News

Changes to the Social Security Administration will create more hurdles for seniors and people with disabilities. People will no longer be able to call Social Security to apply or make any changes to their account. Instead, they will have to either travel to a Social Security office (which could be a 45 mile trip for some people) or do it online. These imposed changes are meant to " further safeguard Social Security records and benefits against fraudulent activity."

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In this month’s Member Spotlight, we’re catching up with Jason. This amazing self-advocate has played a pivotal role in turning one of Wisconsin’s state disability councils around over the last couple of years. He also has enjoyed helping family members navigate and advocate for what supports they need to be successful. Read more about what Jason has been up to in this month’s Member Spotlight!

We last shined the spotlight on you in 2015. Can you briefly reintroduce yourself and share a little bit of your story?

Jason Endres lives in Eau Claire with his wife Julie and their service dog Pinky Jellybean.  He shares that he’s a self-advocate for himself, but he truly advocates for others that cannot speak for themselves.

What kinds of advocacy projects are you involved with these days? 

Right now, like everyone, Jason is advocating for Medicaid not to be dismantled.  “Losing just one part of Medicaid will harmful for many people in the country,” he says.  

Statewide, Jason has been working with the Independent Living Council of Wisconsin. He explains that when he was appointed to be on the Council, they were a real mess and was in jeopardy of losing money from the federal government for not sending in reports and not having the right number of people on Council. “I helped with turning the council around and made many changes, so when I have to leave the Council in July, I feel I did my part,” he tells us.

Tell me some good news – what’s the most exciting happening for you (or in Wisconsin) in terms of self-determination

It’s really hard for Jason to think of exciting news for himself—especially in the political climate we are in right now—but, if he had to choose one, it’s helping his sister find resources for his nephew, Nick. He explains that Nick was having a real hard time at school, so he helped him get tested for Autism.  It turns out that his nephew was diagnosed when he was 13 years old. “So, we are all learning what’s best for Nick,” he says.

What resource can you share with us (website or article)? Why is it useful?

A resource Jason often recommends to people is the Independent Living Council of Wisconsin website. He explains that the Council does do a great deal of collaborating between the eight Independent Living Centers in Wisconsin. They are always looking for new board members, so if you are interested in finding out more details, he suggests going to their website.

What would be your dream vacation?

Jason has two dream vacations.  The first one is going to Australia, and the second is going Hawaii.

***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.

The Education Department enforces disability rights in schools by distributing Individuals with Disabilities Education Act (IDEA) funds and investigating discrimination complaints. Trump plans to transfer these responsibilities to Health and Human Services (HHS), raising concerns about separating special education from general education. Recent layoffs have already reduced enforcement capacity for disability rights violations.

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Nearly half of staff at the Administration for Community Living have been terminated as part of broader Department of Health and Human Services (HHS) layoffs, disrupting funding distribution for disability programs nationwide. The agency, which coordinates aging and disability services across 2,500 community organizations, is being dismantled with functions redistributed to other departments. Disability advocates fear program closures as funding notifications are delayed and administrative capacity has been gutted, with over 450 groups opposing the reorganization.

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The Wisconsin Intellectual and Developmental Disabilities and Mental Health (IDD-MH) System Improvement Community of Practice launched in December 2024. The project steering committee shared plans for turning the recommendations from last year's report into actions. Now, we're excited to share a few updates.

Recommendation 5.7 is now in progress

Recommendation 5.7 aims to expand the Certified Direct Care Professional (CDCP) training program to include modules related to IDD-MH. Learn more on page 68 of the report.

Here’s what to know:

• This work will connect people who provide care to people with IDD-MH needs with free training. This includes family members and paid caregivers.
• Training topics will help caregivers:
  • Understand IDD and mental health disorders.
  • Get strategies for effective communication and crisis prevention.
  • Recognize how mental health disorders present in people with developmental disabilities.
  • Know how health conditions connect with IDD and how they affect mood and behavior.
• The Wisconsin Department of Health Services, the University of Wisconsin-Green Bay, and members of the Community of Practice are working together to complete this work in 2025.

Visit the new Recommendation 5.7 webpage to learn more, see key milestones, and find ways to get involved.

Work on more recommendations is coming soon

The steering committee will start recruiting for two subcommittees in the next few weeks. As members of the Community of Practice, you'll have the chance to join these teams. Keep an eye on your email—we'll send information on signing up for subcommittees soon.

Voting barriers for people with disabilities in Wisconsin continue. Last year, four voters with disabilities, along with Disability Rights Wisconsin and the League of Women Voters of Wisconsin, filed a lawsuit seeking access to electronic absentee voting. A lower court initially granted some voters that option, but an appeals court paused and eventually reversed that order. The case is now before the Dane County Circuit Court.

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On March 27, 2025, the FCC adopted a Further Notice of Proposed Rulemaking (FNPRM) proposing improvements to ensure the resiliency, reliability, interoperability, and accessibility of Next Generation 911 (NG911) networks.  NG911 will provide improved support for the full range of 911 voice, text, data, and video communications, which will enable improved 911 access for individuals with disabilities.  

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The Trump administration has announced the dismantling of the Administration for Community Living (ACL). The ACL oversees programs helping people with disabilities access all range of services in their communities and advocates for the needs of people with disabilities, older adults, families and caregivers across the federal government.

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“I can’t wait to go home and relax.” Whether it’s after a long day at work or returning from an exotic vacation, home is usually where most people can go to relax. Home is generally where people feel most comfortable. It’s a place where people can decompress from whatever is going on in their lives. Home should be known as a safe place people can go when things get tough. It should be a place where people want to be. The concept of home looks different for everyone, but it’s a place where people can resort to. That said, there are many different reasons why home may not be the sanctuary that it’s intended to be. One reason may be because you rely on caregivers who are constantly coming and going in and out of your home.

“I’m sick of being just a job to some people,” I recently said to my mom one night. In the past, I’ve written quite a few journal entries about various topics related to caregivers. I don’t think I’ve done one on different types/personalities of workers, though.  I’ve explained that my so-called “caregiver journey” started out in late elementary school or junior high. I just had someone for an hour or so after school. It was through an agency and it was mostly middle-aged ladies. I was young and, even though they weren’t, they were like babysitters to me. They were sweet to me and helped me with what I needed until my mom got home from work. Although at the time I didn’t realize it, cares at UW-Whitewater were a very unique situation. As I’ve explained, most of the workers were students as well, so during my shifts, it was just like hanging out with a friend. The few workers who weren’t students were sweet ladies. For the most part, I didn’t run into problems with caregivers in college either. It wasn’t until I moved to Oshkosh that I realized that I was going to have to deal with caregivers with a variety of different personalities, attitudes, and work ethics.

In the almost nine years of hiring my own caregivers, I’ve had workers with a plethora of different personalities, attitudes, and work ethics. While I understand that I really am a job to people, it can be really exhausting and challenging to have people who simply don’t care about anything other than getting the “job” done. This is the type of person who is almost always a few minutes late for their shift and neglects to text me. They do the tasks they are supposed to, but that’s it. They want to get everything done as fast as possible so that they can spend the rest of the time doing what they want (usually be on their phones or computers). When I ask them for assistance with something out of the ordinary, they do it, but often not without attitude. They usually don’t say anything, but their body language often expresses negative attitude. There’s often very limited interaction with this type of person. I’m just a job to them.

On the contrary, I’ve had many workers who are overly anxious. This type of person is overbearing and he/she feels the need to share way too much information about their personal life. They also want to know everything about your life and will go to extreme measures to find out what they want to know. These are the type of people who will talk your ear off even when it’s obvious you’re busy doing something. Some make really bizarre inappropriate comments about very personal matters they have to assist you with. These people often don’t have a filter and will say what’s on their mind regardless of the circumstances. They feel the need to fill silence all of the time.

Currently, about half of my workers fit into one of these two categories. It wears me out to deal with people on both ends of the spectrum day in and out. It’s exhausting to have someone who is so nosey and talkative all day long, but then then have someone who is just in it for the money and rushes through everything here at night. It’s really challenging to constantly work with both kinds of people in your own home. In this day and age where caregivers are so few and far between, I can’t be too picky. I have to do a risk and benefit analysis of each situation.

Thankfully, the workers who I consider friends kind of balance it out at the moment. Every few days, I get a much-needed reprieve when one of them has a shift. I, of course, also have my support system which I heavily lean on. My counselor suggested that I start making a list of all the crazy and bizarre things that caregivers say and do. My mom and I have done that and it makes me laugh which is what it was intended to do. At this point, with all the crazy bizarre caregiver problems I’ve had over the last few years, my counselor is trying to get me to use humor to deal with some of the stress of it. It’s working a little bit.

For me, my apartment is still a place I call home. There are times when I feel like I can relax and enjoy decompress from whatever is going on. It’s the place where you feel most independent. However, at times, home can be a really challenging place to be.  Depending on assistance from caregivers, has forced me to learn how to work with all kinds of people. Albeit, extremely difficult at times, it’s a great skill to have!

***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.