Based in Massachusetts, Patricia Deegan is a psychiatric survivor and activist, psychologist and consultant to government and community-based mental health agencies. In 1987-8, she wrote the seminal paper, "Recovery: The Lived Experience of Rehabilitation." Since then she has spoken around the world about her personal and professional experience of recovery.
For the past ten years, Deegan has worked with a mental health agency, Advocates Inc., to develop the Intentional Care Approach. The Intentional Care Approach teaches workers to purposefully build relationships with clients that support the recovery process. The Approach includes client choice, respectful communication, professional boundaries, confidentiality, cleaning in supported housing, community integration, the role of the direct services worker, and cleaning in group home settings.
Intentional Care is not meant to be a cookbook. Instead it focuses on the many ambiguous situations that mental health staff face every day and offers workers a guide to navigating these situations. If a client offers a worker a pair of leather gloves for a holiday gift, is it okay for the worker to receive this gift? If a client makes a choice that appears to be self-defeating, how should workers engage with the client about that choice? If a client hasn't showered in a couple of weeks, what would a recovery-oriented approach to that situation be? How can workers avoid stigmatizing clients when they write clinical notes? How do workers balance a clinical team's need to know with a client's right to privacy? Intentional Care provides workers with a coherent way to translate the principles of recovery into daily practice.
Five field sites around the country are piloting the Intentional Care Approach. A vibrant on-line learning community, including dozens of mental health agencies, continues to make innovations in the Approach. Mental health consumer/survivors have taken an interest in the Approach. You can learn more about Intentional Care at http://www.intentionalcare.org New York City Voices is fortunate to obtain this in-depth interview with one of the leaders in the recovery field.
Voices: How did you get started as a mental health consultant?
Deegan: Recovery was the buzzword in the early 1990s. The cornerstone of a recovery and empowerment-based approach was already there: client choice, self-determination, self-help, and hope. But the question as to how to implement these concepts in daily work remained. There was a chasm between the concepts of recovery and empowerment, and concrete suggestions how to apply the concepts in everyday work in mental health. The chasm between concept and practice was made more intense when we realize that the people who spend the most time with clients are the least experienced, least trained, most underpaid, and most overworked. In many instances, workers were left on their own to figure out how to translate recovery principles into practice.
Voices: What was the key development? Deegan: In the early 1990's, I challenged the leaders of an agency that I was consulting with. I said it didn't seem right to have workers out there flying by the seat of their pants. I believed it was possible to do better than that. So the leaders of Advocates Inc. in Framingham, Massachusetts agreed to take me up on my challenge. We developed a methodology that included extensive interviewing of staff and clients. We met three hours a month over the last 10 years and found ourselves with this new and exciting Intentional Care Approach. Voices: How were clients treated before Intentional Care?
Deegan: Workers are well-intentioned, and some of their behavior is exemplary, but the information coming in from our surveys is shocking. Too much of what goes down as standard practice is mediocre and off base. Take professional boundaries: When a client gives a gift, it's an expression of the way the client feels. That's part of the relationship with staff. It's important to recovery. When a client's gift is rejected, that's devastating to the client. It lowers self-esteem.
Voices: Is this kind of incident isolated?
Deegan: Unfortunately no. In our surveys we found lots of examples of practices that conceivably could lower client self-esteem and ultimately hinder the recovery process. For example, with regard to issues of professional boundaries, we found that some workers interpreted professional boundaries very rigidly. Some staff thought they should take off their wedding rings so clients wouldn't know they were married. We found other staff were hiding their CDs when giving clients a ride to conceal any personal information about music preferences. Some of the other practices we found were staff swearing in the presence of clients or bribing clients to sign treatment plans or even threatening clients with going back to the state hospital if they didn't behave…For a true picture, you have to multiply these examples-especially the more subtle and benign ones-by 100.
Voices: Why is cleaning personal and public property such an important part of Intentional Care?
Deegan: Cleaning is a huge part. When no one takes it seriously, conditions can really deteriorate. Being in a filthy, unsanitary environment is bad for anyone's mental health. It also lowers our self-esteem. Programs get defunded because apartments are in a shambles. Often staff gets resentful of cleaning. They ask, "Are we a cleaning service?" Clients can square off against staff and say, "Why should I clean this place? It's not really my place." Terrible power struggles result from cleaning issues. That's why it's important to have an intentional, purposeful way of approaching these issues.
Voices: What's the promise of Intentional Care?
Deegan: The promise of Intentional Care is to transform the mental health workforce by training them in recovery-oriented approaches to working with clients. In the 1999 report, the Surgeon General called for all mental health services to become recovery-oriented. Intentional Care is part of the solution toward that vision. It's not the whole answer but it's part of the equation. Of course, the other things that are needed include more peer support services, decent housing, etc. But in addition you have to change the skills of the workforce. In the experience of the field sites, it can take a year to two years to train staff in the approach using a monthly meeting model.
Voices: Can you document what you've done?
Deegan: Although we're looking for NIMH (National Institute of Mental Health) or foundation money to research the impact of Intentional Care, we've gotten this far without grants. We know the approach is valuable because agencies that use it tell us they are pleased. The most consistent feedback we get is that the approach gives an agency a vocabulary and framework to address recovery-oriented issues related to the real, nitty-gritty, daily work that staff do with clients. It gives you a consistent, coherent vocabulary and raises up the everyday aspect of recovery.
Voices: Where do consumers fit in?
Deegan: Consumers are recognizing the everyday use of Intentional Care. At the Clubhouse of Suffolk on Long Island NY, members are training staff. Peer groups in western New York are excited because training staff makes consumers more powerful. We hadn't seen this coming. With some stretching it might apply to family advocates who want staff to meet their expectations. The danger is using Intentional Care as a cookbook. It's a series of algorithms, of decision-making trees. This is very difficult work we do in mental health, very ambiguous work, and yet most workers are poorly trained and paid.
Voices: What are your plans for the next year?
Deegan: Possibly pairing Intentional Care with certain Evidence-Based Practices such as supported employment. I also have plans that don't include Intentional Care. I'm working with the University of Kansas on researching a recovery-based approach to using psychiatric medications. I'm working on organizing consumers around the country to restore state hospital cemeteries and to collect oral histories so that the perspective of ex-patients is not forgotten in the history of mental health services. I call that collective recovery. I'm working with Advocates for Human Potential to develop technical assistance materials for state Olmstead planning [about the least restrictive settings for treatment]. Voices: What would you like to see in the future? Deegan: I'd like to expand peer advocacy and self-help, and urge consumer-survivors to never again leave their well-being in the hands of others. We need to continue to challenge forced treatment, make programs less coercive and more attractive to clients, and we need to continue to speak for ourselves. We are facing dangerous trends that undermine self-determination. These would include certain aspects of the new field of genomics/genetics as well as the emergence of psychiatric drug implants. This is where knowledge of our history - of eugenics, forced sterilization, and a host of barbarous, brain-damaging "treatments" such as lobotomies - is instructive. We need to learn from this history and never again leave our fate as a devalued people in the hands of well-intentioned others…Finally we need a viable cross-disability movement. When we come together, people with disabilities are a significant voting block of 43 million people! That's power. That's a voice to be reckoned with! We must shape our destiny and speak for ourselves. That's an empowerment vision.