Today, on the birthday of Dr. King, what will you do to honor his memory? I took some time to think about the particular essence of the work he took up, the work that never gets completed and is always necessary. I’d like to suggest there are two basic elements of that work. First, we must always bear witness to our shared wrongdoing, by naming and calling out the human-made class, habit and stereotype driven barriers to human potential; and second, we must just as vigorously speak of our capacity for something better, offering each other enlivening glimpses of the possible future, through the yet-to-be torn down walls.
The barrier I want to call out to you today is the one we’ve created for those with serious brain illnesses like schizophrenia and other psychotic disorders. We didn’t cause these brain illnesses, as best we can tell— they present their own barrier, for sure, but that’s not the one I’m naming.
The barrier I mean is our special singling out of humans with life-threatening brain illnesses to be left largely without treatment, ignored and even criminalized. If you watch this video of a man with schizophrenia, homeless due to his illness, being beaten to death by police instead of given desperately needed treatment, and you then learn his killing was not found criminal by a jury, you can see what our created barrier has done.
I had a hard time watching that. I had to do it in pieces. I said I wasn’t going to watch, because my imagination was painful enough, and because nothing about this event is actually new or unusual, and because I am a caregiver for a young adult with this same illness, and because I didn’t need another reason to cry about what is happening to sick people. Lots of excuses, but bearing witness means we have to watch the hard parts.
Now you can take a breath, and I’d like to offer the second half, a glimpse of a future where we tear down the barriers to treatment we have built. We made them: we can take them down.
We haven’t seen substantial national legislative effort to do anything until recently, with the Helping Families in Mental Health Crisis Act. Representative Tim Murphy, a psychologist, has put forth a game-changing bill that would go a long way towards allowing people with serious brain illnesses to live safely and with dignity in their communities, instead of being consigned to homelessness, jail, and early death. I have read and thought about the bill in entirety (there are links in the site above). I endorse it strongly. I am contacting my legislators to request their support. I believe it will do some work that seriously needs doing. That’s my short version. If you’d like to know a few more specifics, please read on and also see discussion of the bill here. If there are questions not addressed, please let me know and I’ll try to get an answer for you.
Quick Summary of HR3717: Helping Families in Mental Health Crisis Act
This bill would restructure administration of planning and funding at the federal level in a shift towards known to be effective policy and an evidence-based approach to evaluating programs. Focus would be put on services allowing persons with serious brain illness to stay in their communities while being effectively treated. Specific parts of HIPAA (health information privacy law) would be modified to allow caregivers to know information necessary to health and safety.
I have seen criticism of the bill from advocates with milder brain illnesses who fear mandatory treatment would be forced upon them or that choice would be removed from those who have done, as is typically said “nothing wrong besides being mentally ill and homeless.” I can certainly understand why someone with a mild illness would extrapolate the same ability to think and reason clearly to someone more severely affected and be concerned about the ill person’s freedom. Indeed, we all might do well to have the level of concern necessary to monitor treatment programs and legal action from misuse. There will always be a gray zone where assessment of competency to make decisions is uncertain. On the other hand, we don’t quit giving antibiotics to patients with meningitis just because they are used wrongly for viral illnesses. We don’t shut down hospitals that are needed but are not functioning well, because we still need somewhere to go when we have heart attacks—we fix them. Wait, we DID do that…but only for brain illnesses.
Reading this bill, I would say that if an error has been made, it appears more likely in the direction of slightly undertreating, due to long-standing fears of overcalling brain illness. The gray zone has been largely excluded. Only those with the most severe psychotic illnesses are addressed by the bill, and some will still be left out in the effort to preserve rights. Breaking down a barrier takes time and sometimes has to be done stepwise.
As I’ve discussed in prior blogs, those with severe brain illness often present with anosognosia—inability to recognize their illness. Rational thought is lost due to the illness itself, which renders the choice of treatment or not meaningless to the person. Paradoxically, mandatory treatment can sometimes restore thinking ability to the point of competency. Even when that doesn’t happen, treatment increases the chance substantially that the person will be able to live in the community and enjoy the normal rights and potentials the rest of us enjoy. A person having a stroke will be treated, even though he can’t ask for help. A person with severe brain illness, whose illness steals his ability to understand why help is needed, is not treated because he doesn’t ask. Both must be treated in order to access their ordinary civil rights.
Funds Currently Misdirected
SAMHSA, the Substance Abuse and Mental Health Services Administration, would come under direction of a new office, the Assistant Secretary for Mental Health and Substance Use Disorders, as part of the Department of Health and Human Services. This person would have to be an actual psychiatrist or psychologist with research and clinical experience. A National Mental Health Policy Laboratory would consult with the National Institute of Mental Health to identify evidence-based policy, implement it, and monitor outcomes. An interagency coordinating committee would work to integrate all federal work on mental illness and would include representatives affected by brain illness under treatment, family members, and advocates. Professional peer review would be required for all grants and proposals.
At present, SAMHSA is not administering available funds in a targeted, evidence-based manner. Priority is not being given to those with the most severe though treatable illnesses and is being distributed to various fluff grants instead. Sometimes redesigning administrative functions is just window dressing. And sometimes, that is the only way to shake things up enough to change them.
A few years ago, I was offered a chance to attend a SAMHSA funded training session for healthcare providers on substance abuse screening. Because I was in the process of helping a group of pediatricians in my state select a screening tool for teens, I registered, hoping I would learn more about how to use the tool. I had a paid trip to Miami, where I stayed in a fancier hotel than I would ever manage on my own, for a 2 day session targeted primarily at screening and motivational interviewing for basically well people. Instead of focusing on how we could work with patients ill with serious addiction, the thrust was on how anything more than 1 drink a night for women or 2 for men could be a health risk and how we could help people quit doing that. Addiction was normalized and thus forgotten. How many people could have undergone actual treatment for the funds taken to do that conference? If the restructuring frees up funds to be used well, we can afford to do so much more. Throwing money at a problem definitely doesn’t solve it when so much goes in the storm drain or gets blown away—aiming and directing money at a solution works much better.
Redirecting Funds: What is AOT?
There would be 50 grants available to establish new Assisted Outpatient Treatment programs (AOT). AOT is an evidence based therapy to provide monitored treatment of brain illness in an outpatient, community setting. The requirements are stringent—only those who are not able to provide for their own basic needs due to brain illness, who are likely to substantially deteriorate without treatment, who lack the capacity to make decisions, who have a history of violence, incarceration due to illness or repeated hospitalizations due to non-adherence with treatment, or who present a danger to self or others would be included. AOT has been determined constitutional in court. Typically outpatient commitment is ordered for a one year period and can be renewed, but only if the same conditions are still met. At the court hearings for commitment to AOT, the patient would have legal representation and could give testimony. No permanent or longstanding sentence is imposed. If a year seems long, remember illnesses this severe and chronic are not likely to be going away. And prison sentences for untreated persons are often far longer.
This does not mean the eccentric guy who puts out funky lawn ornaments is going to be held down and given a shot. It does not mean every person who hears voices, or mumbles to herself in the grocery store, or is disheveled, or preaches on the street corner is going to be picked up by police. Forget what you’ve heard about mental illness being so common and ordinary—it is not, not the kind covered by this bill. We don’t have the money to do that kind of thing anyway.
The bill would increase funding for the most serious forms of brain illness and specifically devote a portion to illnesses associated with violent acts, in effort to find more effective treatments. It would provide for education in schools on signs of brain illness and how to respond. It would extend meaningful use funding for electronic health records to psychiatric facilities. Liability protection would be extended to qualified volunteer physicians at outpatient psychiatric clinics. Funding would be put into suicide prevention programs.
The bill would give grants to establish telepsychiatry programs and train primary care doctors to work in collaboration with psychiatrists. It would give planning grants to 10 states to establish Federally Qualified Behavioral Health Clinics, which would be required to include child and adolescent trained psychiatrists and staff, training in dual diagnosis (addiction plus another brain illness), rehabilitation services, peer support, and supported education/ employment. It would fund training for first responders to recognize brain illness and act appropriately to avoid killing the person they need to help or being killed themselves. It would strengthen funding for mental health courts and veterans’ treatment courts. It would protect medications from exclusion from state Medicaid formularies. It would fund inpatient and residential treatment for those on public insurance between age 21 and 65.
Eliminating Obstacles to Sharing Vital Information with Caregivers
For patients being supported by a caregiver, usually a family member, at present HIPAA creates a dangerous barrier to good care. In order to provide home care that is actually a form of residential, medical care, the parent or other family member must be able to know what medications are to be given, what side effects to look for, what symptoms of relapse are, and how to respond appropriately. The caregiver must also be able to locate a hospitalized family member and be able to give crucial information to the treatment team. We ran into a problem with this a few years ago, when we were not contacted upon hospitalization of our family member until he gave consent the next day. He had been started on a medication that had given him dangerous side effects in the past, and we could have prevented that had we been notified.
The bill would allow only such pertinent information to be shared with caregivers, the same as it would be shared with nursing home staff. If a person is not ill enough to need a caregiver, this section is irrelevant. So it does not mean that your therapist is going to tell your mother about your session and what you said about her.
Flaws in the Bill
So, what are the flaws in this bill? Every bill has them, of course. These are the ones I see: non-brain-based language is used throughout—“behavioral” is a particular annoyance. People with heart attacks are having a “behavior” when they grab their chests, I guess. The same-old same-old “quality” monitoring measures and incentives are proposed, which are not really measurements of quality care but of less sick patients. Effective quality improvement can be done, and not like that. The HIPAA improvements do not, for some reason, include 14 to 18 year olds. A friend suggested to me this was because state laws regarding minors are so different. However, at least it would be wise to include caretakers for emancipated minors in the safety-motivated release of information. There is no provision to require medical information to be given to primary care doctors by psychiatrists, which turns out to be harder to get done than you’d think. Many states have restrictions on sharing such information, despite it being crucial to safe patient care. I see a lot of grants and funding which appear temporary, so I do have concerns that states may establish services that will then lose funding. This is not a reason to avoid beginning, just a caveat that we will need effort to maintain what we start. I do not see any of these flaws as critical to change before passing the bill.
Today, I have made my very small act in honor and appreciation of Dr. King and his life’s work. I have called out a harmful, human-made barrier to the lives and dignity of those affected by serious brain illness. And I have shown you a view of the possible, a better path forward. Small acts can add up, when we all do them. What do you see, in place of the barrier? What will you do to help take it down?