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Community Living Committee Minutes, February 2019

Community Living Committee
Thursday, February 14, 2019
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, Mya Lewis (for MH/DD/SAS), Kristy Locklear, Peggy Terhune, Sandra Terrell

Members Absent: Senator Valerie Foushee, James Stephenson

Staff in Attendance: Philip Woodward, JoAnn Toomey, Yadira Vasquez, Letha Young, Shar’ron Williams, David Ingram

Guests: Paula Coppola, Darcy Hildreth, Karen Luken, Jesse Smathers


Kerri Eaker opened the meeting welcoming the members and doing an “I Have a Dream” member development activity.  Their responses were recorded on notepads hung on the wall.

MOTION: The November meeting minutes were discussed.  Mya Lewis offered a correction to the minutes: she was not at the November meeting; LaToya Chancey attended on her behalf.  Katherine Boeck made the motion to approve the November minutes with the correction.  Joshua Gettinger seconded the motion.  The motion was approved by unanimous vote.

Yadira Vasquez gave the fiscal update.  She mentioned that funds ($150,000) will be available for new initiatives as of October 1st, 2019. 

Initiative Updates:

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

Karen Luken provided an update and summarized the two primary consultation demonstrations this initiative is supporting:

  1. The TEACCH Autism Program at the University of North Carolina (UNC) is implementing the Autism Project ECHO pilot.  The launch of the primary care cohort #2 was delayed by Hurricane Florence but has now started and includes practices in eastern North Carolina. The mental health cohort #2 is also underway, targeting mental health professionals who have less knowledge about Autism Spectrum Disorder (ASD) so that they can provide treatment to clients across the lifespan with ASD.  The third cohort is focused on the military community and involves primary care, mental health, schools, and the military.  Evaluation will include a focus on comparing primary care cohorts #1 and #2 and also assess the differences between the mental health and primary care cohorts.
  2. Duke is replicating the Massachusetts Child Psychology Access Program (MCPAP) with added features: case finding, proactive outreach to primary care practices, and family support.  Duke has developed an informational packet for doctors to increase their understanding of the disability service system and referral process.  Duke also intends to ask if patients with I/DD are on the Innovations Waiver and, if not, assist with linkage to the Local Management Entity/Managed Care Organization (LME/MCO).  Kerri Eaker said her organization is also interested in the resource packet, as many primary care providers have similar questions. 

Karen said that with DHHS funding, the initiative is now able to explore the use of the ECHO model to develop a statewide approach to family support training, mentoring, supervision, education, and services.  Kerri Eaker, who will attend ECHO training in May, said she is hopeful that ECHO could be used to develop core outcomes, competencies, and training resources for family support specialists across the state.  

Karen said Secretary Cohen’s Senior Policy Advisor was interested in how ECHO aligned with the state’s Early Childhood Action Plan.  She said this initiative is helping NCCDD connect with multiple statewide opportunities for children and adults with I/DD, and Kerri pointed out how far this initiative has gone in a short time.  Karen said that the ECHO model also has potential for meeting the needs of self-advocates, and Kerri added how ECHO could also be a way of helping the medical community understand the ever-changing disability system.

Karen participates in the Cross-System Navigation in a Managed Care Environment initiative that will hold its next meeting in March 2019 and that the initiative will hold its next Summit in May 2019 with a focus on why multiple systems have supported an investment in consultation and education for primary care.

Joshua Gettinger pointed out how NCCDD gave Karen this much money and got a larger amount back.  He said this will transform what the Mountain Area Health Education Center (MAHEC) I/DD clinic and MAHEC Family Medicine can do.  Karen mentioned the value of “seeding” pilot work to establish connections across systems, organizations, and professions and thus achieve a return on investment.  She said the initiative would not have gotten DHHS funds if NCCDD did not support this initial work.  For example, she said the recently formed Wilmington Community Collaborative has brought together 18 people to discuss community needs, gaps, and potential projects that will link medical and disability providers and families to better serve children with complex needs. 

Karen shared that the From Planning to Action team is staying in contact with the MCOs that have received the Standard Plan awards, as this is a critical time for the development and funding of consultation, education, and navigation services. 

Brendon Hildreth asked if, during Medicaid Transformation, he can keep his provider or if he will have to go to a new one.  Karen said the goal is for people to be able to keep their providers: primary care, specialty care, disability services.  However, she said it may depend on whether a person is covered by the Standard Plan or Tailored Plan. 

Philip Woodward said he has copies of the Year Two (2018) report available.  It is also posted on the initiative website: http://www.iddmedicalhealthhomencinitiative.com/

Rethinking Guardianship: A Person-Centered Approach

Linda Kendall Fields from the Jordan Institute for Families at UNC-Chapel Hill called in to provide an update.  She mentioned the Summit scheduled for February 25th, 2019, where the Division of Aging and Adult Services (DAAS) will present an award.  Linda said the initiative originally envisioned one Summit, but the Collective Impact model helped us re-examine the benefit of this and led to a second one.  She said the initiative plans to introduce a statutory reform bill in both the Senate and the House of Representatives at the North Carolina General Assembly. 

Linda emphasized the connection with the Supported Living initiative and supported decision-making and said 250 people visited the Rethinking Guardianship website during the last quarter.  She said she has received many e-mails from people interested in alternatives to guardianship and requests to speak at conferences – all part of the ripple effect of systems change.  Christina Dupuch asked who some of the leaders are at the local level because this would be beneficial for some of the providers.  Linda agreed and said there is already a strong local connection through the Rethinking Guardianship Workgroup. 

Linda said she talked on the phone with the assistants to Senators Richard Burr and Thom Tillis because of their involvement with the Senate Special Committee on Aging’s guardianship report, but both will miss the Summit.  She said the uniform guardianship law shows many of the reforms that this initiative supports.  Joshua Gettinger asked what proactive things did the initiative do to get the support of state government and Linda said the call for change is resounding at a national and a state level; NCCDD had the foresight to start this effort four years ago, and it is now taking shape.  She indicated that DAAS was an early partner because they were aware of the problems with adult guardianship.  She pointed out that the clerks of court were more difficult to get on board; however, a few things shifted the clerks:

  • Face-to-face meetings;
  • This is a partnership, and we are not trying to place the burden on them;
  • Finding a few innovative clerks who demonstrated to their colleagues what they were doing; 
  • Conversations, education, and relationship building.

Linda concluded by saying it takes three to five years to see the fruits of our labor and for our innovations to create a movement.  Philip Woodward said he has copies of the Rethinking Guardianship brochure in English and Spanish.

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.

Supported Living: Making the Difference

Jesse Smathers of Vaya Health provided an update.  He said about 25 people attended the stakeholder workgroup meeting on November 30th, 2018, and the group saw positive stories of people with I/DD living in the community.  Jesse gave a webinar update; said the initiative is working to schedule the closeout conference for the week of October 28th, 2019; and said progress continues on the Supported Living Guidebook.  He also shared that Vaya Health is working with the four provider agencies on video vignettes where individuals who have transitioned to Supported Living will answer questions about living in their own homes.  He noted that the initiative will partner with the NC Provider Conference on October 7th and 8th with national consultant Lynne Seagle speaking. 

Jesse said only about 170 people are receiving Supported Living services statewide, but we want to move the needle on this service.  He said the plan is for the closeout conference to be in Greensboro, but no venue that can accommodate 300 people is available there, so he is looking at options in Asheville.  Jesse said national consultant David Pitonyak will speak, and he credited Peggy Terhune for helping to coordinate David coming to North Carolina.  Peggy said she receives calls about Supported Living every week and said she followed Vaya Health’s lead, and now Monarch is supporting about 15 individuals in Supported Living.  She said this shows the state that other options (besides congregate settings) are available, calling this initiative “an unequivocal success.”    

Darcy Hildreth mentioned wanting Brendon to live independently and thanked Jesse for this work by trying to do Supported Living the right way.  Mya Lewis said providers may not initially have come on board to do Supported Living but found ways to work around the barriers that exist.  Peggy said Supported Living has been difficult for some family members, and without Jesse encouraging them, the family members would never be satisfied. 

Jesse said he will visit Project Transition in Philadelphia with Money Follows the Person (MFP) Project Director Steve Strom.  He also said he will do a presentation at the Murdoch Center through the connection with Monica Harrelson at the Division of State Operated Healthcare Facilities (DSOHF).  He said he has already presented at the J. Iverson Riddle Center.  Mya asked if he will go to all three DD Centers in North Carolina, and Jesse said he has not visited the Caswell Center yet.

Wrap Up and Reminders

Katherine Boeck motioned to adjourn.  Joshua Gettinger seconded the motion.  The meeting was adjourned at 5:07 p.m.


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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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