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Community Living Committee Minutes, November 2018

Community Living Committee
Thursday, November 8, 2018
3:00 p.m. to 5:00 p.m.
Hilton Garden Inn, Cary, NC

Members Present: Kerri Eaker, Katherine Boeck, Allison Dodson, Christina Dupuch, Joshua Gettinger, Brendon Hildreth, Aldea LaParr, Mya Lewis, Alexandra McArthur, Andrea Misenheimer

Members Absent: Kristy Locklear, James Stephenson, Peggy Terhune, Sandra Terrell

Staff in Attendance: JoAnn Toomey, Philip Woodward, Yadira Vasquez

Guests: Darcy Hildreth, Karen Luken, Janet Price-Ferrell, Jesse Smathers


Kerri Eaker opened the meeting welcoming the members and doing an icebreaker activity about how each member has blessed somebody. 

MOTION:  Katherine Boeck made the motion to approve the August minutes.  Aldea LaParr seconded the motion.  The motion was approved by unanimous vote.

Yadira Vasquez gave the fiscal update.  She explained the new format of the fiscal report.  This new report provides information by committee on bar graphs.  Joshua Gettinger said the new format was somewhat confusing, and Kerri Eaker said the graphs might work better for some members.  Yadira asked the members to send her feedback or put their feedback on the member survey.

Initiative Updates:

From Planning to Action: Integrated Collaborative Care for People with Intellectual and Developmental Disabilities (I/DD)

Karen Luken provided an update on the two consultation pilots and said the initiative will make a recommendation: how do we increase capacity for community healthcare?

  1. The TEACCH Autism Program at the University of North Carolina (UNC) is implementing Project ECHO.  The first cohort, which occurred in northeastern NC, finished in the summer.  Karen said NCCDD member Katie Holler at the Autism Society of North Carolina’s Greenville office receives calls from participants.  Hurricane Florence impacted the second cohort, but recruitment is picking up.  TEACCH is also using leveraged dollars from the Area Health Education Center (AHEC) system to serve military families.  Karen noted that this investment has “really mushroomed.”  She pointed out that 12 other states are interested in how TEACCH is doing specific outreach to behavioral health providers.

  2. Duke is replicating the Massachusetts Child Psychology Access Program (MCPAP).  There is proactive outreach to find out how many patients have an I/DD diagnosis.  Duke is taking the national model to see how to modify it.  North Carolina applied for two Health Resources and Services Administration (HRSA) grants in the areas of maternal depression and pediatric mental health, and NC is one of only three states to receive both HRSA grants.  Duke is investing in family navigation because there is a growing interest in family support. 

Karen said that when the Project ECHO cohorts are finished, there will be a formal link between the two projects.  The initiative has set up a website.  Karen did a presentation in Asheville with Kerri Eaker.

Joshua Gettinger asked if the grantees should present at the next meeting?  Karen said that is possible and there are updated PowerPoints with some quantitative data.  Joshua asked, for Project ECHO, are all the members of the practice trained?  Karen said no, but she posed additional questions that demonstrate the initiative’s impact:  How does the impact spill over to other members of the group?  How do we understand how we impact the practice?  How do we help patients prepare for a comprehensive appointment?

Andrea Misenheimer asked about connecting with Kenneth Bausell at the Division of Medical Assistance (DMA), and Karen responded that Kenneth attended the Community-Academic-Provider (CAP) advisory committee meeting on November 7th.

Supported Living: Making the Difference

Jesse Smathers of Vaya Health provided an update.  The webinars and Virtual Stakeholders meeting were pushed back because of Hurricane Florence.  Karen Luken’s webinar on November 5th had 149 participants, and 87 people participated in the Direct Support Professionals webinar on October 10th.  He said The Arc of North Carolina plans to do a webinar on December 13th, and the Virtual Stakeholders meeting will occur quarterly, with the next one in January.  He also said the Stakeholder Advisory Group will meet on November 30th at the Governor’s Institute in Cary.    

Jesse said the initiative intends to produce 3-to-5-minute videos in Year Three.  He noted that he has had discussions with Intermediate Care Facility (ICF) providers about Supported Living.

Joshua Gettinger asked how many people have transitioned and Jesse said 27 have transitioned with two in the planning stages and one person who moved into their own home using community supports who is living with his sister.  Having people living with their support staff is a big issue.  Joshua asked if there is some way to calculate the overall cost of Supported Living, and Jesse answered yes, noting that Caitlyn Bailey is tracking this kind of information and outcomes, and more information will be available toward the end of the initiative. 

A question was asked about accessing the webinars.  Andrea Misenheimer and Kerri Eaker participate, and the recorded webinars are posted on the initiative’s website.  Jesse said 935 people are on the Learning Community listserv.  He mentioned David Pitonyak’s July presentation and the difficulty scheduling him because he is in high demand.  He also mentioned the Money Follows the Person Workgroup and the statewide effort to inform the system.

Natural Support Network Development

Janet Price-Ferrell of FIRST called in to provide an update about the Community Conversations: 36 total people participated in Black Mountain and Goldsboro in November 2018.  She said the initiative will offer an on-line training from March 25th through May 12th, 2019.  In response to one member’s concern, Janet indicated that the initiative can allow more than six weeks if necessary to accommodate people’s schedules.  Janet said FIRST will videotape all its in-person trainings to make them available digitally.

Rethinking Guardianship: A Person-Centered Approach

Linda Kendall Fields called in to provide an update.  She is working with Trish Farnham and Caitlyn Bailey on the Supported Living Guidebook and is making a section on supported decision-making.  She is very pleased to connect the dots between these two initiatives.  She said the steering committee has 14 key partners, and the ongoing stakeholder workgroup has up to 120 people.  Linda described some of the Collective Impact pieces driving this initiative, including less restrictive decision-making constraints and limited guardianship so that people can maintain as many of their rights as they can.

Linda emphasized the Summit to occur on November 30th because of the historic opportunity it provides.  She had back-to-back, face-to-face meetings with Judge Marion Warren, the Director of the NC Administrative Office of the Courts.  He referred Linda to Jamie Lassiter, Executive Director of the NC Conference of Clerks of Superior Court, and told her which people need to be on board with statutory reform.  The November 30th Summit will involve clerks and workgroup members, and the second and larger part of the Summit will occur on February 25th.  Linda noted that we are beginning to see support and sustainability. 

Joshua Gettinger asked about expanding the reach in terms of educating people on alternatives to guardianship.  Linda said work has been done, and more is needed to create a ripple effect across the state.  She noted that the previous three-year initiative produced a training video and a very user-friendly brochure.  Joshua asked how many people statewide use the educational materials?  Linda said we can track how many website clicks we receive, but it is harder to know how many people are actually using electronic materials.  She said the initiative can see if the percentages changed for the number of people with rights restored or other similar data.  Kerri Eaker said at least 150 families received information at the Mission Family Support Network transition conference in October, and she referred Mission Health Hospital to the website.  Linda noted there is a lot more than we can show data for.  Kerri suggested doing more with the education system regarding transition to adulthood.  Linda mentioned presenting to the Exceptional Children’s program across the state and discussed the work still needed to inform the educational system and healthcare system about alternatives to guardianship.  Katherine Boeck suggested using the model to inform Medicaid Transformation.  LaToya Chancey asked about links to other states, and Linda mentioned that North Carolina is a Working Interdisciplinary Network of Guardianship Stakeholders (WINGS) state.  She said Erica Wood will discuss WINGS at the February 25th Summit.  She also noted the initiative budget supported some clerks to attend the National Guardianship Conference, and they will serve as panelists at the Summit to discuss best practices.

Darcy Hildreth thanked Linda for doing this work because Brendon cannot communicate his needs, but is capable of making his own decisions.  Janet Price-Ferrell said Disability Rights North Carolina’s website has documents relevant to restoring rights.

Motion Items:

Natural Support Network Development

Janet Price-Ferrell distributed Full Circle Capacity Building Initiative cards.  There were no follow-up questions from her presentation to the full Council.  Kerri Eaker said she plans to go to the Black Mountain Community Conversation on November 14th.  Philip Woodward and Aldea LaParr said they plan to go to the Goldsboro Community Conversation on November 16th.

MOTION:   Katherine Boeck made a motion for continuation funding to FIRST for the Natural Support Network Development initiative.  Funding is approved for up to $75,000 per year with required minimum of 25% non-federal matching funds for Year 2 (of up to 3), beginning March 1, 2019 to February 28, 2020.  Joshua Gettinger seconded the motion.  The motion was approved by unanimous vote.

Transportation Update

Joshua Gettinger mentioned one of the worst things is to get a grant that is not adequately funded and noted that the issue of transportation is harder than other things the Council has taken on.  He proposed a 10- or 20-year public-private partnership with someone like Google or Uber instead of the usual three-year grant cycle. 

LaToya Chancey mentioned billing Medicaid for certain transportation expenses.  Christina Dupuch said Medicaid Transformation presents some opportunities, and she mentioned $650 million available in the process, which gives us some hope soon.  She said she has traveled to states that have set up Managed Care and seen where businesses have invested in transportation.  She noted that it is important to connect with the Medicaid system to have some influence at the table.  LaToya mentioned the Division of Mental Health, Developmental Disabilities and Substance Abuse Services (DMH/DD/SAS) is in the process of setting up committees for the Medicaid Transformation stakeholder group.  Kerri asked how do we get informed about those meetings and LaToya offered to share the links.  Kerri said they need to include the I/DD perspective.

Christina said we need some consultation, and she pointed out that the questions asked during today’s meeting are the questions we need to hear.  Kerri said the issue of transportation goes back to the social determinants of health – for example, a person with I/DD not being able to go to the gym.

Wrap Up and Reminders

Allison Dodson motioned to adjourn.  The meeting was adjourned at 5:05.


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This project was supported, in part by grant number 2001NCSCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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