Innovation Areas
National Community of Practice on Supporting Families member states enhance policy, practice, systems, and community change in key focus areas that align with and further existing priorities and initiatives.
Positive, Transformational Change
National Community of Practice for Supporting Families (CoP) member states have much to celebrate, as they harness grassroots momentum and engage with public policy partners, to influence current and future state policy, practice, and systems change. By infusing the values-based framework of Charting the LifeCourse (CtLC), CoP states ensure supports to the person within the context of the family are anchored into various innovation areas. The work and impact of state CoP members is too expansive for this short introduction, but a highlight of some of the Innovation Areas in which states have focused include:
Family and Self-Advocate Engagement:
Building structures and opportunities to ensure active representation and engagement of self-advocates and families at a systems level, including building or enhancing self-advocate and family groups and/or networks.
The CoP for Supporting Families supports states in developing or strengthening opportunities for families to connect and network. Through the development and sustainability of family and self-advocacy networks, state CoPs heighten the mental health, family to family connections and self-efficacy of families and provide a springboard for families to advocate for needed and desired changes on the trajectory to a good life, as well as opportunities to represent the family perspective at a systems level.
Key focuses of this Innovation Area include:
Several states (including, but not limited to Alabama, Hawaii, Maryland, Missouri, Ohio, and New Jersey) have developed strategies for feedback loops that link and align grassroots to influence systems priorities for mutual support and values-based systems design.
All CoP states have leveraged the networks, relationships and resources developed through their CoP activities to ensure clear, ongoing communication with individuals and families, highlighted especially throughout the pandemic. Many states discuss and post their regularly scheduled webinars, resources and feedback sessions as positive experiences that occurred before the pandemic and that will continue with rigor beyond the current COVID response efforts.
Cultural and Linguistic Competency:
Enhancing awareness of and improving cultural and linguistic competency throughout the entire CoP and all of its efforts, such as in the development and implementation of outreach strategies, use of person/family centered frameworks, increasing understanding diversity and equity, and applying that increased understanding to improve supports to families.
Cultural and linguistic competency is pivotal to understanding how to best support families; interacting with the support system, identifying and securing opportunities to participate in the community and gaining access to services and supports.
For individuals with intellectual and developmental disabilities (I/DD), the role of the family is unique and often central in the support provided across the lifespan. Parents, guardians, or other family members of individuals with I/DD often provide medical, behavioral, financial, and other daily supports beyond what many families provide. To maintain the family as a system of support, it is important for policymakers and those in the disability field to recognize the distinctive nature of families—configuration, culture, beliefs, values, emotional reactions, coping styles, family dynamics, etc.
As systems seek to support families and people with disabilities it is critical to infuse and seek to increase cultural and linguistic competency in everything the CoP does through continuous learning, discussion and practice. Woven throughout all innovation areas and work of the Community of Practice – both nationally and in member states – is the commitment to cultural responsiveness. The CoP provides a safe space to listen and learn from one another, bringing state facilitators and stakeholders together to discuss questions they may have, what they have learned and/or are doing or want to do, and how to support each other in improving the system experience for families of diverse cultural, ethnic, racial and linguistic backgrounds/experiences. This includes (but is not limited to) such priorities as:
- Ensuring all meetings and conversations are through the lens of – and specifically considering – cultural and linguistic competence, equity, and cultural responsiveness
- Exploring and refining efficient methods for disseminating resources, tools, etc.
- Considering and implementing strategies to better include individuals with diverse experiences at all levels of the system
- Reaching out and spending time in local communities
- Training and technical assistance to increase the cultural and linguistic competency of staff
Implementation and Practice:
Implementing day to day practices that are person centered and consider the context of the family and community, including integrating person and family centered frameworks and tools into individual and family planning processes and capacity building strategies into systems change with self-advocates, families, and professionals.
The CoP for Supporting Families supports member states in rethinking, redesigning, and implementing practices from the first interaction at the ‘front door’ of the service system and throughout the person-centered planning process. This includes the interactions, conversations, forms, processes, and practices, and making enhancements like providing family and self-advocate friendly information, streamlining forms, addressing immediate needs and giving information/ideas based on the Charting the LifeCourse framework and tools.
Two key implementation and practice focus areas are:
A focus area for over half the member states includes enhancing the skills of support coordinators/case managers as they facilitate person-centered planning. From a systems change perspective, states have or are exploring embedding the principles of supporting families in the planning processes and policies to help ensure the needs of the individual and the family are met, while still comporting with Medicaid and system expectations.
District of Columbia, New Jersey, and New Hampshire (among others) have identified the priority of grounding the principles of supporting families in practices and procedures at the front door to improve system navigation and access.
System Design and Quality:
Developing/aligning Medicaid waivers/authorities, analyzing needed policies, recommending changes, and engaging in overall system redesign and transformation across services and supports that includes a framework centered on the person within the context of the family and community.
Central to the work of the Community of Practice for Supporting Families is anchoring innovative practices in public I/DD systems and across partner agencies to help ensure sustainable and continuous, positive change. Efforts of the CoP are linked to leverage and support the existing state priorities, initiatives, and goals – while considering each state’s local, state, financial, legislative and cultural context. CoP member states have engaged in such activities as developing/aligning Medicaid waivers and other Medicaid authorities in supporting families, analyzing needed policies and regulations to recommend changes to infuse the principles of supporting families, and exploring transformation opportunities in funding, services and supports. Recently, states have begun to consider how to infuse the principles of supporting families into outcomes and quality improvement processes designed to ensure individuals and families have “good lives.”
Two additional areas related to ongoing system design and quality are:
Exploration and identification of how to braid the principles of the CtLC framework into quality oversight and improvement activities and structures is taking place in several states, including Indiana, Hawaii, and Pennsylvania.
Almost all member states of the CoP are working to promote navigation for families and people with disabilities with a stronger “human touch” and a common philosophy through inter- and intra-departmental collaboration.
Innovation Roundtables
The National CoP for Supporting Families hosts monthly Innovation Roundtables as opportunities to connect with CoP member state teams and stakeholders, and to focus the discussion around one shared topic of interest. Breakout rooms and/or state huddles are used to facilitate discussions related to specific strategies and priorities related to that topic.
During each Innovation Roundtable, participants have the opportunity for:
- Connecting with and learning from other state teams
- Sharing best practices and lessons learned
- Identifying and sharing potential strategies to address barriers
- Celebrate and share successes
- Ask questions and receive feedback/support from peers regarding specific topics
- Receive a national perspective and brainstorm what might be applicable in each team’s home state
Roundtable Summaries
CoP Member States can access the slide decks and recordings via the Virtual Blue Space for CoP Members. Click here.