By LeAnn R. Ralph
COLFAX — The legislative listening session in New Auburn was packed, so Christina Schindler of Colfax only had a brief opportunity to say how the governor’s proposal to eliminate the IRIS program would affect her family.
IRIS stands for “Include, Respect, I Self Direct” and is a program designed to allow people with disabilities to stay in their homes and to make decisions on hiring caregivers and purchasing goods and other services.
About 30 people attended a listening session held in New Auburn March 9 held by state Senator Terry Moulton (R-Chippewa Falls) (District 23) and state Representative Tom Larson (R-Colfax) (Assembly District 67).
Many of the people at the listening session spoke about what the loss of IRIS would mean, and several people also talked about the governor’s proposed budget eliminating Aging and Disability Resource Centers (ADRCs).
Since Schindler was unable to do more than make a brief comment at the one-hour listening session, the Colfax Messenger offered her an opportunity to comment on the potential loss of the program that has helped her family.
Schindler and her husband, Patrick, are the parents of two autistic sons, Jake and Matt.
Jake has become interested in abstract painting, and a number of his paintings have been donated to the Mayo Clinic Health System in Menomonie where they are on display.
“It would be very devastating to our family and to thousands of other families if Governor Walker eliminates the IRIS program and redesigns the Family Care program. Life is not a ‘one size fits all,’” Schindler said.
The IRIS program provides an IRIS consultant who works very closely with each family or participant. People enrolled in the program are given a budget and then have the ability to hire their own caregivers.
Those who spoke in favor of the IRIS program at the Larson/Moulton listening session said that participants — and several had adult children enrolled in the program — tend to stay under budget and have money left over at the end of the year.
“The IRIS program recognizes that their participants, the young and the elderly with special needs, are all individuals,” Schindler said.
“IRIS also recognizes that each of their participants should have choices: who to hire to be within his or her home, and who to hire — someone they feel comfortable with — assisting with bathing, and so on and so forth. I think most of us would want that choice for ourselves,” she said.
Schindler said one of the especially important aspects of the IRIS program is that it helps people with special needs be part of their communities and to make a difference in their communities.
“They are being recognized by their strengths and abilities — not just by their disability,” she said.
“Our son, Matt, has been in the IRIS program for three years. Two years into the program, Matt no longer needs personal care. That is because IRIS helped Matt reach his individualized goals. Matt has a passion for farming and is learning new skills everyday. With Matt being in the IRIS program, he is able to live in his own home and is able to do and learn new things on what he is so passionate about — and that is farming,” Schindler said.
“Our youngest son, Jake, has been in the IRIS program for two years,” Schindler said.
“Within those two years, Jake has been actively involved in the community. Jake’s IRIS consultant played a key role in this. Jake was selected to participate in painting one of the many traffic utility boxes in Menomonie. Jake also painted two Free Little Library boxes. One is located outside by Dr. Phillips’ dental office in Colfax, and one located in Menomonie by Stepping Stones. Jake also has donated many, many pieces of his abstract art paintings, which can be seen in the Mayo Hospital in Menomonie and at other Mayo clinics in Wisconsin and Iowa,” she said.
Schindler says the undisputed value of IRIS is meeting the individual needs of participants.
“All these wonderful things that Matt and Jake are doing is because of having a wonderful IRIS consultant, a solid in-home team, and it is because of the IRIS program and the agency as a whole, with choices available and options within the program to meet individual needs,” she said.
Schindler says she is afraid that if Governor Scott Walker’s proposed elimination of IRIS comes to fruition, Wisconsin will being going backward.
“If Governor Walker’s proposal passes, I sadly see us going back to the day where people with special needs were not seen or heard. My thought is — what happened to moving Forward?” Schindler said.
Schindler suggested that Governor Walker should talk to families and IRIS consultants to obtain a better understanding of how important IRIS is to participants.
“I cannot stress this enough,” she said.
Schindler said she is disappointed and concerned that Governor Walker is not distributing more information about his proposal to eliminate IRIS and to redesign Family Care.
“There are a lot of unanswered questions. Which is very frightening to me and to many others. This will affect more than 55,000 people in the state of Wisconsin,” she said.
The number of participants in the IRIS program is reported to be between 11,000 and 12,000, but individual participants also each have a number of family members who are affected by their loved one’s participation in the program.
And each IRIS participant hires community members and family members to help them.
Several people at the listening session mentioned that through the IRIS program, participants employ thousands of people who provide care and other services.
“I understand if there needs to be cuts. But there is no need to completely eliminate the IRIS program, and there is no need to try to ‘reinvent the wheel,’” Schindler said.
“The IRIS program model saves tax dollars by eliminating the ‘middle man.’ For example, there is no need to spend taxpayers’ dollars to hire someone, or multiple people, within an agency to do the interviewing, hiring for in-home staff, or firing, and there is no need to hire someone to train in-home staff, because the IRIS participant or the legal guardian takes care of all of this and decides who they want in their home. The legal guardian or the participant do not get paid to coordinate all this for their loved ones or for themselves,” she said.
“This works for families. They value the individualized choices within the IRIS program,” Schindler said.
“People are becoming independent and are reaching their goals to be independent as much as possible. They are participating in their community, and they are making a difference. I applaud each and every person with special health care needs for making a difference,” she said.
Schindler says that people who do not have someone in their family with special needs right now — or who do not have special needs themselves — should not think that losing IRIS will have no an impact on their lives.
“We really need to stop and think about this, because in the future, we will become senior citizens, or we may have a loved one that will need in-home care, and we may wish that IRIS could be an option for ourselves or for a loved one,” she said.
“IRIS provides choices to meet individual needs, and to reach his or her goals. The word ‘individual’ is key. Life is not ‘one sizes fits all.’ We are all individuals. I feel our governor is not taking this into consideration. People with special needs want what we all have, Schindler said.
“They want to gain independence. They want guidance. They want to have choices on how to live life to its fullest. They want freedom,” she said.