News

Home-based care will account for the majority of an estimated 1.2 million new jobs in the direct care workforce sector from now until 2030. That is expected to be the most new jobs for any occupation in the U.S. over that time period. A new report suggests that industry leaders will need to improve financial security and support systems in order to keep up with the growth. 

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Apply to be one of our May 2023 conference presenters! Parent, family members, professionals and others with knowledge to share are encouraged to complete an application!

Applications due OCTOBER 28

The planning committee welcomes those who are new to presenting at conferences or other public events! We can provide support and assistance and encourage parents and other family members to join us as conference presenters. If you’d like to present, but need some guidance on developing your proposal, please email Lynn at Family Voices – Lynn@fvofwi.org.

• PRESENTER APPLICATION – Please use the link to complete online form.
• PRESENTER APPLICATION (print version) – please use this form ONLY if you are not able to complete the online form above. Email your form to Lynn@fvofwi.org.
• INSTRUCTIONS – provides more details about presenting at the conference and expectations for presenters.

We recommend that presenters make their sessions highly interactive and allow time for questions and answers. Your audience will be parents, families and professionals with varying levels of understanding of presentation topics. Spanish interpreters will be available at some sessions. In addition, we will be live streaming many of the sessions for those who want to join the event virtually.

Past conference session topics have included:

• Advocacy and Family Leadership
• Community connections
• Education
• Early Intervention
• Family, Self-Care and Wellness
• Health Care, Nutrition
• Medicaid and Private Insurance
• Long-Term Supports and Services
• Transition After High School
• And many other topics!

This year, we are also looking for presentations that focus on planning for the future. This could be financial planning, legal planning, planning for a full, inclusive life in your community, or planning for the transition to adulthood.

If you have questions about submitting a proposal, please contact Lynn at Family Voices of WI at Lynn@fvofwi.org or 608-556-0375.

WisDOT has published the 2022 Americans with Disabilities Act (ADA) Transition Plan. There is a public comment period open through Friday, September 30 (approximately midnight, 11:59 a.m.). Your feedback is very important, and we encourage you to take the time to participate in this opportunity. Visit http://www.wisconsindot.gov/ada to find the plan, along with an overview video presentation and options to comment using the web, email or standard U.S. Mail.

WisTech, Wisconsin's Assistive Technology Act Program, reminds everyone that we have iPads (including a mini and an iTouch) available for short-term loans for 30 days. The iPads can be pre-loaded and customized with applications that a person may want to try out, at no cost to the individual. 

The program provides the opportunity for people with disabilities, their family members, and/or support network the ability to decide if an iPad with apps will meet their goals related to living, working, or learning independently.

To begin the process of loaning out an iPad,  please visit Wisconsin AT4ALL. After you create a free account, you can search for an iPad under the Department of Health Services (DHS) program. Once you add the iPad to your cart and click "check out," a request will automatically be sent to DHS Staff. You will then be contacted after receiving the request to gather a few more details and process the short-term loan. 

Wisconsin AT4ALL is a great way to learn about what other devices are available for loan and demonstration. An assistive technology inventory list can also be accessed through the WIAT4ALL website. This statewide inventory list includes devices that are free or for sale.

If you have specific questions please reach out to us via email.

After a federal judge ruled that people with disabilities could receive assistance returning their ballot, the Wisconsin Elections Commission issued guidance about how people can assist.  The person returning the ballot has to identify themself as an "agent".  Agents can't be the voter's employer, an agent of the employer, or an officer or agent of the voter's union.

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Wisconsin voters with disabilities recently breathed a sigh of relief when a US District Judge said that voters with disabilities can receive assistance returning their ballot despite a state Supreme Court ruling.  The judge said that the federal Voting Rights Act allows it.

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Meet Hannah. When this very determined lady isn’t working or volunteering in her community, you may find her doing a wide array of hobbies. Hannah has great family and friends who she loves spending time with. She’s even learning a new language in hopes of communicating better with her family in Iran. We’re so fortune to have her as a member of the Network!

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

Hannah is 25 years old and lives in Elm Grove. She shares that she has Down Syndrome.  “I am living my best life to the fullest,” she exclaims. She moved into her own apartment in January. She loves having her own space and doing the things she wants to do. She explains that her dad was from Iran in the Middle East and that she is Muslim. Unfortunately, her dad passed away in 2013, but she is managing her life the way she knows that he would have wanted her to. She has a mom and a sister whose name is Nahal. They have a dog named Millie. She explains that she loves her family because they are really close and have a lot of fun together. “We like to have fun and be silly sometimes,” she says.

Hannah works a Pick N Save in the floral and bakery departments. She works three days per week and loves it. She also enjoys volunteering. She has volunteered at the Milwaukee County Zoo where she fed the giraffes, and she has volunteered at the Humane Society as well. “I love volunteering,” she says. She is really active in her community and loves social outings. 

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

Hannah is very involved in the Down Syndrome Association in West Allis. She attends classes they offer virtually. One of her favorite classes was the Globe class where they learned about different countries. She tells us that they also went to theaters and helped with things like will call tickets and handed out programmed. She volunteers at the Association as well. “It’s my favorite place. Everyone is awesome,” she exclaims! 

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

Hannah shared a couple of exciting things with us. First, she wanted to tell us that she has a great group of friends that she loves spending time with. She’s been friends with her best friend since they were babies. They went to the same schools have a lot of fun together. One of the best memories she has is when she was prom queen her junior year of high school!

Another exciting thing happening for Hannah is that she is working with a tutor to learn a little bit of the Farsi language and the Iranian culture. By doing this, she is hoping to be able to communicate with her Persian family a little bit.  

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

Hannah suggests sharing your hopes and dreams with your family and friends so they can help you try to achieve them. She tells us that she has a lot of great family and friends who take time to learn about her dreams and help come up with ideas how to make them happen. She also does a vision board to help her sort them out. "Don't be nervous to share," she says. She's also in a family group that's made up of her friends who have disabilities and their families that talks about their goals and how to achieve them. She likes to plan, but she says that if you struggle with planning, find a good support person to help you. She encourages everyone not to get discouraged. " If I can do these things, so can you," she enthusiastically exclaims! 

What are some of your hobbies?

Hannah has a plethora of hobbies she enjoys doing. She likes to do all sorts of different crafts such as beading bracelets, looming baby hats with yarn and donating them, and diamond dotting (sticking diamond dots on pictures to make them sparkly) gifts for family and friends. She also likes to write - - especially poetry and affirmations. She writes newsletters for her family and friends. She also writes posts on social media sites like Facebook and Instagram. It helps her stay connected she explains. She also loves getting pictures with family and friends. “My family and friends are super important,” she says. Singing is another hobby she enjoys doing. She has taken voice lessons and loves to sing for fun. Cooking is yet another thing she likes to do—grilled cheese is her favorite food. She surely stays busy!   

 ***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.

Adjusting the steering wheel in a vehicle. Getting a dress or tuxedo fitted for a wedding you‘re in. Adjusting the height of an office chair. Lowering the rail on a baby crib. Reclining or straightening a seat in a car. Raising or lowering shelves in a closet. What do all these things have in common? They are adjusted to fit needs of an individual. People adjust things to meet their needs all the time. While most of the time, adjustments are so minor that people don’t even realize that they’re making the change, some adjustments can have more of an impact. For many people with physical disabilities, making adjustments is a major part of our lives.

As I’ve explained in many of my previous entries, durable medical equipment became part of my life at a very young age. From strollers, to wheelchairs, to standing frames, to shower/commode chairs, I’ve had lots of different equipment over the years. Each time I need a new piece of equipment, most times I have to be evaluated by a physical therapist. Based on their evaluation, they make recommendations and justifications to the insurance company. When I was younger and receiving therapy regularly, it made sense because the therapist knew how my body worked because they had worked with me for a long time. Many times, therapists recommend things based off “proper” positioning. In other words, they make suggestions that would help people sit the “right way.”  This was the case especially when I young.

With my type of cerebral palsy, if my body is forced into a certain position, it will fight it hardcore. It’s been that way all of my life—it’s just how my body works. For years and years, therapists insisted on things like foot straps to hold my feet on foot pedals. Each time my feet were strapped down, not only would I loose fine motor abilities because my body was fighting so hard against the straps, I’d often push so hard against the straps and foot pedals, they’d break. This happened so frequently when I was a kid. I got so mad at therapists because they kept strapping my feet down. I understand they were doing it for my own good trying to get my posture as straight as possible to prevent complications later, but it, in my mind, it wasn’t worth it.

Another example was when I got a new wheelchair when I was in college. We had to work with a new Assistive Technology Professional (that’s what they call the people who sell DME now) Because the people we worked with before had left.  We still had a therapist who had worked with me for several years, so he was able to help with the evaluation. Well, long story short, this ATP had it set in her mind that I had to have this very customized seating system. I had to sit in this machine that took imprints of my buttocks and she insisted that I needed a pummel (hump) between my legs to prevent them from crossing. Let’s just say, that was my worst chair ever! The pummel didn’t prevent my legs from crossing, and it actually caused me more problems. The seating ended up being just awful and didn’t support my body. Needless to say, we were very happy when that ATP left!

The wheelchair I got after that one was a much better experience. I worked with a new ATP, and, although we had to work with a physical therapist who had never worked with me before (because by that time, therapy had stopped being covered by insurance), they both seemed to finally understand that function was more important than proper posture. Both of them actually listened to me and understood that being able to function to my fullest ability was more important than preserving proper body mechanics at this stage in my life. It was so nice to finally have people who didn’t push my body into ways that just didn’t work. No, my spine wasn’t straight and my legs were rotated in, but you know what? I could continue to do as much as possible independently, and that was what was important to me!

I just got a new wheelchair a few weeks ago. Back in February or March, I needed some minor repairs done on my old one, and, to my surprise, my ATP said he thought it was time for a new wheelchair. I only had had my wheelchair for about seven years. I had heard that Medicaid only pays for one every 10 years or so. He explained that the parts needed to fix my chair were starting to be discontinued, and the he thought he could write a justification that’d be approved by Medicaid based on my needs. Again, we met with another therapist who hadn’t worked with me before, but it worked out even better this time because my ATP had gotten to know my body over the years and he worked with the therapist to write the justification.

Medicaid approved almost everything they recommended this time—even the elevate feature. I picked out the color of the fenders (purple this time!) and it was ordered. The joystick was back ordered, so, after a few weeks, the company decided to send an upgraded one (it has flashers, headlights, and turn signals—it’s truly like a vehicle). My ATP assembled it and then made an appointment for me to come in. From previous chairs, we know that wheelchair appointments take awhile when getting a new one. The ATP has to have me in the chair and make adjustments according to my body and preferences. Again, we were all on the same page this time—it’s all about function and comfort rather than proper positioning.

We were at the wheelchair place for over five-and-a-half hours this time. Many of the adjustments and adaptations were unconventional. For example, while I don’t like my feet strapped to the footplate, I do need something really strong attached to the footplate that I can push my feet on in order to push myself back in the chair. It sounds really weird and it’s hard to explain, but it’s just one of the unique things I need. On my old chair, my dad took a piece of piping and bolted it onto the footplate. The ATP couldn’t find pieces like that anywhere anymore, so, what he ended up doing is taking two armrest pieces from an old scooter they had in the back, bolted them together, and then bolted it onto the footplate. It works great for me! Unconventional? Yes, but oh so functional!

My wheelchair is just one example of where, especially as I get older, functionality is way more important than the proper or customary ways. I’m learning this is true in almost every aspect of my life. From wearing tennis shoes to weddings, to having people break the binding on books so the book stays open for me (yes, I do that), to making sure caregivers don’t zip the zip lock baggies when they make my lunch so I can grab and dump the things onto the table, there are hundreds of unconventional things I do so I can be as independent as possible! As people say, “if it works, that’s all that matters!”  That statement couldn’t be truer in my life!

***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.

Because of a quirk in the calendar, people receiving Supplemental Security Income will receive two payments in September, but none in October. The average monthly benefit is  $624 per month, but many people feel it isn't enough. Many beneficiaries still struggle financially. Lawmakers are calling for reform of the program. SSI beneficiaries are currently subject to a $2,000 asset cap for individuals and $3,000 for couples. New legislation would allow the limit to be adjusted more frequently. Beneficiaries also have a limit on how much income they can earn from employment without the benefit being reduced or lost completely. Legislators are working on bills that would change this as well. 

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