Author: Adrienne Kennedy, MA – 7/17/2018
On June 30, among the 15 of my board member peers, I was elected to serve as President of the NAMI Board of Directors for 2018/2019. I am honored and humbled to be provided the opportunity to represent the hundreds of thousands of families, peers and avid supporters who comprise this important movement.
When I found NAMI in 2005, our son and our family had logged 6 years coping with serious mental illness: five hospitalizations interspersed with a few months or, occasionally, many months of recovery in between. We were fortunate to have had many good experiences with excellent clinical care: great engagement and great doctors. Notwithstanding the first four relapses, we thought we were moving forward, gaining the necessary insight and coping skills. It appeared that our son had secured a winning formula: trust, treatment, recovery.
Nonetheless, illness relapses—especially those that intensify and strip away insight—can obliterate years of progress in these sudden catastrophic neural storms: each episode more traumatic and more precipitous than the last.
Tragically—over time—our son’s anosognosia went from temporary lapse of insight to intractable reality.
Over the years, every system failed our son.
Our family safety net was simply not enough. Our love, energy and commitment—none of it was enough. Nothing any of us tried could pull our son back to safety. The mania, the paranoia, the raging psychosis—the illness and the unrealities became more totalizing, more engaging, more compelling, more familiar and more trusted than even his closest relationships with family or dear friends. Our son was held hostage by his symptoms.
We all were caught in a labyrinth of systems so broken that nothing we tried and no path we pursued—even with all the vigor and valor or the resources we put to it—could manage anything but short-lived interventions without any forward traction.
By September 2008, just weeks after our son’s 33rd birthday, our son with a serious illness, became our son with state and federal felony charges, being held on a $185,000 bond.
You can imagine the years between 2008 and 2010: 23 months in county jails, forensic hospitals, federal medical prison for assessments—inadequate treatment, woefully-inept assessments, horrific conditions, administrative segregation, accelerating PTSD from the haunting realities of jail episodes. Only to be released on years of probation, as a felon, without appropriate treatment, trying to restart his life at 35.
In October 2016, our son died at the age of 41 from the daunting complexities and limited capacity to manage insulin-dependent Type 1 diabetes, languishing without insight—refusing treatment—lost in intractable symptoms and riveted with paranoia against the people and the systems that had failed him.
Our son’s death has only heightened and galvanized my resolve to fight fearlessly and advocate across all platforms for a system that effectively serves all people with mental health conditions, irrespective of age, diagnosis or severity of symptoms. As those who published blogs this week have so eloquently pointed out, this vision is far from the reality of today’s system of mental health care.
One of my resounding goals as President of NAMI is to establish and solidify a unified national advocacy movement. We simply must achieve systems that guarantee that people not fall through the cracks. Yet, given that barriers are numerous and significant, they require steadfast, strategic and united efforts to overcome them.
I share the repeating frustrations about outdated policies and practices that create unnecessary and, frankly, too often lethal, barriers to care. For example, I strongly agree that the Institutions for Mental Diseases (IMD) exclusion is a discriminatory provision that should be repealed with clear quality requirements and continuity of care. We also need better options after discharge from inpatient care to prevent the high readmission rates that we and so many others experience.
I also understand the upset and anguish of caregivers who are hampered in their ability to provide care due to the unwillingness of providers to share basic information because of HIPAA or their misunderstandings about HIPAA, or the barriers or contradictions in each state’s “mental health code.” What makes this even more frustrating is that the interpretation of HIPAA—as barring communications with caregivers—is frequently incorrect or tragically mis-applied.
The good news is that the tide may be beginning to change. A federal agency has recently clarified the circumstances under which it is permissible to share mental health information with caregivers, see guidance and decision chart. This provides us with the opportunities to educate providers and change the culture of silence that too often proves harmful to those we love.
I also believe there is an important place for Assisted Outpatient Treatment (AOT) in the array of options for responding to people with severe symptoms. But, AOT laws, which currently exist in 47 states, are only as good as the services and supports in place for those under court order, as well as for those who voluntarily seek care. And, in implementing these programs, we must take on the challenge of ensuring that treatment provided is humane, non-coercive, and that individuals are engaged to the fullest extent possible in decisions that are made about their own care. We need to identify and share all important lessons regarding engagement, wrap-around services, permanent supported housing, peer support services, effective therapy and solid education about these conditions—all with the goal of improving life circumstances and supporting each individual at any stage of his/her illness. NAMI’s recent report on engagement, which I contributed to, sets forth this vision.
Additionally, I believe the following five priorities are essential for improving mental health care:
- Expand coverage for mental health and substance use disorder care in private insurance, Medicaid and Medicare. NAMI has long fought for parity and against harmful cuts to Medicaid. Last year, NAMI worked tirelessly to preserve hard-fought gains in private insurance and Medicaid for people with mental illness. Without coverage, talk about specific services and supports is a moot point. This is why NAMI will always prioritize advocacy for coverage of mental health and substance use disorders.
- Implement first episode psychosis programs on a nationwide basis. Extensive research shows that Coordinated Specialty Care (CSC) in early psychosis programs helps young people with psychosis get significantly better. CSC is changing the trajectory of mental illness and helping young adults stay on track with their lives. Importantly, research shows that the earlier youth get this effective treatment, the better the outcomes and the lower the cost. There were no programs for treating early psychosis when my son first experienced symptoms. As a mother who intuitively fought these battles alone, without the research we now have to inform good care practices, I am strongly persuaded by how very different our son’s progress and outcome would have been if he’d had access to Coordinated Specialty Care.
- Decriminalize mental illness. People with mental illness continue to be incarcerated at high rates, one of the most horrific outgrowths of failed mental health policies and practices. NAMI has been a leader in promoting Crisis Intervention Teams, or CIT, and many NAMI local and state affiliates work closely with sheriffs, police chiefs, judges and others to reduce the unnecessary jailing of people with mental illness. But, more needs to be done. Earlier this year, I was one of 31 people—and the only family member—appointed unanimously by all 9 Texas Supreme Court Justices and all 9 Judges of the Court of Criminal Appeals to serve a three-year term on the newly-established Texas Judicial Commission on Mental Health. My work on this Commission is helping fuel my work with NAMI at the national level.
- Increase supportive housing. NAMI is a leader on Capitol Hill in advocating for federal programs that support housing for people with mental illness. Earlier this year, we achieved significant increases in funding for housing and will continue to press for more housing options across the full continuum. If there’s one thing I’ve learned over the years, it is that a “one size fits all” approach doesn’t work for people who have complex and varying needs.
- Continue efforts to educate communities and the public about mental illness and the importance of compassionate responses. There were literally hundreds of people—dozens whom our son interacted with regularly—many of whom recognized how sick –both physically ill and severely-mentally ill our son was. How many, if better informed by widespread, compassionate public-service education, could have intervened by calling 911 and saving his life? And, on three occasions when, in fact, he was taken to the trauma-level ER—in the same hospital where he had been hospitalized a few years earlier, ER personnel could have/should have easily accessed years of his medical records in the hospital’s files, including past orders of protective custody and inpatient commitment, had they only looked for his records, and acted effectively.
The realization that my son’s life could have been saved had there been greater awareness of his mental illness and effective system changes profoundly reinforces my belief in the importance of expanding educational efforts and community awareness campaigns for compassionate care. We must focus not only on families and peers but also on providers, credentialed professionals and broader communities.
Finally, I want to emphasize, yet again, that we all want better lives for our loved ones, many of whom have suffered tremendously. We need a range of solutions to address needs across a spectrum. To achieve these solutions, peers and families must work together.
The mental health advocacy community has a long history of divisiveness and we have gained little from being divided. We are not strong enough to succeed as small, fractured organizations. We must stand together and demand effective mental health care.
As NAMI’s President and as someone whose family member died an avoidable and tragic death, I am dedicated to improving mental health care and eager to work collaboratively toward our shared goal.
Adrienne Kennedy, MA, retired educator/administrator/researcher, devotes herself to NAMI and to key issues of policy, advocacy and education, after profound experiences with severe mental illness of her father and her son, both now deceased. As her son’s crises required her full-time caregiving, she resigned her doctoral candidacy (UT Austin), discovered NAMI in her local community and became active, first as advocacy chair (2006-2010), and later as affiliate president (2011-2013) of NAMI Austin. Ms. Kennedy was elected to the national board (first term 2014-2017; second term 2017-2020). She also is active as a trainer in NAMI’s signature programs for family members and for providers. In July, she was elected the 2018-19 national president of NAMI by her fellow board members.
Note: This piece originally appeared on Pete Early’s blog. When Pete’s life was turned upside down by the events recounted in his book Crazy: A Father’s Search Through America’s Mental Health Madness, he joined NAMI to advocate for strong mental health reform on the public stage.