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A faulty appliance. An event that flopped. A trial of a service that didn’t work out. A test-run of something that failed. There are all sorts of situations where something didn’t go as planned or hoped. In most scenarios, the problem can be fixed or there are other options available. When something doesn’t work out as one expected or hoped, it can be frustrating. Regardless of what it is, people usually aren’t happy about something going wrong. Everybody feels that way, and people with disabilities are no different.   We experience the same emotions everyone else does when things don’t go right.

In my journal entry last month, I explained how two big life changes were happening at the same time—I was moving into a new apartment and I had started with a care agency. The move went well and I absolutely love my apartment. Unfortunately, I can’t say the same for the agency. Going into it, I was prepared for challenges because I had gone through this process a couple times before.  The last two months were simply put, a nightmare.

As I previously mentioned, I was moving from part-time to an agency covering nearly full time, with two eight hour shifts. In early September, the agency promised to staff 16 hours daily, and this was to begin the first week of October.  A budget amendment had to be completed for more supportive home care hours, and this took time to get approved. Then I had to be rescreened for personal care hours.  This was a huge waste of time because, I had to be rescreened for the services I already had….hoops to jump through in this process.  Meanwhile, the agency was posting and hiring people specifically for my cares. Their plan was to hire four people, two on day shifts and two on afternoon-evening shifts.  Needless to say, that never happened.  We set up a training day for three people, only two of whom showed up.  Looking back, that should have been the first red flag. The plan was to have people hired to become “trainers of new staff.” We finally figured out a start date, and at that time, I was asked to release all my old faithful aides, some of whom had worked for me for over seven years.

Now to the staff that was hired.  The two initially trained were very capable and did have some experience, however we shortly found out that one was due to have surgery as well as going on vacation and the other had no way of getting to my place on time.  The third person hired had experience but I was forced to report her for hygiene issues and both she and I felt that she was not able to handle my needs.  Next, the agency was going to try to fill shifts with two people who had residential experience, but were only going to be fill-ins once in a while.  So, in the first two weeks starting, they only had two people, and only two days were fully staffed of those 14 days.  This meant that my parents came up there daily either to fill those shifts- they even stayed overnight a couple times due to consecutive days not being filled.  Admittedly, I was ready to switch back after a day or two, but we felt we had to give them a chance and at least a month or month and a half to prove to us that they could do this.  There were literally over a hundred phone calls between my mom and the personnel director as to what was going on each day. The next three weeks were no different.  I would go to my parents’ home when the agency couldn’t fill shifts, so in that time, only two more days were completely staffed.  Therefore, in a bit over a month, only four days were staffed, and either my parents came up or I would go to their home. The final straw was when one of the two initial hires called in sick four nights in a row, and they couldn’t find anyone to staff those shifts. Enough was enough, promises made were not kept! My parents and I made the decision to dismiss the agency and to go back to hiring our own people.  Even though we knew it would be a lot to go back, we all slept better that night, knowing we were back in control.

Basically, we knew this would be like starting all over again, but I didn’t realize how long it would take to switch back.  Everything from getting the personal care screen released from the agency to completing a new rescreening, to getting doctor’s orders, and budget amendments- it’s been another month of waiting. 

I contacted my old workers, and, thankfully, a couple were willing to come back.  Now, we are in the process of interviewing and hiring new people again.  I’m hoping by early January that I’m able to stay and enjoy my new apartment for more than two nights in a row!

What did we learn from this fiasco? When something sounds too good to be true, it probably is. Second, the long-term care system continues to have roadblocks whether you’re working with an agency or hiring your own aides.  Third, be grateful for the support system you have with family and/or friends! Finally, this experience just amplifies the need to continue to advocate for a better overall system in 2025 and beyond!

***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.

Meet Katrina. This video game obsessed self-advocate is the coordinator of the Self Advocacy Action committee at the University of Minnesota-Twin Cities Institute on Community Integration. She recently finished a class and she’s looking forward to getting more involved with research work in the future. We’re so fortune to have her as a member of the Network!

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

Katrina shares that she lives with Cerebral Palsy and uses a power wheelchair for primary community mobility. She works at the University of Minnesota-Twin Cities Institute on Community Integration. She lives independently in an apartment and utilizes Home and Community Based Services to do so.

Katrina is the coordinator of the Self Advocacy Action committee at ICI. She explains that the purpose of that committee is to make sure that all of the policy and research products produced at the institute are “vetted” by individuals who live with Intellectual and Developmental Disabilities. “We meet once per month and focus on a specific product. All are welcome at our meetings,” she tells us.

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

Katrina explains that their mission as a committee is to improve self-determination (and the knowledge base around it) for people living with I/DD and other disabilities. She joined this network to become more connected to similar efforts and to learn about best practices around self-determination.

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

Katrina is just now finishing a class that is focused on lived experience partnerships for research outcomes in Cerebral Palsy. “I am excited to hopefully become more involved in that work in the future,” she says.

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

Katrina encourages people who want to be more self-determined to educate themselves about the choices available and the topic that they care about. Knowing what options are available is really important in self-determination.

What are some of your hobbies?

In her spare time, Katrina loves going to Target and playing video games. She also loves helping people. “One time I got to help someone pick out a video game at Target. It was a really great day,” she exclaims!

***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.

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