More than 50 individuals sat down with us and contributed their perspectives on the creation of the Family Support Organization. From December – February we talked to parents, youth leaders, small and large youth and family service organizations, funders, and representatives of the other family-serving systems including DCFS, Developmental Disabilities, Juvenile Court, community mental health agencies, and schools.

The interviews helped us assess the community’s understanding of the value of a family- run organization, and the priorities and challenges for the new organization.  

The big themes we heard were: 
  • We need it! Despite a sometimes difficult history leading up to this effort, there remains passion and commitment among families of children with special needs to develop a family-run support organization.
  • Don’t re-invent the wheel; support and improve on what exists. There is a great desire to build on what is already available to families. People would like the FSO to partner with existing agencies, to enhance and expand services to families, including providing effective and easy-to-use resource and referral tools.
  • I’m told it’s important, but am not sure I get it yet. Most professionals express support for the FSO concept, but unless they have experienced the benefit with their clients they are not clear that it can change outcomes and lives.  Education of professionals in concrete, pragmatic ways is going to be critical.
  • Sustainability is the greatest challenge. Developing a flexible, well-run, and well-funded organization with leadership that renews itself was voiced as the single most critical success factor by almost everyone.
  • Priorities depend on where you “sit”.  The priorities, not surprisingly, varied depending on one’s role in the community. For providers and parent peers directly working with families, the priority was direct service.  For managers and system leaders, training and advocacy at a system level was the priority.  The differences were more about what comes first rather than limiting what services should be provided.  Ultimately everyone wanted service, training, and advocacy as the three pillars of the FSO.
  • Training came up in so many different ways that we will devote the next blog post to this topic.