by Deborah Geesling
I shared a photo on one of our social media pages recently and it was by far the most popular post last year. Here’s what I wrote, “This was the sweetest moment over Thanksgiving. My son who struggles against schizophrenia and bipolar disorder was apprehensive about holding his little niece, our precious granddaughter. My oldest son showed him how to do it and he held her proudly with tears in his eyes.
This is why family & community are important for recovery. Our system separates those kinds of natural supports. It segregates people into a revolving door in the name of independence and the right to fail, yet the system fails to mentor & merge people living with SMI into everyday life. The result is people sitting in homes all day isolated, not growing in skills or able to hold employment. They are susceptible to drug use, sexual exploitation, cognitive delay, decompensation, poor eating and hygiene habits. This forces the state to spend more on medical and dental expenses. Frontline staff are not paid and trained well.
Our federal and state governments have had over 60 years to build an appropriate safety net for the severely mentally ill. Instead, they offload the ones who need help the most and are least able to speak for themselves. We need a better way.
President John F Kennedy in 1963 did have a vision for a better way. He was personally impacted by his sister Rosemary’s battle with a serious mental illness. In a speech before congress in February of that year he said, “With respect to mental illness, our chief aim is to get people out of state custodial institutions and back into our communities and homes without hardship and danger.”
Thus, the Community Mental Health Act was signed into law on October 31, 1963. How fitting that it was on Halloween because the nightmare for families has not ended. President John F Kennedy would be assassinated less than a month later and the leadership and oversight of this massive and well-intentioned overhaul would never bring the resources and accountability that we so desperately still need. Instead, it would be the beginning of a massive trans institutionalization out of hospitals. The result has been 350,000 severely mentally ill in our prisons and another 250,000 living on our streets (Frances & Ruffalo 2018).
There were a few legal milestones that were good and necessary and worth mentioning. In 1981 Arizona was met with the now famous lawsuit known as Arnold vs Sarn. From AHCCCS’s website it was, “A class action suit—against the State of Arizona alleging that the Arizona Department of Health Services/Division of Behavioral Health Services (ADHS) and Maricopa County did not provide a comprehensive community mental health system as required by statute.
In 1986, the trial court entered judgment holding the State (ADHS) and Maricopa County violated its statutory duty; the Supreme Court affirmed this decision in 1989.”
Chick Arnold shares his reflections on this lawsuit 40 years later in an interview with Amy Silverman, “Forty years later, legacy of Arnold v. Sarn lives on” he says, “Looking back on it, I think we were not enough. The constructs that were intended to be created, the housing opportunities, employment opportunities, the kind of respect piece that had been lacking from our system is still compromised. You know, dignity, respect, or honor serving people with disabilities in a non-patronizing way.”
In 1999, The Supreme Court, in response to the Americans with Disabilities Act, held that people with disabilities have a qualified right to receive state funded supports and services in the community rather than institutions in what is known as the Olmstead Decision.
A very good and important decision, yet we have been overzealous in its enforcement as it relates to how we decide what is appropriate and especially for those on the severe end of the spectrum who are incapacitated by their illnesses.
In Justice Ruth Bader Ginsburg’s opinion, she acknowledged this challenge but noted, “The ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting, such as a homeless shelter. Some individuals -may need institutional care from time to time to stabilize acute psychiatric symptoms. For others, no placement outside the institution may ever be appropriate.” -Ruth Bader Ginsburg
Enter SAMHSA, the Substance Abuse and Mental Health Services Administration, and the Recovery Model along with a focus on reducing stigma.
According to their website, SAMHSA’s working definition of recovery defines recovery as a process of change through which individuals improve their health and wellness, live self-directed lives, and strive to reach their full potential.
I think we can all agree that this is an honorable goal. However, we must acknowledge the smaller percentage of people who live with serious mental illness that cannot self-direct their lives at times, maybe they never will be able to. Instead of creating a system of care for this vulnerable group, we sift them out of our one size fits all model in the name of recovery, independence, and stigma.
I’ve been a part of our state’s mental illness system for over 12 years now with my son and met countless families through networking and our support group. The stories really haven’t changed much, in fact they may have gotten worse. In 2016 we passed the first of its kind Family, Caregiver and Guardianship Bill of Rights in Arizona, authored by Senator Nancy Barto. I have yet to see these principles in practice, I’m afraid it may be a bill of rights on paper only.
Our state seems to have allowed systematic creep, utilitarian in nature. Resourcing tax dollars based on the average need of the whole mental health system may make good sense in an administrative planning meeting, but it doesn’t translate well to the most significantly disabled in real life.
In a recent article published in Psychology Today, Drs. Mark Ruffalo and George Dawson write, “The main limitation in reducing involuntary treatment has been the fragmentation of care by governments and health care organizations. Rationed care reduces care to all patients with mental illnesses but most of the burden will fall on people who are not aware of or seeking help for their problem.”
A few more thoughts, In the 12 years of care my son has received, I can’t remember being given meaningful information about my son’s diagnosis and prognosis. I can’t remember being sent a simple survey (except when I started bringing it up). I receive email surveys when my son has an appointment with his primary care doctor, I receive a survey when I go to my own pharmacy, I receive surveys when I get screenings and blood tests. Doesn’t AHCCCS or Mercy Care want to know how the providers they contract with are doing? Don’t they want to improve patient care?
I have met many kind and qualified people involved in my son’s care. But I am also concerned that some front-line workers are not fully trained or compensated. This puts staff and patients at risk. These very vulnerable people deserve our best. So do peers and behavioral health technicians.
If there is no willingness to admit these gaps in care, then perhaps we should begin thinking outside of the box. Another mother I know has two adult children living with severe schizophrenia. Their care has been abysmal. She asked me if I thought it would be possible for Mercy Care or AHCCCS to give her the money they spend on her children so she could take them to John’s Hopkins Hospital in Baltimore. I don’t know, maybe vouchers aren’t such a bad idea. It would certainly give families more voice and choice.
In not making the severely mentally ill a priority, we have results like a 64% readmission rate at our well-funded behavioral health residential facilities and atrocious recidivism rates for people with SMI from our prisons. We must name and be honest about the gaps, and we need focus.
Here are four categories, though not exhaustive, where I believe we could make some progress.
- Diagnosis and prognosis. How does our current system track this? And why aren’t families and individuals given a care plan like we do for other illnesses?
- Discharge planning. How can we improve the criteria? What is our current inventory of housing? What do we need that is specific to this population?
- The Family, Caregiver and Guardianship Bill of rights. We have seen clearly through legislation that doctors and behavioral health workers are allowed by law to have conversations regarding care and resources? Why isn’t this happening? What does the implementation of this look like in evaluation centers? Clinics? Hospitals? And care homes?
- And finally, front line workers. What is the current pay scale? How can we improve this? How can we improve certifications and training? I believe these are important steps toward making the most severely mentally ill and their families successful in their communities without the hardship and danger that President Kennedy envisioned.
At the Hubert Humphrey Building dedication, Nov. 1, 1977, in Washington, D.C., former vice president Humphrey spoke about the treatment of the weakest members of society as a reflection of a government: “The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life, the sick, the needy and the handicapped.”
We have an opportunity here to make a difference on behalf of people who will most likely never be able to thank us or give back. At the end of our lives, I believe this will be what matters, helping those who need it most with the grace we’ve been given.
To paraphrase my pastor, “Not everyone who needs help can ask for it. Our streets and prisons are full of people sentenced to a life with special needs. “Let’s hear the silent needs of those who are in the shadows of life and move to help. Let’s prioritize this group and bring them out of the shadows and into a brighter day of healing and dignity.