truthIt was a promise that I made a long time ago, and even if it is uncomfortable sometimes and might go against my grain, it is a promise that I intend to keep.

July 28th, 2007 was a good day for me. I had spent the previous week at the Ms. Wheelchair America pageant and met incredible women of power, all of whom were wheelchair mobile. That night was the crowning ceremony, and although I was not among the top five finalists chosen to become the next Ms. Wheelchair America, I had received a special award that evening, one that had never been given out before in the pageant’s 35-year history. I was proud of all I had accomplished that week.

I was breathing easier because the competition was over and enjoying some dinner when the head judge came over to my table. Matt and I had connected during my judging sessions and I liked he and his wife Tracey (another judge) immensely.

When Matt sat down, he asked if I could make him a promise. Since he and I had only known each other a few days, I was intrigued. “What’s up, Matt?”

“Lorraine, please keep being honest. Keep telling the truth, no matter how hard it is.” It’s not really in my nature to do anything else, so it was easy to respond affirmatively. Although I will never know, I got the vibe from Matt that answering some of the judges’ questions honestly instead of giving the answers they wanted might have hurt my scores in the MWA competition.

I don’t usually like to vent in public. I need to do so today.

As most people know, I utilize the assistance of a team of caregivers in order to live my best life possible. My caregivers are paid through Medicaid funds, and in Kansas, there are several programs that a person with a disability can be on to get the caregiver hours they require paid for by the state. The one that works the best for me is called Working Healthy. On this particular program, I can get more hours covered than on the other programs and I also pay a cheaper premium than I would otherwise. One of the criteria to be on this program is that the person with the disability has to be employed. I have always seen this program as a win-win for everyone involved. I get all the caregiver hours that I need and I pay taxes into the system that provides me with so much support.

I have chosen to self-direct my services which means that it is up to me to recruit, interview, hire, train and manage everyone who works for me. That has always been a whole lot of work, but I took on the responsibility willingly because doing so meant that I could hire the caregivers I was the most comfortable working with. I am okay with the fact that I am so dependent on other people to meet my needs. That situation simply is what it is. Because I am a 48-year-old woman and my caregivers come into my home to help me with the most intimate things that I do, it needs to be my choice who I am vulnerable in front of. That is the only way I get to maintain my dignity. Otherwise, I might as well be living in a nursing home.

As I have mentioned on this blog before, three months ago, I was told that there was a new rule for people with disabilities who hired caregivers. Background checks of the caregivers have to come back before the caregiver can start working. That process takes about three weeks. In real life terms for me, that means that I have hired several caregivers in the last three months that have been ready and willing to work for me and have been prevented from doing so because of this rule. While we have waited for the background checks to come back, I have been extremely shorthanded, and on more than one occasion, have attempted to do things on my own when a caregiver was not here. When I try to get myself in and out of the shower without support, there is a very real chance that I could fall and break a hip. And the issue is not that I don’t have caregivers available, it is simply that the state will not let them work. So I and my caregiver have done everything we are supposed to do, and a state policy prevents me from being safe.

Numerous times I have tried to talk to people who work for the state about this issue and been patronized and dismissed every time. The call it simply an inconvenience.  They don’t want to hear it is more like my worst nightmare.  They say it is for my safety. Not giving me access to the caregivers I hire is much more unsafe in my world. The people who make the rules think it is an acceptable solution that I use agencies instead of hiring my own caregivers. But I don’t want strangers coming into my house helping me with personal things when I had no say in hiring them. Agencies work for many people, but my 31 years of managing caregivers have taught me that there is not a one size fits all solution to having my needs met. More detail about that here.

The thing that I don’t understand is this. I must have a job to qualify for the program I am on that pays my caregivers. If the state knows I am smart enough to hold a job, why don’t they think I am smart enough to trust my gut and my experience when it comes to managing the caregivers I hire?

I guess I am a vulnerable adult because of my disability. That shouldn’t mean I need to be treated like a child and have “big brother” watching because I can’t keep myself safe. The whole situation is so demeaning to me. I just don’t think it is right to take away somebody’s dignity and choice in the name of keeping them safe. Especially when it is an incorrect assumption that I cannot do that for myself.

My disability does not make me incapable.

Usually, I don’t vent in public. I made a promise to Matt a long time ago.

This is my truth.