August 27, 2014
We are the parents of three adopted disabled adult children. Anna is 41 years old and has Fetal Alcohol Syndrome and mild cerebral palsy. Luisa is 37 years old and has Fetal Alcohol Syndrome and mild cerebral palsy. Andy is 28 years old and has Down syndrome, is blind, and has had four open heart surgeries for various conditions and now has a pace maker.
Anna has worked in the community in five different settings: a restaurant, two hotels, the YMCA, and at Goodwill as a volunteer when no paid employment could be found for her. In every setting, Anna required constant cajoling and encouragement to go to work and remain at work. Many days, she would cry to come home. Psychologically, she cannot tolerate any feedback that she perceives as criticism. Anna may have the mental age of a five year old with lesser communication skills, but she recognizes herself as a fully actualized, adult woman and desires the respect commensurate with that position. At CRI, she receives that respect. In the three years she has been at CRI, we have never once had to coax or cajole to go to work or stay at work. She is eager to go to work and comes out smiling every day. Please let it be noted that while at CRI, community based employment was sought at the behest of CHP. In the six month period that Voc Rehab worked with her, they were never able to find any employment for her.
Luisa has worked in the community at two hotels. When she was laid off at the second hotel (that business laid off all their Supported Employment employees), community employment was sought. When none was found, it was suggested that she go to REACH, a local day services program. She was quite happy there, but we recognized that she could be more productive. When the opportunity to work at CRI arose, we moved her there. She never looked back. Luisa has been very successful at CRI, sometimes achieving record setting productivity. Needless to say, her self-esteem skyrocketed.
We want to make the point that REACH is a very appropriate setting for more profoundly cognitively and physically disabled folks. They provide feeding, diaper changing, medication dispensing, and other services that we doubt those folks would ever receive in the local grocery store or gas station. REACH has an important position in the full spectrum of services that need to be provided for disabled workers.
Andy has worked in the community at two different grocery stores. He enjoyed both positions, but he required full support in order to complete his assignments. Andy has had several episodes of collapse with chest pain. Two of those took place at work, and CRI has been so great about getting an ambulance, going with him to the hospital, and following up on his condition. We can trust CRI to accommodate his need to steer clear of the equipment containing large magnets and to ensure that he does not consume any caffeine. Andy has now worked there for four years and he loves CRI. These people are his friends and the folks he wants at his birthday parties and the folks with whom he engages at Special Olympics and elsewhere in the community.
If not for CRI, our children would not be the happy and productive workers they are now. When the weather is such that we cannot make the drive to Chippewa Falls, Luisa cries about missing work. Anna and Luisa’s self-esteem have significantly improved since beginning work at CRI. Andy is happy and safe. This place provides them dignity and purpose. Without CRI, all three would most likely be at home.
The disabled, just like the rest of us, are individuals for whom a one-size-fits-all solution doesn’t make sense. They need the full array of employment and residential service options to meet their needs. Facility-based vocational services must be protected. Mississippi, Massachusetts, and New Jersey have listened to the voices of disabled folks, their parents and guardians, and community members. These states have kept the full array of employment and residential services intact. Please add Wisconsin to this list by allowing Medicaid funding to be used for prevocational and day services provided in facility-based settings.
The DHS plan is not complete because CMS has not provided states with the sub-regulatory guidelines for employment settings. When the guidelines from CMS arrive we, the public, should have another 30 days to review and comment.
Thank you for considering our concerns.
Katie and Jerry Kroll
Parents and Guardians