It is time for us to create a more global scorecard for all of brain health, which will prioritize votes that contribute to the massive changes still required to end medical discrimination against mental illness and addiction. This will not only hold candidates and officials accountable for their actions, but can create a platform to better educate them. A scorecard also offers the media an instant assessment of where candidates and officials stand. And it helps us get beyond assessing elected officials only on whether or not they voted for research funding for the exact illness we or our family members struggle with.
To be useful, the scorecard must include prevention, treatment, and enforcement of parity laws. These are also the keys to ending shame, stigma, and discrimination.
What do you want your elected officials to do and to demand, right now? In my opinion, this is the lowest hanging fruit:
Every medical examination must include a brain health evaluation, starting with the depression screen which, though it is now fully covered under the Affordable Care Act, many doctors still aren’t using. At every age, we need to be getting a simple “checkup from the neck up”* every time we see a healthcare provider. If you have any history of mental illness or addiction and your primary care physician isn’t asking you, at each visit, the status of your illnesses, talk to them about it. To ensure our clinical workforce is better prepared to deliver these screenings, all healthcare providers should be required to take additional Continuing Medical Education classes on current brain health issues to keep their license to practice; similar continuing education is needed for attorneys, judges, and law enforcement officials. Further, the Centers for Medicaid and Medicare Services (CMS) and all private insurers should not only encourage these screenings through reimbursement, but require that providers use standardized outcomes measures, such as the PHQ-9 questionnaire, to track patient progress.
Mental health screenings need to be tied to an aggressive plan of early diagnosis and intervention, since all mental illnesses and addictions are progressive and can be best treated—and perhaps one day cured—only by early recognition and a prevention system of coordinated services and supports. One of the best programs addressing this issue is the NIMH’s Recovery After an Initial Schizophrenia Episode (RAISE) project, which focuses on psychotic disorders and has specialty coordinated-care programs for individuals who experience early signs of psychosis. We need wide-scale implementation of these programs across our healthcare systems and in both urban and rural communities. This work will be life-changing and lifesaving for the next generation and will improve our ability to diagnose and treat initial episodes of all brain diseases.
The only way we can have modern facilities for integrated medical mental health and addiction care is if the federal government, once and for all, reforms the old Institutions for Mental Disease (IMD) exclusion to the Medicaid law in the Social Security Act. In the 1960s, the “IMD exclusion” was meant to prevent dilapidated “snake pits” from refilling their beds after Medicare/Medicaid was passed. But in the past decades it has been the single largest impediment to quality inpatient mental health care. The exclusion limits any facilities, old or new, that have more than sixteen inpatient mental health beds and more than 51 percent of patients with mental illness, from getting reimbursement from Medicaid for patients between the ages of twenty-two and sixty-four. This dramatically limits the number of inpatient beds available to patients in America, and has a horrible trickle-down effect through all of mental health care. Congress can either repeal or change the limits on the IMD exclusion; but it would be easier and quicker if the Department of Health and Human Services (HHS) simply mandated a change.
Every county in the country should be implementing a system of diverting individuals with serious mental illnesses or co-occurring substance use disorders into community-based treatment and support services instead of putting them in jail. The groundbreaking Eleventh Judicial Circuit Criminal Mental Health Project (CMHP) from Miami-Dade has been an incubator for programs, large and small, that can be emulated by counties nationwide. And for those already incarcerated with mental illnesses, states should adopt a version of the Mentally Ill Offender Community Transition Program in Washington State, a collaboration between the Department of Corrections and the Department of Mental Health that made a large impact on recidivism rates.
Records of mental health and substance use disorder treatment must be integrated into electronic health-record systems so that providers have the information they need to treat the whole person—which current law often prevents. Congress must amend the HITECH Act, which offers financial incentives to physicians and hospitals for implementing electronic records, but currently excludes behavioral health providers from those incentives. And CMS must extend reimbursement for use of electronic health records to mental health professionals and facilities. To make this integration successful, it is also critical that HHS amend the federal regulation “42 CFR Part 2.” While this privacy law was originally created to help limit the discrimination associated with addiction care by restricting access to treatment records and patient health information, in the electronic age, 42 CFR Part 2 impedes the ability of providers to coordinate patient care. We must absolutely continue to protect every patient’s right to privacy and ensure their information is not shared without consent—but at the same time, we should update the law to ensure it does not prevent individuals with substance use disorders from quality, comprehensive care.
We must make an impact on the nation’s rising suicide rate. We support the important work of the JED Foundation in schools and the American Foundation for Suicide Prevention. There’s a new effort called Zero Suicide that approaches suicide prevention in a unique and promising way. It is an effort to eliminate all suicides by patients in hospital settings—which are considered the nation’s most preventable suicides—by a unique systems approach involving everyone who interacts with patients, and not just their clinicians. The Zero Suicide tool kit also allows for a closer study of the processes leading to suicide attempts than anything available researching the broader general public. A collaboration between the National Action Alliance for Suicide Prevention and the Suicide Prevention Resource Center, the Zero Suicide program needs to be embraced by all medical facilities, not just those specializing in behavioral health.
We need to stop talking about “collaborative care” that is “outcomes driven” and actually start providing it. There are programs around the country that are already doing this right, and can be replicated in every primary care setting. One is the Mental Health Integration Program (MHIP) in the state of Washington, sponsored by the Community Health Plan of Washington, and Seattle and King County Public Health. It provides excellent collaborative care for all mental illnesses and substance use disorders by bringing together primary care and community mental health centers; and it uses a unique payment system tied to quality improvement metrics, and a patient registry that tracks and measures patient goals and clinical outcomes, facilitating treatment adjustments if patients aren’t improving. The other program is the chronic condition Healthcare Home initiative run by Missouri Healthnet, the state’s Medicaid authority, for Medicaid recipients with severe mental illness. It combines many of the latest ideas about diverting “high utilizers” from emergency room care into more long-term coordinated care, but is among the first in the country to include a focus on high utilizers whose primary medical problem is severe mental illness. Their cases are overseen by what are called “health homes” that combine aspects of primary care and community mental health, with cases actively overseen by nurse liaisons and case managers.
Brain Fitness programs should be required in all public and private schools. Brain health and fitness interventions help young people improve their traditional educations, but also allow development of better processing skills, promote emotional resilience, and help mitigate stress. They can also attack some of the underlying environmental causes and tri
ggers of mental illness—and the systems created by the interventions often help schools and parents identify at-risk students. Programs for executive function training, social and emotional learning, neurofeedback, mindfulness, and brain literacy are easy to integrate into school curricula and don’t take a lot of time every day. One of the best combined interventions is MindUP, developed with educators and neuroscientists by Goldie Hawn’s foundation; for social and emotional learning, we recommend the Responsive Classroom from the Center for Responsive Schools in northern Massachusetts (as does the Collaborative for Academic, Social, and Emotional Learning in Chicago, which has been evaluating these interventions for over twenty years); and for executive function training, the ACTIVATE program from Yale’s Dr. Bruce Wexler and C8 Sciences, which improves brain fitness with twenty-to-thirty-minute interactive gamelike sessions several times a week, and also has healthcare applications for students with attention and autism spectrum disorders.
No brain health research should be funded unless it employs the open science principles required to make its results shareable across disciplines and around the world. The same is true for all medical research, but research concerning the brain has been particularly slow to embrace these common sense ideas. All funders and researchers should incorporate the One Mind Open Science Principles into their protocols. These include informed consents for medical information collection that allow de-identified data to be shared to study a broad range of conditions, using the most widely accepted common data elements, and making data available to the research community as early as possible.
It is time for the Department of Health and Human Services and the Department of Labor to end the managed care secrecy that allows all American medical insurers (including the federal government) to discriminate against those with mental illness and addictions. These departments must use the legal power they already have to demand detailed disclosures of how insurers make their decisions to approve or deny coverage for all medical, surgical, and mental health care. Making this information transparent—on a state-by-state and plan-by-plan basis—is the only way to assure that the standards used for decisions on medical/surgical cases and mental health cases can be properly compared. It is also the only way to insure all medical conditions, and all patients, are treated fairly, and that we achieve parity. The law has required this disclosure since the parity act was passed in 2008—and in seven years neither HHS nor DOL have publicly sanctioned a plan to stop these obvious violations. So far, much of the discussion on this subject has concerned private insurance companies, but that isn’t fair. We also call on the major public insurers—the Centers for Medicare and Medicaid Services (CMS) and its various entities, as well as the Office of Personnel Management (OPM), which oversees medical benefits for federal employees, the Departments of Defense (DOD) and Veterans Affairs (VA), the Indian Health Service (IHS) and others—to disclose the same criteria and protocols for their coverage decisions, so both private and public insurers will achieve parity.
It is possible that we need to develop a more innovative way to share these criteria and protocols—perhaps in the form of blinded real-life scenarios and court decisions that can be used to guide decisions and clarify what violates the law, the way that the Internal Revenue Service often explains the ramifications of new tax regulations. It would also be essential for DOL and HHS to begin detailed random audits of health plans to determine compliance. But, as medical consumers, it is our legal right to know, in great detail, how and why decisions to restrict care are made. Our lives depend on these decisions, and in many cases there is no chance for a “do-over” if care was improperly withheld.
In our medical civil rights movement, getting this information and creating real fairness and transparency is the only way to finally rid the nation of its separate but unequal system of discriminating against Americans with mental illnesses and addictions.
And we call on the Department of Justice (and state Attorneys General) to get involved in enforcing such disclosures and transparency, since their investigations and consent decrees now often take the place of traditional regulation. Several of the largest medical insurance firms have recently announced intentions to merge. These mergers could reduce the number of large, national health insurance providers from five to three, further consolidating the power and leverage of this industry and impacting tens of millions of consumers. DOJ must use all of its powers to enforce our antitrust laws in these proposed mergers to protect consumers. No such merger should be approved as long as these companies are not compliant with federal law, including the Mental Health Parity and Addiction Equity Act, and until DOJ certifies that these mergers would not result in higher premiums and restricted access to care for patients.
These ten steps are just the beginning. There is a lot of work to do and, frankly, it is going to take contributions from everyone. The good news is that we already have many evidence-based programs ready to implement across our country, and smart public policies awaiting approval, passage or, in some cases, refunding. On the pages that follow, you’ll find our working list of the best of them to help you build your own Brain Health Scorecard and make your voice heard.
After the scorecard, you’ll find more information on how to stay connected with our work and our organizations, including the Kennedy Forum, One Mind, and the Mental Health Leadership Roundtable.
Thank you for joining me in the common struggle.
www.acommonstruggle.com
Appendix II
YOUR OWN BRAIN HEALTH SCORECARD
Beyond the lowest-hanging fruit, there are still many programs and policies that we know already work—yet they haven’t been fully adopted across the country. Below you’ll find our expanded working list of these programs and policy needs in a variety of areas. We hope you will find it a helpful tool in building your own Brain Health Scorecard—to help you inform your local, state, and national public officials about how they can change and improve care for all brain diseases. Just check off the policy areas and programs that interest you the most. Feel free to use the language to incorporate into e-mails with public officials.
With the 2016 elections approaching, this should be useful in helping you figure out which candidates to support.
At the Kennedy Forum website, www.thekennedyforum.org, you will find this list updated throughout the year, highlighting legislation currently being considered. You will also be able to find updated statistics on mental illness and substance abuse, and their treatment (and appalling nontreatment).
PREVENTION AND EARLY INTERVENTION
Congress should pass the Garrett Lee Smith Memorial Act Reauthorization to renew and expand provisions under the Garrett Lee Smith Memorial Act, including the Youth Suicide Early Intervention and Prevention Strategies, and Mental Health and Substance Use Disorder Services on Campuses programs.
The Centers for Medicare and Medicaid Services should enforce the federal Medicaid law that requires states to provide early and periodic screening, diagnosis, and treatment (EPSDT) for Medicaid-eligible children and adolescents.
Federal, state, and local leaders should implement mental health screening for all children and adolescents using evidence-based, reliable tools. Screening should be voluntary, confidential, provided and interpreted by qualified individuals, culturally and linguistically appropriate, and followed up with referrals to mental health professionals for further evaluation and monitoring and resources for treatment and services.
The Department of Defense should screen for mental health disorders in active military duty personnel upon induction and throughout the period of military service, and treat and refer personnel appropriately.
Congress should authorize funding for grants for states, local governments, and other entities to implement specialty care programs, including Coordinated Specialty Care for First Episode Psychosis in community settings.
The Department of Education, in collabor
ation with the Department of Health and Human Services and other agencies, should develop brain health and fitness standards for elementary and secondary education.
The Department of Education, in coordination with NIMH and other federal agencies, should develop and disseminate evidence-based brain-building interventions that are easy to adopt, promote brain fitness and resiliency, and include programs, tools, and resources for schools.
The Department of Health and Human Services, in collaboration with the Department of Education and other federal agencies, should launch a national brain-health and fitness public-awareness campaign to educate youth and adults on the benefits of brain fitness and brain fitness interventions.
All states should increase funding and fully implement Housing First programs to reduce homelessness among individuals with mental illness and addiction.
All states should implement psychiatric advance directive statutes to increase patient autonomy and decrease involuntary treatment.
State insurance commissioners should require healthcare plans to cover and reimburse for home-visiting programs, including Nurse-Family Partnership (NFP), and encourage NFP integration within managed care entities and integrated care models.
Federal, state, and local leaders should conduct public and provider education campaigns alerting pregnant women of the dangers of smoking, drinking alcohol, and taking illicit drugs while pregnant.
A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction Page 37