Troubled times: law enforcement, severe mental illness, and other disabilities

Susan Werner - Did Trouble Me on YouTube

As we experience the Covid-19 pandemic, political unrest, and economic uncertainty, we frequently hear the expression “During these troubled times…” or something equivalent. Whether it is used in an ad for anti-anxiety medication or to promote a candidate in a seemingly distant election, many people with severe mental illness and those with severe intellectual and developmental disabilities (IDD) and their families experience “troubled times” as the norm. Untroubled times are a welcome relief, while waiting for troubles that may be just around the corner. 

In the recent Black Lives Matter upheavals following the horrific video-recorded killing of George Floyd in Minneapolis, a demand to “Defund the Police” has been pushed to the forefront of news coverage. There are varying interpretations of what this means. However one interprets the phrase, there is a lot to be gained from examining the role of law enforcement in the lives of people with mental illness and other disabilities, the allocation of taxpayer funds in this regard, and whether there are more effective ways to use the money that might produce better results for everyone concerned. Police departments, like public schools, are often called on to solve societal problems that they have no control over, such as poverty, the lack of medical and mental health care, and homelessness. The neglect of these problems through years of de-funding programs that might have shored-up our system of care and services to people with with mental illness and intellectual and developmental disabilities (IDD), has led to law enforcement taking on responsibility for problems where others have failed to have an impact. It is hard to believe that most police officers want this responsibility, nor are they very good at solving these types of societal problems.

Severe mental illness often leads to police involvement when a person with untreated mental illness is perceived as acting irrationally or in a threatening manner toward others. People with severe IDD and their families experience similar situations to that of people with severe mental illness and their families. [See "Michigan’s mental health system is failing many with severe autism", 5/16/19 from The DD News Blog for some examples.]

The Treatment Advocacy Center (“Eliminating barriers to the Treatment of Mental Illness”), distributes a Research Weekly that recently looked at the “Role of Law Enforcement in Mental Illness Crisis Response". Its recommendations show how shifting funding from law enforcement to better care and treatment for people with severe mental illness would relieve law enforcement of taking on responsibilities better left to the mental health system and divert people who are unnecessarily forced into the criminal justice system into more appropriate and effective treatment.

Here are excerpts from from the Research Weekly: "Role of Law Enforcement in Mental Illness Crisis Response":
“The Treatment Advocacy Center has been calling attention to the need to transform law enforcement’s role in communities for more than 20 years, starting with the work of our founder Dr. E. Fuller Torrey. Our research expertise includes the role of law enforcement in mental illness crisis response and how people with severe mental illness are overrepresented in the criminal justice system.

"What follows is a compilation of data and information on these important topics: ..”
...
"Approximately one in four fatal police encounters involve an individual with severe mental illness, according to our 2015 report, Overlooked in the Undercounted. This means that people with mental illness are 16 times more likely to be shot and killed by police, compared to people without mental illness. Reducing the disproportionate volume of contacts between law enforcement officers and people with severe mental illness is the single most immediate, practical strategy to reduce fatal police encounters for individuals with mental illness. Furthermore, there is currently no national government database collecting information regarding arrest-related deaths, let alone the role of mental illness or race disparities in these encounters."

...
"The role of law enforcement in mental illness crisis response is an enormous portion of department resources and budgets. Responding to and transporting individuals with mental illness occupies more than one-fifth of law enforcement officers’ time, according to our 2019 report, Road Runners . This outsized role is a result of the overrepresentation of people with mental illness within the criminal justice system, the length of time mental health crisis service calls take, the long distances law enforcement must travel to find available mental health resources and the time officers must wait while transporting individuals in crisis to an emergency department."

...

"The lack of appropriate mental health treatment services in the community was the most prominent factor contributing to law enforcements’ outsized role in mental health crisis response, according to a thematic qualitative analysis of our 2019 law enforcement department survey results . Survey respondents felt that many of the time and resource issues surrounding psychiatric transports are due to an inadequate supply of beds in the community for individuals to receive treatment. As with any other illness, severe psychiatric diseases have a variable illness course, with waxing and waning symptomology and resulting needs for the individual suffering. Therefore, a full continuum of psychiatric care, including outpatient, crisis, and acute care, as well as longer-term and residential-type beds, is needed for a functioning psychiatric system. Few communities in the United States have such a robust mental health care system in place."
...

"As municipalities continue to examine the role law enforcement plays in our society, these data and resources can serve to inform evidence-based policy decisions.

Elizabeth Sinclair Hancq
Director of Research
Treatment Advocacy Center

People with severe IDD and those with Serious Mental Illness experience similar barriers to treatment and care

This is a talk by D.J. Jaffe from MentalIllnessPolicy.org on barriers to treatment for people with serious mental illness. It was presented to the National Conference for Behavioral Health in Washington, D.C. in April 2018. Jaffe is the brother-in-law of a woman with schizophrenia.

According to the Website, “Mental Illness Policy Org. was founded in 2011 to provide unbiased and easy-to-access information for the media and policy makers about the care and treatment of people with serious and persistent mental illness. The issues facing the seriously mentally ill differ from the problems that affect the much broader population of people who have issues like anxiety and mild depression. The needs of the seriously ill often get lost in the larger dialogue about mental health. Being honest about this population requires addressing difficult issues like violence and involuntary treatment, issues many organizations prefer to avoid.”

Of course there are differences between people with severe mental illness and people with intellectual and developmental disabilities (IDD), but there are some striking similarities in the barriers to appropriate care and treatment for both populations. Those with severe and profound IDD also “get lost in the larger dialogue…” about people with disabilities. There is a reluctance to acknowledge the severity of these disabilities for fear of stigmatizing the entire population of people with disabilities, not to mention the profound effect these disabilities have on families and caregivers. To be sure, we are talking about a small but significant minority in both populations whose needs cannot be dismissed or swept away by ignoring reality or by wishful thinking.

Here are a few excerpts from Jaffe’s talk that caught my attention:

“We fail the seriously mentally ill when we try to convince government that it is stigma rather than lack of services that presents the major barrier to care for the seriously mentally ill”

“…when we mislead about violence, after incidents like Parkland, Virginia Tech, Aurora Colorado, we pull out our most popular claim: the mentally ill are no more violent than others. Nonsense. The untreated seriously mentally ill are more violent than others and …we know it… We fail the seriously mentally ill when we try to hide that because we prevent solutions. “

“If we really want to reduce stigma, we have to reduce the violence.”

“The police step in when one condition is met - the mental health system fails.”

“…We mislead officials into thinking we should spend more improving mental health and mental wellness in the masses rather than on treating the seriously ill. As a result of our advocacy the ability to get care has largely become inversely related to need. The least seriously ill are going to the head of the line and the most seriously ill are going to jails, they’re going to shelters, they’re going to prisons, and they are going to morgues.”

“Funds have been moving from state hospitals, which by definition serve the seriously ill, to community programs…but that’s not where patients are moving. Patients are moving from hospitals, which are going way down, to jails which are going way up. But we in the industry still claim that if we reduce hospitals we will reduce institutionalization. That has nothing to do with reality.”

“We have to make it easier for people to get treatment before they become a danger to self or others rather than preserving laws that require them to become a danger to self or others… We have to stand up against Bazelon, Protection and Advocacy, the ACLU…and others who believe being psychotic, delusional, hallucinating is a right to be protected rather than an illness to be treated…”

So-called evidence-based programs are “generated by the promoters of the treatments who want us to ignore their conflicts of interest…”

“The seriously mentally ill are being shunned and shut out of the engagement”

On stigma: “Any mom of somebody with serious mental illness, any social worker who works [with the seriously mentally ill]..knows that the biggest barrier to care is there’s no services available…”

*************************************

D.J. Jaffe's talk on Youtube

"Insane Consequences: How the Mental Health Industry Fails the Seriously Mentally Ill" by D.J. Jaffe

Review of "Insane Consequences" by Pete Earley

Michigan: Oakland County Town Hall Meeting on future of mental health services, including services for DD

This notice comes from Ed Diegel of Advocates for Persons with Developmental Disabilities in Wayne County at ddadvocates@gmail.com .

***********************

Background

The Michigan legislature approved a revised version of Section 298 as part of Public Act 107 of 2017. Under the revised Section 298, the Michigan legislature directed the department [of Health and Human Services] to develop and implement up to three pilots and one demonstration model to test the integration of physical health and behavioral health services. That work is proceeding.

Open Invitation--You are Invited to one of several open meetings to be held throughout the state. Following is information concerning a meeting to be held October 26 in Oakland County.

Learn Issues and Make Your Voice Heard!!!

Oakland County Mental Health Town Hall Meeting

Thursday, October 26, 2017, 7:00 PM
Beaumont Hospital, Administration Auditorium
3601 13 Mile Road

Royal Oak, MI 48073
Open at 6:30PM

Each county town hall meeting will have a panel of state legislators of that county to hear from advocates, community mental health leaders and concerned citizens regarding their concerns to be addressed by mental health reform.

Purpose:

• To express to policy makers your personal concerns that we properly fund, govern and manage, more and better mental health services, and
• To advocate for a publicly managed and accountable mental health system, that promptly and effectively responds to persons in need of services, ensures that persons can meet their basic needs for housing, food, clothing, transportation and social relationships, and promotes and sustains recovery that enables recipients of services to be the best they can be.

Persons wishing to share their stories are encouraged to bring written statements which will be collected and shared with other policy makers following the event. Public comments will be limited to 5 minutes each to enable many people to express their concerns. If you choose not to speak or you can’t attend, you may e-mail your comments to fred.a.cummins@gmail.com

Everybody is welcome.

Current Sponsors and Growing:

Alliance for the Mentally Ill of Oakland County
Mental Health Association in Michigan
Michigan Protection and Advocacy Service
Michigan Disability Rights Coalition
Parents Alliance of Metro Detroit
ARC of Michigan
ARC of Oakland County
MICHUHCAN
Michigan Nurses Association
UAW Region 1
UAW Region 1A
UAW Region 1A, Retiree chapter
UAW Local 412
Mich. AFSCME Council 25
Michigan State AFL-CIO
Michigan Alliance for Retired Americans
South East Michigan Jobs with Justice
Michigan Alliance to Strengthen Social Security and Medicare
Michigan United
Alliance for Retired Americans
Michigan Association of Community Mental Health Boards
Detroit-Wayne Mental Health Authority
Oakland Community Health Network
Macomb County Community Mental Health

For more information, call 248-203-1998.

Michigan : DHHS wants to hear from you about the services you need and want

This is a flyer from the Michigan Department of Health and Human Services:

TELL US WHAT YOU WANT!

The Michigan Department of Health and Human Services (MDHHS) is asking people with mental illness, emotional disorder, developmental or intellectual disability, or substance use disorder, and their family members, what supports and services they need/want!

This is a follow-up to the Lieutenant Governor’s workgroup on the 298 boilerplate that was in the Governor’s budget recommending privatizing behavioral health services. The boilerplate was changed, but MDHHS needs to write a report to Legislators about suggestions for improving the service system.

To collect information a survey was developed. MDHHS is hosting group meetings to ask people the survey questions. Meetings are scheduled for:

October 4, 2016
From 1-4 pm

October 5, 2016
From 6-9 pm

at 

The Hannah Center
819 Abbot Road
East Lansing, Michigan 48823
(517) 333-2580

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For those wanting to comment on a proposal but unable to attend the meeting can access a questionnaire… and then send (email or USPO) the completed questionnaire to:   MDHHS-298@michigan.gov

To obtain the Word version of the survey go to the Affinity Group webpage and scroll down to "Questions for eligible populations and families". You can then fill in the survey answers using the Word document and return it by email or regular mail.

***********************************

Background information: 

The 298 Initiative

[Section 298 was the notorious proposal inserted into the Governor's 2016 budget bill in March 2016. It had language in it that would have handed over Medicaid funding for behavioral health, including Community Mental Health funding for DD, to Medicaid Health Plans. This change to privatize the funding of services was placed in the budget bill without hearings or input from people affected by the proposal. It was withdrawn and the 298 Initiative was created to make recommendations to the Michigan legislature regarding funding and services for people with DD and other disabilities.]

"The Section 298 Initiative is a statewide effort to improve the coordination of physical health services and behavioral health services in Michigan. This initiative is based upon Section 298 in the Public Act 268 of 2016. Under Section 298, the Michigan Legislature directs the Michigan Department of Health and Human Services to develop a set of recommendations “regarding the most effective financing model and policies for behavioral health services in order to improve the coordination of behavioral and physical health services for individuals with mental illnesses, intellectual and developmental disabilities, and substance use disorders...”

Follow the links on the 298 Website for more information.

Metro Detroit Town Hall meetings on Mental Health Funding and Services

From the the Detroit Free Press, 9/22/16:

“A series of town hall meetings about mental health funding and services in Michigan is kicking off Thursday, with the first of three meetings in metro Detroit to be held in Oakland County.

"Each event is to have a panel of state legislators from their respective counties to hear from advocates, community mental health leaders and citizens concerned about mental health reform. Other town halls are scheduled for venues in Macomb and Wayne counties.

"Specifically, organizers hope to have people express their concerns about properly funding more and better mental health services to their policymakers and to oppose efforts in Lansing to shift Medicaid funding for mental health services to private HMOs."

Earlier this year the Governor proposed in his budget bill to drastically change the way Mental Health services are funded and delivered in Michigan. The proposal would have allowed for the privatizing of Medicaid spending on Mental Health, handing funding over to private Medicaid Health Plans.  This created an uproar that was enough to have the Governor withdraw his proposals for this year, but it could come up again in January, after the Michigan Department of Health and Human Services delivers a report on reform proposals to the legislature.

The first town hall is tonight (Thursday, 9/22/16) at 7 p.m. in the Beaumont Hospital Administration Auditorium, 3601 Thirteen Mile in Royal Oak. Two more Town Halls are set for or 7 p.m. Sept. 28 at the Macomb Intermediate School District, 44001 Garfield in Clinton Township and 10 a.m. Oct. 15 at UAW Region 1A, 9650 Telegraph Road in Taylor.

Comments are limited to five minutes. These events are sponsored by organizations listed on the flyer. Send written comments to freda.cummins@gmail.com . Call 248-203-1998 for more information.

See the Flyer for these events

Michigan reverses course on privatization of the mental health system

When the Michigan budget for Fiscal Year 2017 was released earlier this year, it included the now infamous Section 298 that would have turned Medicaid funding over to Medicaid Health Plans that would have in turn contracted with local community mental health agencies to provide services to people with developmental disabilities, mental illness, and other disabilities.

Currently, mental health services are funded separately as a “carve-out” to assure that these vulnerable populations are taken care of appropriately. The Michigan Department of Health and Human Services contracts with regional administrative community mental health agencies (PIHPs) that distribute funds to local CMH agencies to provide services. PIHPs would have been eliminated and Medicaid Health Plans, many of them for-profit, would have taken over, reducing the amount in the total budget available for services. The difference in overhead with the current PIHP System is striking: for Medicaid Health Plans, overhead costs for administering these plans is 15 - 17 % of the total funding. The Michigan PIHP system costs for overhead are only 6%.

By March 3, 2016, there was enough of an uproar over the proposed budget that the Michigan House Subcommittee on Judiciary and the Department of Community Health changed course, at least for now.

This is an email from Alan Bolter, Associate Director of the Michigan Association of Community Mental Health Boards (MACMHB), on 3/4/16:

...Today, Rep. VerHeulen issued the following statement regarding Section 298 of the Executive Budget request for the Department of Health and Human Services (MDHHS) Budget:

"After spending several weeks reviewing the proposed language in Section 298, I want to ensure stakeholders, patients, and Michiganders that the language will not be included in the House MDHHS budget.

“I appreciate the work of the Department of Health and Human Services in exploring new and innovative ideas to enhance the care of beneficiaries in the state of Michigan. Mental health is one of the most critical aspects of our health care system, and it is important that we carefully review proposed changes.

“The language in Section 298 will be removed in the House MDHHS budget. I am always open to proposed changes that prioritize more efficient and effective mental health care. I appreciate the workgroup process that has been initiated by Lieutenant Governor Calley and MDHHS, and look forward to analyzing the results of that workgroup process.

“The House Appropriations MDHHS Subcommittee will continue to work to craft a budget that ensures a high level of responsible care for Michiganders. Health care will remain a pressing issue, and the subcommittee looks forward to tackling the other challenges we face with Michigan's health care and social safety net systems."

#####

Alan Bolter, Associate Director
MACMHB
426 S. Walnut St.
Lansing, MI 48933
(517) 374-6848

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This is far from over, but at least there is a considered effort underway to analyze and study proposed changes to the way services to people with DD and other disabilities are funded and delivered before those changes are enacted into law. 

Here is more information on Section 298 and proposals that would have made drastic changes in Michigan's mental health system.

Father's Plea for Treatment for his Severely Mentally Ill Son

New Jersey: Autistic man brought "home" from PA; ends up in jail with no other options

This is from the VOR Weekly News Update for 10/10/14:

Tyler Loftus, 23, has been sitting in New Jersey’s Hunterdon County Jail since September 18. “Every day he calls and says, ‘Mom, come get me, I don’t want to stay here,'” his mother, Rita O’Grady, told me.
 
Diagnosed with autism and intellectual disability, Tyler has the cognitive capacity of a 5-year-old. He can’t understand why he’s not allowed to leave.
 
“I never consented to this placement,” O’Grady said. “I specifically withdrew consent, because I knew what would happen. But the Arc [the agency that operated the group home] moved him anyway.”

And there are facilities that specialize in the treatment of individuals with developmental delay and dangerous behaviors: the Woods School in Pennsylvania, for instance, where Tyler lived from the ages of 15 to 21. Closer to home there are state-run developmental centers, such as the one in Hunterdon, where Tyler has previously been admitted.
 
But these are no longer options. Governor Chris Christie’s Return Home New Jersey program has put a moratorium on all out-of-state placements and “Christie is closing [developmental centers],” O’Grady told me. “And he’s put a stop order on all new admissions. Ideally, Tyler would be at Hunterdon while a permanent placement is found, but they can’t take him.”
 
The problem, O’Grady explained, is that the community-based supports that Christie promised have not yet materialized...

Read the full article here : "No End in Sight for Autistic Man Jailed in New Jersey" by Amy Lutz, 10/3/14.

Here is an updated article about the case: "Christie plan to return disabled to N.J. leads one man to hospitals, jail" by Susan Livio, 10/10/14 at NJ.com .

VOR is a national organization that advocates for the right of individuals with intellectual and developmental disabilities and their families to choose from a full array of high quality residential and other support options including own home, community-based, and large settings such as Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IDD). See also VOR Weekly News Updates and Olmstead Resources.

Steep cuts to Detroit area mental health budgets

This if from the DDadvocates Newsletter, November 2013, by Ed Diegel:

Welcome the Detroit Wayne County Mental Health Authority 

Lobby Against unprecedented Cuts to Mental Health Budgets in the Tri County Area

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 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.

What to do?

Please do this today—

1. Go to the new DWMHA web site  Go to the Contact Us page and send a message to Tom Watkins welcoming him and encouraging him and his staff in the new organization. Take the time to mention any gaps or unmet needs you are aware of in
   service delivery to persons with developmental disabilities.
2. Go to the DWMHA Home Page and find the link to your legislators
3. Use the link to send a note to your Representative and your Senator and inform them that the so-called Mental Health rebasing action will further dismantle services in the most needy counties of the state, is ill conceived and will create yet further economic burden in the tri county area. 
4.  Ask each of them to tell you what they will do to intercede. Don’t assume your legislator will support you in this. Remember, most Wayne County legislators voted AGAINST the creation on the newAuthority!

Thanks, and Happy Thanksgiving to each of you!!
 
Ed Diegel,
Advocates for Persons with Developmental Disabilities in Wayne County.
ddadvocates@gmail.com
and now at ddADVOCATES.com

When more costs less: more and better psychiatric care reduces overall costs

An opinion piece in the New York Times, (8/3/13) by Christine Montross entitled "The Woman Who Ate Cutlery" illustrates the point that trying to save money by making care and treatment for people with mental illness less accessible, does not save anything. Emergency rooms become the only available treatment venue in a crisis - a poor substitute for preventive care before a crisis develops, hospitalizations increase, and sometimes lives are lost.

Problems in the the system of care for people with mental illness often parallel those for people with developmental disabilities. There are many people with developmental disabilities who have unusual and sometimes dangerous behaviors, with the added complication that the person's capacity to communicate their frustrations make it even more difficult to know how to relieve their distress. There are also people with DD whose medical problems, when not addressed early or treated appropriately, can land them in the emergency department with the result that the person receives too little or too much treatment that is almost always more costly than it needs to be.

In "The Woman Who Ate Cutlery", "M" is an extreme case - a woman who ingests knives and forks and other sharp objects and inserts objects and substances into her body to relieve stress caused by mental illness. 

According to the article:

• "If M had insurance, or enough money to pay out of pocket, she might see a therapist every week for an hour and a psychiatrist once or twice a month. Instead, she’s treated by an overextended, publicly funded mental-health center where she sees a psychiatrist for 20 minutes, four times a year. Not surprisingly, her symptoms persist and she is hospitalized again and again."
• "…Our failure to provide a critical, basic level of outpatient psychiatric care to the mentally ill creates a volatile cycle in which uninsured or underinsured patients avail themselves of treatment only when they are in crisis. This is analogous to refusing to treat hypertensive patients — or to monitor their blood pressure — unless they show up in the E.R. after having had a stroke."
• "…If M had a regular outpatient psychiatrist, she could call him or her in these moments of distress, schedule an urgent appointment, and obtain treatment and care from a simple phone call. But M does not have a relationship with a provider; she has a relationship with an institution. And the institution requires that M be in imminent danger in order to be treated."
• "…According to Dr. E. Fuller Torrey, president of the national nonprofit Treatment Advocacy Center, 'Assisted outpatient treatment has proven to reduce psychiatric hospitalizations by more than 70 percent.'"

Montross concludes, "…we will need to place new societal value on the importance of mental health. Until accessible, affordable mental-health care is a universal right, too many psychiatric patients will continue to receive the reactionary, crisis-driven care that is all our emergency rooms are equipped to provide."

When advocacy leads to tragedy: P&A under scrutiny

On May 20, 2013 a U.S. House Energy and Commerce Subcommittee on Oversight and Investigations held a hearing on the  federal Substance Abuse and Mental Health Services Administration (SAMHSA) and how well it serves people with severe mental illness. The agency was criticized for providing funding to advocacy groups that believe that mental illness is not an illness, that it should not be treated with medication, and that treatment of mental illness infringes on the rights of people who are mentally ill. SAMHSA also funds Protection and Advocacy agencies in every state to provide legal services to people with mental illness. These agencies came under particularly close scrutiny for their overzealous and sometimes dangerous advocacy that prevents severely mentaly ill patients from receiving treatment that could help them. [These are the same P&A's that provide legal services for people with developmental disabilities funded by the Developmental Disabilities Assistance and Bill of Rights Act, the DD Act.]

In testimony before the committee, Joe Bruce, the father of a man with paranoid schizophrenia who was involuntarily committed to a mental hospital in Augusta, Maine in 2006, described how his son was assisted by advocates from the Disability Rights Center of Maine (Maine's P&A agency) to be released early from the hospital without medication and sent home to live with his parents. The incident ended tragically with the son William Bruce murdering his mother Amy in their home.

Here is a link to a video of Joe Bruce's compelling testimony before the committee.

The involvement of disability rights advocates in this case did not end with the tragedy of Amy Bruce's murder. Here are some excerpts from Joe Bruce's written testimony :

"The doctor’s decision to release him [William Bruce], which resulted in such a tragic outcome, was made without the benefit of all of Will’s history or any input from Amy and me."
...

"After his commitment to Riverview by the criminal court, I applied to become his guardian. Will was agreeable to this until, incredibly, a patient advocate told him, 'The guardianship is a bad idea. It would give your father complete power over you.' The attending physician (a new doctor), undoubtedly at the urging of DRCM [Disability Rights Center of Maine], refused to provide the evaluation required in the guardianship application. He told me, 'I could never
participate in anything that would cause your son to be considered an incapacitated person.' Bear in mind that at this point in time, Will had been placed in the hospital after being found incompetent to even stand trial!"[emphasis added]

Joe Bruce finally did become Will's guardian and only then did he learn the role of patient advocates in his son's premature and unmedicated release: 
"The patient advocate, a Trish Callahan, told the treating doctor that DRCM regarded Amy and me as a 'negative force in Will’s life. Amy and I had never met any of these people or even heard of Disability Rights Center of Maine. In the treatment meetings, she acted like a criminal defense lawyer. She openly coached Will on how to answer the doctor’s questions so as to get Will the least treatment and the earliest release. She did this in the face of strongly contrary evidence of Will’s unsuitability for unmedicated release."
...
"Lest anyone believe this is a local, isolated occurrence, the National Disability Rights Network [NDRN], responding to the Wall Street Journal’s page one article concerning Will’s case, defended the actions of DRCM, and even prepared talking points to deflect criticism. The patient advocates can do this with impunity because they are literally accountable to no one... "

Joe Bruce and other families in Maine worked to change the only two options available to the courts at the time for people with severe mental illness: either place them in a hospital or release them unconditionally. A third option that was eventually adopted by the state, although opposed by patient advocates, is known as Assisted Outpatient Treatment that allows for the person to be released into the community with the condition that he remain on medication.

"As another example of DRCM’s lobbying influence in this area, while the Maine families and I were busy working on the AOT law, DRCM was successful in getting a bill through the Maine legislature to make it more difficult for families to become guardians. Becoming a guardian is the only way families of adult patients can be involved in the treatment of their loved ones where the patients are unwilling or unable to consent. Why do PAIMIs [P&A advocates] want guardianship to be more difficult? Because a guardianship lifts HIPAA secrecy and allows the guardians into the treatment meetings."
...
"Ironically and horribly, Will was only able to get treatment by killing his mother."
...
"Tragedy visits families every day. That is a sad fact of life. But an unbearable aspect of Amy’s death is that my own tax dollars helped make it possible..."

For people with Developmental Disabilities, abuses by DD Act programs including Protection and Advocacy have been documented in detail. The DD Act of 2000 has not been reauthorized in 13 years. Instead, the programs continue to get funding every year with very little oversight by Congress. This needs to change. Congressional oversight hearings would very likely reveal the same kinds of abuses by developmental disability advocates that they are finding with advocates for the severely mentally ill.

What you need to know about Michigan Due Process and Services for DD

Spring at last

I attended two presentations in the last 6 weeks by Stacy Coleman sponsored by NAMI (National Alliance on Mental Illness) of Washtenaw County, Michigan, and the Washtenaw Community Health Organization (WCHO). Stacy works for the WCHO and is a Medicaid Hearing Officer. She is an expert on Medicaid law as it pertains to people served by the Community Mental Health system. Her presentations on due process rights and mental health services for people with mental illness and developmental disabilities are always informative.

This was a refresher course for me (see the Friends of DD Newsletter from November 2010) and a reminder that many families of people with DD are not well-informed about their family member's rights, the availability of services, or the remedies afforded to Medicaid recipients who disagree with decisions made by their local CMH. It is not only a lack of information that is the problem, but the reality that many families are sometimes misinformed and misled by people within the CMH system.

Here are a few bits of information from Stacy's presentation that you need to know:

IN MICHIGAN, THERE ARE NO WAITING LISTS FOR SERVICES

Because of agreements Michigan made with the Federal agency that regulates Medicaid (CMS) that allows the state to have a managed care system for Medicaid-funded mental health services, there can be no waiting lists for services.

MEDICAL NECESSITY

Mental Health Services for people with DD must be"Medically Necessary". The same criteria apply to people with mental illness.

According to the Michigan Medicaid Provider Manual, individuals with developmental disabilities who are eligible for Medicaid are entitled to "medically necessary" supports, services, and treatment that are:

• Necessary for screening and assessing the presence of a developmental disability
• Required to identify and evaluate a developmental disability
• Intended to treat, ameliorate, diminish, or stabilize the symptoms of developmental disability
• Are expected to arrest or delay the progression of a developmental disability
• Are designed to assist the individual to attain or maintain a sufficient level of functioning in order to achieve his goals of community inclusion and participation, independence, recovery, or productivity.

The determination of medical necessity must be based on information provided by the person with a DD, the person’s family and/or others who know the individual, and clinical information from health care professionals. The determination must be based on a person-centered plan and made by appropriately trained developmental disabilities professionals within federal and state standards of timeliness. It must be "sufficient in amount scope, and duration of the services" and documented in the Individual Plan of Service.

Services "sufficient in amount, scope, and duration" need to be specified in the IPOS with as much detail as is necessary to meet the needs of the person.

Services may not be denied based solely on present limits of the cost, amount, scope, and duration of services. Determination of the needs for services shall be conducted on an individual basis.

WRITTEN NOTICE FOR ADVERSE ACTIONS

When you ask for a service (do this in writing to make sure you have documentation of the request), the CMH agency must give you a written notice if the agency decides:

• to deny or limit the service
• reduces, terminates or suspends the service, denies payment for a service in whole or in part, or fails to authorize a service

In most cases the CMH agency must give you advance notice of an "adverse" action 12 calendar days before the action takes effect, or they must give you notice at the time the Individual Plan of Service is completed.

MEDICAID HEARINGS 

You may ask for a state Medicaid hearing through the Michigan Department of Community Health if you do not agree with the decision of the PIHP (the WCHO in Washtenaw County). Go to the Michigan Department of Community Health website for more information and a "Request for Hearing" form.

Services must continue while a hearing decision is pending if you have asked for the hearing in a timely manner. See the WCHO website on hearings and appeals for more information.

Here is more on the WCHO regional Due Process and Appeal Committee with links to related documents including the Medicaid Provider Manual.

Latest Revisions to the Michigan Dual Eligibles Plan

Jennie and friends

The Michigan Association of Community Mental Health Boards (MACMHB) and the Michigan Association of Hospital Plans (MAHP) issued a joint letter to members on changes to the state plan to integrate the care of people eligible for both Medicare and Medicaid. In negotiations with the Centers for Medicare and Medicaid Services (CMS), the federal agency that oversees and regulates Medicare and Medicaid, a preliminary agreement has been worked out with the state. 

The Dual Eligibles plan will be scaled back to a 3-year demonstration project to be implemented in selected regions of the state.  Michigan and the CMS will formally conclude negotiations with a Memorandum of Understanding (MOU) that will be the basis for this implementation.

Neither the number nor location of regions has yet been decided. The state has recently approved a new regional configuration for Pre-Paid Inpatient Health Plans (PIHPs), reducing the number of PIHPs in the state from 18 to 10. A PIHP is the administrative entity over local Community Mental Health agencies. Within each selected region, no sub-populations or sets of services will be excluded from the plan.
   
According to the letter:

CMS will require three-way contracts between the federal government, the state and management entities selected to participate in the project. 

• Management entities will include integrated care organizations (ICOs) and prepaid inpatient health plans (PIHPs). 
• In the proposed plan, ICOs will cover physical health and long term care services, including but not limited to, institutional and community based long term services and supports and pharmacy.
• In the proposed plan, PIHPs will cover behavioral health and habilitative services, including developmental disabilities, mental illness, or substance abuse problems.

Here is the map of these new regions. The Integrated Care Organizations will cover the same regions as the PIHPs. (The CMH Partnership of Southeast Michigan will remain intact and continue to include Washtenaw, Livingston, Monroe, and Lenawee Counties). "Once selected, each region and contracted entities, (ICO/PIHPs) will be maintained for a total of three years to accommodate evaluation requirements."

In addition:

• Eligible individuals will be automatically enrolled into the integrated system, but can opt out prior to enrollment as well as after beginning to receive services.
• Michigan is continuing its process to include stakeholder input on an ongoing basis throughout the course of the demonstration.
• Subject to CMS approval, the program will begin providing coverage in January of 2014.

Other details in the letter and documents on the Michigan Integrated Care Web site include schedules for Integrated Care Organizations to apply for contracts. Here is more information and background on the Dual Eligibles Plan. Stay tuned for further developments.

Medicare/Medicaid Eligibles: The Kaiser Report on State Plans and Michigan's Plan so far

Way back in 2011, Michigan was one of fifteen states to receive a contract with the federal Centers for Medicare and Medicaid Services (CMS) to develop a model to integrate the care of people eligible for both Medicare and Medicaid. (CMS is the federal agency that regulates and oversees Medicare and Medicaid.) Michigan was among the first 15 states to receive funds to develop a plan. By July of 2011, 26 states were participating in planning. A Report from the Kaiser Commission on Medicaid and the Uninsured from October 2012, summarizes and provides data on the plans from 26 states. 

Michigan's Dual Eligibles plan would affect about 200,000 people who are elderly, mentally ill, or physically or developmentally disabled and poor.  The purpose of the plan is to reduce costs and improve care. But the premise on which federal and state governments justify the idea that the share of spending can be reduced for the Medicare/Medicaid eligible population is  questionable. As stated in the introduction to the Kaiser Commission Report, "Dual eligible beneficiaries are among the poorest and sickest people covered by either Medicare or Medicaid and consequently account for a disproportionate share of spending in both programs." How is the share of spending disproportionate after one accounts for the characteristics of this population?

I think it is safe to assume that medical and hospital costs are generally too high and that we pay too much for prescription drugs and  medical devices and equipment. But almost half of the Medicare/Medicaid population are people under 65, many of whom receive Medicaid-funded mental health services through Michigan's Community Mental Health system.  Cost increases in areas covered by CMH have been relatively stable: 

"Per capita health care costs in the US increased by more than 5% per year between 2002 and 2009, with a total increase of 57% during that period. The public mental health system has seen an increase of approximately 2.2% per enrollee per year in that same period." (from the MACMHB Guide to Integrated Care for Dual Eligibles)
 
Finding ways to control the high cost of medical care is laudable, but the fear by individuals and their families who receive services through the CMH system is that reducing the costs of mental health services can only be achieved by reducing the number and quality of services available and by cannibalizing existing programs for people with developmental disabilities and mental illness to fund  services to other under-funded populations.

Other objections to the plan include:

The use of state-wide standardized assessments to determine needs and identify services is contrary to the idea of Person-Centered Planning. Assessments should be used by the PCP team to determine needs and services, but assessments alone should not be the determining factor. The state plan for dual eligibles reduces the PCP meeting to a little get-together to ratify the decisions that have already been made through the assessment process.

The proposed revisions to the Dual Eligible Plan's  "Care Bridge" give more control over assessment and determination of services to an Integrated Care Organization, ICO, a Medicaid health plan, thereby giving decision-making power to the medical system of care rather than the mental health system. While locally controlled Community Mental Health agencies may continue to play a role in assessing and determining needs of people with developmental disabilities, they do so under contract to the ICOs, organizations  that have little experience with the populations served by the CMH system. Case management services may or may not be provided by CMH agencies, further diminishing the role of publicly controlled local CMH agencies in implementing and overseeing the provision of services. 

Key Questions 

Overall, according to the Kaiser Commission Report, there are crucial questions that remain to be answered regarding how the 26 state's will implement their plans.
 
(Page 16) As CMS continues to review the 26 states’ proposals and finalizes MOUs [Memoranda of Understanding] to implement demonstrations in selected states over the coming months, attention should be given to several key questions, such as:

• How will beneficiaries be notified about the demonstrations and enroll and disenroll?
• How will Medicare and Medicaid contributions be calculated, risk-adjusted, and adjusted over time?
• What will the source(s) of savings be, and how will savings be shared among CMS, the state, plans and/or providers?
• How will the demonstrations affect access to home and community-based services?
• How will medical necessity determinations be made, and how will beneficiaries appeal decisions with which they disagree?
• Will beneficiaries be able to retain their current providers and services and access an adequate provider network?
• How will plans and providers meet the needs of and provide reasonable accommodations to beneficiaries with a range of physical, mental health, and cognitive disabilities?
• How will quality be measured, and how will the demonstrations be monitored and evaluated?
• To what extent will the specific standards that health plans must meet to participate in the demonstrations vary from existing Medicare Advantage and Medicaid managed care requirements?
• How will stakeholders continue to be engaged throughout the design and implementation process?

These are not trivial questions that must be answered. But of course, once a plan is approved it's not set in stone, is it? Well, apparently it is. This is from pages 18 and 19 of the Kaiser Commmission Report:
 
CMS’s financial alignment models for dual eligible beneficiaries are based on the Center for Medicare and Medicaid Innovation’s (CMMI) new § 1115A demonstration authority created in the ACA [the Affordable Care Act]. The following questions and answers explain the scope of the Secretary’s authority and the process for testing new payment and service delivery models under § 1115A. 
...

What is the scope of the Secretary’s [of Health and Human Services] § 1115A waiver authority?
 
The law [the Affordable Care Act] prohibits administrative or judicial review of the Secretary’s selection of models, organizations, sites, or participants; the elements, parameters, scope, and duration of models; determinations regarding budget neutrality, termination or modification of a design and implementation; and determinations about the expansion and scope of models.

Wow! A law that is outside the reach of administrative or judicial review? That's a chilling notion. This means the plan will have to be absolutely perfect before it is finally submitted to CMS by the state. What could possibly go wrong?

Michigan Self-Determination Guidelines Revised

Self-Determination is a method of delivering services to people with developmental disabilities that allows individuals to have more control over the services they receive, the people who provide the services, and the expenditure of public funds to pay for the services. This is an option that must be made available by Community Mental Health agencies for anyone who desires it, including people with the most severe disabilities who have guardians who speak on their behalf. People who want and need a more traditional program of services may choose not to use Self-Determination.

Last March, 2012, the Michigan Department of Community Health  (MDCH) issued proposed revisions to the Self-Determination Policy and Practice Guidelines. The proposal appeared to be designed as a blunt instrument to bash guardians and to remove them from the planning process for self-determination as much as possible. The vast majority of guardians for people with developmental disabilities are parents, other family members, or close friends of the person with a developmental disability.

Ignoring the jurisdiction of the Probate Court to appoint or remove guardians and to establish the legal disabilities of the person with a developmental disability that lead to the need for guardianship, the MDCH encouraged Community Mental Health agencies to police guardians and circumvent their authority to make decisions on behalf of their wards. The MDCH said that CMH must  "…support  individuals who have guardians … to identify an independent advocate," (emphasis added), presumably to protect individuals from their court-appointed guardians. To add insult to injury, the guidelines would have allowed CMH to terminate self-determination arrangements when an agency determined that the guardians "restrict the individual's rights."

Thanks to the efforts of ddAdvocates of Michigan and families and other individuals who commented on the proposed Guidelines, most of the guardian-bashing wording was removed. The new guidelines are a great improvement over the initial proposal.

I still believe, however, that the claim by people who promote Self-Determination, that it gives people with disabilities more freedom to choose the services they want and more authority over available resources compared to other arrangements through CMH, is exaggerated. All agreements as to how Self-Determination arrangements will be handled, how much money will be available to pay for services, and how the finances will be managed is subject to the guidance, approval, and continual oversight of the CMH agency. This is to be expected with an agency that has the responsibility for overseeing the expenditure of public funds, primarily Medicaid funds.

It is important to keep other options available when Self-Determination is impractical or is not suitable to the needs of the individual. Self-Determination can place extra burdens on disabled individuals and families to administer the provision of services and funds normally handled by CMH, while the public agency still has control and must approve the expenditure of the funds provided. At best, these arrangements can open up new possibilities for providing and paying for desired services that are beneficial to many recipients of CMH services.

Draft revisions to Michigan's Dual Eligibles plan

Is it possible to make the Michigan plan for Dual Eligibles worse for people with developmental disabilities? Apparently, yes, but we all still have a say in how this comes out and so does the Michigan legislature.
 
This is an e-mail from Tom Bird from ddAdvocates of Western Michigan sent out on 9/5/12.  It provides links to documents and other sources of information on Michigan's new proposal for an Integrated Care Bridge between Medicare, Medicaid, and mental health services.

From the Michigan Department of Community Health (MDCH): 

The Michigan Department of Community Health submitted documents to the Centers for Medicare and Medicaid Services (CMS) in response to its request for additional detail regarding the Integrated Care Bridge.  The Care Bridge is Michigan’s model for care coordination that was first outlined in the integrated care proposal submitted to CMS in April 2012.

These documents are drafts of the proposed Care Bridge concepts, have been posted to the website, and will be updated as discussions with CMS and stakeholders continue.
 
See the current Care Bridge concepts here. Scroll down to "Care Bridge Documents - 8-30-2012" for the link to the documents. The direct link to the pdf file is here .

Tom Bird's comments on the proposal:

"This contains the letters to CMS as well as the power point presentation, and a 'narrative' on how the care bridge would work, in addition to the vignettes on how it is supposed to work. The PLC [Primary Lead Coordinator] is supposed to be an ICO [Integrated Care Organization] (multi-county Health Plan) employee, responsible for the initial screening and intake, and the LC [Lead Coordinator] is either an ICO employee or an ICO-certified and trained contractor of another organization which the ICO will ultimately have control over and oversight of. It could be an existing CMH supports coordinator, but they would have to be trained and supervised by the ICO, with their time billed to the ICO. Either way, it puts the ICO (Health Plan) in total control of the 'care Bridge' functions as well as all of the funding for both Medicare and Medicaid (which are co-mingled and can be redistributed as the ICO desires); it puts the ICO in a position to deny or restrict services desired by the consumer, all far removed from the current system of local delivery, which presently offers local input and oversight via control of CMH Board appointments. If you add the incentive for the ICO to restrict (expensive) services due to the proposed 'profit sharing' of any savings, you have a big red flag waving."

Legislative review of changes to the Dual Eligibles plan is required by law: 

The following is wording from the 2012 appropriations law concerning legislative review of plans submitted to the federal Centers for Medicare and Medicaid Services (CMS):

Sec. 264. 
(1) Upon submission of a Medicaid waiver, a Medicaid state plan amendment, or a similar proposal to the centers for Medicare and Medicaid services, the department shall notify the house and senate appropriations subcommittees on community health and the house and senate fiscal agencies of the submission.

(2) The department shall provide written or verbal biannual reports to the senate and house appropriations subcommittees on community health and the senate and house fiscal agencies summarizing the status of any new or ongoing discussions with the centers for Medicare and Medicaid services or the federal department of health and humanservices regarding potential or future Medicaid waiver applications.

(3) The department shall inform the senate and house appropriations subcommittees on community health and the senate and house fiscal agencies of any alterations or adjustments made to the published plan for integrated care for individuals who are dual Medicare/Medicaid eligibles when the final version of the plan has been submitted to the
federal centers for Medicare and Medicaid services or the federal department of health and human services.

(4) At least 30 days before implementation of the plan for integrated care for individuals who are dual Medicare/Medicaid eligibles, the department shall submit the plan to the legislature for review. [emphasis added]

***************************************

Here is a refresher course on the issues regarding dual eligibles and people with DD.

Comment #6 (CMS-2249-P2): Limiting Choice by Eliminating Needed Options

The proposed rules contemplate eliminating choices that are deemed “institutional” at the discretion of the Secretary of Health and Human Services:

We note that home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities for mentally retarded, hospitals, or any other locations that have the qualities of an institutional setting as determined by the Secretary. In considering whether a setting has the qualities of an institutional setting, we will exercise a rebuttable presumption that a setting is not a home and community-based setting, and will engage in heightened scrutiny, for any setting that is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex. We expect to issue further guidance regarding such settings. Other characteristics that could cause CMS to consider a setting as “institutional” or having the qualities of an institution would include, but not be limited to, settings which are isolated from the larger community, do not allow individuals to choose whether or with whom they share a room, limit individuals' freedom of choice on daily living experiences such as meals, visitors, and activities, or limit individuals' opportunities to pursue community activities.

Some of the most creative living arrangements that I have seen or read about have come from parent groups that have designed housing and living situations that fit the needs of their disabled family members. These groups are exceptionally frugal because they have to be. They are usually limited financially and they form strong bonds with community organizations, including churches and other non-profits, to help them achieve their goals.

HCBS waivers can be a major source of funding for individuals participating in these very specialized programs and living arrangements that are usually enthusiastically supported by the individuals themselves and their families. “A rebuttable presumption” that they are somehow “institutional” as determined by and at the discretion of the U.S. Secretary of Health and Human Services could very well harm or destroy some of these projects that have that have involved their communities in being part of their success.

Delete any language that would limit options that are person-centered, consumer-driven, and based on choice.