Principles and Practices of Recovery-Oriented Care

The Importance of Community InclusionLarry Davidson, Ph.D.Professor of Psychiatry

Director, Program for Recovery and Community Health at Yale University School of Medicine

Senior Policy Advisor Connecticut Department of Mental Health and Addiction Services

A. Lesson: Community inclusion provides a foundationfor recovery, not its reward

B. Distinguishing clinical recovery from personalrecovery

C. The need for a social justice/disability rightsperspective

D. Putting a disability rights perspective into action

E. Individual placement and support and …

F. Community partnerships/collaboratives

What I Hope to Cover

In his frequent efforts to promote the transformation agenda in Connecticut, Commissioner ofMental Health and Addiction Services, Tom Kirk, Ph.D., tells the story of a 27 year-old mannamed Steve who he met during a visit to a supported housing program. When he asked thestaff how Steve was doing in his recovery, Commissioner Kirk reports that they respondedfavorably about how well Steve was doing in the program, following the rules, taking hismedication as prescribed, and having his symptoms relatively under control.When asked if this was the kind of life they hoped for this young man for the foreseeablefuture, the staff seemed puzzled, confident that they were doing their best. His condition, afterall, was stable and he had not been admitted to the hospital for several years. CommissionerKirk, however, was not satisfied. He asked the staff to go one step further and considerwhether or not this would be the kind of life that would make them content were they inSteveʼs place.Once it was phrased this way, the staff began to think that more could be done for, and morecould be expected from, this clever college graduate who was engaging, loved cars andracing, and had aspirations of becoming a mechanic. But how could they help him with that?They had little idea as to what they could do beyond treating his schizophrenia andencouraging him to participate in program activities as a way of luring him away from histelevision set. Becoming a mechanic seemed a long way off, if it was to be possible at all.

The Story of “Steve”

What can we learn from Steve’s story?

• People with mental health conditions may want the same things out of life as other people do.

• People are not their diagnoses, are not subsumed entirely by the illness, and continue to exist alongside of the illness.

• Mental health care has addressed illness and its symptoms more so than the person and his or her everyday life.

Other examples

“You always want me to get dressedup, but you’re never willing to takeme anyplace.”

Distinguishing clinical recovery from personal recovery

Persistent confusion/skepticism regarding ‘recovery’ due tocompeting and contrasting definitions:

• Clinical Recovery refers to an outcome, to the absence of thesigns, symptoms, and impairments associated with the disorder.While it may be manifest in ~68% of persons diagnosed withserious mental illnesses, it may take decades to achieve.

• Personal Recovery refers to a process involving the reclaimingor recovering of a self-directed and meaningful life despite andin the face of an enduring serious mental illness which may ormay not eventually result in clinical recovery.

Slade, M. (2009). Personal Recovery and Mental Illness. Cambridge: Cambridge University Press.

Serious mental illnesses as “psychiatric disabilities”

Pat Deegan, Ph.D.

“Recovery refers to the lived or real life experience ofpeople as they accept and overcome the challenge ofthe disability … they experience themselves asrecovering a new sense of self and of purpose withinand beyond the limits of the disability”

– Deegan, 1988 & 1992

Deegan, P. E. (1988). Recovery: the lived experience of rehabilitation. Psychosocial RehabilitationJournal, 11(4), 11-19.Deegan, P. E. (1992). The Independent Living Movement and people with psychiatric disabilities: takingback control over our own lives. Psychosocial Rehabilitation Journal, 15(3), 3-19.

Need for a social justice and disability rights perspective

• Clinical recovery is more a matter of active treatment andrehabilitation, although discrimination and other social factorsmay impede availability, access, and effectiveness of care

• Personal recovery is more a matter of being activated for andengaging in self-management, but then also is influenced byan array of social determinants of health beyond access tocare, including stigma and discrimination, unsafe or unstablehousing, limited access to education, prolongedunemployment, loss of parenting rights, and lack of inclusion invalued social roles and communities of one’s peers (e.g., faithand civic communities).

Role of the environment in the disability model

• Disability is defined as the result of a person-environment interaction, thus by definitionacknowledging the role of social, cultural, andpolitical determinants of mental health and layingthe foundation for the use of environmentalmodifications.

• The Disability Rights and Independent LivingMovements have established justification forfunding of long-term supports, thus avoiding thecritique of society not having responsibility forfunding what is described as an individual’sresponsibility for his or her “personal journey” (meand glasses).

Brief History of Psychiatric Rehabilitation

Fountain House, vocational rehabilitation, and residential alternatives arose with deinstitutionalization.

By the 1970s, de-institutionalization was being considered a ‘failed policy’ for two main reasons:

• Funding had never been provided to create thecommunity-based supports people needed to livemeaningful lives in the community.

• The interventions that had been developed were not effective in affording people lives beyond the mentalhealth system.

(one study suggested that it took an average of 43 years to get a job)

The Move to Community-Based Work

Assertive community treatment developed in the 1960-1970s.• Based on several lessons:

ØMany people still needed support

ØSkills did not generalize from hospital or classroom

ØLearning requires modeling

ØWith modeling and support, people could hope to become involved in the

meaningful activities of theirchoice.

What are community supports?

• Derived from independent living movement and persons with physical disabilities

• Help people compensate for challenges posed by the nature of the disability

• Wide range of supports for a wide range of activities

For someone with a visual impairment, a seeing-eye dog or white-tipped cane can greatly increase the person’s access to, and participation in, community activities.

Supports

. . . as wheelchairs have for people with mobility impairments

University of

Massachusetts

Support

. . . and as visual aids have enabled people with hearing impairments to live independently

Supports

In Recovery-Oriented Care…

…The questions then becomes….

What kinds of community supports have people with“psychiatric disabilities” found similarly useful inincreasing their access to, and participation in, thenaturally-occurring community activities of theirchoice?

#1. Support: Having people believe in and support me (i.e., not having to do things alone).

support

#2. Hope: Tangible and living proof of the possibility of recovery (i.e., peer role modeling, mentoring, and support).

support

#3. Opportunity: Clear directions, instructions, and expectations. Having the opportunity to take initial steps and to ask others for clarification.

#4. Tools: Memory aids and other devices to assist the person in structuring his or her time. We can not assume that people either already have, or will think of, such simple tools of everyday life on their own. Due to learned non-use, they often don’t.

Who would get to work on time without an alarm

clock?

A watch with an alarm can remind me to take my medication on time.

Who would remember everything they have to do without writing things down?

What do people use supports for?

What do people in recovery want?

“What makes life valuable for those of us with mentalillness? … Exactly what is necessary for otherpeople. We need to feel wanted, accepted, and loved… We need support from friends and family … Weneed to feel a part of the human race, to have friends.We need to give and receive love.” -- Leete, 1993

Leete. E. (1993). The interpersonal environment - A consumer's personal recollection. In Hatfield, A., & Lefley, H. (Eds.), Surviving mental illness: Stress, coping, and adaptation (pp. 114-128). New York: Guilford Press.

“to help each other out”

“I could choose to be a nobody, a nothing, and just [say] ʻthe hellwith it, the hell with everything, I’m not going to deal withanything.ʼ And there are times when I feel like that. And yet, I’mpart of the world, I’m a human being. And human beings usuallykind of do things together to help each other out ... And I want tobe part of that... If you’re not part of the world, it’s prettymiserable, pretty lonely. So I think degree of involvement isimportant ... involvement in some kind of activity. Hopefully anactivity which benefits somebody. [That gives me the sense that]I have something to offer ... that’s all I’m talking about.”

Reciprocity and “giving back”

“It made me feel like I was being helpful and in situations likethat I donʼt think so much about my illness. It kind of goes on theback burner because sometimes I just think about my illness andit seems like when I’m helping somebody or somebody sayssomething nice to me ... as soon as people say that, oh, you lookgood, things like that, it makes me feel better about myself.”

“By helping others you’re not totally worthless. Like it’s a natural,human characteristic that if you’re able to help others than you’reworth something ... It’s essential to life for people to feelnecessary... Giving something to someone else makes you feelworth something yourself.”

Incremental steps“I didn’t believe in me because when you get mentalillness, all of your self-respect disappears … your self-esteem goes away. And today I see that I have been in thekitchen making food for 60 people. It came by like babysteps you know ... very slowly, very gradually, you start tonotice these positive things about yourself, you start tothink in a positive way. I am able to do this, now maybe Ican do that …”

“Helping others helps me not think about my problems. Ifeel like I have a purpose and can help others. It feels niceto do that when you are usually the one who needs helpfrom others”

Welcoming Environments

“I guess I’m sort of feeling like I matter in a group, or have a part. I’mnot so invisible. … Like when I’m there, and if I’m just doing nothing,they might ask me, ‘Do you have something to do? Do you wantsomething to do?’ Or, ‘Do you want to help us do this or help us dothat?’ So that people are noticing that I’m there.”

“They treat you with respect, they don’t treat you like in a stigmatizedway… when I first came in here, I was worried … that I would betreated and talked down to like I was really slow. [I] went to the … unit… in general, just the way the workers talked to you like at first Icouldn’t tell who was a worker and who was a member because theyjust talked to other people like they were, not like they were bossingthem around but like they’re working with them.”

Regaining value and self-worth“Working … 3 to 4 days a week … really helped to get meback into society. It helped to make me realize, have asense of self-worth, and also appreciate that there’s agreater good to helping out, even the little chores we do likesweeping the floor, mopping, cleaning the bathrooms.These little things … made me feel very important.”“At the bowling alley it doesn’t matter if you’re mentally ill, ifyou’re a foreigner, an asthmatic, a dyslexic—just as long asyou bowl as many strikes as you can you are just likeeveryone else. So when I’m playing a match I’m worth justas much as anyone else, maybe even more... In a bowlingmatch everyone’s a bowler. It’s the number of strikes thatcounts, nothing else.”

But what if the person has no goals?

Reasons for not having goals• Has the person become demoralized over time, due to repetitive experiences

of failures and losses that have been due to mental illness, or discrimination, or a combination of both? Has the person lost hope as a result?

• Has the person become socialized into a mental health system that has not cared about his or her aspirations or interests in the past? Is what you are seeing the result of "learned helplessness," rather than a lack of goals?

• Might the person be so impoverished that he or she does not have the means to pursue goals?

• Has the person become afraid of taking risks, either because he or she might fail or be perceived as failing by others, or because either success or failure might precipitate a relapse or setback?

• Could this person have a co-occurring depression? • Have you made the effort to earn the person's trust so that he or she would

feel comfortable enough to share such personal information with you? • Is the person experiencing signs or symptoms of a mental illness that might

pose barriers to his or her participation in interesting or enjoyable activities?

For participation to be meaningful, it should offer the person access to opportunities…

• For becoming better at something and/or accomplishment• For affiliation and/or connection with others• For affinity (interest)• For exercising agency and/or authority• For experiencing pleasure and/or joy• For connecting to something larger than oneself• For reflection, quietude, and/or self-expression• For caring for and being good to one’s self• For caring for others (and being cared for by others)• For prospering

10 Reasons to do Something rather than Nothing

Can individuals become integrated into theircommunities only through individual means?(e.g., IPS)

--or–

Does it perhaps also take social means topromote social inclusion?

Key Question

• People with psychiatric disabilities need access to opportunitiesto contribute to their communities, along with the community-based supports that may be needed for them to be successful.

• In addition to supported housing, employment, and education,this requires access to volunteering, belonging to communitiesof like-minded equals (faith communities, hiking groups or otherathletic activities, pet ownership, civic responsibilities, etc.).

• Systems need to see beyond array of individually-orientedtreatments and rehabilitation programs to fostering pathways forpeople to travel to connect to their interests, aspirations, values,and peers (e.g., Trieste model and social cooperatives).

Implications for mental health services and systems

• Reduction of symptoms, signs, and impairments, while helpfulin decreasing suffering, is not enough

• Continuity of care, while important for effectiveness, is notenough

• Provider competencies, while key to obtaining outcomes, arenot enough

• Instilling hope, treating people with dignity and respect, andcaring genuinely, while necessary and humane, are notenough

The functions of a system of care oriented toward recovering “citizenship”

The community can itself be a focus of intervention

• Don’t create artificial activities in segregatedsettings when they already exist in the community

• Don’t try to ‘integrate’ someone into a communityto which you do not belong

• Offer opportunities for people to develop valuedsocial roles beyond their disabilities and illness-related identities

• Build on strengths and cultivate an ambition for ameaningful life

• Make sure people feel welcomed in the broadercommunity

Challenges and Cautions

“Mental illnesses are highly disabling, and, asrecent reviews have emphasized, our sciencehas not come even close to being able to cureor prevent them. Learning to live better in theface of mental illness doesn’t alter thatreality.”

-- Dickerson (2006)

Is this cure? No.

“From the perspective of the person with the disorder,[Dickerson] has it backward. It is especially when theillness is most severe, and because we do not yethave a cure, that people who have these disablingdisorders have no choice but to live in the face ofthem. This is the reality that takes priority inrecovery-oriented care.”

-- Davidson, O’Connell & Tondora (2006)

But does it matter? Yes.

“When I am on the job, I do my job. I think everybody iscapable of doing something. For many years, I did nothing. Iwas over-medicated and lay on the couch. That is the way Ithought my life would always be. Now, the whole thing ofmental health is changing. Itʼs really wonderful to see allthese changes. Years ago, you didnʼt have much to lookforward to. I thought I would spend the rest of my life in aninstitution. Now look at what has happened. I had a lot ofpeople who pushed me along the way. I still have issues withself-esteem but if you have people saying that you can, youcan try little things at a time.”

“if you have people saying that you can, you can try little things at a time”

Eleanor RooseveltU.N. 1958

"Where, after all, do universal human rights begin? In smallplaces, close to home - so close and so small that they cannotbe seen on any maps of the world. Yet they are the world of theindividual person; the neighborhood he lives in; the school orcollege he attends; the factory, farm, or office where he works.Such are the places where every man, woman, and child seeksequal justice, equal opportunity, equal dignity withoutdiscrimination. Unless these rights have meaning there, theyhave little meaning anywhere. Without concerted citizen actionto uphold them close to home, we shall look in vain for progressin the larger world."

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