News

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.  

Learn more

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.

Read more

“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.

United Cerebral Palsy (UCP) and ANCOR released the inaugural Case for Inclusion Policy Blueprint for Sustainable Services. The report builds on findings in the latest Case for Inclusion Data Snapshot released in October 2024 and details critical recommendations for policymakers to strengthen community-based services for people with IDD.

Read more

Potential work requirements for people on Medicaid would just complicate things more for people with disabilities. Disability rights advocates say income and asset caps for Medicaid buy-in programs are a "poverty trap" for millions.

Read more

In Wisconsin and beyond, Cindy Bentley is known as an incredible disability self-advocate. In a new short film, Cindy shares her story of determination and resilience. It will premier at the Madison Film Festival in the beginning of April.

Read more

Program integrity efforts work to prevent and detect fraud, waste, and abuse, to increase program transparency and accountability, and to recover improperly used funds. This brief explains what is known about improper payments and fraud and abuse in Medicaid and describes ongoing state and federal actions to address program integrity.

Read brief

Recently proposed changes to the Social Security Administration have advocates worried. Among these changes are plans to cut thousands of jobs, close offices and enact new policy — including more stringent identity checks that could require in-person office visits. Advocates warn these sweeping moves could lead to seniors and people with disabilities having a harder time getting help with their crucial benefits.

Read more

An ongoing lawsuit challenges Section 504 of the Rehabilitation Act, which legally mandates access and accommodations across wide swaths of the public. The article features an interview with Jennifer Kucera. She has a form of muscular dystrophy that limits her ability to move. Daily caregivers help her get out of bed, bathe and dress. Without them, Kucera, 55, said she would be forced to live in an institution. Millions of disabled Americans who rely on Medicaid for legally mandated services to remain integrated in society are fearful that their services could be cut.

Read more

Self-Determination Network News:

March 2025

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

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

• Home-and-Community-Based Service: This is an interesting brief what "home care" is, who is covered, and what services were available in 2024. Check it out!
• Airlines Push Back: Several major U.S. airlines are challenging a new federal rule aimed at improving travel for those with disabilities. Learn why the airlines are pushing back.
• DEIA Explanation: This resource provides an overview of what DEIA is, why DEIA efforts are essential for disabled Americans, and how diversity, equity, inclusion, and accessibility efforts have been affected by these recent Presidential action. 
• Cool Story: For Garrett Murray of Mequon, announcing sporting events for Homestead High School has become a career. Read this neat story.
• The Pink Umbrella Theater:  Milwaukee's "Pink Umbrella Theater" is the only professional theater company in Milwaukee working directly with actors and artists with disabilities. Learn about this unique theater.
• Medicaid Woes Continue: Medicaid serves as a lifeline for many people with disabilities. Learn about why advocates are concerned.

Upcoming Events 

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

• Lunch & Learn: The Spring Election Matters!: March 19th, 12p.m. to 12:45p.m., Virtual
• Too Big to Thrive: March 19th, 1:30p.m. to 3p.m., Virtual
• Webinar - Accessible Tech: Can you Read this Map: Checking Maps for ADA Accessibility: March 20th, 1p.m. to 2:30p.m., Virtual
• Unlocking Opportunities: A Case Study Spotlighting a Successful CIL-AAA Partnership - An Innovative Model for Health Care Contracting: March 20th, 2p.m. to 3:30p.m., Virtual
• Lessons from the Budget Authority State Innovation Lab Collaborative:  March 26th, 1p.m. to 2p.m., Virtual
• Financial Management Services: Friend or Foe: April 2nd, 1p.m. to 2p.m., Virtual
• Webinar: Exhibition Design and Accessibility for Visitors with Disabilities: April 3rd, 1:30p.m. to 3p.m., Virtual
•  Proactive Program Integrity Within Self-Direction:  April 9th, 1p.m. to 2p.m., Virtual
• Self-Direction for the Long Haul: April  16th, 1p.m. to 2p.m., Virtual
• Behind the Curtain: Understanding State Administration of Self-Direction: April 23rd, 1p.m. to 2p.m., Virtual
• People with Disabilities Love Self-Direction, But How Do Waiver Participants and Administrators Plan for the Future?: April 30th, 1p.m. to 2p.m., Virtual
• Circles of Life Conference 2025: May 8th & 9th, Wilderness Resort, Wisconsin Dells, WI
• National Symposium on Quality Employment 2025: May 20th-22nd, Memorial Union, Madison 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.