Community Living Committee
DRAFT MINUTES
Thursday, November 7, 2019
Hilton Garden Inn, Cary, NC

Members Present: Kerri Eaker, Mya Lewis, Susan McLean for Virginia Knowlton Marcus, Katherine Boeck, Joshua Gettinger, Peggy Terhune, Christina Dupuch

Members Absent: Allison Dodson, Brendon Hildreth, Kristy Locklear, Mujtaba Mohammed, James Stephenson, Sandra Terrell

Staff Present: Philip Woodward, Yadira Vasquez, JoAnn Toomey

Guests Present: Jesse Smathers, Janet Price-Ferrell, Karen Luken, Michelle Merritt, Caryn Cook, Ginger Smith

Introduction:

Kerri Eaker opened the meeting welcoming the members. 

MOTION:  Joshua Gettinger made a motion to approve the August Community Living Committee minutes, and Katherine Boeck seconded them.  The motion was approved by unanimous vote.

The group asked if we have enough members for a quorum.  Philip Woodward responded that seven of the committee’s 13 members were present, so there was a quorum.

Kerri Eaker announced that Ryan Rotundo has agreed to serve as the next Community Living Committee Chair.  Kerri led an icebreaker focused on natural supports.

Fiscal Update

Yadira Vasquez provided the fiscal update.  She said all of the funds from federal fiscal year 2017 were spent, and she added the projected 2021 federal fiscal year spending to this report.  The available money for new initiatives changed from what she reported in August because NCCDD received an extra $55,000 (this was NC’s share from a reallocation of Puerto Rico funds because the Puerto Rico Council did not have the infrastructure to spend their funds).

Initiative Updates

From Planning to Action: Integrated, Collaborative Care for People with Intellectual and Developmental Disabilities

Karen Luken presented and said sustainability is a primary focus as the initiative’s funding from NCCDD wraps up.  She said the Community-Academic-Provider (CAP) advisory group had its largest meeting to date as 34 members and guests met on September 23^rd.  Karen pointed out that all five health plans awarded the Standard Plans were present and have expressed the need for a statewide infrastructure that supports ECHO and NC PAL through partnerships and a blended payor mix.  She said the initiative believes that the both the Standard Plan and Tailored Plan have a responsibility to contribute to this infrastructure, but the changing timeline with Medicaid Managed Care Implementation does present some challenges.  She also said the initiative continues to meet with numerous community partners to have conversations focused on the needs, opportunities, and challenges that advanced medical homes and long-term services and supports (LTSS) providers will encounter as they implement Medicaid Managed Care. 

Karen said the initiative and partners are actively engaged in the development of a Family Support ECHO pilot that will launch in January 2020 and focus on western North Carolina.  She added that the initiative has a pending DHHS contract that will provide support to DD Plus, TEACCH Autism ECHO for mental health providers, NC PAL multi-disciplinary evaluations, and the 2020 Summit on Family Support and Navigation.

Karen noted that she has discussed the intersection of guardianship and healthcare with Linda Kendall Fields and the importance of informed guardianship discussions in the primary medical home and the Emergency Department.  She highlighted that the NC Academy of Family Medicine’s magazine, distributed to 4,000 members, published an article on the four I/DD projects presented at the 2019 Summit.  She also pointed out that the NC Division of Public Health, Oral Health Section is supporting regional workshops on improving access to community dental care for children and adults with I/DD, a direct outgrowth of the 2016 pilot supported by NCCDD and the NC Oral Health Collaborative and others.

Karen said one of the reasons this initiative has been successful is because the Council gave the initiative enough time to gather information, develop recommendations, and propose a targeted, focused pilot; this approach allowed multiple partners to become engaged in a variety of activities and enabled the initiative to leverage additional funds.

Rethinking Guardianship: A Person-Centered Approach

Linda Kendall Fields of the Jordan Institute for Families at the UNC School of Social Work called in.  She said the Statewide Workgroup will meet on November 19^th and will hear from two speakers from Oregon.  She noted that the initiative has trained and touched the lives of over 2,000 people.  She provided an update on the proposed statutory revisions, saying a group of 18 individuals is picking up where the study bill left off, and the proposed revisions make clear that individuals should have the opportunity to use less restrictive alternatives to guardianship.  She pointed out that this process requires a high level of detail, and the group will continue to have a conversation with the Administrative Office of the Courts and the Conference of Clerks of the Court with support from Interim Director McKinley Wooten.  She added that the initiative completed focus groups, and bullet points of their findings will appear in the Final Report. 

Linda said the Jordan Institute has an agreement from Money Follows the Person in the NC Division of Health Benefits to continue the Workgroup in 2020 with bridge funding that will focus on Informed Decision-Making tools to help transition coordinators.  She also said she has been in contact with Karen Luken because the initiative has an interest in the healthcare piece because hospitals don’t often honor the decision of people with disabilities because they see them as liability issues.  She mentioned possible funding to do this work in two counties – possibly Wake and Orange counties.  She wrapped up by saying the theme for the initiative is the “Long, Winding Road.”

Supported Living: Making the Difference

Jesse Smathers of Vaya Health showed three Supported Living videos.  He said the best thing that has happened in a long time is the panel at the Supported Living: Including Everyone Conference.  He pointed out that Nicole Rotundo doesn’t get Supported Living through the Innovations Waiver, but she was included in the videos because of the theoretical concept of making sure the person belongs in the community.  He said the last person featured, Selena, entered at Level 2 and now is Level 1.  

Jesse said the initiative will host a webinar on December 12^th to show all the videos and unveil the Supported Living Guidebook.  He pointed out that the videos don’t talk about Supported Living but “living in my own place;” meanwhile, the Guidebook will offer housing and other resources such as natural supports.  He said this initiative has learned a lot of successes but also seen a lot of challenges related to funding and added, “The best way to make it work is to start from the beginning and make sure everyone is on the same page.”  Peggy Terhune agreed and said the initiative needs to help the state revise the definition because some people still have 24/7 awake staff and someone shadowing them everywhere, so it is not integrated.  Jesse said the definition has institutional language, and, hopefully, some of the recommendations from the Final Report will not be prescriptive like North Carolina’s definition because other states such as Wisconsin have less prescriptive language. 

Joshua Gettinger asked about accounting to see how much money has been saved, and Jesse replied that individuals ultimately save the system money with having their own place.

Natural Support Network Development

Janet Price-Ferrell of FIRST said agencies who participated in the Community Conversations didn’t have staff participate in the on-line training, so she is looking for other ways to work with groups.  She said agencies aren’t paying enough for Community Navigator services.  Janet also mentioned the connection with the Supported Living initiative, and Michelle Merritt mentioned the Transition service, but Janet pointed out that this service hasn’t worked out so far.  Janet said some experienced people said this training was better than Person-Centered Planning because it adds one more step. 

The initiative received a comment card from Kathie Trotter asking about the 25 individuals and teams.  Janet said the initiative has 23 teams now, but there is a plan to get 25 professionals who can replicate the work.  Janet also pointed out that HORIZONS will train their 30 people, but that doesn’t impact the community as a whole.  She said the Guidebook developed during Year Three will help share information on how to make this work.  Janet also said Jesse Smathers will give her access to the Supported Living listserv for e-mail blasts.

The committee 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 3 (of 3), beginning March 1, 2020 to February 28, 2021.  The motion was approved by unanimous vote. 

I/DD Peer Support Proposal

The group discussed a comment card expressing concern about Optum’s status as a for-profit company.  Peggy Terhune questioned Optum owning the curriculum vs. NCCDD owning it.  Maya Lewis said DHHS does not fully support this I/DD Peer Support because of the need for a specific curriculum and certification as well as possible conflict of interest concerns.  Peggy suggested contacting The Arc of the United States or other experts in the field to develop a curriculum, and she added that if NCCDD doesn’t fund it, Optum can fund it.  Kerri said Vaya Health funded a Peer Support Specialist for that four to five years ago.  Joshua noted that the partnership with Optum seems to be a barrier for the committee, but Mya added that DHHS is not at a point to do peer support.  The committee agreed that it wants to fund something similar that is vetted.  The committee recommended not to fund this initiative but will look further into opportunities and options to create peer support.

Making Alternatives to Guardianship a Reality in North Carolina RFA

Peggy Terhune said she wants to add something regarding guardianship and hospital settings.  Joshua Gettinger commented on the importance of Supported Decision-Making.   Mya Lewis recognized the barrier with Powers of Attorney (POAs) in place and said there need to be some conversations with the NC Division of State-Operated Healthcare Facilities (DSOHF).  

The committee made a motion for staff of the Council to have authority to release the RFA regarding a Making Alternatives to Guardianship a Reality in North Carolina initiative in an amount up to $100,000 per year with required minimum of 25% non-federal matching funds (minimum of $33,333), for up to three years.  In addition, Council staff will have authority to extend the due date for applications, if necessary.  Joshua Gettinger proposed changing the language on Page 5 from “achieve successful legislative reform” to “educate and inform the North Carolina General Assembly on reforming.”

Katherine Boeck made a motion to adjourn at 5:35 p.m.  The meeting was adjourned.