefits).  In Missouri, the program is known as "MO ABLE." Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life.  This program is only available to Missouri residents.

Read about Missouri's program

An interesting court case has recently surfaced about how the McDonald's website and mobile app violate the Americans with Disabilities Act (ADA).  A man from Chicago has filed a lawsuit against McDonald's claiming they have discriminated against him  because they have not made their website and mobile app accessible for people who have visual impairments.  The website and app are not compatible with screen readers. The plaintiff is asking the court to order McDonald's to work with a consultant to redesign the resources to be accessible for those who use screen readers.  He is also seeking compensatory damages.  

Read more 

Registration is Now Open for the

Aging Empowerment Conference 2017:
Living a Self-Determined Life

June 6th--Conference
June 7th--Self-Determination Summit

Glacier Canyon Lodge Conference Center
at the Wilderness Resort
Wisconsin Dells, WI

Join InControl Wisconsin and other sponsors and explore self-determination and empowerment in aging. We will examine new approaches to aging that support autonomy and choice.

 Who should attend?

The conference attracts a diverse statewide audience that includes older adults, caregivers, and professionals.

 Please see the brochure for registration information or click here to register

Featured Programming:

Keynote Address -  Powerful Aging: Changing the Stories We Tell
                                  Helen Marks Dicks, Associate State Director State Advocacy, AARP Wisconsin.
Self-Determination Summit -  Learn how all of the current health care reform proposals will affect seniors, and how you can become a more effective advocate.

Workshop Programming - Highlights include:

Emotional Intelligence: The New Success Factor
Empowering Older Adults to Maximize Their Medicare Benefit
#ShePersisted: Getting What You Want
Consumer Satisfaction: The Wisconsin Veteran Directed Services Program

Hotel Reservations
Reserve a room at conference rates by calling 1-800-867-9453 by May 19th. Ask the reservation agent to book your room under the Aging Empowerment 2017 block. Reserve early before rooms are sold out!  

Sponsor and Exhibitor Opportunities are still available. Join us!

Conference registration closes June 1st!

 Questions? Contact Peggy Rynearson at 608/446-4206 or prynearson@gmail.com

The process for accessing personal care services through Medicaid is changing for those who are enrolled in “fee for services” Medicaid. This impacts most children and some adults including:

• BadgerCare Plus members
• Wisconsin Medicaid members
• Include, Respect, I Self-Direct (IRIS) members who do not self-direct their personal care services
• Members enrolled in Wraparound Milwaukee or Children Come First programs

The change impacts the assessment process to determine eligibility and the numbers of hours of support a member is eligible to receive. DHS recently issued a Forward health memo called the  New Personal Care Independent Assessment and Prior Authorization Policy describing the change. Attached is the fact sheet that was sent to members starting Monday April 17th. Implementation will start June 1st.

	New Approval Process for Personal Care Services
	PCIAfactsheet4-2017.pdf, 70KB ∞

 Self-Determination Network News: 

April 2017

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

Let Your Voice Be Heard!

The State legislature’s Joint Finance Committee has finished most of the public hearings on the 2017-2019 state budget.  There are three more public hearings remaining.  The proposed budget includes small increases for some programs such as specialized transportation and the Medicaid Personal Care program.  These increases do not reflect the actual need and are not guaranteed to stay in the budget.  This is your opportunity to let members of the JFC know what you like and what you don’t like! 

Aging Advocacy Day

Are you interested in issues affecting older adults? You’re invited to join members of the Wisconsin Aging Advocacy Network (WAAN) and others to help educate state legislators about issues affecting Wisconsin’s aging population.

On Wednesday May 17th, citizens from around the state will gather in Madison for a day of advocacy training and meetings with legislators. No experience is necessary; you’ll get the training and support you need before meeting with state lawmakers. Following the training, join others from your assembly and senate district to provide information and share personal stories with your legislators to help them understand how specific legislative policies impact older constituents.  Registration closes May 1st. Learn more and register today!

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 April, we shine the spotlight on Kurt.   This avid water skier  is involved in a plethora of disability organizations. He believes self-determination is about lifestyle development and letting people be the best versions of themselves. Stop by this month's Member Spotlight to get to know Kurt.

Who should we shine the Spotlight on next?

 Stacy’s Journal

For this month's entry, Stacy talks about how having a physical disability impacts a person's fashion. We encourage you to share your experiences as well.

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

• Supporting Wellness Resource:  Here's a great resource about health and wellness activities for people who have disabilities. Check it out!
• Health and Transition Resource:  PACER's National Parent Center on Transition & Employment has a new section on their website focused on health and transition for students with disabilities.  Discover what information it has to offer.
• Neat Photo Exhibit:  A photographer did a neat project where she  took photos and interviewed people with disabilities about what they wish others understood about their condition.  Check out the photos.
• 'Special Needs' Controversy:  A group of celebrities are taking a stand against the term "special needs."  Learn about what they are did to demonstrate that everyone has the same needs.
• Caregiver Career Program:  In an effort to attract and retain more nursing home caregivers, Wisconsin is launching an innovative program called the Caregiver Career Program. Find out more about the program.
• New App:  A new dating app, Glimmer, is trying to create an inclusive space for online dating, particularly for people with disabilities.  Learn about this app.
• Interesting Court Case:  There is an interesting court case going on about how existing 911 services are inaccessible to people who have hearing impairments.  Read about the case.
• Accessible Kiosks:  New kiosks are available which translates customer's selections into sign language.  Find out how these kiosks work. 
• Impact of Care Worker Shortage:  The home care worker crisis isn't  just effecting people with disabilities who live independently in their own home or apartment; it's also effecting group homes and nursing homes.  Learn what many feel needs to be done to fix it.
• ABLE Act Improvements:  Earlier this month, a bi-partisan group of Members of Congress introduced a group of individual bills that would better the benefits provided through the ABLE Act.  Read about the proposed bills.  

 Upcoming Events                                    

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

• WI FACETS Self-Advocacy Workshop: Self-Advocate Spotlight:  April 26th, 6p.m. to 8p.m., WI FACETS, Milwaukee WI
• Action On The Square: Mental Health Advocacy Day:  May 4th, 10a.m. to 3p.m. State Capitol, Madison WI
• 2017 Circles Of Life Conference:  May 4th to 5th, Holiday Inn Hotel and Conference Center, Stevens Point WI
• 2017 National ADA Symposium: May 14th to 17th, Hyatt Regency O'Hare, Chicago IL
• Aging Advocacy Day:  May 17th, 10a.m. to 4p.m., State Capitol, Madison WI
• 2017 Aging Empowerment Conference: June 6th-7th, Glacier Canyon Lodge Conference Center at the Wilderness Resort, Wisconsin Dells WI
• Adaptive Water Skiing:  June 14th, 10a.m. to 4p.m., Brittingham Park, Madison WI
• Adaptive Water Skiing:  June 28th, 10a.m. to 4p.m., Brittingham Park, Madison WI
• US Wake Sports Festival:  August 15th to 16th,  Traxler Park, Janesville WI
• Wisconsin Youth Leadership Forum:  July 9th to 14th, Edgewood College, Madison, 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.

Earlier this month, a bi-partisan group of Members of Congress introduced a group of individual bills that would better the benefits provided through the ABLE Act.  The group of bills consists of the following three pieces of proposed legislation:

• The ABLE Age Adjustment Act (S. 817/HR 1874) would raise the age limit for ABLE accounts to age 46.
• The  ABLE Financial Planning Act (S. 816/HR 1897) would allow families to rollover savings in a 529 college savings plan into an ABLE account.
• The ABLE to Work Act (S. 818/HR 1896) would allow individuals and their families to save more money in an ABLE account if the beneficiary works and earns income.

Learn more about these proposed bills

The home care worker crisis isn't  just effecting people with disabilities who live independently in their own home or apartment; it's also effecting group homes and nursing homes.  The state budget has a 4% pay increase for care workers, but many feel that's not near enough.   People feel there  needs to be  a 15% increase to be competitive with other jobs.

Read more

For most women, fashion is important at least to some extent.  Whether it’s their wardrobe, hairstyle, jewelry, shoes, or another facet of beauty, ladies enjoy getting glammed up every once in a while.   Women with disabilities are no different.  We have the desire to look pretty too.  For those of us who have physical disabilities, looking fashionable (or the way we want) comes with many obstacles that most people never even think about.

Fortunately, I consider myself a pretty laid back girl in terms of fashion.  Unless I’m going out with family or friends, you’ll normally find me in jeans and a sweatshirt or sweats.  Those are the easiest kinds of outfits to wear.  When buying clothes, I have to be conscious of things that don’t even cross most people’s minds.   Things such as color, style, length, size, and cut all need more consideration when I buy clothes.

Since I’m in a wheelchair, I have to be very conscientious of how shirts and dresses are cut.  Because of how I sit, certain cuts are way too revealing.  Low cut shirts and strapless dresses don’t work for me. Certain styles of tops are really difficult to get into because my arms often don’t bend very easily.   When buying pants, I have to make sure they are not too long because otherwise I slip on them while transferring.  I also have to make sure that there aren’t too many bulky buttons or rhinestones by the waist of the pants because my seatbelt on my wheelchair presses on them and irritates my skin.  Length of dresses is something else I need to be aware of.  Since I sit most of the time, many dresses are often too short; on the other hand, I can’t wear floor length dresses either because they would get caught in the tires of my chair.  It’s a balancing act. 

Color of clothes—especially tops—is another thing that I need to be conscientious of.  Due to cerebral palsy, I drool.  Certain colors of shirts and dresses show drool more.   Of course, I can’t totally avoid wearing those colors, but I do make an effort not to wear them for special occasions.  In fact, a good example of this is when my sister first started looking at colors for bridesmaid dresses for her wedding, she asked for my opinion between two colors.  Of course I said it was up to her (and I’d make anything work), but I reminded her that one of the colors would show my drool less.  I don’t think it was just because of that, but she did end up choosing that color.

Shoes present another whole set of issues.  Most of the time, I wear tennis shoes because they’re the most comfortable and the easiest type of shoe to stand in.  It’s challenging to find even tennis shoes that work for me.  I need shoes that have good grip the bottom of them because otherwise I slide all over during transfers and can’t push myself in to my chair.  It’s getting harder and harder to find that have good grip.  I don’t wear orthotics anymore, but I did when I was younger.  When I wore those, I needed to wear high-tops tennis shoes with them. Finding high-top shoes for little girls was nearly impossible.  We often ended up buying boys shoes for me.  It’s very rare for me to wear anything other than tennis shoes.  Finding dress shoes for me isn’t easy either. I have to have something that either ties or has an adjustable strap otherwise it won’t stay on.   Unlike for most ladies, shoe shopping isn’t the most enjoyable thing for me. I’d love to be able to wear all of the cute shoes that are out there, but that’s just not a feasible option.

My wardrobe isn’t the only fashion item my disability effects. When choosing hairstyles, I have to think about what would be easy for my care workers to do and what would stay out of my face.  My family knows I’m an extremist when it comes to hairstyles.  I like it either very long or very short.  Due to my muscle movements, many hairdos tend to fall out.   When I’m growing it out, we try clipping it back several ways until it’s long enough to be in a ponytail.  Unfortunately, like most girls, I find growing it out to be a pain.  Between my body movements and hitting my head on the headrest of my chair, I feel like my hair is never really perfect, but I think every girl feels that way!

Things like makeup and jewelry present similar challenges.   I don’t wear makeup very often, but when I do, I have to have someone else apply it.  Again, with my uncontrollable muscle movements, this can be hard.  Eye shadow, blush, and a little mascara (on the top eyelashes only) are about all I ever wear.  I also only occasionally wear jewelry.   Necklaces and earrings are okay most of the time, but bracelets and rings can be hard to wear because my hands are always moving and bracelets and rings often get caught on my chair and keyboard.

Like I said, I don’t dress up very often.  Part of is due to my personality, but I think part of it has to do with my disability.  Would I dress up more often if I didn’t have limitations?  It’s very likely I would, but it’s also likely I’d have a completely different lifestyle if that were the case.  Fashion has never been a top priority in my life.  I always try to look presentable when I’m out in public; however, I have never been to obsess over fashion!

***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.