What happens if my parents both suddenly pass away? What would happen to me? What would I do? Where would I go?  These are not normal questions for a person my age to worry about, but for many adults with disabilities these are very real concerns. I recently turned 35 years old and my mom casually asked a deep question. Are you where you thought you’d be at 35?  My response was I don’t know where I thought I’d be, but I’ve learned that the system isn’t setup for a person like me. “And that’s really scary,” I added. For full disclosure, I may have added some choice words to that statement, but you get the gist of what I’m trying to say. Let me explain.

Before last Christmas, I knew I needed to hire some new caregivers because I had people moving on and students who were going on clinicals. I posted and hired some people before the holidays. Due to paperwork and approval time, I couldn’t have them start until after the holidays. As it turned out, all of the workers we just hired were no longer interested in the position. We held interviews in the middle of January. We had six interviews, but unfortunately, none of the six showed up. By that point, I was beyond frustrated. My parents and I talked, and I decided it was time to try something different.

I made the tough decision to try Family Care. My mom called the ADRC and a case worker agreed to meet with us. Leaving IRIS was the last thing I wanted to do, but I felt I had no choice. I had been in IRIS over 10 years, and had become quite involved with advocacy for the program. I loved every part of it, but I just continually had problems finding workers. By leaving IRIS, I felt like I was giving up on myself. I hated it, but kept telling myself it was for the best. I dreaded the meeting with the ADRC. Luckily, the case worker that my mom and I met with was very nice and understood my situation. We asked many questions and we learned most of the questions we had were for the Managed Care Organization (MCO) I’d choose. I chose the MCO I heard the most about from others. We filled out the transfer paperwork, but before sending it in, I asked the case worker to hold off until I told people at my IRIS Consultant Agency know what was going on. It was very important to me that I be the one to tell them what was going on because they had been excellent to me. The case worker understood. When we were doing the paperwork, very admittedly, I broke down. With tears in my eyes, I said, “I just don’t want to end up in a (group or nursing) home.” The case worker assured me that that’s a last resort.

Later that evening, I wrote emails to the people I needed to tell. Everyone was understanding of my situation because they knew the constant struggles I was having. They cautioned me to be assertive, and to not to give up all self-direction. Those were very hard emails to send because I knew I didn’t want to switch and felt like I was letting them down, but again I kept telling myself it was for the best. After I sent those emails, I gave the case worker the okay to send in the transfer paperwork. About a week later, I finally got an email from a MCO case manager about setting up a meeting. It was another week before they could meet with my parents and I. Already red flags were popping in my head because I’m not one to wait on getting things started.

A week later, the case manager and nurse came to my apartment to meet with my parents and I. We asked a lot of questions and got the process started. They told us it may take two agencies to staff my shifts. I wasn’t sure how that’d work, but I was okay to try it. I found a couple things very interesting. Family Care doesn’t allow hours for anything other than personal care and basic housekeeping chores. They wouldn’t give me hours for workers to assist me if I wanted to do anything fun such as meet friends for dinner, go shopping (for fun), or go to the movies. I could use my allotted hours to do those things, but since I wouldn’t have budget authority, there was quite a discrepancy in the number of hours I’d get (for Supportive Care). It was interesting to learn that I don’t qualify for 24\7 care unless I move into a group home or nursing home. Not that I want or need that right now, but it’s interesting that because I’m cognitively fully aware that I don’t qualify for around the clock care even though physically, I need so much assistance. Nevertheless, we proceeded with putting together a plan for me.

Over the next several weeks, under their direction, my parents and I met with a few care agencies. I signed a bunch of Release of Information forms allowing the MCO to talk to agencies about my needs. The agencies we actually met with only could take a couple shifts per week and most didn’t have a reliable backup system. The case manager supposedly talked to 12 different agencies and had very little luck. All the while, I was in limbo with my current workers trying to figure out what to tell them.

The idea of having multiple agencies began to scare me more and more. I asked what would happen if an agency decided they could no longer fill the shift. The case manager said they’d ask another agency if they could do it. I then asked what happens if no one else was able to. She said they’d have to look for a place for me. I’ve been in the advocacy world long enough to know, although its many times denied by organizations, that exact scenario happens all too frequently. I now see exactly how others with similar circumstances end up in nursing homes and group homes.

After a couple more weeks communicating with the MCO, I talked with my parents and decided to stay on IRIS for the time being.  I’m incredibly fortunate that as long as they’re able to physically take care of me, my parents will not allow me to go into a facility. This is a huge sacrifice on their part. We’ve been talking about how we both need to make sacrifices in order for this to work. They’ll be there for me as long as they are physically able, but I also need to let them travel a little bit which often means going with them. As snooty as it sounds, I often don’t like traveling as often as they do and where they do. That said, I realize that I need to let them somewhat enjoy their hard-earned retirement. We’re working on finding a happy medium.

In late April, I posted for caregivers, and we set up a where we had five interviews. Unfortunately, again, we had five no shows, but we had better luck in early May. I now have three or four new workers. It’s a process getting everyone trained and comfortable, but we’re getting there. I may even be able to stay at my apartment most of June! That hasn’t happened in months, so after a very rocky first half to the year, things are looking up a little bit.

However, I know how quickly things can change and I know there will be several more bumps in the road. During the conversation with my mom I told her I feel like the “system” isn’t made for people like me. Now, at least we’ve explored the all the options and know how Family Care operates. I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better. We, as humans, deserve it!

***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.