These are excerpts from the May 2014 Newsletter from Ed Diegel of DDadvocates of Michigan. Ed is responding to a survey that went out to people who receive services through the Detroit/Wayne County Mental Health Authority (DWCMHA). The questions are specific to Wayne County, but many of Ed's answers apply more generally to people in other parts of Michigan.
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...Areas of concern:
- The current Recipient Rights process does not require [providers or provider networks] to make systemic improvements. If a [provider] refuses job supports to an individual, and the RR process requires the individual to be served, the [provider] is under no obligation to serve all the others they have refused but who have not raised a claim.
- Currently the Authority relies on [provider networks] for performance metrics; these metrics tend to be quantitative not qualitative. The only way to measure success or failure is for the Authority to have its own set of metrics collected from the persons being served. In today’s world we have the absurd situation of a senior [provider network] executive offering a family to reconsider its refusal for day supports IF the family agrees to not submit a rights claim ie raise the issue with Authority...
- CLS [Community Living Services] is allowed to take a ‘high ground’ stance against congregate settings…(avoiding or minimizing funding for workshops and other settings like the PEP Center) but is not required to develop and support meaningful options...
- I understand the political and philosophical posture to reduce sheltered workshops and AFC settings but it has to be done with the understanding that this may be done for persons who have the ability and the desire to move into less restrictive settings. I know persons in these settings who love where they live and work and it should be their choice to stay or to move on, regardless of how many of their friends live or work in the same building. Everyone should have the right to try something and have it succeed or fail, but if they have no choice in the trying, or in the staying, then it is not a right at all—it becomes living according to the will of another which becomes the most basic of concerns. [emphasis added]...
- I challenge the [CMH] Authority and the [provider networks] to quit pontificating on these issues and to start creating the environment that we want for the people we serve. This environment needs to include a full range of supports – required for each person from the most needy to the most independent. Don’t defund and push people out of workshops, draw them out with better more successful programs. In the meantime, make the workshops the best they can be for the persons using them. [emphasis added]
What suggestions do you have for the Detroit Wayne Mental Health Authority as we move forward?
Operate in such a way that in 10 years when your grandchildren ask what you accomplished in your tenure, you will be able to say that “I listened to the persons with developmental disabilities and their families and acted accordingly.”
Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com
and now at ddADVOCATES.com
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| Winter Extended |
Ed Diegel, a parent from DD Advocates of Michigan, has been covering problems with the service delivery system for people with developmental disabilities in the Detroit/Wayne County area of Michigan for a long time. Recently, he has sent out email newsletters that include family testimonials to illustrate the problems that families experience. It is refreshing to see families willing to come forward to tell their stories. Experiences shared among families attempting to find appropriate services for their loved ones make us all feel less isolated and and a little less frustrated by the process.
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 ddadvocates@gmail.com . The newsletters are also posted on the PEP Center Website.
This is a slightly edited version of the first of three email newsletters for 2014 from Ed Diegel at ddAdvocates:
One of the major concerns facing the Wayne County Community as we enter the New Year is the launch of the new Detroit Wayne Mental Health Authority. This launch will include a reevaluation of the MCPN [Managers of Comprehensive Networks - service provider networks] service delivery model and there is already a significant amount of political posturing taking place on behalf of the MCPN’s. In addition, there will ongoing struggles to balance resources between programs for persons with substance abuse, mental illness and developmental disabilities
One of our roles is to be sure that whatever the new service delivery model looks like, it is measured by qualitative metrics concerning the real needs of individual people; not by blind ideology, one size fits all thought processes or rules to simplify administration.
One of the real short comings of the current Recipient Rights and Medicaid Appeal processes is that they treat each short coming as an isolated instance and have no provision for enforcing systemic change. If 5 of us filed successful claims around the same issue, there is nothing in place that assures that the 6th person will not have to go through the same process to receive the same services. In a customer driven business activity, the organization responsible for the Rights or Appeal violation would be responsible for fixing the process for everyone, not just the individual who happens to be vocal and effective in making a case.
There is no mechanism in the current process -
- for sharing and embellishing what is good --there is a lot positive that needs to be given recognition and nurtured
- for pointing out what is systemically frustrating, wasteful and wrong
- for gathering data on unmet needs as perceived by individuals rather than by the administration
- and most importantly for publishing what we have done as individuals, family members, staff and administrators to obtain appropriate services for ourselves and for our loved ones.
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. And, of course, until there is organizational recognition of our issue, there is no administrative incentive to provide funding for it! [emphasis added]
I have been approached by a group of families who feel that their family member’s needs for effective programs are not being met. I asked them to share their stories so we can all learn from them and possibly provide some assistance and get some organizational awareness within the new Authority. Possibly these first stories will encourage you to share your good news stories or stories of unmet needs or stories concerning battles won and lost in today’s process.
Here is the first of the stories; thanks to the Fosgard family!
I am writing this letter on behalf of my son, Cory Fosgard. Cory is a 24 year old young man who has Down Syndrome. He is severely cognitively impaired and nonverbal so his father and I are his voice. We are blessed to have Cory in our family and plan to care for him for the rest of his life. As he is aging out of school soon, we are planning for his future. We are very concerned about the limiting of choices for Cory.
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 [a Wayne County provider network] 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.
We have begun the process of switching to Synergy [another provider network] because they will allow Cory to use his dollars at the Pep Center. It is unfortunate that we have to go through this because CLS refuses to listen to the people their decisions affect. It is my hope that in the future people making policy for the developmentally disabled will truly listen to the people they serve.
Debbie Fosgard
Let us know your story; there are more to come and each of them is important!!!!
Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com
and now at ddADVOCATES.com
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| Koi Pond |
I don't care what the groundhog did yesterday, the prospects for spring anytime soon look pretty bleak from here. The only relief from the cold and frequent sub-zero temperatures came last week with a day or two with the temperatures rising to around freezing, adding freezing rain to the snow pack along with more snow.
Ed Diegel, from ddAdvocates of Michigan, has been sending email newsletters to people with developmental disabilities and their families to inform them of developments in the Detroit area and the new Detroit Wayne County Mental Health Authority (DWCMHA).
Before I get to Ed's news from Detroit, here is an explanation of the area's conversion from a Community Mental Health agency controlled by the Wayne County Board of Commissioners to an independent mental health authority with six members appointed by the Mayor of Detroit (or the Emergency Manager) and six appointed by the County Board of Commissioners. Two of the appointees must be consumers of mental health services. [Whether the switch to a mental health authority is a good idea is a topic of dispute among mental health professionals, consumers of services, and others affected by changes in state law in 2012.]
According to an article in Crain's Detroit Business, "Wayne County agency begins conversion to mental health authority", 9/25/13, the conversion began officially on October 1, 2013: "As the nation's largest county mental health organization with more than 100 employees and a budget of $640 million, the Detroit Wayne County Mental Health Authority funds five managed care provider networks that serve 74,000 people with mental health and other developmental disabilities." Tom Watkins, former state school superintendent from 2001 - 2005, is the new CEO of the DWCMHA.
Most of the agency's funding comes from Medicaid. No one knows exactly how the agency will be impacted by Medicaid expansion, but it is likely that it will be significatnt: "On April 1, Michigan will begin enrolling an estimated 470,000 additional people eligible for Medicaid. Some 300,000 are located in Southeast Michigan. Studies have shown that one in five people have some degree of mental health problem", according to the Craig's list article.
According to the Detroit Wayne County Mental Health Authority website, the DWCMHS "...is responsible for managing specialty services for Consumers with or at risk for serious emotional disturbance (SED), severe mental illness (SMI), developmental disabilities (DD), substance abuse, and MIChild beneficiaries. The Agency manages a full array of specialty mental and substance abuse services through contracts with Managers of Comprehensive Networks (MCPNs), two Substance Abuse Coordinating Agencies, and other contractors."
This is a slightly edited version of Ed Diegel's ddAdvocates newsletter from November 2013:
We have been slow to acknowledge the new Detroit Wayne County Mental Health Authority and to welcome its new leader, Tom Watkins. We should all do this as birth of the new Authority represents a first step away from complaints of bad politics and county mismanagement of the old Detroit Wayne County Mental Health Agency.
The new organization is barely on board and the State has announced steep cuts to the Wayne, Macomb and Oakland Mental Health Budgets for the 2014 Fiscal Year which began October 1, 2013.
For Wayne County the cuts are $15.0 million. So much for the State commitment to one of the most impoverished areas in the country. Macomb and Oakland [County] cuts will be 11% and 7% respectively. The cuts effective October 1, 2013 were not announced until September 27, 2013! This timing comes from an administration that wants to run the state like a business. No successful business does such poor planning that it announces policy shifts and budget actions of this magnitude 3 days before a budget cycle. The rationale for the cuts is that Wayne, Oakland and Macomb receive a disproportionate share of the state’s Medicaid dollars and therefore these reductions followed by incremental 5% reductions each year over time were put in place. There is no attempt here to measure the disproportionate concentration or severity of persons served, or differences in cost of living or other factors that a reasonable party might use. Furthermore according to one analysis, there is within the plan also disproportionate reduction of funding for persons with Developmental Disabilities.
To my knowledge, this is not a legislative action—the State Department of Mental Health led by Mr. James Haveman is responsible for this action. Furthermore, it is of such significant importance that the Directors of Mental Health in the three counties sent a joint letter of protest to Lansing—hopefully this is a sign of a new era of cooperation flowing from
the new Authority...
To receive Ed's ddAdvocates newsletter, email Ed at ddadvocates@gmail.com .
