More news about Detroit/Wayne County mental health services for DD : Part 2

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