Change is hard on everyone. People say transitions are harder on adults. I have heard that change is even harder for people with disabilities. Maybe its because Im older or maybe its just me, but over the last couple months, Ive realized just how true these statements are.

Ive shared that Ive been an IRIS participant for over six years now. I love being able to self-direct my budget and make choices about my life. In fact, I believe everyone should have the option to self-direct. When I was living with my parents in Fond du Lac after college, we tried to find care agencies that would bill Medical Assistance for personal cares. As I explained in a previous journal entry, that didnt work. Agencies could not staff my shifts. My IRIS consultant at the time suggested I switch to Self-Directed Personal Care (SDPC), so I could hire my own staff. There was a waiting list for it, and by the time I got on it, we had heard that an apartment had become available in Oshkosh. I didnt realize it at the time, but we were very fortunate that the care agency associated with the apartments billed SDPC. So, until I moved in, I just hired my parents to do my personal cares (they obviously had been doing them anyway).

Things had been going so well with the care agency for four and a half years. Sure, there were ups and downs and bumps in the road, but, overall, it had been going very well. Over the last year or so, my IRIS consultant and nurse had been telling me that changes to SDPC and that we may have to make some changes. The change was that SDPC was no longer going to allow third party vendorsthey were only going to allow people to hire their own staff. I knew this wasnt a feasible option for me, but I wasnt too concerned because I thought the agency I had was a Medical Assistance provider. So, when I got a letter in the beginning of July saying this was indeed true and that I had until October 15^th to make the switch, I wasnt overly concerned as I thought I could just switch back to Medical Assistance for personal cares and keep my agency. I setup a meeting with my agency and my IRIS consultant and nurse for mid-July. This was when we found out that the agency wasnt a Medical Assistance provider.

This meant I either had to find my own staff or find a care agency that billed Medical Assistance. Unlike many other IRIS participants, I dont ever want to hire family and friends to be my primary caretakers. It just doesnt sit right with me. For some, its a great option, but thats not the case for me. I also know I could hire out myself by advertising in places such as newspapers and online, because of the amount of hours I need and various other factors, this isnt a feasible option for me. Therefore, I had to find an agency that billed Medical Assistance.

Thankfully, right after the meeting in July, my parents and I got on the ball right away and setup an interview with an agency that was a Medical Assistance provider. We met with them in late July. It was decided Id go with this agency. The agency had to hire multiple people to cover my shifts, so we knew itd take awhile to setup. After many stressful weeks trying to figure out what was going on, I finally started with the new agency last week.

Most people don't understand the gravity of changing agencies has on me, but it's truly life-changing for me. I kept asking my mom how I ever started at UW-Whitewater. She said, "Stac, you had no idea what you were in for," and she's exactly right! Switching care agencies means starting over with all new people and learning a whole new set of rules. Care agencies try to prevent clients and workers from becoming friends because its not ethically correct, but its almost impossible not to become friends with the people taking care of you. Theres a certain trust factor when it comes to personal cares. I have to get to know and train all new people. This is not an easy task for anyone, but its especially hard when youre non-verbal. I typed out detailed instructions for each care shift, but even with those, I have to get used to each new person and vice versa. Its pretty stressful and exhausting!

The change not only affected my life; it affected my parents life as well. They had an out-of-state trip planned in October. Since I was going to be with a new care agency, my mom and dad didnt feel comfortable leaving me behind. Originally, I was going to go with them, but, as the start date got pushed further and further back, we realized that cancelling cares for over a week right away probably wasnt the best idea. In the end, my parents decided to stay closer to home in case Id need anything. Im grateful for their sacrifice.

While personally I dont understand or agree with the third party vendor rule (I dont know how limiting who we can hire is self-direction), Ive accepted it and moved forward. Change, whether its big or small, isnt easy for anyone. We have to learn to adapt and move forward one step at a time!

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.