DDadvocates Interim Newsletter #1 January 2014

From our house to yours: Best Wishes for Peace and Joy in the New Year.

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 service delivery model and there is already a significant amount 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!

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 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 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.
and now at ddADVOCATES.com

DDadvocates Interim Newsletter #2 January 2014

Continuing from our last Newsletter, we are communicating another family’s story; this one on their daughter’s struggle to obtain services that are not authorized by CLS but are covered by Medicaid. This story like the others is important for several reasons:
·        Skill building services are covered by Medicaid; MCPN’s are to provide skill building services; if for some reason, a particular MCPN does not contract with a particular program, it follows that it must provide services through a comparable program.
·        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.
·        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!
·        Multiple MCPN’s exist in Wayne County in order to provide individuals with choice. But when blind adherence to ideologies and favorable partnership arrangements become more important than the needs of the individual, the MCPN’s fail their clients. This problem goes away when MCPN’s collaborate to meet unmet needs by properly funding existing programs and encouraging development of new strategies to meet emerging needs.

Here is the Seiter family story:
 We are Mark, Barb and Kara Seiter and on behalf of Kara whom we have Power Of Attorney. We are writing to express our frustrations with the Mental Health System.
One of Kara’s decisions is to attend The Pep Center in Livonia after we all extensively visited and engaged in worksites with MANY post school vocational programs for 2 years. CLS is our provider network and does not contract with The Pep Center so we and Ms. Heath our transition specialist met with Mr. Dehem and Mr. Newman in regards to Kara’s decision.  We tried arranging for Kara to attend as a “pilot program” but it led to issues between CLS and The Pep Center on the staffing agent packet, credentialing and what information Ms. Scaglione, owner of the PEP Center, was expected to provide. Ms. Scaglione was told by Mr. Newman that CLS would not consider PEP as a formal contract provider and yet CLS wanted Ms. Scaglione to provide extensive information about her business, which she deemed unnecessary if PEP and CLS were only going to enter into a small, direct hire pilot project; for this reason, Ms. Scaglione refused to provide the requested information. This led to CLS still not contracting with The Pep Center.
Kara completed school in June and it was now the middle of August and Kara’s needs still were not being met. We knew Kara’s transition from school was going to be a big change so we did set aside some money and decided to uphold Kara’s decision and pay out of pocket for The Pep Center. But WE CANNOT AND SHOULD NOT have to continue to pay out of pocket for services that are listed in the Medicaid provider manual.  Kara wants to go to the PEP Center for skill building services.  CLS will not let her.  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”.
 We are very discouraged with CLS’s policy not to contract with PEP and how much control they have over consumer choice. That’s A LOT of power for a small handful of people to have regarding how our tax dollars are spent. Everyone’s vision is to have the best for our adults but we feel CLS has their vision and wants everyone to fit into it. They have this pegboard with circles but each one of our adults is different. Some are square and some are rectangles like Kara and they just don’t fit into that board. It’s not a one size fits all. They need to listen to the voices of our young adults, the parents and caregivers and look at the actions they are taking. Families who like PEP are leaving CLS and going to Synergy  because this network contracts with PEP.  However, if our family goes with Synergy, we may lose our direct hire staff because we are not sure that Synergy will allow us to direct hire staff for Kara, they may say we have to go through an agency.  This would further damage Kara’s transition out of school as the direct care staff we have now through CLS is excellent, and is the job coach for her volunteer sites we have set up for Kara.
 We are hoping with the new Wayne County Community Mental Health Authority things might change. We don’t understand WHY WE WOULD HAVE TO SWITCH PROVIDERS TO HAVE Kara’s person centered plan into place.  We should be offered ALL the vocational programs AND be able to direct hire staff for Kara no matter who our provider network is.   We are newcomers to this system only 6 months in and we see a lot of good and potential in some areas, yet we are beginning to see a lot of politics and loop holes which is a shame when we are dealing with peoples’ lives and well-being.  We understand the Community Mental Health system wants everyone included into the community and we agree but it has to be a meaningful trip not an unproductive outing into the community just to satisfy agency policy or political correctness.  Kara has time in the community with her direct hire staff 2 days a week doing volunteer work at job sites.  A third day of the week is spent on community outings. The other days of the week, we pay for Kara to attend PEP to receive skill building services including: washing dishes, wiping tables and chairs, vacuuming, fine motor, social skills, fitness, micro enterprise participation, hygiene and more. These are skills that shouldn’t stop just because she “completed” school.  Kara will need to learn these ongoing skills for the rest of her life if she is to continue to grow and increase her participation and work skills in the community. 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. We have also emailed and sent a letter in regards to our situation to Mr. Tom Watkins the new Wayne County Mental Health Authority and did not get a response.
We also have concerns on the way CLS interprets the Medicaid manual on respite with The Pep Center for “Fun Fridays”. As of January the Medicaid manual states no respite at a skill building facility.  Pep Center is a skill building during the day but on Friday nights it’s a place for our sons and daughters to gather together and just have fun make a craft, listen to music eat some popcorn and meet new people.
We never anticipated it would be this hard for us to help Kara get the services she wants!!!!
                                                                                  Mark, Barb and Kara Seiter
Thanks to the Seiter family for sharing this story; each of us needs to understand what’s happening in order to better advocate for ourselves and those we care for. In addition, as the new Authority roars to life, it is important that these issues of unmet needs, administrative dogma and in-efficiency not be perpetuated in the new regime.
What’s your story?

Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
and now at ddADVOCATES.com
DDadvocates Interim Newsletter #2 January 2014

DDadvocates Interim Newsletter #3 January 2014

 This is the 3rd January Newsletter in a series that includes the story of a family struggling to find adequate services for their children as they transition from supports provided by the school system to supports provided by the mental health system.  

 After being the near sole contributor to this Newsletter for five years, it is encouraging to me to have these families speak up not only on behalf of their children, but really on behalf of all of us. In my mind, these families are current day heroes of the Mental Health System. When we launched
http://ddadvocates.com in 2009, we included this statement:
“All the members of a process are responsible for its success. We Family, Friends and other Advocates to a large extent have been silent unless the individual(s) we know and love have been threatened. In effect we abdicated our responsibility to the ‘professionals,” or to the “system.” It was easier to concentrate on what we needed rather than on the entire service delivery system. Had we been more vigilant, possibly some of the issues we are dealing with today could have been eliminated.
Either way, it NOW is the responsibility of EACH of us to look out for and speak up on behalf of ALL of us”.
 On several occasions over the past years, persons have shared issues in confidence which they requested not be attributed to them. I have encouraged these persons to raise the issue themselves and to use the protections of the system but there is a hesitancy to speak up and fear of retribution. Providers fear retribution from MCPN’s and families fear it from both MCPN’s and Providers. My hope is that these stories will encourage others with good stories as well as stories of program deficiencies to share their travels as well. Why? Because we need to be informed participants if we want a healthy service delivery program for each of our families, entry level through end of life.
Some of the words I hear these days are:
·        “Do no harm.” But if you refuse to fund a program that is providing quality service AND provide no alternative which meets YOUR vision in its place, you are doing harm.
·        “Be data driven.” I’m reminded of the auto companies who nearly went bankrupt building cars designed by  ”car guys.” It wasn’t until they began listening to focus groups of consumers that overall quality, unexpected surprises, and even heated seats began to replace 400 horse power engines in product offerings. The message is: “Be careful of what data you measure.”
·        “We’ve heard it before.” This is reference to some of the arguments clients and their families raise in support of day programs and larger homes. The allegation is that families used these same arguments against closing institutions. What is forgotten here is that without family leadership and participation in the process along with intuitive and dedicated professionals, Michigan would never have been on the leading edge of providing quality lives for its disabled citizens. Unfortunately, that parental partnership and common sense is too often lacking in today’s service delivery model.
This week’s story comes from a family who knows their son and his needs AND have researched existing programs AND have put their own time and treasure into designing a support process appropriate for their son AND have been turned away from the best setting for that process.
Here is the Whalen Family story:
Our son Michael has severe multiple disabilities and medical issues.  In June he will age out of a wonderful program at Cooke School.  He currently enjoys the latest in equipment and the best teachers and therapists.
Mike thrives on going to the same place every day and interacting with a group of very familiar people.  He would not do well wandering the mall with one caregiver, and the amount of equipment he requires makes traveling from place to place totally impractical.  Researching the world of adult day programs we found that the small amount of money they have to work with barely covers bricks and mortar and staffing, and there is nothing left for the equipment and programming Mike enjoys in his current program.
Five years ago we started a 501(c)3 to address this problem.  We have raised funds and gathered volunteers to enhance day programs that serve the SXI population and try to provide some of what the adults once had during their school years (see www.connectus-livonia.org to find out more). After touring area programs, we found CWO in
Canton to be the most accepting of people as involved as Mike, and we plan to send him there when he is finished with school.


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.
Our current fear is that CMH will be swayed by CLS and not want to support day programs.  While it is true that day programs may currently be lacking, what they need is more support, not to be closed.  Over the past 40 years the special education programs in the public schools have improved tremendously.  Our hope is that CMH will follow the lead of ConnectUs and do the same for adult day programs.
Eileen and Tom Whalen
That’s their story; what’s yours?

DDadvocates Newsletter #4 February 2014

As we’ve said before, 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 restatement of goals and objectives and a reevaluation of the MCPN service delivery model. It will set the course for service delivery in Wayne County for the next generation.

I imagine one of the objectives will be to maintain a robust Recipient Rights Program. But I don’t believe this is the right emphasis. Using an automotive example, it’s like trying to control warranty costs by reviewing repair claims. The right place to avoid claims is in the integrated design, purchasing, manufacturing and delivery process; not at the back end after the damage has been done. 

For social services, if you get program staffing, quality providers, dedicated and effective MCPN and Authority staff in place, you avoid the need for after the fact analysis. This is not an easy task, but it is time to reward and encourage the quality programs in Wayne County and let the others dry up on the vine. 

The challenge is to clearly define and measure quality.

As an example, here’s an unsolicited story from a person who has been on our distribution list from the very beginning. These are excerpts from several  exchanges of mail between the advocate and I:

Advocate: Thank-you for all the work you do.  I have a son in a group home.  Wayne County needs a complete over haul.  Some of the stories I have heard make me cry.  When some staff try to tell managers some of the things happening in homes i.e.:  staff coming in to sleep in four hour shifts, residents left in wet beds... it apparently is ignored because these and many other problems continue.  There needs to be a lot of change….

Response: Thank you. May I use your comments; either with your name, or not? Let me know. I believe there is a level of awareness building and I hope it will make a difference
Yes you may use my comments.  At present please do not use my name.  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.  Again thank-you for all the work you do
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" 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.   

 This is a perfect storm of unacceptable forces; the client and his family are tied to a home, fellow residents, some good staff and a community that they know. On the other hand, they are faced with 
 ·         At least one lying and dishonest staff,
 ·         probably a home manager and definitely a provider who are unwilling to take on hard cases and do the correct thing
 ·         a MCPN social worker who seems oblivious and chooses not to get involved
 ·         a MCPN network that does not clearly define expectations for quality service and appears to operate with a “no news is good news” attitude
 ·         and an attitude at the Authority that says that if it is not on the right form and irrefutable, nothing gets done.
No amount of double checking can overcome a double faced staff, or an administrator or provider that puts themselves in front of the needs of their clients.So, situaions that should be taken care of on the first phone call are allowed to snow ball and become systemic.

 What can we do about it?

 I suggest we start by telling persons in common language what their rights are and that anyone who does not step forward and vigorously support those rights will no longer be a part of the system—whether it be a staff, an administrator, a provider, a PA, a fiduciary or an employee of the MCPN or of the Authority.

At our house, every year we get a blue Rights Booklet from each agency providing Deb’s supports. In our case, Deb is 47 and I imagine we’ve been handed at least 50 of these things. But do you know that I cannot remember anyone  putting the book down and explaining in plain English just what those rights are?

Understanding that the Rights of persons receiving services create responsibilities for everyone in the process from individual staff through the provider network and all the employees of the MCPN’s and the Authority, we propose the following draft:

Bill of Rights for Persons with Developmental Disabilities.
You have the right to be respected and to live in a safe, healthy environment. If this is not happening, you have the right to demand a change, or to move to a different setting which you choose.
You have the right to choose where you live and to choose your room mate(s). If you are not happy with where and whom you live, you have the right to demand a change or to move to a different place which you choose.
You have the right to decide what kind of work or skill building program is best for you. If you are not happy with the program you are in, you have the right to change to a different one you like.
You have the right to choose from an array of services and to choose those you are most comfortable with whether that be fully immersed in the community or in a more congregate setting
If you are not happy with where you live or work or with service from any staff, provider, personal assistant, MCPN or fiduciary, you have the right to demand improvement or to make a change which you choose.
When clients understand their rights and begin to switch between MCPN’s and between residential and vocational providers, the inadequate performers will begin to be left behind. This natural selection is already happening in Wayne County as we see the STEP Northwest facility with a waiting list and so many positive stories about the PEP Program.
I believe that if we spent more time in this county listening to the wants and needs of those we serve and less time telling them what our lawyers or accountants say is best for them, we’d have a much more effective, less costly service delivery process
Furthermore, I’d be much more impressed if our paid advocates would work with Lansing and Washington to protect some of the quality programs we have in Wayne County rather than trying to close them without presenting viable options suitable to the clients who are asking for service!
Question of the day: What is an advocate?
Answer:  An advocate is a person who stands alongside an individual who is disadvantaged, and speaks out on their behalf in a way that represents the best interests of that person. The aim of advocacy is to bring about beneficial outcomes in a way that enables each client to retain as much control as possible over how it is carried out.
Second Question of the Day: What do you call an advocate that puts Budgets, Attorneys and Autocratic Dictates ahead of the interest and desire of the people he represents?
Let us know your story; there are more to come and each of them is important to each of us!!!!
Next Newsletter will be mid-March. Stay Warm

Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.

DD Advocates newsletter #5 April 2014

We are back from Florida and facing an overwhelming schedule. It is important, though, that I take a little time to encourage you to get involved in the following most important county and state initiatives. You should have already heard about these issues through your MCPN,and residential and occupational provider and advocacy organizations. If they haven't already asked you to get involved, ask them why not.

Detroit Wayne Mental Health Authority
The Authority has been sponsoring a series of community forums throughout the county. There are 3 remaining forums. Go to www.dwmha.com for times and locations; the remaining dates are April 3, 10 and 14. Several of you have told me the sessions are well presented, informative and generally encouraging.

  •  To better understand the structure and objectives of the new Authority, you need to attend one of the remaining sessions. A major change coming up next month will be the rebid of the entire MCPN process.
  •  While you are at the website above, you need to participate in the anonymous survey. Folks, we need to do this. If you have an unmet need, if your MCPN has limited or does not support programs that are important to you, this is the time to speak up.
  • If you do nothing else all year, if you have an unmet need, you must answer question 5 or 7 of the survey and describe what's going on and what you believe needs to change. Volume counts. Don't rely on the other guy. Even if for some reason you can't attend a meeting, make sure your concerns are logged. Just do it!!!!

 $45.0 Million Mental Health Rate Cut for Metro Detroit
Effective October 1, 2013 the Michigan Department of Mental Health cut funding to Wayne, Oakland, and Macomb Mental Health Authorities by $15.0 million each!!! In Wayne County this is roughly 2.5% of the budget. Put in perspective, it equates to 9 days next year that those who receive services including those in 24/7 operations will not be funded. Put another way, it is the equivalent of 9 payless pay days for everyone from direct care through the Executive Director. This issue impacts everyone in the system; those who are employed and those who are served.

The Southeast Michigan Provider Allowance is leading a lobbying effort on this issue and has asked for your lobbying support. All you need to do is register by sending a note to: advocacyandeducationcampaigns@gmail.com

Mental Health Needs a Seat at Governor Snyder's Table
If you haven't seen it, take a look at the excellent article by Mike Vizena in a recent issue of The Dome http://domemagazine.com/vizena/mv013114.Take a lead from Mike and ask the Governor for an invitation. Hard copy, email or tweet will do.

We'll resume our regular Newsletters with new stories and comments on some of the previous ones shortly.

In the meantime, let's remember we are all in this together; collectively, we know what it takes to provide excellent support services for persons with developmental disabilities. But, unfortunately, no one knows what's in our heads unless we fill out surveys, sign up for advocacy groups and stay in touch with the people who represent us in Lansing and the people responsible for delivering services in the County.

Think how good things can get if we stay engaged!

Do good; stay warm!

Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
and now at ddadvocates.com
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