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…”
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The life of Eric Walton … mental illness and fear until the age of thirteen. Now, three years after diagnosis and treatment, Eric talks about what it is to have bipolar disorder, what it is to grow up surrounded by fear and stigma, and what each person can do to help fix the issues surrounding mental illness. He helps us understand, from the inside, his journey from fear to strength.
His mother Liza Long responds to the Parkland shooting:
“What worked best for my son was the correct diagnosis. But sadly, the level of treatment we were able to access because of my viral essay remains out of reach for many children and families. In my response to the Parkland shooting published on 'The Mighty' and on my blog, 'The Anarchist Soccer Mom', I called on Congress and the NRA to fund research and treatment for mental illness"
San Francisco Bay Area mother, who believes the mental health care system is failing patients, is fighting for change.
[Sorry about the ads!]
The Ann Arbor News featured a long article about the decrease in funding for Community Mental Heatlh (CMH) services in Washtenaw County: "Analysis: Where has all the money gone? Washtenaw County's mental health mess" by Ben Freed, 11/15/15.
Kudos to Ben Freed for figuring this out and analyzing a mess similar to the results of Humpty Dumpty falling off the wall in the nursery rhyme. Freed has unscrambled the egg and now I am trying to understand and translate his analysis, so that us ordinary people dealing with the mental health system can at least have a clue as to what happened.
The CMH system provides services primarily to people with developmental disabilities, mental illness, and drug abuse problems. For individuals who are eligible for Medicaid and are developmentally disabled, Washtenaw County CMH still has a responsibility to provide them with all services that are deemed medically-necessary through a person-centered planning process that results in an Individual Plan of Services (IPOS). Most people with developmental disabilities fall under this category. This has not changed, but many other people who were previously covered by CMH who do not fit that category, have found themselves with greatly reduced services or none at all. This is bound to affect the entire system.
What Happened?
Washtenaw County's mental health services budget was $80 million in fiscal year 2012 and has fallen to $66.7 million in Fiscal Year 2016.
Where has the $14.3 million gone? Freed breaks it down into several categories to account for the lost funds.
$3.86 Million: The WCHO deficit
The Washtenaw Community Health Organization was formed in 2000 in partnership with the University of Michigan and was designated the Prepaid Inpatient Health Plan (PIHP) for a four county area as well as the CMHSP (or what had previously been called the CMH ) for the County. The PIHP is a regional administrative agency that distributes Medicaid funding to the counties belonging to its affiliation and the CMHSP provides the services.
Within the WCHO, Medicaid funding and the number of people served would fluctuate over the course of a year and deficits in one county, usually Washtenaw, would be plugged by surpluses in other counties. This practice was not hidden and it was the accepted way of balancing the budget. Sometimes infusions of state funding would also fill the gaps.
By 2014, it became clear that the gap had reached unmanageable proportions and a Washtenaw County Behavioral Task Force recommended dissolution of the WCHO and a takeover by Washtenaw County government to provide better oversight and monitoring of CMH. There were also changes in state funding and the PIHPs that eventually led to substantial changes:
“A new organization, the Community Mental Health Partnership of Southeast Michigan, was formed to take over PIHP duties from the Washtenaw Community Health Organization, which was eventually phased out as an entity in 2015. Its county functions were absorbed by the CSTS [Community Supports and Treatment Services], which took on the name Washtenaw County Community Mental Health.”
Cuts in services to offset the deficit have been the source of controversy and have led to devastating results for some County residents.
$8.5 million: Medicaid and carry over
Medicaid funding accounts for 80% of the Washtenaw CMH budget. Medicaid funds can only be used for certain services for Medicaid-eligible individuals and cannot be used for other services or for those who do not qualify.
Here is where you have to watch the bouncing ball to understand what is going on with Medicaid:
If the economy improves, as it has in the last couple of years, fewer people qualify for Medicaid and funding to CMH goes down:
“As of June 2015, there were 3,333 fewer total Washtenaw County residents on Medicaid than the previous June—that number includes all Medicaid enrollees, not just mental health patients. In FY 2015, Washtenaw County received about $1.4 million less than was budgeted for that year and in the coming year the county's Medicaid payout will be down by $2.5 million.”
In previous years, any Medicaid money that was not used up could be rolled over into the next year’s budget:
In 2012, the WCHO had $8milliion to carry over to its next fiscal year. “By FY 2014 the carry forward had shrunk to $6 million and four months into the following fiscal year, it was gone. This year there is no carry forward money to help supplement the Medicaid dollars. At the same time, community living support costs grew from $10.4 million in FY 2010 to more than $22 million by FY 2014. Core provider costs had grown from $25.8 million to nearly $30 million over the same time period.”
Also, “Three of the four counties in Washtenaw County's PIHP region did not receive enough Medicaid dollars to fully fund their programs in FY 2014 and the $1 million surplus from Lenawee was distributed to help the other three support their deficits.”
$2.2 Million: The State of Michigan
Although the State Budget Office tells us that the state's total mental health budget - including the Healthy Michigan Plan (Medicaid expansion) - grew by 9 percent to a total of $2.8 billion in 2015, local CMH agencies are struggling with financial problems not addressed by the state or exacerbated by state funding decisions.
Michigan introduced its Healthy Michigan Plan (Medicaid expansion), in 2014, and more than 600,000 people signed up who had previously not had Medicaid coverage:
“Because enrollment was higher than expected, the state had less money to pay per patient than they had previously estimated. Approximately 15,000 people enrolled in the program in Washtenaw County, but the per-patient rate was adjusted down by $10 per month mid-year by the state.” This resulted in $1million less revenue than expected for Healthy Michigan Plan CMH consumers that will carry over into 2016.
Then, “with the new federal funding coming into mental health services, the state also took the opportunity to cut general fund allocations to county mental health agencies across the state.” Because this money had been used to fill in gaps for County residents who did not qualify for Medicaid or were on the borderline of qualifying, services that were once provided with general fund money, are the most adversely affected by the state’s decision.
As a result, “’You're starting to see those people in the ER, you're going to start seeing them in the justice system, people who had been under our care,’ Cortes said. ‘These are people we've been serving for more than a decade.’”
“…Washtenaw County's general fund allocation for FY 2012 was $8.36 million. In FY 2016 it is $2.8 million, but the state is also taking on about $1.9 million payments to state hospitals that previously came from the general fund allocations.”
What happens next?
There are state-level discussions going on to request an increase in general fund dollars for county CMH agencies. Washtenaw County Board of Commissioners has stepped up to continue funding of the county’s vocational training program. The County has also added a “structural $400,000 allocation to mental health from its general fund that will be paid for through the anticipated increases in taxable value in the county.”
“…St. Joseph Mercy Hospital and University of Michigan Health System have each pledged more than $100,000 to Community Mental Health and the Washtenaw County Health Plan is adding an additional $150,000. Those funds will all go toward direct services for people not covered by Medicaid.”
In addition, “The county is also in negotiations with the unions about maintaining staffing and pay levels for county employees”.
The article also covers the programs that are likely to be most affected by the changes in Washtenaw County and the services that will likely be dropped.
Read the full article here...
Another article, "What the mental health funding cuts mean for one woman's struggles" by Ben Freed, 11/15/15, follows the day-to-day changes in the life of a woman with severe mental illness whose services have been reduced or eliminated.
Recently, I came across an article on the Huffington Post Website by Liza Long, the mother of a son with bipolar disorder. The article, “5 Reasons I Wish We Would Stop Talking About 'Recovery' for Serious Mental Illness And the Word I Wish We Would Use Instead” (1/30/15), was written after a friend’s 22-year-old son, who had paranoid schizophrenia, committed suicide. The young man’s death was all the more poignant because the mother and son had been featured in a series of articles in USA Today on “The Cost of Not Caring”. The son was finally receiving the treatment he needed and seemed to be on the verge of successfully managing his illness.
The author reflects on the way we talk about mental illness as possibly contributing to the stigma experienced by people with its most severe manifestations:
“There's a popular quote floating around mental health advocacy circles: ‘Mental illness is not a choice. But recovery is.’ I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word ‘recovery.’ When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac….I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.”
“...The concept of recovery increases stigma, both within and outside the mental health community. ...if people recover, why aren't you recovering? …Recovery seems dependent on a prescribed set of treatments that may not work for everyone.”
“…Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.”
As the mother of two adult sons with profound developmental and intellectual disabilities, I see striking parallels in how disability rights advocates, intentionally or not, marginalize and stigmatize people with the most severe developmental disabilities.
Disability advocates talk about high expectations rather than recovery. Low expectations, they say, are barriers to achieving independence, productivity, and full integration into the community that all people with disabilities can be expected to achieve. These admirable goals may be achievable by some people with even the most severe disabilities, but certainly not by all. What about 38-year-old Danny, who functions at the level of a 6 - 12 month old infant and needs total help and assistance to accomplish anything. Independence and productivity are pipe dreams for Danny, but maybe we can blame that on his mother who hasn’t expected enough of him.
And why pay for all the things that Danny does need, such as competent and compassionate care in a setting that offers him comfort, pleasure, and a meaningful life, when these things will never change him into a person who can meet expectations set by others? What does "full integration" mean for a person who can't communicate in any specific way or take care of himself? For people with disabilities who really can overcome barriers and achieve ordinary and sometimes great things, doesn't their association with a person like Danny make them look bad? What could be more stigmatizing for Danny than being set apart as a person who is using up Medicaid funds that should go to people who are more "deserving" and who "can really amount to something"? Even his existence may be an embarrassment for those attempting to show that people with disabilities are worthy of public support.
The Home and Community-Based settings rule from CMS, the federal agency that regulates Medicare and Medicaid, threatens settings most likely to serve people with the most severe disabilities such as center-based work programs, congregate residential programs, day and pre-vocational programs, and other congregate settings that serve more than a few people with disabilities in one place.
State and federal Vocational Rehabilitation (VR) systems are being overhauled by the 2014 federal Work Innovations and Opportunities Act (WIOA). According to proposed regulations for WIOA, “The foundation of the VR program is the principle that individuals with disabilities, including those with the most significant disabilities, are capable of achieving high quality, competitive integrated employment when provided the necessary skills and supports.” These are high expectations, indeed, but simply making that assertion does not change the capabilities of individuals with disabilities. What are we to think of people with disabilities who will not be able to find work under the condition that it be both competitive and integrated with work done by non-disabled people? Are they lazy? Unmotivated? What other excuse could there be?
At an oversight hearing in February 2015, Kathy Greenlee, the head of the federal Administration for Community Living (ACL), testified before the House Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. The ACL includes the Administration on Intellectual and Developmental Disabilities that oversees programs funded by the federal Developmental Disabilities Act. Greenlee stated early on in the hearing that the core idea behind her agency was that people who are aging and adults with disabilities should be able to live independently and participate fully in their communities. Later, (at about 1hour and 38 minutes) she was questioned by Representative Steve Womack from Arkansas about whether the goal of her agency was to eliminate long term care facilities for people with the most severe disabilities. Her response was that “We have become extraordinarily good in this country at serving people with significant disabilities in home settings and we continue to improve our ability over time."
When we look at the facts on how well we, as a country, take care of people with significant disabilities, we may come to a different conclusion:
(from the Madison House Autism Foundation Website via The DD News Blog)
- There are 3.775 million people with Intellectual and Developmental Disabilities (I/DD). 77% of them do not receive publicly funded residential supports.
- Of the 23% (1.127 million people with I/DD), who do receive publicly funded supports, 56% live with family and 44% do not live with family.
- Of the 44% who do not live with family, 27% of those live in their own home. The other 73% live in group homes, foster homes, nursing facilities, and less than 1,000 live in psychiatric facilities.
- 77,000 are on a waiting list for services needed in the next year. 853,000 are living with caregivers aged 60 or over.
According to the 2014 UCP Case for Inclusion, almost 317,000 people are on a waiting list for Home and Community-Based Services.
In Michigan, the Medicaid-funded Home Help program, that is intended to allow people who are aging and people with disabilities to remain in their own homes, is fraught with problems, including low pay for direct care workers who are often poorly trained and not up to performing tasks that are increasingly of a more complex medical nature. Many workers were found to be unreliable. Some workers being paid by the state were felons, although the state seems to have cracked down on this with background checks.
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Before we give ourselves a collective pat on the back for how well we take care of people with significant disabilities, we need a reality check. We can’t take care of people with the most significant disabilities well, if we do not admit that we have far to go before we can claim that “we are extraordinarily good at it”. We can’t take care of people with the most significant disabilities well, if we do not acknowledge, first, that they exist, and then that our expectations of what we would like them to achieve do not magically translate into their being capable of those achievements.
Hope is in my vocabulary, also, but it does not come from believing that Danny and Ian will overcome their disabilities. I know that my sons can be cared for compassionately by people who are up to the task because I have seen it happen and Danny and Ian have had the good fortune to experience some (but not enough) of that. Where do we go from here? We should start with seeking out and learning from individuals with disabilities and their families who experience the heart breaking dysfunction of our system of care and not allow ourselves to be distracted by false ideologies and wishful thinking.
At the last Washtenaw Community Health Organization Board meeting on 4/22/15, a packet of news articles about statewide problems with budget deficits and service cuts was distributed. These articles date from January 2014 to the present. Washtenaw County is its own special case, as the WCHO goes through a change from a "Community Health Organization" to a "Community Mental Health Agency" while also dealing with a $3.8million budget deficit. (More on Washtenaw County later).
The problems with state funding of Community Mental Health (CMH) services, including services to the developmentally disabled population, are complex. I am no expert on Mental health funding and it is likely that my take on it is not entirely correct, but this is what I think has happened based on news articles:
- Michigan's Medicaid expansion (Healthy Michigan) began enrolling participants in April of 2014;
- The State expected a large influx of federal funds to pay for health care to eligible citizens through Medicaid expansion and on that basis made large cuts to state Medicaid funding and to non-Medicaid General Funds that local agencies use to fill in the gaps for people not in the Medicaid system.
- The State also adjusted payments to counties to make funding more evenly consistent throughout the state, resulting in some counties receiving more Medicaid funding and some less than before.
- Large increases in people insured by Healthy Michigan and decreases in numbers insured by "regular" Medicaid have resulted in less funding for regular Medicaid mental health services, at the same time that the numbers served by the CMH system have increased. (Apparently, the two Medicaid systems are funded separately).
- The Governor's desire to use the increased Medicaid funding from the federal government as savings for future costs to the State, has made less money available to pay for current services.
- The legislature's expectation of increased federal funding to cover current and future costs was overly optimistic.
News Articles on State-wide Stresses on the Michigan CMH system
"Cuts likely necessary for Oakland’s Mental Health Authority, with $11M deficit", 4/7/15: $11million deficit...cuts to providers, programs, and layoffs likely…$14million reduction in Medicaid dollars from the state….some providers could go out of business…worst-case scenario - more cuts in 2016 fiscal year.
Kent County’s Community Mental Health authority Network 180 press release [no link available], 4/8/15: Board votes to implement agency-wide cuts…salary cuts…”adults with DD will see a dramatic reduction in daily support and services immediately”…new lower Medicaid rates in West Michigan to increase rates in other parts of the state…affected by unexpected drop in traditional Medicaid enrollment with introduction of Healthy Michigan (Medicaid expansion).
“Cuts threaten services for Oakland Co. disabled” 9/24/14: 2014-15 budget includes $20million in state aid cuts to general fund and $14million in cuts from Medicaid…Changes under the Affordable Health Care Act - “Michigan opened Medicaid to nearly 500,000 additional residents and moved their health care costs—including mental health care costs —off the state’s books and on to federal rolls”…..In anticipation of savings, state trimmed $75million from mental health spending for 2014-15 fiscal year…some cuts offset by federal dollars…number of people served by Michigan’s CMH system climbed from 184,708 in 2004 to 248,189 last year [2013]…
“Funding cuts send hundreds of mentally ill onto Detroit’s streets” 5/1/14: Detroit’s longtime round-the-clock homeless shelter turns out hundreds of people…no place to go…when state lawmakers passed Medicaid expansion, an infusion of federal funds was expected to make up for cuts based on anticipated savings…general fund dollars also cut…CEO of Detroit CMH on state plan: “It’s like, next month you need to pay the mortgage, and the state says, ‘Well your grandmother may die in the next six months and leave you the money.'”
“Local mental health programs face cuts” from Northern Lakes Community Mental Health Blog, 4/3/14 : “Community mental health groups across the state began to lose roughly 54 percent of their state-funded general purpose money on Tuesday, the same day enrollment in the Healthy Michigan Plan opened.” [General fund dollars, as opposed to Medicaid dollars serve people who do not qualify for Medicaid but nevertheless have needs served by the mental health system such as children, people on Medicare, and many people who are mentally ill.]
“Adult Foster Care Aid May be at Risk, Advocates Say” 5/30/14 from Kaiser Health News/Detroit News: “As part of major changes associated with the health care overhaul, also known as Obamacare, Michigan opened Medicaid to nearly 500,000 additional residents. That moves their health care costs — including mental health — off the state’s books and onto the federal government’s.”…state trimmed mental health spending for the current fiscal year [2013-14]by $75 million, Snyder wants to trim more…”The state’s not going to save as much as they think they are.”…Gov. wants most of the annual savings to cover future Medicaid costs…
“Michigan community mental health centers turning away patients, blame ‘flaw’ in Medicaid expansion” from mlive.com, 4/22/14 : “Local mental health officials say Gov. Rick Snyder's administration overestimated the savings from Healthy Michigan [Michigan's Medicaid expansion], resulting in a funding shortfall for CMH boards across the state.”…”While overall funding has increased, CMH programs are still left with funding gaps because the Healthy Michigan dollars can't be used to fund services for those who don't have Healthy Michigan coverage.”…”Vizena [from the association of CMH Boards] said he had hoped the state would have done a better job to make sure there wasn't a time gap between losing the general fund money and getting an influx of money through new Healthy Michigan enrollees”.
“Macomb, St. Clair County CMH cut services” 4/29/14: “Macomb County CMH is cutting services to about 1,350 people. St. Clair County Community Mental Health is cutting services to approximately 300 people. Sanilac County CMH is cutting services to about 90 people.”…St. Clair County uses the general fund money to cover people on Medicare...Medicare covers only about 80 percent of the cost of mental health services, the rest of which the CMH covers with general fund monies….general funds help cover “spend downs”, deductibles before insurance kicks in….
“Proposed mental health funding cuts could hurt Jackson’s uninsured, mentally ill population” from mlivd.com, 1/6/14: Maribeth Leonard, the CEO of Jackson County's mental health agency LifeWays - legislators are assuming too much under the expansion…In 2013, LifeWays served 2,780 patients who were uninsured or not covered under Medicaid with general fund dollars…
We know these are not just numbers, but human beings who don’t have a permanent place to call home with some of them inhabiting places that “are unfit for human habitation”. The weather forecast for 2/14/15 predicts snow showers, a high of 23 degrees, and a low of -10 degrees. Something to think about as we celebrate Valentine’s Day.
A report in the Ann Arbor News, "By the numbers: A quick look at the Ann Arbor area's homeless population" by Ryan Stanton, 2/11/15/, shows the results of two surveys of the homeless population in Washtenaw County, Michigan. A snap-shot survey required by HUD (the U.S. Department of Housing and Urban Development) showed 387 people were homeless on January 28, 2015. The second survey is part of a national campaign to end veteran homelessness by the end of 2015 and chronic homelessness by 2016. It includes more data and shows larger numbers than the first survey.
Here are figures I selected from the HUD survey that show the number of homeless people according to their various vulnerabilities, including chronic health problems and mental illness:
- 307: The number of homeless people who were found in shelters or transitional housing on the day of the count.
- 80: The number of homeless people found on the streets or in other places not meant for human habitation, including camp sites.
- 24: The number of sheltered veterans; 5: The number of unsheltered veterans.
- 53: The number of sheltered people with a severe mental illness; 41: The number of unsheltered people with a severe mental illness.
- 23: The number of sheltered people with a chronic substance abuse problem; 21: The number of unsheltered people with a chronic substance abuse problem.
The Zero: 2016 surveys provide additional data on people with chronic health and mental illness and other vulnerabilities:
- 334: The total number of homeless people surveyed.
- 224: The number of homeless people who were identified as being particularly vulnerable; 20 percent reported being violently attacked since becoming homeless and 25 percent reported being homeless for more than two years.
- 350: The number of emergency room visits in the past six months among the people surveyed; 174: The number of hospitalizations in the past six months; 115: The number of ambulance transports to the hospital in the past six months; 49: The number of people who indicated they've had three or more ER visits in the past six months.
- 165: The number of people who reported chronic health conditions; 243: The number of people who reported mental health conditions; 176: The number of people who reported substance use issues.
- 88: The number of people who reported all three: mental health, substance use and chronic health conditions.
- 37: The percentage of chronically homeless people who reported all three: mental health, substance use and chronic health conditions.
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."
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."
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"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.
According to the article, Kevin has exhibited sudden fits of rage since the age of 4, started taking psychotropic medications at 9, and was diagnosed with bi-polar disorder at 11. At the age of 13, he held up a Little Caesars pizza store with a toy gun, but fled before collecting any cash. After placement in juvenile facilities in Iowa and Michigan and problems with marijuana use, he was sentenced to prison at the age of 15 with credit for time served. This was the beginning of a downward spiral, however, as he racked up additional misconduct tickets for what appears to be behavior related to his mental illness rather than an inclination toward a life of crime.
"He has spent nearly a year of his current prison term in segregation [isolation], where his mental health problems appear to be punished instead of treated" according to Gerritt. One example cited in the article is when kevin "ripped a suicide blanket in order to hang himself. He was found guilty of destroying property, ordered to reimburse the department $145 for the blanket and given 12 day's loss of privileges." A horrible picture of Kevin taken in January of 2011 illustrates his predicament: he is chained to a bed with a helmet strapped to his head after refusing an order to stop banging his head against the wall.
Kevin is not alone. Trapped in a system that was never designed for the treatment of mental illness, more than 20% of Michigan's prisoners have severe mental disabilities, according to a 2010 University of Michigan study. Michigan closed three-quarters of its 16 psychiatric facilities between 1987 and 2003, and "now provides fewer beds per capita than all but five other states." In addition, according to the article, 65% of those with severe mental disabilities in prison received no treatment in the previous 12 months. Of the 1,000 prisoners in administrative segregation (where prisoners "are handcuffed when they leave their cells, eat off serving trays pushed through the slots of steel doors and generally lack the few privileges extended to those in the general population…") the percentage of those who are mentally ill is likely more than in the overall prison population.
What does this have to do with people with developmental disabilities? Many of them end up in the prison system, although not nearly as many as those who are mentally ill. While the deinstitutionalization of people with developmental disabilities in Michigan is celebrated by influential advocacy organizations, none of these advocates that I know of have voiced concern for the "at least" ten people who died when the last state-run institution, Mount Pleasant Center, closed in 2009. Nor do they mention the number of people with developmental disabilities who end up in psychiatric facilities or nursing homes when those specialized institutions close. There is also a reluctance to acknowledge problems with inadequate care and isolation in community settings. Instead we hear support for eliminating specialized services in group settings for people with developmental disabilities in the name of freedom and inclusion. This is supported by organizations like the ARC Michigan and the Michigan Council on Developmental Disabilities.
Rather than despair, Lois DeMott, Kevin's mother, cofounded Citizens for Prison Reform last year. This is from the MCPR blog:
"Our lives begin to end the day we become silent about things that matter."
