Washtenaw County: Notes on the WCCMH Board Meeting for 5/17/19

I apologize for the use of so many acronyms, but I have tried to make sure to explain what they stand for at least one time for each. This is typical of administrative meetings where the acronyms fly fast and furiously. Their use is an understandable convenience for the people involved, but when they go unexplained, they add to the confusion of innocent bystanders.

Washtenaw County Community Mental Health (WCCMH) Board meetings are usually held on the third Friday of the month from 9:30 to 11:30 a.m. at the Learning Resource Center (LRC), 4135 Washtenaw Ave, Ann Arbor, MI 48108. Board materials for the 5/17/19 meeting are posted on line.

The current financial status report included a discussion of the continuing problem with the mysterious “migration” of consumers [clients of WCCMH] from regular Medicaid that covers DABS - people who are Disabled, Aged, and Blind - to the Healthy Michigan Plan (HMP). HMP is Michigan’s version of Medicaid expansion under Obamacare. Medicaid reimbursement rates to CMH for services are much lower for the HMP than for regular Medicaid. Later in the meeting, this came up again - when someone who has “migrated” to the HMP is re-identified as a DAB, there is no retroactive compensation to CMH for lost funding. Also, when someone is part of the HMP, they are limited to 3 years on that plan and a work requirement has been added for many of its beneficiaries. 

During the Executive Director’s report, an observation was made that 20 years ago CMH decided to “philosophically” oppose group homes in favor of supported living in one’s own or family’s home with an emphasis on “self-determination”. There are still group homes - my sons live in one of them. In my opinion, having decisions based on a philosophical argument from a public agency rather than on individual need is a mistake that is detrimental to people with DD and their families. “Self-determination” as a method of delivering services, can be helpful to people with DD, even for people with severe intellectual disabilities who are under guardianship, but often it is not. It sometimes amounts to a shift in responsibility, from the public agency to the family, for finding and supervising services. Adding these administrative burdens to the already relentless task of caring for someone with a severe disability can be crushing. “Self-determination”, in the usual meaning of having control of one’s life, is not always achievable, especially for someone with severe intellectual or behavioral disabilities.

The Community Mental Health Partnership of Southeast Michigan (CMHPSM) is the regional administrative agency that passes Medicaid funds from the state and federal government to a four-county area in Southeast Michigan. The CMHPSM is improving its administrative functions and is seeking a permanent Executive Director. It is also dealing better with personnel issues than had been previously reported. 

A presentation was given on the Direct Care Worker crisis by CMH staff and Scott Brown from Renaissance Community Homes. A Power Point presentation  accompanied a report called “Deconstructing the Direct Care Service Crisis” concerning a proposal to implement recommendations made three years ago by a legislative workgroup to improve wages and working conditions for direct care workers that was largely ignored by the state. The presentation emphasized how the crisis undermines care and support to CMH consumers and is imposing extraordinary costs on provider agencies causing many of them to go out of business.

I will be discussing these proposals in a future blog post.

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At the June meeting of the WCCMH, there will be a discussion of services for people with developmental disabilities: 

June 21, 2019 
4135 Washtenaw Ave, LRC Room Michigan 9:30-11:30am
Ann Arbor  

Washtenaw County: Disability Town Hall on Impact of the Direct Care Worker Shortage on PWD

Saturday, June 15th, 2019, 10:30 a.m. - 12:30 p.m.

Washtenaw Community College

Morris Lawrence Building, Room 101

4800 E. Huron River Drive, Ann Arbor, MI

"Inadequate wages, tied to Medicaid funding, have created a Direct Care Worker shortage. Provider agencies cannot compete with other businesses that offer higher wages. People with disabilities rely on direct care workers for essential support services to access their communities. This is ours to fix."

Next steps? Actions to take?

Panelists: [State] Senator Jeff Irwin; [State] Representative Yousef Rabhi; Robert Stein - MALA; Laura De Palma - Caring Majority

RSVP appreciated: kgrant@communityalliance.com

Michigan Court of Appeals Upholds Guardian's Right to an Injunction to Prevent the Transfer of her Ward

A recently published decision by the State of Michigan Court of Appeals upholds the right of a guardian to seek injunctive relief from the Probate Court to prevent the transfer of her ward from one facility to another, based on showing that such a transfer would be detrimental to the wellbeing of the person under guardianship.

In re Guardianship of Lisa Brosamer v. Lenawee County Community Mental Health Authority (CMH) Is a case involving Lisa Brosamer who is severely developmentally disabled. Patricia Brosamer became Lisa’s guardian in 2009. Lisa’s mother cared for Lisa in her home from 1961 to 2006, when, due to the mother’s declining health, Lisa was moved into a residential treatment facility. Lisa is severely intellectually disabled and is unable to care for herself.

On Sept. 26, 2018, the guardian filed a petition with the Probate Court to stop a planned transfer of Lisa from one group home to another. Patricia Brosamer contended that the Lenawee CMH proposed transfer would be detrimental to Lisa. Lenawee CMH argued that the agency met the requirements of the law by determining that the transfer from one facility to another would not be detrimental and that the legislature did not intend for a guardian to be able to veto a decision by CMH. 

Lenawee CMH based its case on this excerpt from the Michigan Mental Health Code:

330.1536 Transfer of resident; notice; appeal.

Sec. 536.

1. A resident in a facility may be transferred to any other facility, or to a hospital operated by the department, if the transfer would not be detrimental to the resident and the responsible community mental health services program approves the transfer. [emphasis added]
2. The resident and his or her nearest relative or guardian shall be notified at least 7 days before any transfer, except that a transfer may be effected earlier if necessitated by an emergency. In addition, the resident may designate 2 other persons to receive the notice. If the resident, his or her nearest relative, or guardian objects to the transfer, the department shall provide an opportunity to appeal the transfer.
3. If a transfer is effected due to an emergency, the required notices shall be given as soon as possible, but not later than 24 hours after the transfer.

Probate Court findings

The guardian presented four witnesses, each of whom had a history with Lisa or daily interactions with her and “…might reasonably be capable of opining as to how the proposed transfer might affect Lisa’s wellbeing.” All four concluded that transferring Lisa from her current group home placement would be detrimental.

Lenawee CMH provided affidavits from three people, none of whom had a history with Lisa comparable to that of the guardian's four witnesses. According to the Lenawee Director of CMH, the decision that there would be no detriment was based on unnamed “expert” staff.

The Probate Court granted the injunction against moving Lisa out of her current placement. Lenawee CMH appealed the decision.

Court of Appeals

The Court of Appeals stated that “Although respondent [CMH] frames its argument on appeal as one regarding statutory interpretation, respondent’s [the guardian’s] argument actually concerns the probate court’s factual findings” of detriment to Lisa.

On the CMH agency's responsibility to other clients, the Court stated:

"Being sensitive to the fact that respondent must walk the tightrope of balancing the needs of consumers—sometimes against one another—with the limited resources that it has, MCL 330.1536 is clear that respondent cannot transfer a consumer if the transfer would be detrimental to that consumer. Thus, the relative hardship on respondent that the injunction imposes is no greater than the hardship imposed by MCL 330.1536 itself. Contrarily, the hardship Lisa may endure if she were to be transferred to the detriment of her wellbeing is significant. [emphasis added] Additionally, although third parties and the public have an interest in respondent’s ability to transfer consumers and balance its resources for the benefit of the community, Lisa has the right to be free of detrimental transfers, and with respect to MCL 330.1536, the interests of third parties in transfers that might be detrimental to Lisa are not relevant to whether the transfer is permissible; and, we note that nothing bars respondent [CMH] from seeking to have the injunction lifted if a transfer that would not be detrimental to Lisa’s wellbeing arises. Finally, the injunction will not be impractical to enforce.

“Based upon the above factors, and considering there was no adequate remedy at law to ensure that respondent would not be transferred, the probate court’s injunction was not outside the range of reasonable and principled outcomes.”

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This summary leaves out a number of interesting details in this case. 

For instance, at about the same time that Lisa's case manager of ten years retired in June 2018, a new case manager was brought in. This coincided with when Lenawee CMH determined that another consumer needed a bed at Lisa's current group home and concluded that moving Lisa to another group home would not be a detriment to Lisa. The guardian asked for a new case manager, “because [she] could not understand how the case manager could conclude that a transfer was appropriate while being so new and unfamiliar with Lisa.” The Court found evidence that this was true by comparing the testimony of the guardian's witnesses to the affidavits presented by Lenawee CMH.

The guardian's witnesses included:

• Lisa's doctor of 14 years who testified that, considering Lisa's age and disabilities, she lacked the "coping mechanism" to adjust to an unfamiliar setting. 
• A witness who had known Lisa for 20 years and had worked at the home where CMH wanted to transfer Lisa, said the proposed placement was not as suitable and feared that Lisa might have altercations with another resident with aggressive behaviors. 
• The guardian testified that Lisa had thrived at her current placement and had strong bonds with the staff and other residents. 
• Lisa's court-appointed attorney, who had been involved in the case since 2011, indicated that, because of the guardian's "extensive involvement with [Lisa] over the years," she was in "a superior position to any of the other witnesses or affiants know what [would] be detrimental to Lisa."

Michigan’s mental health system is failing many with severe autism

I have two adult sons with profound intellectual and developmental disabilities (IDD) as well as friends who have severely autistic family members. What these disabled populations have in common is that they are difficult and expensive to serve, no matter where they live. Finding appropriate services and residential settings is a relentless and frustrating task for most families, especially when choices are deliberately limited to encourage a one-size-fits-all mentality that promotes the idea that everyone can be fully integrated into "the community".

These stories about severely autistic children and adults have many parallels in the world of severe and profound IDD.

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“Falling through the cracks” is a phrase that is frequently used to describe what happens to people with severe autism when they move from school to adult life without the safety net of services provided by the educational system. This also describes what happens to autistic children, many of whom have intellectual and other developmental disabilities, whose problems are too much for the educational system to handle. They are shunted into a world of psychiatric services that were never designed or intended to help people with IDD. 

Below are summaries and excerpts from two stories featured on Stateside, a Michigan Radio show that covers state and local issues, including struggles with the Michigan Mental Health system. To get the full emotional impact of these stories, listen to the interviews with family members and others on the Stateside Website. 

“They say their son needs to be in a psychiatric hospital. He went to jail instead.” 

By SARAH CWIEK, 2/18/19.

“A danger to themselves or others. That’s the threshold set by Michigan law to put someone in a psychiatric hospital….”

Damiean Odisho has severe autism and is described by his father Douglas as “…a big guy with the mind of a child.” Damiean’s parents have had to call the police to protect themselves from outbursts by Damiean that ended up in physical assault or the threat of physical assault. Damiean has autism and “a host of other psychiatric and special needs diagnoses…He’s on ten different medications.”

The police department in Warren, MI, where the Odishos live, know that Damiean is autistic and has issues with aggression. In the past, under similar circumstances, they have transported him to an emergency room while his mother Malinda petitions Macomb County Community Mental Health to admit him for psychiatric hospitalization. This time, however, the police transported him to the county Juvenile Justice Center, where Damiean was booked and charged with resisting arrest. He was obviously not capable of understanding his offense or controlling his overwhelming impulses, so the court released him to his parents and instructed them to return to the emergency room where they should again request psychiatric hospitalization. That request was inevitably turned down as it had been in the past, at which point the cycle begins again.

Quoted in the article is Sarah Mohluddin, the clinical director of an autism program at the University of Michigan: “I think it’s important for people to understand just how common aggression is in autism…But children who have these concerns with aggression have limited access to outpatient providers, and even more limited access to inpatient hospitalization and psychiatric beds. And there are very few psychiatric emergency centers that really know what to do in terms of assessing these children when they are in a psychiatric emergency.”

David Pankotai, the CEO of Macomb County Community Mental Health, had this to say: “Sometimes a hospital might look at a child who’s on the autism spectrum, and think that the issues are more related to environment and behavior as opposed to a psychiatric condition.”

The experts and the people responsible for providing services seem to admit that we have a lousy system of taking care of children and adults with severe autism who may injure themselves or others; they lament that sometimes there is nothing they can do about it.

Damiean turned 17 this year and his parents biggest fear is that he will end up the adult prison system, like so many adults with mental illness. His mother is left with this thought: “He’s going to have this disability for life. And we just work around it the best that we can.”

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“To find help for her disabled daughter, Michigan mother had to leave the state”
By STATESIDE STAFF, 2/19/19

This story is about a 19-year-old young woman with severe autism who has dangerously aggressive and self-injurious behaviors. In this case, the mother found a program that worked for her daughter, but it was in another state and now she is faced with bringing her adult daughter back with no prospects of finding a suitable residential setting for her in Michigan.

From the article:

Jackie [the daughter] has a severe form of autism.

“…She received a state Medicaid waiver for in-home help when she was around four years old. But Sibley [her mother] says the family struggled to find the long-term care her daughter so desperately needed.

“‘It’s very hard to find staff, especially when there are challenging behaviors involved. Most of the people that we had helping us would quit,’ Sibley said.

“After exhausting her options in Michigan, Sibley found the Kennedy Krieger Center in Maryland, a residential facility that specializes in treating severely autistic children. After a year on the waiting list, Jackie was admitted in March 2018. Sibley says that her daughter has received ‘phenomenal’ care there.

“Kennedy Krieger is typically just a three-to-six-month program. Healthcare providers there, knowing there were few options for Jackie back home in Michigan, extended her stay to over a year.” 

That extended stay at Kennedy Krieger with phenomenal care has been costly for Jackie and her family. The family’s private insurance will no longer pay for it and the family must find an alternative in Michigan. To add insult to injury, Michigan now considers Jackie a resident of Maryland and has said that she is no longer eligible for Medicaid in Michigan. That means that she will be denied a Medicaid Waiver that she has qualified for since she was 4 years old until the state agrees to take her back into Michigan’s Medicaid program. No one is paying the bills right now.

Sibley’s advice for Michigan: “Michigan needs to look at having some kind of facility — I think every state does — so that they can house these children that are not just on the spectrum, but severe cases.” 

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Michigan’s obligations to people with developmental disabilities

The excuse that there is nothing appropriate for these children and adults is belied by the experience of numerous families that have found programs that work here and in other states for people with similar disabilities. That there is nothing readily available in Michigan is to some extent caused by decisions the state has made to no longer support a full range of services and residential options for this hard to serve population.

These stories are especially disturbing, because Michigan’s mental health system is obligated, in its agreements with the federal Centers for Medicare and Medicaid Services (CMS), to provide “medically necessary services” to all Medicaid-eligible people with developmental and other disabilities. That includes the social services and supports that allow people to live in community settings as well as the option of an ICF level of care. Most people with severe autism fall into the category of developmental disability and many also have intellectual disabilities.

Most families do not know that under our our state’s system of Medicaid managed care, Michigan does not allow waiting lists for services for people with disabilities who are Medicaid-eligible. But tell that to the families who are desperately struggling to find adequate services for their disabled loved ones, and they will tell you a different story of delay and denial. According to Michigan’s Medicaid Provider Manual, the mental health system “..may not deny services based solely on preset limits of the cost, amount, scope, and duration of services. Instead, determination of the need for services shall be conducted on an individualized basis.” 

In other states, Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) are one option for this hard to serve population. These are technically institutions under Medicaid law, but the word “institution” has been used in only a pejorative sense for so long that families react with fear and loathing to the prospect of “institutionalization”. The ARC Michigan, the state’s most influential DD advocacy group, had the goal of closing all institutions for many years. It has also promoted the elimination of all congregate settings (settings serving more that 3 or 4 people with DD together in one place) even while it is evident to most people that community care is grossly underfunded and of some of it of poor quality. The ARC’s Website showed a video on the history of Michigan Institutions that was produced as if it were a horror show with creepy music and newsreels of huge institutions going back as far as 90 years.

The 1980’s brought significant reforms to the system of longterm care for people with IDD, including the introduction of Medicaid waivers for Home and Community-Based Services as a companion and alternative to the highly-regulated ICF program. Our most influential disability advocacy groups nationwide have been working for years to eliminate ICFs/IID, even for very hard to serve populations. In Michigan, they have all but succeeded, although when I have brought this subject up at meetings, I often hear that there are still ICF beds in the state, but they are only whispered about and not mentioned in polite company. At the same time, families desperate for appropriate residential settings in Michigan are left with seeking out other institutional options such as hospitalization in psychiatric facilities or placements in group homes that are often not willing to take on the most severe behavioral problems.

ICFs/IID along with innovative intentional communities, group homes, and other family-initiated projects can provide a safe and non-isolating environment that both protects residents and in some cases gives more freedom to the people living there, than could ever be provided in an apartment in a community unprepared to care for people with severe autism and IDD. 

Here is something to think about: Why is it that so many families report that their children have been helped and accommodated in educational programs, but there is apparently an unwillingness or inability by the adult services system to replicate that success when these same children reach adulthood? 

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More blogposts and articles on this topic:

From Washington State: Because We Care -- Beyond Inclusion 

A series of Blog posts - "Stuck in the Hospital"

Another perspective from the mother of an autistic daughter in California: 

"Falling Through Cracks: When The Safety Net for Young Adults With Autism Spectrum Disorder Fails "
By EVA LOEFFLER, 2/25/19

“People with ASD and ID are hospitalized at a rate six times higher and will likely have longer psychiatric hospital stays than people without ASD. Many will not receive appropriate treatment that is tailored to their unique needs due to lack of understanding, knowledge, and training by mental health professionals. A recent study found that mental health treatments are challenging due to individuals limited communication skills, unique individual challenges, as well as the mental health field’s tendency for diagnostic overshadowing, which is the assumption to contribute behaviors to the developmental diagnosis, not necessarily the mental health diagnosis.” 

"Joey Jennings' Story"

by Sue Jennings, EP Magazine, December 2017

We Need a Full Continuum of Care for Adults with Severe Autism
By Joan Kelley, 4/25/19

Washtenaw County: Notes on the WCCMH Board Meeting for 4/19/19

Washtenaw Community Mental Health Board meetings are usually held on the third Friday of the month from 9:30 to 11:30 a.m. The timing alone may explain why there are so few members of the public who attend the meetings or take the opportunity to speak to the Board during the time set aside for public participation. Most of the attendees are Board members, WCCMH staff, or people who have been invited to talk to the Board on specific topics. 

At the WCCMH Board meeting on April 19, 2019, there were at least half a dozen members of the public who made comments during public participation, many of whom had participated in state House budget hearings on 4/11/19 in Lansing. Those hearings can be viewed on Michigan House TV. 

The April 11th Agenda for the House Appropriations Subcommittee on Health and Human Services included an Overview of the FY 2019 - 20 Executive Recommendation for Behavioral Health and State Hospitals by the DHHS (Department of Health and Human Services) and Public Testimony on the DHHS Budget Recommendation. Public comments begin at around 1 hour and 10 minutes into the video. There were a number of commenters from Washtenaw County, most speaking about the benefits of services for people with severe mental illness and a few representing people with developmental disabilities. A provider of services who is also a parent, said that Monroe CMH is far behind in reimbursing providers like himself for services and that this has a domino effect on families, clients, and employees. Some spoke against the privatization of mental health services and others bravely spoke of their experiences with severe mental illness and surviving seemingly hopeless situations, including childhood sexual abuse.

The agenda and other materials for the 4/19/19 Board meeting are available on the Washtenaw County website. The public part of the meeting was cut short for a closed session to discuss pending litigation that challenges the State’s underfunding of Community Mental Health agencies. As I understand it, these agencies are put in the position of having to either cut services that they are mandated to provide or to violate mandates against budget deficits that they are unable to cover with funding reserves because they have been depleted by underfunding. In current state budgets, there has been a slight increase in general appropriations that can include spending on services to people who are not eligilble for Medicaid.

A notable development is that Jane Terwilliger has resigned as the Executive Director of the 4-county Community Mental Health Partnership of Southeast Michigan (CMHPSM). This followed the results of a survey that was highly critical of her performance. The COO (Chief Operating Officer) is now heading the organization and there will be a search for a new Executive Director.

Another part of the meeting focused on Board Committee structure and planning for services funded by the 2017 Washtenaw County millage to improve mental health services and safety. As I have said before, my interest is usually in subjects connected with services to people with intellectual and developmental disabilities. If you are interested in how the WCCMH is funded and spends available resources, the Agenda package includes detailed financial information on this subject.