History of the National Community of Practice for Supporting Families
An in-depth overview of how the CoP began, grew, and evolved.
Initial Development
In 2011, a group of national and state leaders in the disability field came together at Wingspread Conference Center to provide direction and guidance for the shift to focus on families. One of the recommendations was to develop and fund a National Supporting the Family Initiative. The initiative was to gain consensus on issues related to supporting families at both the national and state level, that would inform practices and identify policies for advancing family supports. This initiative would also focus on working together to further define and build collaborations within and outside the disability system for supporting families across the lifespan, ensuring that community integration is the standard of all the work. This initiative became the Community of Practice.
Phase 1: AIDD Grant Funded Project (2012-2016)
The National Community of Practice for Supporting Families of Individuals of I/DD originally began in 2012 (CoP) as a project funded by the Administration for Intellectual and Developmental Disabilities. The initiative began as a collaboration between Connecticut, District of Columbia (DC), Oklahoma, Tennessee, Washington, and Missouri (as the mentor state), with the goal 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.
The first phase of the CoP operated under a five-year grant awarded to NASDDDS by the Administration on Intellectual and Developmental Disabilities (AIDD) beginning October 2012. Along with NASDDDS, the core project team included the Institute for Human Development at the University of Missouri – Kansas City (UMKC), and the Human Services Research Institute (HSRI). Staff from NASDDDS and UMKC co-directed the project, and HSRI contributed expertise to track and evaluate project activities.
In addition to the project team, an advisory group of national partners was formed and included representatives from Parent to Parent USA (P2PUSA), National Sibling Leadership Network (SLN), Self-Advocates Becoming Empowered (SABE), Association for University Centers on Disabilities (AUCD), National Association of Councils on Developmental Disabilities (NACDD), and other advisors.
The overarching goal of this project was to build capacity across and within states to create policies, practices, and systems to better assist and support families that include a member with IDD across the lifespan. More specifically, the project achieved the following outcomes:
- Enhanced state policies, practices, and systems that result in improved supports for families with a member with IDD through the development of a multi-level community of practice;
- Consensus on a national framework for supporting families that addresses the needs of families with a member with IDD across the lifespan, and supports states to develop and sustain exemplary family support practices; and
- Capture and share lessons learned to develop, implement and sustain exemplary practices to support families and systems.
The CoP provided a vehicle for a diverse group of people, representing six jurisdictions, to come together and rethink and retool supports for people with IDD and their families. Each of the six participating sites formed a local team, which became the backbone of this initiative.
The Charting the LifeCourse framework evolved as the model framework that members of the CoP used to think and speak differently about people with IDD, their families, what they needed, and how systems of support might align along a new paradigm.
The experiences of the national and local CoP yielded the following lessons:
- Charting the LifeCourse was more than a collection of tools, but rather a guiding framework for how to think, problem-solve, and build a new future for supporting families; and
- Participants in the CoP learned to embrace the process of transformational change that required a shift in culture regarding people with IDD and their families and the supports they need.
For more details of the activities and accomplishments of the , see: Setting a Fresh Course :Assessing the Impact of the National Community of Practice for Supporting Families of Individuals with Intellectual and Developmental Disabilities, November 2017.
Phase 2: Expansion After the Grant Funding with 11 New States (2016-2019)
In July 2016 – as the grant cycle ended – eleven (11) additional states expressed interest in joining the CoP, in addition to the interest of continued participation from the original states. The NASDDDS board voted to move forward with this expansion as an optional membership benefit for states and to provide project sustainability for this successful initiative. The National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Institute for Human Development at the University of Missouri-Kansas City agreed to partner to lead and facilitate the expanded Community of Practice with the 17 member states, building on the success of the initial phase.
While each state approach varied, all participated with the mutual commitment to support the goals identified in the 2011 Wingspread Family Support Summit which is as follows, “ 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.”
The CoP provided an opportunity for members to participate in a learning community across and between states for support in applying the Charting the LifeCourse framework for state system change. This included ongoing support from the National Project Team, joint sharing and learning with other states, participation in innovation workgroup, and access to materials and products.
Phase 3: Continued Expansion
(2019-Present)
13 member states continued to express interest in maintaining membership in the Community of Practice at the close of the three-year expansion cycle. The National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Institute for Human Development at the University of Missouri-Kansas City agreed to continue to partner to support the ongoing efforts of member states to adopt and implement the principles of supporting families, operationalizing them into policy, procedure, and practice changes.
An additional five (5) states expressed interest in joining the growing movement to drive systems change to better support families in 2019, with another two (2) states becoming members in 2020. Member states receive:
- Technical assistance and support from the National CoP Project team to develop a state team formation and action
- State-specific technical assistance and consultation to develop a plan based on the state’s priorities
- Capacity building to use the Charting the LifeCourse framework to assist with plan implementation
- Join sharing and learning with other states
- Participation in Innovation Roundtables
- Access to materials and products
Timeline
National Agenda on Family Support for Families of People with Intellectual and Developmental Disabilities a gathering of national leaders hosted at the Johnson Foundation’s Wingspread Conference Centerthat proposed a new structure for implementing policies and practices for supporting families with members with intellectual and developmental disabilities, based on the current reality, needs and expectations of people with disabilities. A key outcome was defining supports to families in policy and practice to support families, with all their complexity and diversity, in ways that maximize their capacity, strengths, and unique abilities so they can best support, nurture, and facilitate the achievement of self-determination, interdependence, productivity, integration, and inclusion in all facets of community life for their family members. The final report co-authored by Dr. Michelle C. Reynolds, continues to serve as the foundation of the Charting the LifeCourse framework.
The National Agenda on Family Support for Families of People with Intellectual and Developmental Disabilities Wingspread Report was presented at the 2011 Mid-Year NASDDDS Conference, May 2011. The theme of this conference was Building a Sustainable Service System. This meeting focused on meeting present needs without compromising the ability to meet future needs as a factor as state leaders navigate challenges for the population they serve with an emphasis on personal empowerment, futures planning, and strengthened support networks.
In response to the National Agenda on Family Support, the Administration on Intellectual and Developmental Disabilities (AIDD) funded the National Community of Practice for Supporting Families of Individuals with Intellectual & Developmental Disabilities. This project is a partnership of the National Association of State Directors of Developmental Disabilities Services (NASDDDS) with the University of Missouri Kansas City-Institute on Human Development (UMKC-IHD) and Human Services Research Institute (HSRI). Starting in October 2012, five states were selected to participate through a competitive application process: Connecticut, District of Columbia, Oklahoma, Tennessee, and Washington. Additionally, Missouri served as a demonstration state, due to its role in developing the Charting the LifeCourse (CtLC) framework and the initial implementation within the state developmental disability agency.
The goal of the National Community of Practice on Supporting Families is to build capacity across and within States to create policies, practices, and systems to better assist and support families that include a member with I/DD across the lifespan. Outcomes include state and national consensus on a national framework and agenda, improved supports to families through enhanced national and state policies, practices, and sustainable systems, and supporting families and systems through enhanced capacity to replicate and sustain exemplary practices. In its first round, the National Community of Practice on Supporting families developed the CoP Supporting Families Guiding Principles and UMKC developed the icons, visuals, and tools, and resources to understand the principles.
In June of 2016, the National Community of Practice on Supporting Families convened for their second annual meeting in conjunction with the NASDDDS Directors Forum and Mid-Year Conference, Reframing Policies and Practices to Support Families. This event was held in Kansas City, at The Westin Crown Center. States focused on the importance of supporting families as they are adapting to meet federal home and community-based service (HCBS) requirements and redesigning their systems. Building on the work from the 2011 National Agenda on Family Support, which defined families as the core unit in our society serving as a source of support for all its members, and the continued growth and development of the Charting the LifeCourse framework which attendees continued responding to the unique role of families for people with I/DD and the key roles they play in identifying and securing opportunities to participate meaningfully in their communities and accessing self-determined lives.
The National Community of Practice for Supporting Families met for its third annual meeting in May of 2015, in Kansas City. This event brought together the national partnership council, five states engaged in the CoP, Missouri as the model state, and project leadership from UMKC-IHD and NASDDDS. Additionally leaders from South Dakota attended this meeting as they were interested in joining the Community of Practice. At this meeting the CoP states presented on the current realities in their states, their core activities, lessons learned, and visions for the coming year. The evaluation team presented on the state surveys next steps for the CoP were identified as CoP members partnered to map strategies for supporting families across the LifeCourse.
The National Community of Practice for Supporting Families met for its second annual meeting in May of 2014, in Kansas City. This event brought together the national partnership council, five states engaged in the CoP, Missouri as the model state, and project leadership from UMKC-IHD and NASDDDS. This meeting opened with an introduction of Creating Blue Space with Hanns Meissner to guide states in establishing their status, successes, and barriers. Additionally, states reviewed their spaces and the space of the CoP, innovations, and applications. During this meeting participants further refined the beliefs and principles of the CoP through the lens of Charting the LifeCourse and began the Guide to Applying the CtLC Framework to Policies and Practices, by identifying systems drivers.
The National Community of Practice for Supporting Families convened for the first time in June of 2013, in Kansas City, MO. This event brought together the five states engaged in the community of practice as well as Missouri as the model state, project leadership, and national project partners to set the foundation in the principles and values for supporting families across the life span through the lens of Charting the LifeCourse.
During this meeting, the state and national teams developed key principles that would drive the work of the National Community of Practice on Supporting Families. These principles served as the foundation during the development of the Charting the LifeCourse framework which encompasses both person-centered and family-centered values and activities.
Guiding Principles of Community of Practice on Supporting Families
- Fosters self-determination and quality of life of persons with I/DD and their families
- Focuses on the strengths, capacity and diversity of the person within the context of their family
- Enhances life experiences that promote a trajectory towards the quality of life outcomes
- Helps persons with I/DD and their families ENVISION and PLAN FOR POSSIBILITIES and dreams before the crisis, life-transitions, and future
- Supports the informational, emotional and day-to-day support needs of all family members
- Utilizes INTEGRATED supports within and outside of formal disability-specific services
- Can help to CHANGE EXPECTATIONS of role and responsibility of service system,
- Potential to LESSEN THE FREQUENCY AND LONG-TERM NATURE of crisis services
- Builds on the strengths and contributions of persons with I/DD, their families, and the community
- All level of change is driven by the person with I/DD and/or their family in partnership with others
NASDDDS and UMKC-IHD created a membership option for eleven new states to join the original CoP. (Alabama, Delaware, Hawaii, Indiana, Kansas, Kentucky, Maryland, Ohio, Oregon, Pennsylvania, and South Dakota). These eleven states joined the original states to continue building capacity to create policies, practices, and systems to better assist and support families that include a member with I/DD across the lifespan with the overall goal of supporting families with all of their complexity and diversity to maximize their capacity, strengths, and unique abilities to best support, nurture, love, and facilitate opportunities for the achievement of self-determination, interdependence, productivity, integration, and inclusion in all facets of community life.
In 2017, ACL awarded an evaluation contract to New Editions Consulting and its partner, The Lewin Group, to evaluate the CoP. All states that participated in the CoP for at least two years between 2012 and 2018 are included in the evaluation. The evaluation report identified both the immediate and ongoing value of the Community of Practice, both within and across states. Highlighting how the Community of Practice engages “diverse partners around a shared purpose, generating buy-in and promoting collaboration across different systems,” Lewin also identified that the CoP provides a structure for capacity building, identifying and targeting areas for change, and ultimately has advanced new goals, strategies, and operations – including “changing policies and services to advance supports to families,” and creating additional efficiency in state systems.
The National Community of Practice for Supporting Families met for its annual meeting in May of 2017, in Kansas City. This event brought together the national partnership council, the 12 states engaged in the CoP, and project leadership from UMKC-IHD and NASDDDS. At this meeting attendees reflected on accomplishments and focused on refining the innovation areas, continued integrating the work of supporting families and Charting the LifeCourse principles, and moving to actions.
The National Community of Practice for Supporting Families met for its annual meeting in April 2018, in Kansas City. CoP states engaged in a series of panel discussions to explore and enhance the three primary focus areas in which they receive technical assistance and support from the National Project Team. These included state team structure and organization, transformational change through building capacity in and integrating the principles of the Charting the LifeCourse framework throughout the state, and leveraging the shared learning of the Innovations workgroups to focus on priority initiatives. State teams engaged in strategic visioning and brainstorming to begin planning for the third year of the Community of Practice, both for their state and for the National Community of Practice as a whole.
The National Community of Practice for Supporting Families met for its annual meeting in April 2019, in Kansas City. Preliminary results from the CoP Evaluation were presented. CoP states focused on human and systems needs, celebrated successes, and engaged in planning as states and full CoP.
The third phase of the National Community of Practice on Supporting Families began in July of 2019. In this phase, more than 17 states have been active members of this network. This phase of expansion offered different levels of engagement, including Development for new states (Massachusetts, Michigan, Minnesota, New Jersey, and Virginia), Integration for states (Alabama, Delaware, District of Columbia, Indiana, Maryland, and South Dakota) involved in the CoP for three years with full access to the CoP, and Sustainability for existing states (Connecticut, Hawaii, Kansas, Missouri, Ohio, Oklahoma, Oregon, and Pennsylvania) who have engaged with the CoP for three years focused on identifying and leveraging opportunities. These levels support the original goal of the project to identify and scale-up policy and practice change that supports families. As the CoP has both expanded and evolved, the goal of the network is to enhance person-centered policy and practice change that recognizes and supports the person within the context of their family.
The National Community of Practice for Supporting Families met for its annual meeting virtually over the course of three meetings in May and June 2020. Attendees engaged in robust discussion about states leveraging strategies to continue providing person-and family-centered supports in the current COVID-19 reality and moving forward. In the second session, states collaborated around establishing, nurturing, and maximizing partnerships to expand the impact and ensure the sustainability of innovations. The third session focused on exploring transformative efforts around innovations for enhancing person-centered planning, using technology for family engagement, communication, trauma-informed supports aligned with CtLC, and the role of ambassadors in connecting and contributing to the CoP vision for system change.