Accidental Advocate

Accidental advocate

Four years ago, I published a memoir about taking care of my Schizophrenic brother. When I was working on the book (Shot in the Head, a Sister’s Memoir, a Brother’s Struggle), I did research into national statistics on mental illness, and I was horrified. My family had always thought the poor care my brother received was a horrible mistake. We thought that his social workers must not have realized that the modern psychotropic medications—reputed to virtually cure psychosis—didn’t really help him. They must not have realized that he needed to live in sheltered, supervised housing, not be expected to take care of himself. But, to the contrary, we found this abandonment of people with serious mental illnesses (SMI) to be a nationwide scourge. He was one of hundreds of thousands, even millions of people suffering from serious mental illness, abandoned by the country’s mental health system, destined to a miserable half life of delusions, homelessness and victimization. More than one percent of our population suffers from schizophrenia (that’s over 3 million people), and more than half of them need the kind of care my brother needed. And they’re not getting it.

Most people with a serious mental illness cannot keep a job. Their families often try their best to help them, but they simply can’t handle them when they’re as difficult as my brother. They depend on social services, notably Medicaid, for health care coverage.  Medicaid does a decent job of  providing medical care to the least fortunate of our fellow citizens if they suffer from diabetes or bronchitis, cancer or eye infections. Medicaid pays for their care for physical ailments, even if it involves a multi-week stay in a hospital. But Medicaid funds, from its inception in the mid 1960’s, were barred from caring for people with a psychiatric illness on an inpatient basis. The legislation prohibits its use in the treatment of adults (persons between the ages of 21 and 64) in facilities having more than 16 beds for the specific treatment of mental disorders, a.k.a. institutions for mental disease (IMD). It also effectively prevents the management of long term supervised housing for people whose mental disabilities prevent them from living independently.

Congress included coverage for Alzheimer’s disease and intellectual disabilities in Medicaid legislation; many of us have a grandmother or other senior relative being cared for in a nursing home because of their dementia, the care being paid for by Medicaid. But when the Medicaid legislation was passed there was a concern that if IMD’s were included in the Medicaid program, the states would continue to warehouse people in hospitals instead of providing services in the community, which was their goal. That reasoning has not lived up to the promise, however. Without funding, most IMD’s have closed. Yet communities have failed to provide adequate comprehensive community-based services to take their place, leaving those with serious mental illnesses without adequate care.  No institutions are helping families care for their seriously mentally ill loved ones anymore. Those who are ill are ferried into ERs, then released with a bottle of pills and no real help—if they are lucky. In many cases, they end up in prison, or shot by police called to help the family when their loved one is acting out.

My brother Paul, luckily, never ended up in jail or shot by police, but he was given desultory care, at best.  He was too dangerous for us to let him live at home with us, yet the “adult homes” he was placed in were inadequate for the severity of his symptoms.

I determined that this had to change. I joined up with organizations of family members like me who were lobbying Washington DC for improved care practices. Organizations like the Treatment Advocacy Center, and advocates from Baltimore, Sacramento & Los Angeles, New Orleans—all over the United States. And things have begun to change. With the implementation of the 20th Century Cures Act last year, the Substance Abuse and Mental Health Agency (SAMHSA) has a new, cabinet level head of the subagency that deals with serious mental illness, and they are revamping its activities to make sure those who are most seriously ill get the treatment they need. I now serve on the communications committee of the National Shattering the Silence Coalition, an organization of activist like my self who are fighting to have the IMD exclusion to Medicaid repealed.

There is much more work to be done.  

And now I have added another cause to my advocacy, another response to my writing.

When my teenaged nephew died of a heroin overdose, I had no intention of getting involved in any further advocacy work. I wrote the poetry which eventually became my chapbook, Aftermath, from my sense of sorrow, not with any didactic interests. I found I had to slow down and let the grief sink in. Everything I saw around me was tinged with loss. I had to make sense of this, and of the changed circumstances of my family.  When more sorrows arose—the deaths of two people close to me—it compounded my grief. The collection became a kind of meditation on loss and a search for renewal. 

Yet again, I have found myself immersed in advocacy. I am appalled at the greed and ineptitude that have contributed to the opioid crisis. I am mystified at how little current treatment standards do to help people with substance use disorder (SUD) overcome their addiction and move on to a productive life.  I now speak out for tighter regulation to hold rehab centers accountable for the efficacy of their practices, including evidence- based practices for rehab treatment.  And I encourage efforts to hold accountable the drug companies whose aggressive marketing of drugs like OxyContin contributed to the crisis.

The news is filled with articles about lives lost to opiates. West Virginia and Kentucky may be the epicenter of the plague, but no town in the U. S. has escaped the scourge.  About 75,000 people died of an opiate overdose in the past year. We also, all too often, are horrified to read about yet another mass shooting, many of them involving a shooter with untreated mental illness.  And for every life lost, an entire family suffers.

Congress appears to have come to the realization that the IMD exclusion is preventing the funding of care for people trying to overcome their SUD, as well as those with a SMI.  So people who cannot afford inpatient care try to deal with their issues using outpatient services. There is legislation in the works that may, at least temporarily, allow Medicaid funds to pay for up to a month of in-patient treatment. The legislation is incomplete, however, as it does not take into account how many people with SUD are also suffering from a severe mental illness. Both conditions need inpatient medical care, using verified treatment methods and holding the treatment facility accountable for statistically positive results.

I speak out whatever chance I get about the need for better treatment of both SUD and SMI. (I’m becoming a master at acronyms!) All kidding aside, I am reminded of the parable of the Good Samaritan, who found a man from another town beaten and robbed in a ditch. He took the man home and nursed him back to health. Growing up, we were taught that we must care for people who suffer, help them back on their feet. I guess the lessons sunk in.

One of my poems in Aftermath includes the lines:

Even then you and I sensed this could happen only once. Our lives/ 

would now have a before and after.

Caring for my brother was an experience like that. Losing my nephew was an experience like that.  Sometimes we go through a difficult time in our life and we are changed. In my case, I became – quite by accident – an advocate. 

***

Katherine Flannery Dering is a writer and mental health advocate and serves on the communications committee of the Shattering the Silence Coalition, (http://www.nationalshatteringsilencecoalition.org) an organization that seeks to highlight the need for better care for the millions of people suffering from serious brain disorders. She believes words can effect change, and she hopes her words help in this effort. She also blogs on behalf of sensible controls over illegal opiates and results-proven rehab programs.

Her chapbook, Aftermath, began during the weeks following the death of her teenage nephew from a drug overdose. During the ensuing months, two other close friends died, as well. This collection is, in part, reflections on the question, How do I make sense of my life in the face of death’s inevitability? How do any of us?  She empathizes with other victims of the country’s opioid epidemic and encourages family survivors to speak out for better, evidenced-based treatment. These poems delve into the sorrow of losing someone to drug addiction and asks the question, where do I go from here?

Ms. Dering has lived in Westchester county, New York for over thirty years. Currently, she serves on the executive committee of the Katonah Poetry Series, is on the board of the local chapter of the League of Women Voters, and is an active member of the Pound Ridge Authors Society.  She blogs at www.deringkatherine.wordpress.com.  Visit her website at www.katherineflannerydering.com.  Her chapbook, Aftermath, is available at  https://www.finishinglinepress.com/product/aftermath-by-katherine-flannery-dering/   and at Amazon. Her memoir, Shot in the Head, A Sister’s Memoir, a Brother’s Struggle is available at Amazon.

What Survivors Do

Four years ago this January, a close family member, a teenager, died of a heroin overdose. As you can imagine, the whole family was terribly upset. The boy’s parents were overcome with grief. We’re a large family, and we were all stunned. I knew that the boy had been dealing with an addiction issue, and that he had dropped out of high school; his parents didn’t know what to do with him. But I didn’t know much more that that. His parents had put on a brave face and said he was in this rehab or that rehab and they were hoping for the best. But their hopes were dashed when, less than a month after a year long – and very expensive – stay in a rehab place, he OD’d.

The story is way too common. According the the Center for Disease Control, opioids were involved in 42,249 deaths in 2016; opioid overdose deaths were five times higher in 2016 than 1999.  And every one of these drug-related deaths left behind many more grieving friends and family. People suffering from addiction slip in and out of rehab centers and detox programs, but they very often relapse. Think of someone like Amy Winehouse: such a promising performer; she entered several treatment programs but didn’t make it. Is this the best our medical establishment can do?

A couple of months ago, I was speaking with a representative of my college alma mater—we’ll call him Allen—who was trying to convince me to donate some money to the university.  Allen knew of the book I wrote a few years ago about caring for my brother, who suffered from severe and treatment resistant schizophrenia. We talked for a while about the advocacy work I’ve been doing to try to improve care for people with serious mental illnesses. And then I described my new poetry collection, Aftermath, which was written in the months after my young relative’s overdose death.  

Allen nodded his head a few times as I spoke, then said that I was the first person he’d met who actually knew anyone who was mentally ill or had died from a drug overdoseHe’d read about the “opioid epidemic” in the newspaper and on line. At our country’s all-too-frequent mass shootings, or in stories about homeless people, there is often a reference to people being mentally ill. But he said he’d never been directly touched by it, himself. Our conversation drifted from one topic to the next, as conversations often do. And then, out of the blue, Allen said, “You know, a cousin of mine committed suicide a couple of years ago. And we had an uncle who suffered from terrible depression and was in and out of the hospital.”  

In half an hour he went from being “not directly touched” to describing two close family members who suffered with mental illness. 

It is likely that in his universe of friends and family there is also someone with an addiction problem. I don’t wish it on him, or anyone, but statistically, it is likely.  Still, people don’t talk about it. Addiction and mental illness are judged as if they are the result of weakness–a lack of willpower or simply a behavioral issue that victims can work their way out of, if they would just try harder. And so people don’t talk about it; they are ashamed to talk about it. Only when my conversation had normalized the topic did Allen remember the uncle and cousin. We don’t like to even think about it.

Where we are at the federal level

SAMHSA – the Substance Abuse & Mental Health Services Administration—the government agency assigned to deal with these problems—is overwhelmed and underfunded. And one of the persistent problems they face is limiting their funding to evidence-based practices for treatment.  Elinore F. McCance-Katz, MD, PhD, the new Assistant Secretary for Mental Health and Substance Use, issued a statement in January of 2018 regarding the National Registry of Evidence-based Programs and Practices (NREPP) and SAMHSA’s new approach to implementation of evidence-based practices (EBPs). 

She said that SAMHSA has used the NREPP since 1997 to help them decide what to fund. For the majority of its existence, NREPP vetted practices and programs submitted by outside developers – resulting in a skewed presentation of evidence-based interventions which did not address the spectrum of needs of those living with serious mental illness and substance use disorders. They presented programs they knew how to run, rather than the programs people might need more. These needs include screening, evaluation, diagnosis, treatment, psychotherapies, psychosocial supports and recovery services in the community. In other words, programs previously defined as successful don’t, on further study, really get to the heart of the problems. So what is a successful program? 

Defining “Successful Rehab”

I’ll let professionals analyze the entire spectrum of community needs. But I think I share my definition of a successful drug rehab program with most people. A successful program would be one which treats anyone in the community who needs it. One where at least three-quarters of the participants complete the program, and where 80% or 90% of those who complete it are still drug free five years later. Sounds reasonable, don’t you think? But my young relative who relapsed, to deadly effect, was not an outlier. What happened to him is the rule, not the exception.

Treatment results are not impressive. According to one on line site, (which I picked because they seem proud of their efforts)

  • Inpatient treatment (combining medication and counseling with an average stay of 31 days) costs $3,200 on average.*** 73% of addicts complete treatment and 21% (of the ones who complete the course) remain sober after five years.
  • Residential treatment (average stay 71 days) costs $3,100 on average. 51% of addicts complete treatment and 21% remain sober after five years.
  • Detox—which is medically assisted, and can go on for and average of  227 days—costs $2,200 on average. 33% of addicts complete treatment and 17% remain sober after five years.
  • Outpatient drug-free treatments—lasting 164 days— cost $1,200 on average.*** 43% of addicts complete treatment and 18% ( of the 43%) remain sober after five years.

     (***I’m not sure what these costs refer to: weeks? complete program?)

These statistics, as weak as they are on their face, are even worse than they first appear. For example, 21% of 73% is 15%. That means that only 15% of people who start an inpatient treatment program are still clean after five years.  And the stats for detox are much worse: 17% of 33% is 5.6%. In other words, under 6% of people who go into detox are clean five years later. And so on. How can anyone consider this a successful program? And is it the program itself or follow up care in the community? What is going wrong?

In McCance-Katz’s statement, after some analysis she concluded,  “We know that the majority of behavioral health programs still do not use evidence-based practices: one indicator being the lack of medication-assisted treatment, the accepted, life-saving standard of care for opioid use disorder, in specialty substance use disorder programs nationwide.”  What I read her to be saying is that people around the country are paying for, and placing their hopes on, programs that often do not use the practices that actually work. This has to change.

Of course, we can all wish that the drug companies would be more responsible and that criminal drug cartels didn’t exist.  In the meantime, we can put pressure on the medical research establishment to figure out why some people seem to become addicted so easily, while others don’t. We can also ask those researchers to identify treatments that have been proven to actually work. And we can help our addicted loved ones find a treatment program that has been proven to work better than most. 

To do that, we have to talk about it. We have to be willing to face up to the problems we see around us. If we knew a relative or friend had cancer, we wouldn’t hesitate to mention a reputable treatment center for the disease. We can do the same for substance abuse and brain disorders.

And we can demand that our lawmakers fund research to discover causes and better approaches to cures. We voted for them. Our taxes pay their salaries. Let’s demand that they support Dr. McCance-Katz’s efforts to find evidence-based practices that work for the big problems. Sometimes those of us who have already lost our loved one have a valuable perspective on what works and what doesn’t. Those who have seen someone turn their life around also have learned much from the process. Let us all speak up.

Follow Up 

This is the official SAMHSA website that will direct you to a treatment program that at least has a chance of working:  https://www.samhsa.gov/find-help

And this is SAMHSA’s National Helpline

1-800-662-HELP (4357)
TTY: 1-800-487-4889

Website: www.samhsa.gov/find-help/national-helpline

Also known as the Treatment Referral Routing Service, this Helpline provides 24-hour free and confidential treatment referral and information about mental and/or substance use disorders, prevention, and recovery in English and Spanish.

The Center for Disease Control also has several valuable links about substance abuse disorder and an outline for ways for reduce overdose deaths.

 

For more information on my book, Aftermath, click here.