Friday, February 28, 2014

Coalition for Community Choice : A unified voice for increasing housing choices for people with disabilities

This is from the Madison House Autism Foundation website, encouraging participation in a new coalition of groups supporting a broad range of options in housing choices for people with disabilities.

[Madison House Autism Foundation is a 501(c)(3) organization that was founded to identify the lifelong needs of adults with autism and through education, awareness, and advocacy, fill those needs.]


Voices Uniting: Coalition for Community Choice

The Coalition for Community Choice has come together as a unified voice for increasing options and decreasing barriers to housing choices.

Several years ago, the Centers for Medicare & Medicaid Services (CMS) released a proposed rule change that included changes that defined what settings people with disabilities could use for their Home & Community-Based Service (HCBS) waivers, a funding resource that offers people the chance for greater choice of their desired service providers. Ironically, the proposed policy actually restricted options, and the responses to these changes were overwhelming (See LTO Venture’s Choice v Olmstead for a great commentary).

These changes provoked another round of modifications and release for public comment, which, despite previous feedback, continued to include restrictive definitions of “home and community”. The final version was just released, and the CCC is writing a policy brief to explain what these changes may mean for current housing options and the future development of innovative housing for people with disabilities. With almost one million people with intellectual and developmental disabilities still living with caregivers over the age of 60, policy should not be creating any barriers to new affordable housing options.

  • 5 million people have autism or other intellectual and developmental disabilities (I/DDs), but residential placements are only available for 613,000 and barely increasing to meet the current need.
  • Current data shows that there are still more than 200,000 individuals younger than 65 in nursing homes—almost 16 percent of the total nursing home population.
In light of these staggering figures, Madison House Autism Foundation committed to bringing together like-minded people and organizations in an effort to explore strategies to ensure that people with disabilities, not policymakers, have the right to define their own home and community. People, who have found their sense of belonging and purpose in intentional communities, who live and work in farm communities, who are planning to move into an apartment building with “smart home” technology and design strategies for their unique needs, or who choose to live in neighboring homes with their peers on the same cul-de-sac, have the right to live in a home and community of their choice.

If you believe people with disabilities should have the broadest range of affordable and accessible housing options, please contact Desiree at to add your name and/or organization to the growing list of CCC supporters and stay connected for future advocacy alerts.

For more information: see the CCC statement of principles and list of current supporters.

Thursday, February 20, 2014

Hallelujah to the Victors!

I was looking forward to freezing rain this morning, but we are getting more snow. And it is thundering. Blogging is definitely in the forecast, but this distraction will have to do for the moment. -JB

Monday, February 3, 2014

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.
and now at

News about Detroit/Wayne County mental health services for DD : Part 1

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 " 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 .