Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities

In 1989, I had the fortunate opportunity to meet the Bos Family. Their son, Donald, requested to move home from Fairview Training Center, the state institution in Salem, Oregon. Donald, who experienced a rare neurological disease and would only live into his early twenties, wanted to live the last few years of his life with his family in the community and neighborhood where he grew up.

From this challenging but successful indi­vidual support adventure our agency, Com­munity Vision, was born. It has now been almost 27 years and the lessons we have learned from the Bos family still ring true today in terms of the vision and mission of our organization we adopt on behalf of each person we support. Over the years, we have learned that person-centered practices are the only way to support one person at a time and to truly assist people to find connection to one’s community. We have learned that perseverance and the ability to back up and reconfigure supports are key to assisting people to create lives they desire on their terms. We have also found that the term “independence,” which is so loosely thrown about in the culture of disability is a myth. Sure, we all yearn to make choices and assert control in our daily lives, yet we need to be engaged with others in community as we depend upon each other to thrive and survive. This has become increasingly true during a time when as a society we have tended to move away from each other and our neighborhoods 

Today, Community Vision supports over 70 individuals to live in the communi­ties of their choice. Many of the people we support came to us with challenging backgrounds due more to where they lived than the disability they experienced. The segregated programs, institutions, nursing homes and group homes they previously experienced did not promote personal growth, and in many ways contributed to each person’s personal struggles.

Community Vision also assists with indi­vidualized employment and for the last 15 years has facilitated the creation of an asset arm of the organization called Portland Community Asset Builders, which promotes home ownership, individual savings accounts or IDA’s and accessibility and technology loans. All of the asset programs are cross-disability, which has given us the opportu­nity to meet a variety of new people expe­riencing disabilities and to grow and learn from them as they work on asset creation.

Everything we do in terms of supporting people to live full lives is attentive and respectful while being individually focused and person-centered. This simply means individuals and families tell us how they want to move forward with their personal journey of supports, and we listen, and we plan and revise as needed. We have learned over time that everything in life changes and this is true for the people we support. We have accepted that change is part of life. So, we have never said here is your house or apartment, your job, and expected that individuals would stay in the same place or with the same employment forever. We don’t think of ourselves as providing a program – it’s about support­ing an individual to live their life. For those that choose to stay in one place and anchor to one’s community, fantastic; that is what life can develop into with the right connection and support. Too often in traditional programs we have found that individuals are offered limited choices and control; it takes time to find your place and your community. Given true choices, people have chosen to move to different parts of the city, to become home owners, and to request new employment oppor­tunities and different types of supports as they grow and change over time.

The backbone of our person-centered sup­port approach is that we assure individuals hold the cards to the big ticket items or choices. They decide who is the boss in hiring and firing their personal assistants. They decide who controls the budget. They determine where they’ll live and work. And we continue to focus on how people can connect with others in the community to enrich their lives through non-paid relationships. No one creates a commu­nity by simply renting an apartment or buying a home. It takes concentrated effort around connecting and building commu­nity over time. How we assist people to connect to the greater community is para­mount in terms of each person’s happiness. Recently, this work is taking on new focus for us as we have matured into a larger agency. Growing in terms of the number of people we assist has been the biggest challenge in terms of assuring we stay true to our original mission and vision.

As in all of our work we have found it is important to back up periodically and take a look at how things are working. Reflect­ing backward has led us to hire a person who is leading the process to help indi­viduals connect with their various com­munities and neighborhoods. Although we have had general success with this over the years, we can lose our focus in rela­tion to assisting people to create a more connected life. Rather than being satisfied knowing many people have full lives, we have backed up to focus on the additional people who may want to create better con­nections within their neighborhood, and to find the places that can happen for each person in and around Portland.

To make this process flourish, we have reviewed our work in supporting people to find employment. Our person-centered planning process, listening to where people really want to work, has led to many won­derful community jobs. We tend to look for businesses that create an environment that is social and supports people connect­ing beyond employment. We are reviewing the success of that process to help us think about building community in neighbor­hoods. Therefore, this is where we are starting as we look to assist individuals liv­ing in their own homes to move forward. With each person’s permission, the process has started with mapping the communities where people currently spend their time and looking at the places they would want to increase their community connections.

All of the above-mentioned support strategies and value-based tenants of our work are inherent to providing good person-centered supports. As we continue to grow and mature as a support agency working on behalf of people experiencing disabilities, we understand we must hold true to the original mission and the lessons we first learned in the early years support­ing one family, one person at a time, as our vision continues and evolves today.