Community of Practice 2015 Annual Meeting Recap

The 2015 National Supporting Families Community of Practice Annual Meeting was held May 27-29, 2015, in Kansas City, Missouri, at the Westin Crown Center.  The meeting included a pre-session on Person-Centered Thinking and the LifeCourse framework (Wednesday, May 27) and two days of sharing, reflecting, and collaborating among the state teams, project leaderships, and national partners in the Community of Practice for Supporting Families of Individuals with I/DD.

The first day of the CoP Annual Meeting was spent with each state giving a presentation of their accomplishments. As our various notes and media are compiled, we will share the state presentations with you. For a summary of the activities that took place on the first day of the meeting, please visit the following link:


On the second day, we heard reflections and updates from our national partners.

Nancy Thaler, National Association of State Directors of Developmental Disabilities Services (NASDDDS)

Nancy talked about the critical aspect of demographics and climate and how they relate to quality of life.  It is a fact that most people live with their families. If we can’t figure out how to support them, they will be on their own. We must figure out how to support families for a sustainable future.

Watch the video to hear Nancy’s reflection.


Dr. Pat Nobbie, Administration on Intellectual & Developmental Disabilities (AIDD)

Pat noted the themes that stood out to her over the course of the meeting.  She commended the states for their work in changing perceptions, as getting people to change the way they think is very challenging.  She highlighted the tremendous outreach effort that has taken place over the course of the project—this outreach will support sustainability by increasing community supports and connecting with families who aren’t involved in the system to tap into their creativity and innovation. Pat drew parallels between the Tipping Point, a book by Malcolm Gladwell and the project:

“When people are overwhelmed with information and develop immunity to traditional forms of communication, they turn instead for advice and information to the people in their lives whom they respect, admire, and trust. The cure for immunity is finding Mavens, Connectors, and Salesmen.”

Watch the video to hear more.


Donna Meltzer, National Association of Councils on Developmental Disabilities (NACDD)

In the style of David Letterman, Donna created a top 10 list to reflect on the CoP Meeting.

Watch the video to hear the Top 10!


Kathy Brill, Parent to Parent USA

Kathy spoke from the heart as a parent of an individual with a disability and offered some words of advice about supporting families. She presented the idea of the triad approach, where the parent, self-advocate, and sibling movements are working together to improve the lives of families. She also commented on how much learning had taken place over the course of the meeting and that quite a bit of work still lies ahead.

Watch the video to hear Kathy’s comments.


Cathy Enfield, Self-Advocates Becoming Empowered (SABE)

Cathy was supported by her father Richard emphasize the importance of figuring out how to get technology into the hands of people with disabilities to expand their access to independent living and social connections and the right to technology.  They highlighted the declaration, The Rights of People with Cognitive Disabilities to Technology and Information Access. (More info on the Declaration:

Cathy presented a video filmed in partnership with the Sibling Leadership Network about the meaning of family support, Improving Family Support: Ideas from People with Disabilities.

(For another video the duo created, visit Family Support: Voices of People with Disabilities


Moving Forward

National Project Updates & Reflection

Co-director Sheli Reynolds, UMKC Institute from Human Development, then presented a project update and reflection from the National CoP Leadership team. She discussed the conversations the CoP is having around the LifeCourse framework and Person-Centered Thinking and how they can complement each other to satisfy the new HCBS Rule. (More information:

Sheli explained the three buckets of supports and how previously, the CoP focused on the buckets of  Discovery and Navigation and Connecting and Networking, but the focus for the coming years is on the Goods and Services bucket. Topics for supporting families including respite, training on health and wellness, aging in place, paid family caregivers, and partnering with providers fit into the Goods and Services bucket and are on the horizon as a major focus for the CoP.

She also shared information about collaboration with the No Wrong Door (NWD) initiative with the Aging/Disability Resource Centers (ADRCs).  The Community of Practice is exploring how: 1) connecting community partners and statewide systems can support the NWD initiative and amplify the good work they are doing with aging individuals and their caregivers, and 2) using the LifeCourse Framework and Person-Centered Thinking can help NWD staff provide 1:1 support to families to problem-solve everyday life and complex issues.  (More information:


Using Data
During the meeting, many states noted the importance of data.  We saw examples of the National Core Indicators (NCI) being used in Washington and brought the FISP (Individual and Family Information Systems Project) to states attention. The FISP project is out of the University of Minnesota, and works to establish and refine data from states and family support. This data is used to better understand and promote effective supports to families and individuals with IDD who direct their own support.  The data for FISP is about individuals who live with their families or on their own. (Individuals with disabilities who receive residential services are captured in the RISP- Residential Information Systems Project

All Community of Practice states participate in NCI. The core indicators are standard measures used across states to assess the outcomes of services provided to individuals and families. Indicators address things like employment, rights, service planning, community inclusion, choice, and health and safety. The NCI includes a set of surveys for families who have a family member with I/DD getting services.  The family surveys have been updated for 2015-16 and include questions that reflect some of the learning from the CoP. There was a discussion on how states could use the NCI data to look at the outcomes of their work on supporting families.  States also brainstormed on ways they could use the data to inform the Community of Practice.

For the details of Sheli’s presentation, view the powerpoint: 2015 May National CoP Meeting Wrap-up PDF file


CoP Evaluation
Yoshi Kardell, one of the CoP Project Leaders from Human Services Research Institute, presented an overview of the evaluation efforts taking place in the project, including results from a recent survey distributed among the CoP teams evaluating the impact of the various drivers of the CoP Guiding Framework Systems Change in their own states.

View the presentation and survey results: CoP Evaluation –  State Survey ResultsPDF file


Wrapping Up
To conclude the meeting, the group hammered out concrete next steps and discussed how they can prepare for their goals and activities for the upcoming year.


The National Community of Practice team would like to thank everyone who attended and participated in the meeting.  We can’t wait to see what great progress and amazing discussions take place next year as we move forward working to enhance supports to families!

For more videos from the meeting and interviews with national leaders in the field,
visit our Youtube channel:

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Rachel is the Media & Design Specialist on the Family to Family team at the UMKC-Institute for Human Development, UCEDD. She completed her Master's in Public Administration with an emphasis in nonprofit management at UMKC. She is proud to say she is a second generation AmeriCorps member! Her passion is where social justice and technology meet. Her specialty is making projects, programs, and organizations look good.

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