As Ed says, in his first newsletter of 2014, "Without this exchange of stories we are easily treated as individuals with bothersome problems rather than as partners in a process that needs to be corrected; we end up feeling marginalized and being treated as if we are the problem rather than part of the solution…"
One theme running through the family testimonials is the insistence by Community Living Services (CLS), the largest provider network in the Detroit area, that clients adhere to the organization's ideological principles in selecting services, rather than allowing the needs and preferences of individuals and their families determine the services provided. While other agencies willingly support individual choice in skill building programs, sheltered workshops, and day programs, CLS has determined that these programs are off limits and not sufficiently integrated into the community, even though they are services covered by Medicaid. Many of the complaints have to do with the PEP Center in Livonia that provides services that CLS refuses to pay for, although other provider networks are more accommodating.
Ed says, "The PEP program has thrived over the recent past. Starting off in rented space on Five Mile it is now in its third building; each of the moves was required in order to support growing enrollment. It is the only day program that I consistently hear positive support for; admittedly, I travel in a small circle, but the observation is valid. They are doing something different to maintain enthusiasm and yet the largest MCPN in the county refuses to contract there."
This is from the Fosgard family:
"Cory has attended exercise class and other opportunities at the Pep Center in Livonia. The staff is loving, caring and professional. They treat Cory with respect, and he enjoys his time there. I had wanted to use this center for Cory’s respite dollars and for work opportunities after he graduates. Unfortunately, Community Living Services will not allow his dollars to be used there. They do not feel the program fits their 'vision'. I believe their slogan, 'Your life your way' is hypocritical. The life Cory enjoys is being denied by people who do not know him, or what is best for him. Programs for persons with special needs are not one size fits all."
Ed comments: "The whole concept of Self Determination is to allow individuals to live where and with whom they choose and to spend their support money on the programs they believe will be most beneficial. In this environment an individual is allowed to hire support staff, choose a home to live in (as long as it meets certain CLS guidelines), budget home and food and entertainment dollars but then be told that, empowered with all these other life choices, they are too inept to choose an appropriate skill building program!"
From the Seizer family:
"…CLS will not let [our daughter participate in the PEP Center program]. This is in direct opposition to the slogan on their business cards which says: 'Your Life, Your Way'. That’s not what Kara is experiencing as a CLS consumer, she is being asked to set up her life 'CLS’s Way'…Also by forcing the family to change providers to get the pep center services, [we] will have to discontinue working with staff who have worked very successfully.
"It also is not healthy for Kara to be with a one on one direct hire person 5 days a week. She needs and wants the socialization and friendships in her life. We would like to stay with CLS and not have to switch to Synergy but in April it will be a year and it seems we are advocating but no one is listening."
From the Whalen family:
"This past year we have heard much about CLS and their push to be rid of day programs. We originally joined CLS because their motto was 'Your Life, Your Way.' Because their current philosophy is changing to your life, their way, we are in the process of switching Mike to Consumer Links."
[Wayne County residents having problems with Community Living Services can expect little help from the state's largest advocacy organization for people with DD, The ARC Michigan. The philosophy of CLS is identical to that of our state ARC. This is not surprising when one realizes that the Chairman of the CLS Board of Directors is Dohn Hoyle who is also the Executive Director of The ARC Michigan. This presents a conflict of interest when parents turn to the self-proclaimed defenders of the rights of their disabled children only to find the ARC is so deeply entangled with the largest provider network in the area.]
Anonymously, from another parent about heartbreaking conditions in a loved ones group home:
"My son and so many others cannot speak for himself. He cannot tell me if they really went for a walk or if the staff was sound asleep. Saturday I was told my son was going on a specific outing. I know staff at the place where the outing was to be, he was never there. If I say anything, nothing is done. Per management I have no right to know if staff is talked to…
"It has been a difficult struggle. Recently I have made many calls to various people. Unless I want to file recipient rights, they do nothing. I personally know other people who have made calls concerning a group home. No change whatsoever. I had hoped the new 'Authority' [Detroit Wayne County Mental Health Authority] would open their eyes and see that things are not as they portray. It is a sad situation. Thank-you for a least letting me tell you about my concerns."
If you want Ed Diegel to send you his newsletters, contact him at email@example.com . The newsletters are also posted on the PEP Center Website.