News

• National Family Caregiver Strategy
• Charting the LifeCourse Framework 
• National Center on Advancing Person-Centered Practices and Systems (NCAPPS)
• No Wrong Door Systems
• Bridging the Aging and Disabilities Networks
• Lifespan Respite Care Program
• I/DD Counts
• National Family Caregiver Support Program

Self-Determination Network News:

June 2023

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

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.

This month, we shined the spotlight on Jenny. After a tragic accident changed her life, this amazing lady made the decision to be a person who aspires to live life to the fullest. She has committed her life to raising awareness for people living with paralysis and neurological disorders. Check out this month's Member Spotlight to get to know Jenny.   

Who should we shine the spotlight on next?

Stacy’s Journal

Check out the Latest Videos!

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.

Check out the newest videos on the channel:

• Catching up with Ben
• What does LTGBQ+ mean?

We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).

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

• Wheelchair Elevation:  The Centers for Medicare and Medicaid Services recently announced that Medicare will now cover seat elevation devices for power wheelchairs. Learn more about this decision.
• Health Data Report: Reliable health data is important to supporting people with intellectual and developmental disabilities. Being counted is a health equity and civil rights issue. Although data collection about people with disabilities generally has improved in recent decades, there is still not enough information on how many people with I/DD live in the U.S., how healthy they are, and what things affect their health. Take a look at the report that the Administration for Community Living put together from a summit they put together in 2022 focused on health equity, remaining gaps, and priorities for the future.
• The Wait for Services: More than half a million Americans with intellectual and developmental disabilities are currently waiting for government funding for long-term care in their homes. Find out what some states are doing to clear waitlists.
• Advocates Advocate for Significant Pay Increases for Caregivers: It's no secret that Wisconsin advocates for people with disabilities and the elderly have been tiredlessly advocating for better pay for caregivers.  Learn what advocates are asking for in the state budget.
• Inclusive Stock Photos: Generally, stock photos often don't include people with disabilities. Read about how the Consumer Product Safety Commission is working to change that.
• Public Comment Needed on Diagnostic Equipment: Medical diagnostic care is essential to everyone, including people with disabilities, and often requires people to transfer onto diagnostic equipment. The U.S. Access Board has issued a notice of proposed rulemaking on standards for accessible medical diagnostic equipment. Public comments are due July 24th.
• Project SEARCH: Project SEARCH provides vocational training for people with disabilities. Learn about how the program helps high school students transition into the workforce.
• Google Maps are More Accessible: With a minor change, Google is making it more obvious to users whether businesses and other public places are accessible to people with disabilities.  Find out what small change made this possible.
• WisCaregiver Connection Workforce Platform: In partnership with UW-Green Bay, the Wisconsin Department of Heath Services have developed a training program to help 10,000 caregivers become certified direct care professionals. They also have developed a new workforce platform that will connect employers and job seekers. Find out more about these new programs.
• Protype of Wheelchair Seat on Planes: Delta has introduced a prototype of a new seat that would allow airlines to let passengers to stay in their wheelchairs in the cabin. Learn more about the design.
   

Upcoming Events 

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

• Webinar: Addressing Sexual Assault Against People With Disabilities: June 14th, 2:30p.m. to 4p.m., Online
• Webinar: Adaptive Ballroom Dancing: June 15th, 1p.m. 2:30p.m., Online
• Webinar: Peer & Family Support Program: June 15th, 2p.m. to 3:30p.m., Online
• Webinar: Accessible Transient Lodging: July 6th, 1:30p.m. 3p.m., Online
• Webinar: Easy Read Icons: July 10th, 3p.m. to 4p.m., Online
• Webinar: Basic Formatting: July 31st, 3p.m. to 4p.m., p.m., Online

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.

Do you like the steering wheel up or down? Do you prefer the rearview mirror tilted to the left or right? Do you like your showers warmer or cooler? Do you tie your shoes loose or tight? Do you have a certain way you like your pillow at night? There are thousands of things that people adjust to their personal preference. Most of the time, people automatically make these minor adjustments without even thinking about it. People do these things to make life easier or more comfortable. Obviously, every person has different preferences for everything. That’s what makes us unique individuals. People with disabilities are no different. We have preferences about how we like everything just like everyone else. In fact, many times, we have unique preferences just based on functionality.

A few weeks ago, my sweet cousin went to my class reunion with me as my date/caregiver. She’s a speech therapist and has worked with many people with varying abilities. She has helped feed me at family gatherings before and obviously knows how I communicate. She had never been with me solo at an event with me, though. As my mom was helping me get ready, she and I were making a mental note of things that we should explain to my cousin before we go. These things wouldn’t be brought up in normal conversation with anyone, but these seemingly miniscule things make my life so much easier. We probably bombarded my poor cousin, but she did a fantastic job of making sure she did everything right. Those small details made things so much easier and it was a really fun night!

What are the small details I’m talking about? To most people, these won’t make any sense, but, again, personal preferences are what make life enjoyable.  For starters, my left side of my body has more control than the right. For whatever reason, it’s so much easier if people sit or stand on my left side to help me eat or drink. When people sit on my right side, because of the way I sit, it’s much more difficult to turn my head and maneuver my body to be able to eat. My right arm also tends to be much more spastic, so, often, my arm accidentally hits the person. On more than one occasion, I accidentally hit food or drink out of someone’s hands. I wish I’d had the confidence to speak up about this when I was younger because it probably would have made things a lot easier. It wasn’t until a few years ago that I started asking people to please sit on my left side. Chalk it up to getting older, I guess.

Another really unique quirk I constantly find myself asking people who help me to do is to move my cell phone like a half inch up on the mount on my wheelchair. Again, it’s hard to explain, but my cell phone mount is right below my joystick on my chair, and the top of my phone needs to be up against the bottom of the joystick. It leaves a half inch of the mount showing. That half inch makes a huge difference for my access. If someone puts it lower, I have a really hard time accessing it. Whenever we train new caregivers, I make sure to have the veteran worker explain it to the trainee. Again, people probably think that I’m crazy for making a production about a half inch, but, in my world, it makes a huge difference.

There are multiple other small quirks I have to make life easier. I need my shoes tied extremely tight otherwise I will kick them off. When I get in bed at night, my head has to be touching the headboard in order to make sure that I can reach my phone and door opener. When workers make my lunch, they have to leave the zip lock bags open because I’m not able to open them. The straw in my water bottle has to be pointing a specific way so I can reach it. Seemingly mundane things like these are what help keep me as independent as possible.

I’ve discussed this a little bit in previous entries, but food is another example of when personal preference comes into play. Obviously, there is the basic like or dislike of individual foods, but, beyond that, there are some common preferences among many people who have cerebral palsy. For whatever reason, certain textures of food really bother some of us. A lot foods that have certain filling tend to bother many people. For example, yogurt and pies absolutely gross me out. When I try to eat something like that, my gag reflex (again, common among people who have cerebral palsy) kicks in and I almost lose my cookies. Yet, I can eat ice cream (I often have the debate with people—yogurt is not the same texture as ice cream) and some puddings. Some people who have cp need their food extremely hot. Another thing we’ve recently noticed is that a lot of people with different abilities tend to prefer to eat one food at a time whether than switching between multiple foods. I don’t know if there is any research on this, but some of us think it’s easier for our palates to adjust to one texture at a time whether than switching between different textures. Again, a small, but important preference.

Everyone has small quirks that they do to be comfortable. Most of the time, people don’t even realize that they have them, but, when you rely on others for physical assistance, those quirks need to be communicated. Sometimes, people may think you’re overly particular, but that’s ok. Those quirks often allow you to be as independent as possible. I have a ton of quirks that are truly based on functionality. I continue to learn small quirks that makes things easier for me. They make a world of difference!

***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.

A prototype of the new seat debuted this week at the Aircraft Interiors Expo, an annual gathering of airline leaders and suppliers in Hamburg, Germany. The new seat allows airlines to maintain the design of their aircraft cabin while providing access to headrest, center console tray tables and cocktail table that adjust to serve passengers with wheelchairs in place. It also offers passengers with disabilities an easier time getting on and off airplanes.

Read more

Meet Jenny. After a tragic accident changed her life, this amazing lady made the decision to be a person who aspires to live life to the fullest. She has committed her life to raising awareness for people living with paralysis and neurological disorders. The Fashion Show she started promotes highlighting the importance of medical research, wheelchair accessibility and inclusion within the community by breaking down barriers and changing the stereotypes society has about wheelchair users. It has raised hundreds of thousands of dollars for medical research. She encourages people to follow their dreams. We’re so fortunate to have her as a member of the Network!

What's your story?  Tell us a little bit about yourself.

On March 16, 1997, Jenny was a victim in a tragic drunk driving accident, leaving her paralyzed from the chest down. At age 24, she was lost, living life wondering why she survived that horrific day and what was her purpose in life. “The independence, livelihood, career and dignity I once took for granted were all stripped away. I found myself living a life surrounded by physical limitations,” she explains. As she chose to be an individual who aspires to live life to the fullest, with the same freedoms as the rest of the world, she found it to be even more challenging. Since that time, she committed her life to raising awareness for individuals suffering from paralysis and neurological disorders.

In 2001, Jenny reigned as Miss Wheelchair Wisconsin which in turn jumpstarted her career as a Motivational Speaker. Over the years, she shares that she has been blessed with the opportunity to share my personal testimony and experience with a countless number of schools, colleges, universities, churches and correctional institutions. Highlighting topics such as the consequences of reckless driving, importance of medical research and overcoming adversity, just to name a few.

Jenny tells us that it had been her dream to organize and direct a fashion show and community awareness event completely comprised of models in wheelchairs to help raise money for medical research such as, spinal cord injuries and other neurological disorders. She decided to propose this idea to a few key friends that she knew could help her vision come alive on the runway such as, her now good friend, Bryon Riesch. Bryon was in a devastating accident that left him paralyzed from the chest down on April 25, 1998. His friends and family helped establish the Bryon Riesch Paralysis Foundation (BRPF) to assist others faced with a similar situation.

After his injury, Jenny explains that they were introduced in hopes that they’d become a good support system for one another. And they did! It was clear that their friendship was going to last a long time. Hence, “This is How We Roll" was created. A Fashion Show, Fundraiser and Community Awareness Event highlighting the importance of medical research, wheelchair accessibility and inclusion within the community by breaking down barriers and changing the stereotypes society has about wheelchair users. It also provides each model with a life changing experience by promoting positivity, self-worth and life skills. Models include a diverse group, ranging from teachers, nurses, lawyers, school children and even pageant titleholders. Check out 2023 Fashion Show highlights by going to https://vimeo.com/826538529.

Jenny goes onto explain that the Fashion Show is a perfect example of how communities and people working together can do great things. Since its fruition, they have introduced over 300 remarkable models (men, women, and children of all ages), representing the Midwest, to the runway. All wheelchair users. All “Rolling the Runway for Research". To date, they have raised over $217,000.00 for medical research and their fight against Paralysis!

For more information on how you can get involved with the Fashion Show contact Jenny at addisjenny@yahoo.com or 715-802-3456.

Learn more about the Bryon Riesch Paralysis Foundation go to www.brpf.org.

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

Jenny has been enrolled in IRIS since 2008 (I Respect, I Self-Direct) which is a state program designed for disabled individuals like myself who are able to direct their own services and support. She explains that it allows her to make her own decisions, including determining her daily activities and the types of support or assistance she need to meet her long-term care needs under an established budget. Individuals choose where they want to live and who is caring for them. “I live in a remote area so hiring has always been challenging but now with the caregiver crisis and the lack of people working has hit my life hard. I keep plugging along though and don’t give up,” she says.

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

For Jenny, it’s exciting to see firsthand individuals with disabilities living life. “I’m inspired every year to see these amazing models overcoming adversity whether they are a student, career driven, a parent, athletic or a state titleholder. They are looking beyond their disabilities and living fulfilled lives,” she tells us. It has confirmed why events like the fashion show and organizations like the BRPF are so important in Wisconsin.

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

Jenny encourages people to follow their dreams. She explains that if she hadn’t pursued her vision and her dream, the fashion show, that offers so much hope to so many deserving individuals, would not exist. “We need to keep our hope and faith first and foremost,” she says.

Two of her favorite Bible verses that she lives by are Matthew 11:28-29 and Luke 17:6

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”

God has reminded me that I am here for a reason and a purpose. All I need is faith the size of the smallest seed on this earth – a mustard seed!

“He replied, “If you have faith as small as a mustard seed, you can say to this mulberry tree, ‘Be uprooted and planted in the sea,’ and it will obey you.”

What are some of your hobbies?

In Jenny’s free time, she enjoys spending it outdoors adaptive waterskiing, kayaking, hiking and spending time with family, friends and her puppy LuLu (service dog in training).  

***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.

Advocates for the elderly and people with disabilities are looking to the state budget now taking shape in the Legislature’s Joint Finance Committee to boost pay for personal care workers in Wisconsin in hopes of alleviating a chronic shortage that has stranded many people and families needing care. There are other obstacles besides wages, however. Many care workers don’t have health care coverage or paid time off for illness or vacation.

Read more

With a minor change, Google is making it more obvious to users whether businesses and other public places are accessible to people with disabilities.  Google Maps now displays a wheelchair icon by default on a location’s entry if the place has a wheelchair-accessible entrance. Previously, this information was only visible to users who opted into a feature called Accessible Places.

Read more

Project SEARCH provides vocational training for people with disabilities. The program works to transition high school students into the workforce. Participants learn things such as soft skills and workplace etiquette. Upon completion of the program, participants are on as permanent employees of the specific site where they interned.

Read more