Graphic: Three Buckets of supporting families

These are the three buckets of supporting families.

A lot of times as professionals in fields that work directly with families, when we are talking about providing supports to families we focus on actual goods and services. We know that need families need more.

Sometimes they need information about a disability diagnosis or about a particular therapy or program. Sometimes, they need opportunities to connect with others who have been in their shoes.

In 2011, a group of diverse national and state family support leaders and stakeholders met during a three-day intensive conference held on March 6-8, 2011 at the Johnson Foundation’s Wingspread Conference Center in Racine, Wisconsin. The purpose of the conference was to generate recommendations for a National Agenda on Family Support for families of people with intellectual and developmental disabilities (I/DD). The outcome of the meeting was the Wingspread report, which outlines recommendations for supporting families:

The overall goal of supporting families, with all of their complexity and diversity, is to maximize their capacity, strengths, and unique abilities so they can best support, nurture, love and facilitate opportunities for the achievement of self-determination, interdependence, productivity, integration, and inclusion in all facets of community life for their family members. Supporting the family is defined as a set of strategies targeting the family unit but that ultimately benefit the individual with I/DD.

Supporting the family strategies are intended to assist family members who have a key role in the provision of support and guidance of their family member with I/DD to address the emotional, physical and material well-being of the entire family. Strategies must be designed, implemented and funded in a manner directed by the family unit. They should be flexible, comprehensive, coordinated and include the following:

  • Information, education, and training on best practices within and outside of disability services, accessing and coordinating community supports, and advocacy and leadership skills.
  • Connecting and networking a family with other families, including parents with disabilities, self-advocates and siblings, grandparents and other guardians for mutual support.
  • Services and goods that are specific to the daily support and/or care-giving role for the person with I/DD, such as planning for current and future needs, respite, crisis prevention and intervention, systems navigation, home modifications, and health/ wellness management.

The design of these supports and strategies recognizes the complexity of families in terms of their diversity, experiences, resources and memberships. Members may include parents, some with disabilities themselves, siblings, aunts and uncles, grandparents and others considered to be family. They may live in the same home or within the community in their own homes.

For each family, these supports are unique in terms of the type and intensity, and are often not supports that will decrease overtime as the child becomes an adult, but rather supports that will need to continue across the lifespan. These strategies will assist families as they adjust and accommodate to their new responsibilities throughout the lifespan of the individual with a disability.

Discovery & Navigation

Information and Training Supports

  • Information on disability
  • Information about options and possibilities for employment, community living, relationships, recreation
  • Knowledge about best practices and values
  • Skills to navigate and access services
  • Ability to advocate for services and policy change
Connecting & Networking

Emotional Supports

  • Parent-to-Parent Support
  • Self-Advocacy Organizations
  • Family Organizations
  • Sib-shops
  • Support Groups
  • Professional Counseling
  • Non-disability community support

Goods & Services

Instrumental Supports

  • Self/Family-Directed services
  • Transportation
  • Respite/Childcare
  • Adaptive equipment
  • Home modifications
  • Financial assistance
  • Cash Subsidies
  • Short/Long term planning
  • Caregiver Supports and training

From: Hecht, E. & Reynolds, M. (2012) Building a national agenda for supporting families with a member with Intellectual and developmental disabilities. Washington DC: AIDD.

Connect with the Wingspread Report at supportstofamilies.org/resources/wingspread-final-report/