SAVE IRIS Survey Responses
As you know, the state budget proposes major changes to Wisconsin’s long term care system. The past few months have been filled with emotion and concern for many self-directing their long term care services through IRIS. SAVE IRIS is a grassroots organization that has graciously shared with us the results of a recent survey. This survey had more than 1,100 responses from people enrolled in IRIS, and their family, friends and community members. SAVE IRIS provided all survey responses in a bound document to all 16 members of the Joint Finance Committee that is currently reviewing and modifying the Governor’s budget proposal before it is voted on by the Assembly and Senate in June.
We are sharing a few of the comments from the survey with you in this issue of The Path Ahead. Our hope is that in this small sampling you will find confirmation of the important work you do each day. We continue to Clear the Path Ahead together with so many wonderful people in Wisconsin who provide us with this opportunity.
Please continue reading for selected survey responses.
The IRIS program has allowed my family the ability to customize and self-direct supports that allow me to participate in my community, meet friends, and continue to live with my family. My extensive medical needs are best understood and managed by caregivers that have been with me since I was a child. I am non-verbal and they understand my communication and recognize when I have medical needs. The IRIS program allows me to remain with my family and allows them the flexibility and choices needed for me to meet my goals of a safe, happy, and healthy life.
Mindy guardian for Evan (Cedarburg)
My daughter is 26 years old with Down syndrome. Having the IRIS program has allowed her to maintain a job at the local Taco Johns. She also has a caregiver that is working with her to gain cooking skills that will hopefully help her in the future to live independently. Taking away the IRIS program would create a hardship for her family and her. She would not be able to maintain her job, her self-esteem would decrease, and her feeling of importance and her daily living skills would be jeopardized. We need to support the wonderful program the state of WI has created for this group of individuals.
I have two friends who use the IRIS program and both have been changed by it. One is nonverbal and autistic and very intelligent. He was in a group home where another resident was sexually abusing him and he had no voice to express or tell anybody. Once family found out he was removed and they got into the IRIS program where now he makes choices of what he can do. Before the group home never had transportation to get him steadily to any place for him. Now he is able to go to a college for people with autism that is local, he goes to an art class which he is very good at art, and he is getting training with Augmentative/Alternative Communication and is now able to communicate with others more and more. Under his other plan of support he was not given these choices and allowed to sit around and do nothing.
IRIS has made it so my husband can stay in our home and be with his family and grandkids. etc., it has made it so I can work again as his caregiver and keeps him out of hospitals and nursing homes, before IRIS allowed me to stay home and care for my husband he was in the hospital 9 times in one year since I have been caring for him threw iris he has not gone one time as IRIS allows me to work with his doctors and him and we stay on top of the illnesses before they hit and this keeps him home. If IRIS ends, well I just don’t know what we will do
Chris (Eau Claire)
My son is 22 years old. When he was younger and under 18 we had no assistance or help at all. In fact, it was not until he was 17 that a case worker approached us and helped us get him into a program. After he turned 18, we were very nervous about structured long term care and how he would benefit and what the future would hold for him. Now, his mother and I can balance the budget of his allowed amount and determine what he needs for care, supplies and etc. Most of the medical and DME. We can choose. Not a middle man who is going to bill us an outrageous amount and then suck his budget dry. This is one thing I feel very strongly about. The IRIS program is designed to remove that middle man and allow someone the freedom to choose. IRIS has allowed my son more dollars in his care plan so that he can go to adult day services and still get the quality care at home by his family and personnel that we feel he will benefit from. He started on this program at the time of its inception. We have watched it grow and become a very important part of his health care and well-being. The most important thing with this is that his mother and I both can continue to work while we know that we are getting good quality care while we are at work.
Scott and Maria (Eau Claire)
I am the mother of a 21-year-old son, Noah, who has been in the IRIS program for three years. We chose IRIS because of the “I respect”, “I self-direct” rationale behind the program. Noah has acquired many labels throughout his life, but he is so much more than that. He is a human being who, like all of us, has struggled, failed, lost his way in a world that is not always kind or built for people with unique challenges. I have been with him every step of the way and have never fought for anyone in my life so much. I was told when he was three, he would never talk and end up being institutionalized due to the diagnosis of autism at that time. He got into the in-home behavioral therapy program and made tremendous progress. He was also in the autism waiver program. His challenges are many. He has physical, medical and psychiatric issues ranging from type 1 diabetes (12 shots a day) to bipolar disorder. Noah takes 23 different medications a day and needs help with various things due to sensory, fine motor, cognitive and behavioral issues. However, he does talk very well and understands everything. IRIS has allowed Noah to strive to live a life with meaning and. He is starting to do some volunteering at a Children’s Hospital satellite clinic, which makes him feel like he is giving something back. He has a young man who works with him on daily living skills, also a type 1 diabetic, who takes him out in the community. They have went grocery shopping, to movies and a couple concerts. Noah was able to choose this person himself. He sees it more as a friendship. It also makes him feel part of something more. They plan out and design the things they are working on. He is still learning and has a future. This has helped increase his independence by trusting this person that he works with. He trusts because he was able to choose. I think IRIS is something Wisconsin should be proud of. It is, like the people who participate in it, a unique program. It is keeping people out of nursing homes and institutions. That is cost effective and a success in itself. It is giving these people a QUALITY of life. Without QUALITY, life is not worth living. It just becomes being taken to appointment after appointment and your individuality being a number on a piece of paper. I recently took Noah to a dental appointment and there was a young man from a group home there with a staff member. He looked rather unkempt with long, dirty fingernails and hair that needed brushing, but what my son, Noah, noticed the most was the person who accompanied him did not answer him, did not make any eye contact with him and most importantly did not LISTEN to him. When we left the appointment, Noah told me, “Mom, I’m so glad I’m not him. He seems like he is just a shadow and people look through him. Everybody should be made to feel like somebody. I’m so lucky I’m not him.” If it were not for a program like IRIS with self-direction, Noah could end up like him. My son is so much more than a shadow and I challenge anyone to meet him and disagree with me. “To build may have to be the slow laborious task of years. To destroy can be the thoughtless acts of a single day.” – Winston Churchill. (He understood and he failed sixth grade). “Empathy and compassion are just useless words without action.” – My quote. Please save IRIS.
Our daughter was 18 when she suffered a Traumatic Brain Injury as a result of a car accident. Her life was forever changed, and these changes affect our entire family. Until her inclusion into the IRIS program we were spending in excess of $2,000 a month for therapeutic and rehabilitation expenses in our attempt to assist her to regain her life back and give her a future including community reattachment. IRIS saved our family from losing our home in order to continue these services for her. IRIS is critical not only for countless individuals and their families, but also for the numerous small businesses across the State of Wisconsin who provide the essential services to individuals with disabilities. The meager savings proposed by eliminating IRIS would inflict immeasurable harm to the lives and future hope to many people who seem to pose a financial burden. Don’t turn your back on people who desperately need support for THEIR future.
My sister is the mother of a severely disabled child. For the past 23 years, I have watched her struggle to make his life the best that she can. She now has him involved in music therapy, which he can relate to. She also has a caregiver to give her some down time, which she deserves. Her life is 24/7 with her son. Since she has employed these services, her quality of life has improved greatly. Please don’t take these choices away from her.
Cindy (Lake Geneva)
I have been with IRIS for 3 years. It has made a huge difference in my life. Being able to determine who helps me and when they help me is only part of the benefit of IRIS. Having self-respect and feeling good about yourself and your situation is vitally important for a disabled person.