The night Governor Walker presented his proposed state budget, I stayed up late into the night to skim the 1800 plus pages. The more I read, the more my heart sank. The biggest surprise and disappointment was when I then read about proposed changes to a program I hold near and dear to my heart.
IRIS (Include, Respect, I, Self Direct) is a Medicaid Waiver long-term care program. This program allows individuals with disabilities and the frail elder to remain living in the community with supports. These supports range from cooking meals to helping someone clean their home, to assisting with bathing and dressing along with many others household tasks. Some additional possible supports are long-term job coaching at community employment, some job training and transportation to and from work. Ultimately, the goal is to prevent individuals from entering and remaining in a nursing home.
Since July of 2011, I have witnessed some incredible transformations in the lives of those I work with through IRIS. Individuals who, until IRIS, were told they would never be able to live independently and would always need someone to tell them when and what to eat, go to bed, where to live and prevent them from interacting with friends without disabilities. These same people who have been living on their own, paying their bills, working, and creating meaningful lives within their communities. There has not been a day since 2011 that I haven’t gone to bed at night thankful for an experience with someone I am working with.
One of Governor Walker’s budget proposals is to combine IRIS with the other Medicaid waiver long term care program — Family Care. The thought behind this change is that family-care already offers a self-directed model within their program.
Family Care serves it’s purpose for those who want that level of care, but self-direction is not defined the same in Family Care as it is in IRIS. The rate of growth for IRIS is proof that people want choice and the ability to self-direct.
To put this in perspective, when I started working for IRIS, we were coming up on our 3,000th participant to join the program. Currently, there are almost 12,000 individuals who are enrolled with IRIS. Overwhelmingly, the individuals I work with were once with the Family Care program and made the decision to switch because they felt their long-term care needs were not met for themselves and/or loved ones.
I would love to invite Governor Walker to visit some of these families I work with. This will give him a chance to see that these individuals are not just numbers on a piece of paper. They are our neighbors and our friends. They are also our fellow taxpayers, because many of them work at community jobs.
I would love to show him the creative ways these individuals have been able to use their supports in a fiscally responsible way. They are not, as some believe, fraudulent or abusing the system. They are individuals who want to be treated with respect and dignity like the rest of us.
One of the individuals I worked with was a man who had worked his entire life at a company that didn’t offer insurance. He was a hardworking man who was always looking for a way to give back to someone. Then one day he had a heart attack and because he didn’t have insurance and didn’t want to bother anyone by going to the hospital, his kidneys started to shut down. His only wish was to die in his house. Through the supportive home care and personal care I was able to set up for him through IRIS, his wish came true at the age of 63.
Governor Walker needs to meet individuals like him in their home prior to developing proposals that are financially motivated. I want him to talk to these individuals and consultants like me who can provide him with some possible cost-saving options. The people on the front lines have the solutions, but he has to take the time to listen.
This is not just a job for me, it’s my passion. The interactions I have with these individuals and the change I have witnessed makes me want to work harder to make this a reality for all individuals with disabilities. A mentor of mine once told me that living a self-directed and self-determined life is a civil rights freedom that all of us want and deserve. In my soul, I believe this.
I know my education and experience will allow me the ability to find another job, but the lives of the people I work with could be devastated with these proposed changes. Please help me and those I care about. Reach out to your local legislator, representatives and Governor Walker. Let them know that you don’t agree with the proposed changes to IRIS.