The National Community of Practice for Supporting Families of Individuals of I/DD originally began in 2012 as a project funded by the Administration for Intellectual and Developmental Disabilities. Connecticut, District of Columbia (DC), Oklahoma, Tennessee, Washington and Missouri (as the mentor state), to build capacity through a community of practice across and within these states to create policies, practices and systems to better assist and support families that include a member with I/DD across the lifespan.
In 2016 the decision was made to expand the CoP to 11 other states including Alabama, Delaware, Hawaii, Indiana, Kansas, Kentucky, Maryland, Ohio, Oregon, Pennsylvania and South Dakota.
While each state approach varies, all participate with the mutual commitment to support the goals identified in the 2011 Wingspread Family Support Summit which is as follows, “Overall Goal of Providing Support: 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."
Charting the LifeCourse
Introduction to the LifeCourse Framework
Making The Distinction between supports to families & Family Support
Family Support, as many different fields know of it and refer to it, is a program. We believe that supporting families means actively carrying out a comprehensive and coordinated set of strategies that are designed to ensure that families who are assisting family members with intellectual disabilities/developmental disabilities (ID/DD) have access to person-centered and family-centered resources, supports, services, and other assistance. These strategies are directed to the family unit, but ultimately benefit the individual with ID/DD.
Supporting families requires a comprehensive and coordinated infrastructure that includes the following strategies:
- Education and training on how to access and develop options, opportunities and best practices within and outside of disability services
- Connections to other families and to self-advocates
- Collaborative processes to plan, explore, problem-solve and support a vision for the future for their family member with a disability and entire family system, starting early and continuing across the lifespan
- Mechanisms to assist in navigating and accessing services and supports within and outside of disability service systems
- Recognition of and mechanisms to address issues related to poverty
- Funding for goods and services specific to the support and/or caregiving role for the person with I/DD across the lifespan (e. g., respite, home modifications, cash assistance, assistive technology)
- Plan for crisis prevention/intervention for families and other caregivers
- Training to enhance the family's ability to advocate for services and policies
- System for accountability and quality assurance through data collection, evaluation and feedback loop components
- Integrated services and supports worksheet
- Life Trajectory Worksheet (Individual & Family)
- Life Trajectory Worksheet (Individual Only)
- Tool for developing a vision, individual
- Tool for developing a vision, family
- Uncharted possibilities
- Employment Trajectory Guide
- Employment Trajectory Worksheet
- Lifespan Folder
- Charting the Life Course