By LeAnn R. Ralph
NEW AUBURN — By all accounts, families with autistic children and other people with disabilities say the IRIS program is effective, saves money and allows them to make decisions about their own long-term care.
Governor Scott Walker’s proposed 2015-2017 budget eliminates IRIS, which stands for “Include, Respect, I Self Direct.”
About 30 people attended a listening session 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), and many of the people at the listening session spoke about what the loss of IRIS would mean.
Several people also talked about the governor’s proposed budget eliminating Aging and Disability Resource Centers (ADRCs).
Under the IRIS program, participants are given a budget and are then able to hire their own caregivers and purchase other customized goods and services that allow them to function in their own homes and in the community.
About 12,000 people are enrolled in Wisconsin’s IRIS program.
The governor’s proposed budget would eliminate IRIS and would expand Family Care.
While Family Care does allow for some self-directed care, it is more limited and less flexible than IRIS and would be more expensive than IRIS, said several people at the listening session.
One woman said her daughter will turn 38 in May, but that she had not been expected to live past the age of two.
Under Family Care, she was told what she would be allowed to do and that part of what she would be allowed to do would be to “stay at home with mom” when a jobs program was no longer available for her, the woman said, noting that her daughter’s ability to do any kind of a job is limited.
Her daughter enrolled in IRIS and was able to hire a caregiver at much less cost than the job coach needed for the jobs program, she said.
The woman noted that because her daughter’s disability and because she is on oxygen, it is sometimes difficult to find respite care.
Another gentleman who owns an adult family home in Chippewa Falls said that under Family Care each of the residents at his home would need their own care team of four or five people, but that under the IRIS program, the residents could have the same team.
When four or five different people per resident are required to make regular visits to the home, it creates a big disturbance for residents, he said.
“I can’t see how you could do it any better (than IRIS),” he said.
Another man said he had taken early retirement from his job to care for their autistic son, who is now 26 years old.
Under the IRIS program, people come in to do an evaluation and develop a budget, and then people can be hired for services, including family members, the man said.
The ability to hire family members as caregivers is crucial because as someone with autism, his son does not like to be touched, and hiring someone outside of the family creates all kinds of problems, he said.
Under the Family Care program, the man said he was concerned that they would be encouraged to put their son in an adult daycare facility.
“My son is a six-foot 200-pound two-year-old who has tantrums,” he said.
Another woman pointed out that disabilities do not know any bounds: Down syndrome, cerebral palsy, autism; a wife slips on the ice; a husband falls off a ladder; a son is in a car accident; a father has a heart attack.
People never know when they or a loved one will need services, she said, noting that the governor’s proposed budget also would eliminate the ADRCs.
The IRIS program and the ADRCs both provide jobs in a community and provide the services that people with disabilities need, the woman said, adding that she was concerned the programs for those with a disability or the elderly would be turned over to “for profit” managed-care corporations that only care about making a profit and do not care about the well-being of the people who need services.
ADRCs provide resources in one location for the elderly and for people with disabilities.
For example, an elderly person who needs help signing up for Medicare Part D or deciding which benefits program works best for him or her can seek help from benefits counselors at their county’s ADRC.
“IRIS eliminates the middle man. Why are we eliminating IRIS?” said Christina Schindler of Colfax.
Senator Moulton said several times during the listening session that both he and Representative Larson understood their constituents’ concerns about IRIS, long-term Family Care and the ADRCs.
“We will continue to investigate to see what can be done … We understand the IRIS concerns and will do our best to address them,” Senator Moulton said.
According to Disability Rights Wisconsin, the governor’s proposed budget reduces funds for Family Care through 2017 by $14.3 million and reduces funds for the personal care program by $19 million.
According to a statement from the Wisconsin Department of Health Services, DHS would have to seek federal authority to make changes to IRIS and Family Care.
According to the DHS website, the IRIS program began in July of 2008, and there are approximately 13,000 participant-hired workers in the program.
IRIS is an authorized program under Medicaid Home and Community Based Services of the federal Social Security Act. IRIS was created in response to consumer demand and a directive from the federal Centers for Medicare and Medicaid Services to provide individuals eligible for managed long-term care in Wisconsin to have the opportunity of choice in long-term care program enrollment, according to the DHS website.