The Importance of Community and Self-Determination

No one knows who gets the credit for saying "lonliness is the greatest disability".  But we all know how true it is.  People were created to live in community with one another.  We all have 'people' - our personal network of family, friends, co-workers, neighbors, etc. on whom we rely to meet various needs.  For people with developmental disabilities, building a personal network can be impossible.  This is due in part to the challenges of disabiities that often impact communication and social interactions.  However, even greater barriers are caused by social discrimination, devaluation, and historic segregation of people with developmental disabliities.  


Building community - with meaningful interaction, mutually beneficial relationships, and sharing of gifts - is critical to the well-being of people with developmental disabilities, indeed the well-being of all people.  Self-determination is a necessary component of true community.  

Some Thoughts on Making Choices

How does the individual express choices and preferences?

Are these expressions conventional and easily understood or are they unique to the individual?

How many TRUE CHOICES are available to the individual across his/her day?

Are the choices meaningful ones?

Does the individual understand the choices that are available?

Are your values and choices influencing the choices you make available to this individual?

Are you judging his/her choices?

Is there a control issue for you related to the individual?Is there balance between choices and limits?

Are the limits clear and understandable?

Are the limits reasonable?

What are you teaching the individual about how to deal with frustration?

What are the roles of negotiation and compromise and how can you teach those skills to the individual?

Are you willing to empower the individual?

Quality of Life Questions

by David Pitnoyak, Ph.d.

How can we help the person to achieve a sense of health and well-being?

How can we help the person to expand and deepen his/her relationships?

How can we help the person to have more fun in ordinary, everyday community places?

How can we help the person to have more power?

How can we help the person to make a contribution to others?

How can we help the person learn valued skills?

How can we help the person’s supporters to get the support they need?


David Pitonyak, Ph.d.


On The Importance of Belonging

by David Pitnoyak, Ph.d.


Many people who experience disabilities live lives of extreme loneliness and isolation.  Many depend almost exclusively on their families for companionship.  Some have lost their connections to family, relying on people who are paid to be with them for their social support. Although paid staff can be friendly and supportive, they frequently change jobs or take on new responsibilities. The resulting instability can be devastating to someone who is fundamentally alone. 


Click here to read the entire document.

Reflections on Friendship

by David and Faye Wetherow

What steps can we take to invite and support real friendships for our sons and daughters who live with disabilities?  We sometimes see other children moving along in a sea of friendship, and we see our children struggling with isolation.  The natural ebb and flow of play, enjoyment and affection may seem out of reach, and we worry about the possibility of a life-long pattern of separateness.  What can we do?


Click here to read entire document.

Moving From Activity to Connection:  stop cooking and start looking

by David and Faye Wetherow

Personal Assistance:  What it is and What it is Not
by Judith Snow

John O'Brien points out that the 'driving questions' that underlie our work have a great impact on the direction, shape, and outcome of that work.   


We were reminded of this last year when we visited an 'adult day program' that had been developed on the basis of the question "What can we do to replace school for young adults with disabilities who have 'aged out' of school?"  Beginning with that question, the founders created something that had the shape of a school – a program based in a building, people with disabilities ‘attending’ with 'peers' (other students with disabilities), language that focused on skill development, and so on.


Click here to read entire document.

Personal assistance is a form of support for people who are labeled disabled.  People who have been given a disability label are people who have an unusual limitation in their physical functions, their thinking and/or their emotional expression.  For example, they may use a wheelchair for mobility, or their speech may be inarticulate or they may have thoughts and perceptions that other people don't have.  Until recently society has had only four responses to a person who becomes classified as disabled as a result of birth anomalies, injury or illness.  The first response is to go to great efforts to bring or return the person to "normal" functioning - whatever "normal" is in any particular society.  When these efforts are successful a person can keep their status as an "ordinary citizen".


Click here to read the entire document.