The hardest problem
Since becoming a mental health advocate in 2016, I have heard over and over how important it is to have all voices at the table. That everyone be heard and feel heard. As we lift up some voices, we are struggling to hear others.
No where is this truer, at least in Massachusetts, than on the topic of Assisted Outpatient Treatment.
What is assisted outpatient treatment (AOT)?
Assisted Outpatient Treatment is a misnomer – it is not “assisted” it is involuntary, coercive treatment. All except three states in the US have existing AOT laws (sometimes called IOT and several other names). Massachusetts is one of those states that does not have an AOT law, but it has been filed many, many times and there is legislation pending in the 193rd General Court (2023-24). See H.1694 & S.980)
Unlike when someone is arrested and they are court ordered into a treatment program to avoid jail time, AOT is requested by someone when no arrest has happened. Depending on the state, this can be a clinician, a colleague or a family member or friend.
FAMILies and peers
Every time the AOT legislation hearing comes around, there are two equally passionate groups providing testimony.
Parents and family members are desperate to do SOMETHING to help their loved one. They may have seen medications appear to work for their loved ones at times (at least addressing symptoms). It is like watching a bus heading straight for your child. You know they will be killed. You grab them by the arm, possibly break their arm, but they are alive! This desperation is real.
Peers will share their stories of extreme traumatization by a system that does not see them as a person who can control their choices. Traumatized by involuntary commitment, not having any say in whether they want a particular treatment or medication. A system that doesn’t hear their concerns about medications. They are concerned that this legislation will create more circumstances where people are traumatized. This fear is real.
Neither group can actually speak for the person living in their parents’ closet.
Does it work?
Early in my career shift to mental health advocate, I worked at the State House as an intern in a Representative’s office. I started, where many parents start, thinking AOT was an “answer.” Then, we did some deep research into the efficacy of AOT to answer these questions:
- Does it really help people?
- What happens after they are no longer being ordered to engage in “treatment”?
- Do they experience it as treatment or something else (punishment)?
- Does this create the AHA moment every parent hopes for – that their loved one will become well enough to manage their own situation?
Turns out the evidence is murky. There is a lot of information about reduction in jail time (good) and reduced impact on public spaces (also good), but it’s not as clear this is actually good for the individual. And a lot of that depends on the level of trauma in relation to the system – both before, during and after AOT.
During this same time period, two other things happened. I read “Committed: The Battle over Involuntary Psychiatric Care”and I got the opportunity to visit Roca in Chelsea, MA to learn about their “relentless outreach approach” with justice involved youth.
Since I had recently been fundraising to establish the PACT program at McLean Hospital, I had my own AHA moment. Would relentless outreach, working to connect with someone living in their parent’s basement for instance, patiently showing up every day be able to help connect someone to a practice that might help them? Something like a patient-centered PACT?
I wrote a concept paper and talked to many experts about my idea – everyone thought it made a lot of sense, but … there are never enough resources to invest in those who say they don’t want or need anything. Even though I had anticipated issues with funding and proposed an alternative (social impact bond) approach, the idea went nowhere. But the issue has stayed with me.
A new(ish) idea
Because no good ideas are really “rocket science”, other folks also thought about relentless outreach and specifically using Certified Peer Support (CPS) specialists to do the outreach. At this point, the INSET model in Westchester County, NY may be the only fully functioning program. They currently have 4 CPS assisting 20 individuals each across 2 counties (assisting up to 80 individuals). That’s a lot of growth in four years and during a pandemic (2018-2022).
When a CPS connects with someone, it is on their terms and to help the person make a plan for themselves. Sometimes, it is to help execute that plan. But it is not, I repeat not, a relationship of the CPS telling an individual what they have to do or choose. This engagement is, by definition, not coercive.
A program like this will give family members some place to turn. They do not have to wait and watch while their loved one gets worse, waiting until they are a danger to themselves or others before getting “help” – which is likely to be even more involuntary and traumatic.
As a parent, I know that all I’ve wanted is for my son to be in a position to make decisions for himself. Contrary to what some anti-AOT folks think, I believe most of us do not want to coerce or force anyone. We want our loved one to be well enough to handle matters themselves. The current structure requires us to consider “breaking their arm” in order to get there.
Now is a great time to change this narrative by addressing and hearing the dual realities of AOT. Let’s build an alternative option together!
can peers and families unite behind persistent outreach?