July 5, 2018
By Patrick Hendry, NCPS, Vice President of Peer Advocacy, Supports, and Services at Mental Health America
Far too many of us have experienced the loneliness of being the "other," the outsider in the society around us, being treated as and feeling like someone with no natural place in the group or the community. Societies across the world categorize people by their value or desirability to the community, and it sometimes feels like for the greater group to have a sense of belonging and community, there must be a group or groups that becomes the “other” and that ‘otherness” is a destroyer of quality of life. The importance of belonging to a group is a theme that runs through much of psychological literature. In evolutionary theory, belonging to a group or community is an essential part of survival. (Oliker, D. M. PhD, 2012)
In my own life, I can remember the pain of extreme isolation. I would hide in my house, not answering the phone or seeking out companionship. When someone came to the door I would run out the back door and hide in the bushes. I truly believed that I didn’t deserve to live. After months of this I finally got up the courage to visit a drop-in center and suddenly my life changed. I was surrounded by people with similar experiences to my own, I was part of a group, I was no longer the “other.” Without that discovery, I honestly don’t think I would be here today.
The overall effects of isolation and exclusion exacerbate disability and are associated with ill health and premature death. (Wilkinson, R., Marmot, M., 2003) These associations begin to make sense when you examine health outcomes for individuals living with serious psychiatric diagnoses. Studies have shown that in the United States those who live with major mental health conditions die 14 to 32 years earlier than the general population. (Insel, T. 2011) Why does this disparity in life expectancy exist? Certainly, major causes include the effects of the enforced poverty that people living on Social Security Supplemental Income experience --and most people with mental health conditions that are unable to work eventually end up on these benefits. Poverty itself shortens life expectancy as does the lack of adequate healthcare, but another primary factor is loneliness and social exclusion.
When you are treated as an outside you become an outsider, and the effects are serious. Several years ago, the staff of MHA Peer Advocacy, Supports, and Services Department began to look deeply into this phenomenon with the hope of finding ways to break through these artificial boundaries. In surveys of individuals receiving psychiatric services and Social Security benefits, we found that the most commonly noted aid to recovery was some variation of "having friends" or "having at least one friend who believes in them."
The result of this research was the development of the MHA program, It’s My Life: Social Self-Directed Care. The program is designed to help build networks of friends, and intimate relationships, thus creating a strong social support system. This, in turn, helps the participants to become active members of the community and feel less isolated which in turn helps to increase self-esteem and self-worth to improve social functioning.
The original program required two Coaches trained as Certified Peer Specialists, with additional training in Psychiatric Rehabilitation techniques, professional Life Coaching, and the principles of Self-Directed Care. Coaches were interviewed by the participants to determine compatibility. The Coaches then assisted the participants in developing their own social needs assessment and social action plan. Each participant was provided with a discreet social budget which they could use for goods, services, and activities outlined in their social action plan. Each person was responsible for their own budgeting.
Participants identified activities in the community that they enjoyed doing. The point of the activity was to put people in situations that they liked and that gave them the opportunity to meet other people with shared interests. Coaches provided individualized social skills mentoring and frequently accompanied the participants on their initial social forays. You can read more and download the manual here. As part of the two-year pilot program, MHA measured changes in quality of life as decided by the individual, rate of re-hospitalizations, and overall program satisfaction as indicated on an anonymous survey.
The program was a decided success. Quality of life as measured using the Personal Outcome Measures tool and as determined by the individual went an average of over 60 percent. In the two-year pilot period, re-hospitalization rates decreased by 90 percent over the previous two-year period. In the anonymous satisfaction surveys, 95 percent of participants scored the program with the highest possible rating.
The problem with distributing the original program has been the cost. With two full-time Coaches and a part-time Program Director, as well as the social budget for each participant, the annual cost of the program was approximately $110,000 – which greatly reduced the number of agencies able to participate.
As a result of the outcomes, and because of the limitations of a high budget, MHA created a new version of the program that is support group-based. Participants support each other as they carry out their social action plans. One Coach participating 4-5 hours per week provides skill-building activities and works with all members of the support group in problem-solving and goal attainment. The average cost of running the It’s My Life: Peer Partners program is $10-12,000 per year for a support group of 12 participants. MHA is offering four $5000 grants for affiliates interested in providing the program. For more information download the Peer Partners Group Based Handbook here.
In hundreds of hours of discussion with mental health peers around the country, one thing stands out. Friendship and peer support have the power to change lives and like in my case, to even save them.
Ditta M. Oliker PhD
On Being the Outsider: The lasting effects of being excluded
Nov. 09, 2012
Wilkinson, R. Marmot, M.
Social determinants of health: The solid facts 2nd edition
World Health Organization
Blog post by Former NIMH Director Thomas Insel:
No Health Without Mental Health
National Institute of Mental Health
September 6, 2011
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