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Community Living Committee Minutes, May 2019

Community Living Committee
Thursday, May 9, 2019
2:00 p.m. to 5:00 p.m.
Courtyard Marriott, Carolina Beach, NC

Members Present: Kerri Eaker, Katherine Boeck, Joshua Gettinger, Brendon Hildreth, Mya Lewis (for MH/DD/SAS), Kristy Locklear, Virginia Knowlton Marcus, Senator Mujtaba Mohammed

Members Absent: Allison Dodson, Christina Dupuch, James Stephenson, Peggy Terhune, Sandra Terrell

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

Guests: Tim Hildreth, Karen Luken


Kerri Eaker opened the meeting welcoming the members and giving Senator Mujtaba Mohammed the opportunity to introduce himself and share his background.  Kerri did a member development activity asking everyone to say one thing they decided to do while here at the beach.  Karen Luken mentioned the “Intelligent Lives” film screening occurring in Wilmington.

MOTION: Kristy Locklear made the motion to approve the February minutes.  Katherine Boeck seconded the motion.  Virginia Knowlton Marcus asked if she needed to abstain because she missed February – the answer was no.  The motion was approved by unanimous vote.

Yadira Vasquez gave the fiscal update.  She said the Council has funding available for new initiatives: approximately $242,500 as of October 1st, 2019 that needs to be encumbered by September 30th, 2021 and spent by September 30th, 2022. 


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 Project ECHO model with UNC TEACCH and the NC Pediatric Access Line (PAL) I/DD model with Duke University.  The most recent Project ECHO cohort enrolled 17 doctors, nurses, and physician’s assistants, and 13 have attended on a regular basis, which is a significant time commitment.  She pointed out that Project ECHO invited the Autism Society of North Carolina’s Spanish-speaking parent resource specialist to participate.  Meanwhile, Karen said the Duke Pediatric Care Telephone Consultation calls help link people to the I/DD service system where 69% of participants were not linked to the system.  She also said the initiative did not receive a quality family navigation proposal at the beginning, so now this initiative is focusing on family navigation through Project ECHO. 

Kerri Eaker said she finds the need to connect family support to the medical community.  Katherine Boeck mentioned the lack of communication between her doctors.  Brendon expressed a concern about people with disabilities not advocating for themselves.  Karen said the May 23rd Summit in Raleigh will emphasize the different partnerships, and the initiative will continue to focus on sustainability and advocacy.

Karen said she has been asked to present at NACDD Conference in New Orleans in July in partnership with the Cross-System Navigation in a Managed Care Environment initiative with Kerri Eaker. 

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 gave an update on the Summit that occurred on February 25th: the room was packed, and the Rethinking Guardianship Workgroup received an award from the NC Division of Aging and Adult Services (DAAS).  She said after the Summit, the Workgroup focused on the study bills in the General Assembly: House Bill 619 and Senate Bill 337.  She shared that House Bill 619 passed 115-2 on Monday, May 6th, so the bill would go to the Senate, and the Workgroup noticed four changes it wants to see in the bill, so Senator Joyce Krawiec has been made aware of the desired changes.  Lobbyists from Benchmarks and the American Association of Retired Persons (AARP) are working on this bill.  She mentioned the challenges with getting the bill passed such as losing Judge Marion Warren of the Administrative Office of the Courts (AOC) to a new job in another state.  However, she said she feels positive about where we stand now.

Supported Living: Making the Difference

Jesse Smathers of Vaya Health called in to provide an update.  Jesse said Vaya Health has been working on the success story video vignettes that will be shared at the closeout conference in Cary during the week of October 28th.  He said changes to the Supported Living service in the Innovations Waiver are scheduled for July 1st, including the service being self-directed.  He mentioned a workgroup focused on transitioning people out of institutions and announced an event on May 24th with national consultant Derrick Dufresne at the Murdoch Center in Butner.  He mentioned a survey of people who are happy with Supported Living services and indicated that Michelle Merritt at the NC Division of Medical Assistance (DMA) is collecting data on the 30 people being served.  He noted that close to 170 people with I/DD around the state are getting Supported Living services; of those 170, 95 people have responded to the survey, including 24 from our initiative. 

Natural Support Network Development

Janet Price-Ferrell called in to provide an update.  The on-line course is currently in progress, and PLAN, which designed the course, has been generous extending the timeframe of the course.  She said 27 people have registered, 17 are in the middle of the course, and two have completed it, including Aldea LaParr.  She said the initiative will conduct an in-person training during the week of June 24th and will have specific outcomes using the Council for Quality and Leadership’s Personal Outcome Measures (CQL POMs).  She pointed out that, thanks to Philip, most of the videos are captioned.  During June to September, they will connect with the participants virtually.  Janet also said she has connected with Horizons, an intermediate care facility (ICF) in the Winston-Salem area wanting to make a change in how they serve their residents, so the facility added this curriculum to their strategic plan. 

Future Investments / Permission to Pursue New Topics

Katherine Boeck raised the issue of transportation, and Joshua Gettinger shared how we went through the RFA process unsuccessfully.  Kristy Locklear said Mary Collier from Robeson County mentioned transportation as a barrier on the morning panel.  Karen Luken mentioned how it is a big issue for the aging population and raised the possibility of having conversations with AARP, NC DAAS, and the Program of All Inclusive Care for the Elderly (PACE).  Karen suggested following the Emergency Preparedness initiative’s blueprint with the NC Department of Transportation (NCDOT) and having stakeholder workgroups and partners such as the Office of Rural Health and Healthy Opportunities.  Brendon suggested having someone with a transportation background join the Council.  Philip said former member Azell Reeves wantedto have a member appointed to the NCDOT Board of Transportation. 

Kerri mentioned the issue of housing and how there is no longer a waiting list for Section 8 housing.  Virginia Knowlton Marcus mentioned some affordable housing being shut down as a result of Hurricane Florence.  She asked if North Carolina has a housing authority, and the answer was yes.  Mya Lewis mentioned the U.S. Department of Housing and Urban Development (HUD) helping people living in institutions move to a group home.  Kerri said the NCCDD is pushing for people living in the community, so the Council needs to address housing. 

Senator Mohammed said transportation and housing are expensive and asked what can we do that is doable.  Katherine shared the Supported Living initiative as an example, and Kerri added that, for Supported Living, we need transportation, housing, and Direct Support Professionals (DSPs).  Virginia mentioned the need for people to have home modifications and organizations such as Habitat for Humanity.  Karen said community colleges are promoting sustainable infrastructure and mentioned multiple ways to address the need. Mya mentioned housing as a big part of the Transitions to Community Living Initiative (TCLI).  Virginia mentioned that some people with disabilities get housing before having the support in place, then they lose the housing, and then the landlord refuses to rent units to other people with disabilities. 

Linda Kendall Fields called back in to discuss the Rethinking Guardianship initiative brochure, titled “An Introduction to Options,” and the supported decision-making proposal titled “Making Alternatives to Guardianship a Reality in North Carolina.”  She discussed the current initiative building a bridge for future development and said the proposal came from awareness by the stakeholder workgroup.  She said when she presented at the ImaginAbility Conference that Anna Cunningham organized in February, she got an hour’s worth of questions about supported decision-making.  Kerri mentioned children in IEP meetings whose parents are told they need to get a guardianship and how transition planning should start closer to age 14 than 18. 

Katherine brought up the issue of social isolation.  Kerri mentioned her son being in a developmental bowling league on Sunday nights with no staff, so she drives her son.  Kerri asked, how do we collaborate with the school system.  Mya said we need to have a conversation with the NC Department of Public Instruction (DPI) if we want to discuss social isolation from a school standpoint and that it needs to start earlier in the students’ educational careers. 

Advocacy Development Committee alternate member Jamila Little gave an update on the NC Department of Public Safety’s (DPS) work, and Kerri asked how can the Council support this work?  Jamila mentioned reentry from the prison system and various resources available to assist with a successful reentry.  Joshua asked about therapy for release, and Jamila mentioned the program that starts in prison until handoff where the probation officer helps the person make a connection with the community.  Kerri mentioned people with mental health issues taking medicine in prison but not able to access it or take it regularly after release because nothing is set up to help them.  Jamila said DPS has case management services. 

The Community Living Committee agreed to the following three research priorities for potential future investments:

  1. Transportation
  2. Alternatives to Guardianship
  3. Fair Housing

On the topic of alternatives to guardianship, Mya mentioned the home-based rule and advised the Council to ensure that we partner with schools to be involved with youth transitions.

Joshua asked about prison reform being in the Advocacy Development Committee or as a cross-cutting issue.  Joshua mentioned Adverse Childhood Experiences (ACES), which relates to many projects.  He asked, how do we make sure this happens in all venues? 

Wrap Up and Reminders

Katherine Boeck motioned to adjourn.  Senator Mohammed seconded the motion.  The meeting was adjourned at 5:05 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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