When’s my next shift?  Will the person show up?  What do I do if they don’t?  Am in the right program?  What will my future look like?  While most people my age worry about things like wedding plans, their kids’ activities, and buying or remodeling a house, I’m faced with questions that nobody should have to worry about.  As I discussed in my August entry, my family and I have started looking into different care and living options for me.  Until we recently started researching the options, I had no idea of how absolutely messed up the long-term care system really is.

As I explained in previous entries, when I started college at UW-Whitewater, I was on a wavier program which allowed Medical Assistance to pay for my cares with an agency.  When I graduated and moved back to Fondy, my parents and I met with the local Aging and Disability Resource Center (ADRC).  At the time, we were presented with two long-term care program options—Family Care and IRIS.  Back then, Family Care really didn’t have self-direction options, so IRIS was the obviously right choice for me.  At the time, the home care agencies I was trying billed Medical Assistance, so that wasn’t an issue.  When we realized that the care agencies weren’t working, I got on the waiting list for Self-Directed Personal Care through IRIS.  It worked out that right around the time I got on SDPC I found out that I got the apartment in Oshkosh.  I was very lucky that the care agency that was connected to the apartments worked with us and billed through SDPC.  That worked incredibly well for over five years until rules changed in IRIS no longer allowing third-party vendors for SDPC.  Long story short, I went to an agency that billed Medical Assistance for eight months.  For various reasons, that didn’t work out, so I went back to SDPC and have been hiring and managing my own staff for over two years.  As I’ve explained, it’s a lot of work and stress.  For the time being, my parents and I are making it work because basically we have to, but we realize that this isn’t going to work long term.

When my sister settled down in the Madison area about  three years ago, I thought that I’d eventually move down there—not only to be closer to her, but since it’s a bigger city, I had thought that services would be better and there’d be better opportunities.  Just over a year ago, I got on waiting lists for two income-based accessible apartments in Madison.  We knew that the list was years long, but at least I was on the list.  A few months ago, when cares really started becoming a challenge again, my mom and I started researching our options.  What we’ve learned is that the options are very limited and the “system” is unbelievably broken.

In early October, my mom and I went to Madison for a day and met with the ADRC and the Independent Living Center.  My sister happened to have the day off, so she joined us.  I went into these meetings with a very open-mind wanting to learn about all the options available.  We learned that everyone who receives long-term care services in Wisconsin has to in one of three programs: IRIS, Family Care, or Partnership.  IRIS is the least restrictive and Partnership is the most; Family Care falls in between.  Initially, our first thought was to switch to Family Care because it still has self-direction options, but yet it sounded like they’d help me manage my care.  Perfect, right?  We then began to ask questions about the care agencies and housing.  Due to the care shortage everywhere, agencies are having a hard time filling shifts and many aren’t taking on new clients. 

There are several different types of living options for people with disabilities, but, unfortunately, none of them are really appropriate for me.  There are basically Adult Family Homes, Assisted Living Facilities, and Residential Care Apartment Complexes (RCACs).  There are variations of these, but they are the main categories.  Adult Family Homes are basically group homes.  There are very few for those with physical disabilities, and honestly, I don’t want that.  Assisted Living Facilities usually have age limits (usually 55).  RCACs are probably the closest thing I’d consider, but I don’t fit the criteria (usually require less than 28 hours of care per week and need to be able to transfer independently) for those either. We asked about how income-based housing works.  The Dane County Section 8 waiting list is now closed, but they won’t even tell people where they are on the list.  You aren’t allowed to tour an apartment until you’re at the top of the list and your application has been accepted, so you’re expected to apply for these apartments without even seeing them!  From the little information we were able to find online about them, we learned that the apartments are usually one bedroom and are quite a bit smaller than what I have.

After learning a lot of information, my mom and I discussed our options on the way home.  I realized that I’d be no better off in Madison.  My apartment here is really pretty nice, and we can work on improving my situation here rather than starting all over down there.  I had decided I wanted to look into Family Care in Winnebago County.  It wasn’t an easy decision as I felt like I was giving up my independence I had in IRIS, but, nevertheless, I was ready to at least consider it because I understand something needs to change.  My mom called the local ADRC the next morning to try to setup an appointment to learn more about Family Care.  The case worker asked why I wanted to switch.  My mom explained that we were just having too much trouble with cares and wanted to learn about Family Care.  The worker wasn’t very nice or helpful, and she told us that we’d be no better off because agencies are having the same problem.

My mom and I have done some more research on our own and found out that there are two Managed Care Organizations (MCOs) that work with Family Care in my county.  Neither of them will meet with us unless I enroll.  The list of their providers is on their websites; however, you don’t know what your options truly are until you enroll and apparently have a team meeting.  It’s incredibly frustrating because there are a lot of home care agencies out there, but because they get a better deal with contracts from the MCOs, very few of them accept Medical Assistance.  The few agencies in my area that do seem to be either be full or only provide services during daytime hours which makes no sense to me.  How can a home care agency that provides personal cares for people only provide care until 7p.m.? I’d be stuck in bed for 12+ hours! 

Where does all of this leave me?  Good question.  Nobody really has a solution at the moment.  We continue to do research and look for options.  Personally, it’s very nerve-racking and depressing knowing there isn’t a good solution.  What’s one supposed to do?  Many people say raise wages for caretakers; while I agree that’d definitely help, I don’t think it’d fix everything.  I’ve spent many sleepless nights pondering; I don’t know what the answer is.  It’s not likely to happen anytime soon, but I think a complete overhaul of the “system” needs to happen.  I’m not even sure what that would entail, but things need to change.

So, while I’d give anything to have the worries most people my age have, I have to remind myself that I have a special purpose in life—it’s to advocate and pave new paths for people with different abilities.  I don’t have the answers, but I know giving up is not an option in my family! 

***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.