The origins of the Learning Community started with the development of essential lifestyle planning in 1989. It began at the University of Maryland, where Michael Smull and Susan Burke-Harrison were asked to help people to return to their home communities from institutions and residential schools. All of the people involved had developmental disabilities and because of challenging behaviors had been labeled as “not ready” for life in the community. What was discovered was that these were people who could live successfully in their communities but had been trapped by their labels and the “reputations” that they had acquired. Typical ways of planning were not helping them successfully move to their home communities and a new way of describing who they were and what they needed was required.
The efforts to develop this new way of planning became essential lifestyle planning and it has been changing and growing ever since. Its growth has come from the contributions of dozens of people who have developed plans, trained others and learned in the process. From the beginning efforts there has been a pattern of thinking about what might work, trying it, learning, and moving forward. Much of what follows is the on going story of that process.
As the success in helping people leave institutions in Maryland became known, requests were made for assistance to be provided to help people leave institutions in North Carolina, Pennsylvania, and a number of other states. As the efforts spread, the number of places where there was learning about what did and did not work increased and the number of people contributing to that learning increased as well. Those who were supporting the people who left institutions began to see the ongoing utility of ELPs in community settings. The applicability of ELPs spread from something only done to help in deinstitutionalization efforts to something done wherever it made sense to learn what both what is important to and what is important for someone. Learning about supporting people in community settings was further accelerated when the state of North Carolina funded the creation of a community agency (Community Living Wilmington) that used ELP and other “person centered” practices to successfully help over 30 people with intellectual disabilities and significant mental health issues move back to their home communities.
As the use of ELP spread, the need to have more effective means of teaching increased. At that time there was no manual for trainers and information was gathered through a clinical interview. The quality of the information that went into each plan was dependent on the skills of the interviewer. Bill Allen took some of the structured ways of collecting information from materials he had developed and put it together with essential lifestyle planning and created “Listen to Me”. Evolved versions of these “learning frames” have remained central to each of the subsequent manuals and workbooks developed.
With the increasing dispersed use of ELP the need to have relatively standardized training and organized expectations of the competencies of trainers became clear. Curricula for the training of those who develop plans and a process and set of expectations for those who wish to become trainers have been developed and is regularly updated. Over the past decade well over a 100 trainers have been trained and are kept in touch with developments through a listserv (courtesy of Shelley Dumas and the University of Texas) and an annual gathering of trainers held each summer in Portland, OR, and in Manchester, UK (organized through the North West Training and Development Team)
ELP is used across the U.S. and has spread to Canada, the UK, Belgium, and Australia. The geographic spread of ELP has broadened the learning community with Helen Sanderson of the UK taking the lead for coordinating learning there, developing UK specific manuals, and writing extensively about ELP and other forms of person centered planning. As part of her PhD, Helen created a model for developing person centered teams that applies person centered principles and planning to team work. Teams can develop ‘person centered team plans’ and training in this is lead by Jo Harvey and Charlotte Sweeney in the UK.
As ELP has spread there has been an effort to look at the factors that influence the quality of the plans produced and the degree of implementation. What has been seen is uneven quality of plans and too little change in the lives of the people with whom plans are being done. An island of success was achieved in Oregon where a small group of ELP trainers, led by Sherrie Anderson, were funded to consult with service providers on plan implementation. This was part of a successful effort to close an institution and the trainers acted as consultants within the homes and day services that people had moved to. One of the key findings was that plans that are useful in day-to-day support are the plans that are implemented.
As simple as this sounds, we have learned that too often plans are written but are not implemented with consistency. In many cases, service coordinators, case managers, etc. are responsible for writing plans, but provider agencies are responsible for implementation. A strong partnership must exist when the plan “writer” and the plan “implementer” are not the same, otherwise, people’s lives do not change. Ways to make plans more useful and to record the on-going learning that was done in the process were developed. In the UK a national research programme is focused on learning about implementation within services. Five questions are being used for teams to consider implementation issues.
It has become clear that while “person centered planning” is a near universal requirement within the DD system in the States, and as part of Government Guidance in the UK, there are underlying changes in practices and organizational culture that are required to create the outcomes that the plans describe. In response there is now a significant body of training and organizational exercises aimed at helping leaders determine what needs to change and then to create the changes in their organizations needed to support the desired outcomes. These activities include a methodology for assessing organizations across the dimensions of –
- Outcomes for individuals
- Organizational culture
- Knowledge and skills
- Structures, policies, and practices
An assessment of why plans were not being implemented also resulted in the conclusion that paid staff should have the lead role in developing plans only when there is no other viable option. Clearly the first choice in who has the lead role in developing the plan should be the person with whom we are planning, However, for many people with severe disabilities being able to lead the plan requires that there be someone who loves them who is doing the listening, writing, and advocating. Our experience with Katherine’s Mom, Shelley Dumas demonstrated that this was possible and powerful. With funding from Pennsylvania for pilot efforts “Families Planning Together” was developed with Mary Lou Bourne as co-author. Families in Pennsylvania, Missouri, Oregon, Michigan and in the UK, have had the opportunity to develop plans with their son and daughters. In the UK this has been developed by Helen Sanderson and Alison Short into a ‘Partners in Person Centred Planning’ course that includes implementation support for families. The experiences have been positive and families advocate for the plans that have developed in a very powerful way.
As the efforts with families were underway, Pam Werner, of the Michigan Department of Community Health chose ELP as the person centered planning process to introduce across the state to plan with people who have a severe and persistent mental illness. The initial plan was to develop trainers within Community Mental Health Centers. As this work progressed the same phenomena was seen within the mental health system as was seen in developmental disabilities system. Teaching people how to write good plans and training those who could competently teach others was not the challenge. Developing plans that were used was the challenge.
These efforts reinforced earlier conclusions, and coupled with the success with families underscored the need for better ways to support those who use the services in developing their own plans. Significant success had been achieved using “Listen to Me” but more needed to be done if all of those who wanted to take the lead in developing their own plans were to be successful. Karen Manning and Robin Reale from Massachusetts (together with Michael Smull and Liz Obermayer) developed “Thoughts about My Life”. “Thoughts about My Life” asks for much of the same information that is sought in Listen to Me but its’ use of short questions with space for people to write short answers works for many people who have trouble with the way the questions are asked in Listen to Me. With companion material it can also be used to help with adult literacy.
Efforts were begun in Michigan in 1999 with people with mental illness and in several other states with people with developmental disabilities. The result in Michigan is “Planning for Yourself”, a manual for those who use mental health services. With some training and support, people who use these services are learning to write plans that are relevant for their lives that also account for issues of health and safety. The process of plan development has made a number of people better advocates for themselves and has given others a plan that is truly theirs which then replaces the system’s person centered plan.
Lead by P.Sue Kullen, efforts are underway to create and refine a similar manual for people with developmental disabilities. Early efforts in Erie, Pennsylvania suggest that success will be achieved as long as ongoing support needed for those developing the plans is provided. We are learning that people need as much support developing the plan as implementing the plan. Each plan developed that significantly differs from the current plan for support represents the new amount of work needed for influencing the current system of supports.
Efforts to plan with people who had disability issues other than a developmental disability have also arisen as those who are trained apply what they have learned to their own circumstances. Leigh Ann Kingsbury found herself in a situation where she needed to support her grandmother in her own home and then (years later) help her find an appropriate nursing home. She found that the best way to describe the in home support and then the best way to “shop” for a nursing home was to use an ELP. The plan that she developed, Grandma Ruth’s plan, then served as a model when officials in Oregon asked if ELP would work in services for seniors with disabilities. Efforts in Oregon are in the early stages of development but as can be seen from the attached are already showing signs of success.
The opportunity to apply what has been learned arose in an intensely personal way for Amanda George when she was diagnosed with breast cancer. In her efforts to cope with the illness and the medical community she found that her learning was not only helpful for her but would be helpful for others who were breast cancer survivors.
As people with disabilities are aging, we have also found it necessary to begin conversations with people, families, providers,. about retirement and communicating end-of-life wishes. In the UK, Charlotte Sweeney, Jo Harvey and Helen Sanderson have developed a process based on ELP to enable people to plan their retirement. Through the use of essential lifestyle planning, we have also found that people are able to effectively communicate rituals and routines and specific wishes about treatment at end of life. As we have learned, ELP is a solid way to communicate what is important to, and what is important for someone, at any stage of his/her life. Leigh Ann Kingsbury is currently working on a curriculum to train all parties involved in the communication of end-of-life wishes, using ELP as the foundation for the sharing of that information.
The need to extend what has been learned
In a wide variety of settings people find themselves receiving acute or long term services and need to take positive control over what is happening with their life. Everyone seeks to have a balance in their lives between what is “important to” them and what is “important for” them (e.g. issues of health). When we find someone needs extensive care because of a disabling condition or serious illness, what is important for them often takes priority over what is important to them. Where the services are extensive and frequently intrusive, such as in nursing homes and other congregate living facilities, what is important to people can be lost. Those involved with senior services are looking for and developing ways to address these issues. The effort is going forward with those who need to plan end of life issues and who want to have what is important to them in everyday life present despite their medical care. Another example is a person undergoing chemotherapy who found that others were much better able to support her when she talked of her rituals of comfort and what worked in approaches for support.
In developing essential lifestyle planning we have developed structured ways to learn and present the information needed for people to have positive control over their lives. We have learned how listen to people who are not able to communicate with words and we have learned how to give those who are articulate the materials and support necessary to describe how they need to be supported. We have learned how to train staff to listen differently and hear what is important to people as well as what is important for them, especially when the person communicates with his/her “behavior”. Those of us who are part of the ELP Learning Community are seeking to –
- Continue to make the materials and training that exist more effective
- Continue to learn how to have the exisiting materials result in people using services getting the lives that they want, where there is more of what is important to them and a better balance between what is important to and important for
- Extend and adapt what has been learned to help everyone would like to have better positive control of their environment.
- Complement existing person centered planning efforts by looking at what planning style works best under what circumstances and how the different planning styles can work together.