NYSACRA Learning Institute Parent Perspectives [PDF]

NYSACRA Learning Institute on Innovation in Individualized Supports

Phase III: January 2011 – September 2011 Parent Perspectives on Innovation

John O’Brien


Purpose and process

The Learning Institute exists to challenge and sup- port participating service providers to develop the capacity to provide individualized supports to people with developmental disabilities. This is a process that requires social innovation at different scales. Each person and his or her allies need to design the as- sistance that they require to live a good life. Service providing organizations need to develop sustainable ways to deliver a greater variety of individually tailored supports. Policy, especially the rules that specify how money flows and how services are regulated, needs to increase service provider flexibility to respond to different and changing individual circumstances.

Change efforts initiated by agency staff benefit greatly from partnership with active family members. We wanted to give change team members from partici- pating agencies the opportunity to gain a deeper understanding of parent perspectives. Parent innova- tors have made important discoveries about what is possible and what it takes to act resourcefully in the system as it is now. We wanted to give parents who are finding new paths with their sons and daughters a chance to inform participating agencies and connect with one another.

This inquiry focused on 17 parents of people with developmental disabilities who are actively seeking good lives for their sons and daughters with develop- mental disabilities. Most are initiating or participating in the creation of new opportunities and new forms

of support. Some make use of options to self-direct supports; others act in partnership with service pro- viders.

Our purpose is to gain a deeper understanding of family* perspectives on supporting good lives for people with developmental disabilities by creat- ing conversations that allow reflection and thinking together and are open to the emergence of insight. This understanding will influence the ways we build alliances for positive change in the supports avail- able to people and their families.