To whom it concerns,
I am writing to give feedback regarding the proposed implementation of CMS mandates which are a misreading of the American with Disabilities Act. I am asking that the full array of services stay protected. People in “Sheltered Workshops” are not being paid below minimum wage. Their work is pro-rated minimum wage – a very important distinction.
I will use the impact on Rosa Miriam Palmer Spellman as an example of the importance of my view. Rosa has four ongoing challenges. Physically, she has cystic fibrosis which requires her to perform nebulizing treatments involving a vibrating vest three times daily; she does two at home and a twenty minute treatment over the lunch hour at work. Rosa was basically non-verbal in Nicaragua until her adoption. Hence, she learned to speak a second language before being able to speak her first language. Communication problems persist.
Rosa has cognitive and emotional challenges as well. Since Rosa almost starved to death she has mental limitations. She was in an orphanage for two years and has anxieties and a need for structure and controlled environment. As an example, she was a Special Olympics bowler; she was told she could not bowl because she did not have her medical forms in. Because of what she interpreted as rejection, she has refused to bowl or participate in any Special Olympics event since. A stable work and living environment is critical for her life. When she gets upset, her tendency is to stop doing her treatment. The last significant occurrence of this behavior was in Sept. 2002, when she did not do her treatments for 3 days. This resulted in a hospital stay for fourteen days and the loss of some lung capacity.
It is incomprehensible to imagine the negative outcomes of the changes that CMS has ordered to be made by the Wisconsin Department of Health. At VIP every effort has been made to incorporate Rosa into the community. Each year for 13 years we have discussed with her and VIP representatives how to involve her more in the community. She volunteered in nursing homes, Salvation Army, Old World Wisconsin. She tried working as a food sample distributor but could not process and understand questions people gave her. VIP Services is the least restrictive environment for Rosa. This is the best environment for her to grow and mature. She loves the people at VIP Services and the stability those people provide. She feels VERY safe and is therefore very happy and willing to go to work each day.
Please do whatever you can do to either change these draconian rules, Ms. Edwards and Mr. Lollar. If that is not possible, please Governor Walker do what the Governors of Massachusetts and New Jersey have done by rearranging the funding; please ensure that Sheltered Workshop Sites that include only “disabled” continue to be funded with funds other than CMS funds. It should be noted that the Governor of Mississippi has written an executive order protecting such programs.
Rosa was adopted at four and a half. At that time she was mute, and withdrawn. We have seen her grow to display spurts of outgoingness. For 30 hours a week she works and continues to grow as she feels lovable and capable. To decry segregation is absurd. She is not locked in an institutional setting. In all kinds of ways, the wider community comes and flows in and out, and interacts in this healthy, cooperative, problem solving, production setting. She is learning to live compassion; she has friends with whom she can communicate caring in a myriad of ways: verbally and nonverbally. In the rest of the 138 hours a week in the community, her parents and other guardians help her implement the skills she is developing at VIP. Over and over the options have been presented to Rosa. She has chosen VIP to be her base. We hear all this talk about choice. This is Rosa’s choice. Please do not take this crucial component of her life away.
Dona and Tom