by David A. Pilon, Ph.D. and Mark Ragins,MD*
When a professional staff member presents a case, we usually say something like this:
- Lisa is a 28 year old single woman with schizoaffective disorder and cannabis abuse. Her illness began in her late teens with symptoms of depression, withdrawal, agitation, and erratic behavior. She refused all treatment efforts, and added cannabis abuse to her problems progressing into a psychosis marked by prominent auditory hallucinations and a thought disorder. When her family could no longer handle her she became homeless and when she had a baby on the street they accepted the burden of caring for it.
When Lisa described her own story it sounded something like this:
- My life fell apart in my late teens. I couldn't seem to function. I was plagued with voices. My family didn't understand me and kicked me out. The psychiatrist at the clinic didn't listen to me and just tried to push pills on me. The only one who has stuck with me through everything, including years of homelessness together has been my boyfriend.
It's amazing we can talk to each other at all. Staff tend to focus on diagnosing and treating people's illnesses. Clients tend to focus on living their lives. Staff tend to focus on their compliance with our treatment orders. Clients tend to focus on figuring it out for themselves. Staff tend to focus on getting them on medications. Clients tend to focus on getting off medications.
As individual staff we spend a lot of time with our clients, working hard to make sure they get what they need - medications, money, housing, jobs, legal assistance, medical care - "whatever it takes". We also spend a lot of time "putting out fires" running from crisis to crisis. As a team, we spend a lot of time trying to coordinate our efforts, to get "on the same page" in team meetings when discussing our clients, their challenges and their successes.
We're often so busy, we can lose track of the big picture - "Are our clients progressing in their recovery?" and making sure that we're thoughtfully altering our services and our relationships with our clients as they change so we're really "meeting them where they are," pushing them forwards instead of holding them back, engaging when it's needed, skill building when it's needed, and helping people move on and leave us when that's what's needed.
Recovery-based practices and administration
The recovery movement has been a powerful force in changing individual staff's values and practices and enabled us to help many people like Lisa (not her real name), who would be lost with our traditional approaches, to actually recover. We've come to realize that we need more than recovery-based practice tools. We need to have recovery-oriented administrative tools - for supervision, service coordination and triage, tracking outcomes, advocating for funds, and creating a recovery-based program design.
For more than 20 years, Mental Health America of Los Angeles has had a distinguished record of approaching recovery-based transformation from four directions:
1) Creating effective models of direct services.
2) Collecting and sharing data and understanding from our service experiences.
3) Advocating for funding and changes in the overall system.
4) Educating professionals and the public.
A key tool that can unite all of these administrative purposes would be a rapid, simple to use instrument by which we can track the highly individualized journeys of recovery that our clients are experiencing. We believe the Milestones of Recovery Scale (the MORS©) is that tool.
Brief Overview of the MORS©
We wanted to create a tool that is person-centered instead of illness-centered, and to emphasize the collaborative nature of recovery-based services. We also had to find correlates of recovery that the staff could rate, so they couldn't be entirely internal processes or feelings. To do this the California Association of Social Rehabilitation Agencies (CASRA) convened 50 consumers, staff, program directors, and family members to identify the "most important" and "easily observable" characteristics and behaviors (the correlates of recovery). We also wanted to create a very short tool - like the Global Assessment of Functioning (GAF) score.
Out of lengthy discussions three factors emerged, one each from the dominant treatment models: "Risk" from the medical model, "skills and supports" from the rehabilitation model, and "engagement" from the recovery model. For details, see a discussion in Mental Health Journal.
These three constructs are already part of our daily thinking when we work with clients. They make sense to us: We'd expect someone who is recovering to have less and less risk of damage in their lives. We'd expect them to build their skills in dealing with their illness and their lives and to develop connections and support from their natural community as they recover. We'd also expect them to move from not working with professionals on improving their illnesses and their lives, to collaborating with professionals, and then move on to needing us less and less.
The three factors were combined to form the following milestones:
1. Extreme Risk
2. Experiencing High Risk, not Engaged with Mental Health Providers
3. Experiencing High Risk, Engaged with Mental Health Providers
4. Not Coping Successfully, not Engaged with Mental Health Providers
5. Not Coping Successfully, Engaged with Mental Health Providers
6. Coping Successfully, Rehabilitating
7. Early Recovery
8. Advanced Recovery
We wanted to put these milestones not into a rating grid, but into a roadmap that reasonably accurately reflects the actual journey of recovery and is universal enough that almost everyone with a mental illness could be identified as somewhere on the path. could be identified as somewhere on the path. This reflects our belief that recovery is both a journey and a destination, which can sometimes be confusing. Not surprisingly, we couldn't create a linear map because recovery isn't a linear process.
Lisa's journey - Using the MORS
Lets return to Lisa's story in some detail and use the MORS to observe her "long and winding road" of recovery and see how these milestones helped us match our services to what she needed.
Lisa was the oldest of four children and expected to grow up to take care of her parents. Instead, she did poorly in school, hanging out at the video arcade smoking Marijuana and dropping out of high school. As her younger siblings passed her by, all doing well, the criticism and pressure at home mounted. She varied between withdrawing to her room, apparently depressed, as well as laughing at nothing at times. At this point in her life, we would rate Lisa as a 4 (Not coping successfully, not engaged with mental health providers). Currently, she was not experiencing any high risk factors. Remember that MORS rating reflects where someone is currently. The risk rating reflects the risk at the present time, not where she was in the past or what we predict might happen in the future if this continued. So she should not be rated as a 1, 2, or 3. She had never been seen by any mental health service so she was unengaged.
Her family became increasingly alarmed and dragged her to a Community Mental Health Center (CMHC). She couldn't seem to focus on anything being said and wouldn't really cooperate with the intake interview. They set her up with a psychiatrist who diagnosed her with schizoaffective disorder and cannabis abuse and prescribed medications. She rarely took the pills and missed follow-up appointments. She got mad at her family for "making me take medications" and "making everything my fault" and stopped doing any chores. The clinic said she wasn't acutely dangerous or gravely disabled and not eligible for involuntary hospitalization and closed her case. The CMHC was unable to engage her, so she remains a 4. They correctly evaluated her as not being in extreme risk (MORS 1) so by current law they didn't involuntarily hospitalize her. Since the CMHC didn't have any services for MORS 4 people, they closed they case and stopped even trying to engage her.
Her family gave her an ultimatum and when she failed to comply threw her out of the house. She found a young alcoholic man to help her learn how to survive on the streets, though he doesn't like her mood swings either. They had a baby girl together, who was taken away and given to her mother. After that Lisa became even more depressed and under the influence of drugs almost all the time. As a result, her family cut off visits.
At this point in her life, since she left her family and was living on the streets, we would rate Lisa as a 2 (experiencing high risk, not engaged with mental health providers). The CMHC was unable to engage her in any service nor were her parents threats effective, so she was still unengaged. Their "tough love" approach, though likely well intentioned, led to her going backwards. Now that she was homeless, she was at high risk. Since she learned to cope somewhat on the street, she was not at extreme risk (MORS 1). The Department of Children's Services correctly evaluated that if they let her take her newborn daughter to the street she would be a MORS 1 because the infant could have died, and intervened proactively and involuntarily to avoid that further deterioration. Including unengaged stages (2 and 4) in the MORS, where the majority of people seriously impaired by mental illnesses actually are, underlines the need to develop specific services for people in these stages, both known and unknown to us, if we're really going to help them.
Lisa and her boyfriend had been together, homeless for six years when her father died after being sick for several years, and she felt ashamed that she, as the eldest daughter, hadn't taken care of him and that she had to do something about her life. Her family agreed to let her come back home, if she'd leave her boyfriend and help the family, but she refused. She'd been coming into the MHA Village Homeless Assistance Program for showers, laundry, and clothes intermittently for a few years but not talking with staff about her life when, for the first time, she asked for help with her mental illness.
When the psychiatrist (Mark Ragins) who was co-located in our basement Homeless Assistance Program first met Lisa, she was very distractible and couldn't follow the conversation for more than one or two sentences at a time. She felt trapped. She couldn't deal with life without her boyfriend and without being stoned, but she couldn't get her old life back with them. She thought marijuana helped control her voices, but did say that her boyfriend didn't like that it seemed to make her more irritable and impatient with him.
She was experiencing high risk by being homeless, but engaged with mental health providers with a goal of "getting help" which would be a MORS 3. Lisa said she'd be willing to try medications to loosen the trap she was in. I (Mark Ragins) asked her if she wanted to start with medications for the voices or depression and whether she wanted to start with a low dosage and work up or with a full dosage that would be stronger but might give her side effects. She chose to work on voices and wanted a full dosage.
She missed her next appointment, but I reconnected with her while she was standing in line waiting to take a shower. She'd never filled the prescription, so I had a bottle delivered to me to give it to her. She missed another appointment and didn't take those pills either. She admitted that she was actually afraid of the full dosage, so I got her a bottle of lower dosage tablets. She took a few. After six months of this kind of outreach and negotiation she was taking effective dosages of an antipsychotic and an antidepressant every day and I asked if she'd be willing to try cutting down on the marijuana to see if the medications alone would help. Her boyfriend was with her while they were doing laundry and he encouraged her as well.
Over this period we were working to solidify her engagement. Since we knew how fragile engagement is, we continued to emphasize "meeting her where she is," being flexible, accessible, reaching out when needed, adding supports, and building shared decision making. Even though she was not a "compliant patient," she was still rated as engaged because in our program she was working with us to improve her life.
Coping, Engagement, and Risk
Note that the milestones are not just ratings of the person alone. They are ratings of the person in relationship to their mental health services. For example, if she was referred back to the CMHC during this period, it's likely she would have become unengaged again.
As Lisa was thinking clearer, we offered her a one hour a day job helping us sort the mail in return for paying her rent at a hotel, but she didn't show up regularly enough to do it. Our priorities at this point were maintaining engagement and reducing risk more than building skills and supports so we lowered our requirements. All she had to do in exchange for housing was to follow-up on tasks to rebuild her life, like apply for Welfare and SSI, call her mother weekly to try to reconnect with her daughter to feel like a mother again, and go to the medical clinic to get birth control pills. Lisa and her boyfriend were able to get along without their huge fights, which she attributed to the fact that she was taking her medications and because it was less stressful off the streets.
At this point Lisa was engaged with mental health providers but coping poorly (MORS 5). She was no longer homeless and her distracted thinking and irritability were lowered so she wasn't at as much risk. She had actively reduced her other risk factors, getting money and obtaining birth control. But she wasn't really doing much to be productive or take care of her own needs. We weren't satisfied with reducing her risk, engaging, and "stabilizing" her.
The inclusion of stages 6, 7, and 8 in the MORS emphasizes the importance of pursuing further recovery beyond "not coping successfully, engaged" where most traditional mental health services stop, perhaps incorrectly believing that nothing more is possible. Our consumers, their family, and our communities want more from us than that and we can often achieve more.
After a month or two we tried again to increase her skills and supports by offering her the mail sorting job. And we offered heavy staff support to help her begin functioning at a higher level and achieving her goals. This time she was able to come in regularly. Lisa began to realize that marijuana was interfering with her life in major ways, including making it hard to come to work and function there. This was her first job since baby-sitting as a teen and she was proud of it, so she stopped using marijuana during the week.
She thought she should be able to use on weekends like everyone else. She discovered dramatic advantages from cutting down her usage. She could think better, her energy level was better, and her appetite was less and the voices didn't get worse as long as she took the medications. Her confidence was building and she applied for one of our half-time training jobs as a receptionist. We continued to heavily subsidize her rent until her SSI was approved. She paid us back with her SSI back payment check.
At this point she was "Coping successfully, rehabilitating". She still relied heavily on staff support and all of her successful roles were within the mental health system so she rated a MORS 6. We were very encouraged and offered her a more permanent job and help getting a subsidized apartment trying to push her towards independence and further recovery.
At this point however, it appeared to be too much. She and her boyfriend disappeared back under the bridge. We worried that she'd relapsed more seriously on drugs or stopped taking her medications and become more psychotic. A peer outreach worker looked for her. He found out that neither of those things had happened. Lisa was just scared and thought we were pushing her too fast. Sometimes the pressure of trying to move from MORS 6 to MORS 7 can lead people to make poor decisions and move backwards.
Having sent an outreach worker kept Lisa engaged with mental health workers even though she was experiencing high risk (MORS 3) back on the street. Things weren't quite as bad as when we first met her, but her risk was high again. If we hadn't done outreach to stay connected she could easily have gone all the way back to MORS 2 (experiencing high risk, not engaged with mental health providers) in this situation.
We acted to help her return to MORS 6, to reduce her risk and keep her engaged, but still dependent on us for awhile. We agreed to give her back her mail sorting job and used our influence to get her back into the hotel. We stopped pushing her as hard. Over time she began coming to appointments regularly both with me and with the case managers. She took responsibility for her own medications and her finances. The largest step was when, six months later, she asked for the more permanent job that had scared her away before and began working alongside all of us as our receptionist.
Sometimes people need more security to be able to take risks to grow. Risks taken in the service of growth are good risks, not like her previous risks from illness, drug abuse, violence, and homelessness. We talked with her about getting her own apartment with her boyfriend and being more independent. As we discussed her ambivalence, I realized that for her, given her culture, success would not be independence, but a return to her role as eldest sister and mother within her family. Though we agreed that would likely take quite a while longer to achieve, it was a heartwarming moment when she got to see her 4 year old daughter again.
At that point we would rate Lisa as a MORS 7 (early recovery). She was functioning well with minimal staff assistance. She was setting her own goals outside of the mental health system and making achievements. She was taking responsibility for both her illness and her life.
After another year Lisa was promoted into a position with benefits with us and got into an HMO. She was wary of leaving treatment with us, though by now we were acting more like friends than doctor-patient or staff-client. People often need help with developing community resources and new relationships to move form MORS 7 to MORS 8, where they are self-reliant, and no longer dependent on governmental benefits. I helped write a transfer letter, and helped her gather records together and prepare for meeting the new psychiatrist and therapist to smooth the transition and we discussed what traits she wanted in a new doctor. We still talked as co-workers, but I didn't track her treatment or give psychiatric advice. Two years later, she changed jobs to work somewhere that pays better than we do and her already reduced SSI ended. Although she "misses me", she thinks she's outgrown needing me. Still she calls from time to time to check in on me and the other people we knew. She sees her daughter regularly, is in PTA, and even volunteers in her daughter's class, but her daughter has continued to live with her family while she has stayed with and married her still alcoholic boyfriend.
Now we would rate Lisa as a MORS 8 (advanced recovery). Even though she still takes medications, she no longer relies on government services or subsidies and handles her life independently. The fact that one of her most important goals, reunification with her daughter, was never achieved does not mean she can't be considered to be in advanced recovery.
A non-linear journey
Notice how we were able to track Lisa's highly individualized, nonlinear journey of recovery as she moved through the various milestones of recovery and how the MORS provided a reasonable map on which to chart her journey. If you are a mental health provider or a person with a loved one with a mental illness, you might try it so see if it works for with people you know too. Notice also how we chose our interventions based upon where she was in recovery and what the goals for further recovery were, not upon the acuity of her illness. The same intervention that is helpful at one point in someone's recovery may be useless or even harmful at another point.
In future articles, we will describe some of the ways that we believe the MORS can be used to improve the effectiveness and efficiency of our community behavioral health programs and systems.
*David Pilon is CEO and President of Mental Health America of Los Angeles; Mark Ragins is Medical Director at the MHA Village Integrated Service Agency. He has written extensively about recovery based services which you can read here.