Community Living Committee Minutes
November 4, 2021

Members Present: Katherine Boeck, Rhonda Cox, Allison Dodson, Kerri Eaker, Joshua Gettinger, Aldea LaParr, Mya Lewis, Virginia Knowlton Marcus, Ryan Rotundo (Chair), Peggy Terhune, Dale Stephenson
Members Absent: Senator Sydney Batch, Brendon Hildreth, Sandra Terrell
Staff Present: Pam Dempsey, David Ingram, La’Quadia Smith, Talley Wells, Shar’ron Williams, Philip Woodward
Guests Present: Christina Dupuch, Beth Field, Joleen Koch, David Le, Betsy MacMichael, Le’Carla McNair, John Nash, Vicki Smith, Debby Torres

Introduction: Ryan Rotundo welcomed the committee and did an icebreaker focused on a short-term personal or professional goal that each member has for the remainder of this year.

MOTION: Allison Dodson made a motion to approve the May Community Living Committee minutes, and Katherine Boeck seconded the motion. The motion carried with unanimous approval. 

Fiscal Update: Shar’ron Williams provided the fiscal update. She mentioned $30,000.00 that is pending approval to support a possible Economic Impact Analysis initiative.

Initiative Updates:

Justice: Release, Reentry and Reintegration
Vicki Smith and of the Alliance of Disability Advocates (ADA) provided an update. She said ADA is working with about 40 individuals with I/DD, but this number is very low compared to their original expectations that they had hoped to achieve. She announced that, because they do not know when volunteers will be allowed to reenter the state prison system, they will reach out to their county contacts to see if they can work with individuals with I/DD who are serving out a sentence in a county jail. Peggy Terhune asked how this work impacts dealing with racial disparities and asked, if the ADA’s reentry model is so cost effective, can it be applied to everyone who is incarcerated. Vicki said their model does not become involved in pre-sentencing, but the majority of ADA’s consumers are African-American, and ADA can assist with the disparity by reducing the recidivism rate. She also said that NCCDD has asked ADA to work with a specific population rather than the general prison population.

COVID-19 Registry of Unmet Needs Relief
Philip Woodward announced that this initiative ended on September 30th, 2021, but First In Families of North Carolina (FIFNC) requested an extension until December 31st, 2021 to continue to gather data, submit the Final Report in January 2022, and present to the Council in February 2022. Debby Torres, Le’Carla McNair, David Le, and Betsy MacMichael from FIFNC provided an update through a PowerPoint presentation. Le’Carla talked about the Quillo Connect app’s goal to provide quality North Carolina-specific information and content free of charge to people with I/DD and their families and individuals in their chosen circle or network. She said users have created 50 videos, and almost 100 people are actively using the app, but FIFNC is seeking more users. She pointed out how, for sustainability, Vaya Health has funded 300 licenses, while the NC Department of Health and Human Services (DHHS) has award 200 licenses for individuals on the Registry of Unmet Needs in 24 counties in eastern North Carolina. David showed two videos to give members a sense of their content, and Le’Carla announced that they will participate in the i2i Center for Integrative Health Conference in Pinehurst in December 2021. Ryan Rotundo asked about the possibility of developing how-to videos to help self-advocates create their own advocacy videos. Someone asked about sustainability, and Betsy shared that FIFNC and has had conversations with Local Management Entities/Managed Care Organizations (LME/MCOs) and provider agencies.

Registry of Unmet Needs Research Project and A Coordinated Campaign to Meet the Unmet Needs
Christina Dupuch of Cansler Collaborative Resources provided an update on the Registry of Unmet Needs Research Project initiative, speaking about sustainability and recommendations. She said there has been a lot of interest in the Final Report for this initiative that became available in September 2021, and she reviewed some of the recommendations and how the Mental Health Transformation Alliance (MHTA) and the Leadership Alliance for Neurodevelopmental Disabilities (LAND) will use them.
Beth Field of the MHTA and LAND provided an update on the A Coordinated Campaign to Meet the Unmet Needs initiative and how this initiative will start by looking at the landscape and environment in North Carolina related to the Registry of Unmet Needs. She said there are four different workgroups for this initiative: Communication, Policy, Community Engagement, and Stories & Data. She also pointed out how the initiative has an Advisory Council that will look for a common agenda and a consistent voice as part of the Collective Impact model. Mya Lewis shared how some people view the Innovations Waiver as the golden ticket for people with I/DD, but it is important to focus on what the system offers to ensure that people with I/DD have their needs met. The group discussed how a cultural shift is necessary to meet needs instead of merely trying to get more Innovations Waiver spots and held a discussion that involved sharing a lot of different ideas. Talley Wells pointed out how this work is extremely urgent, but we need to take our time to do it the right way. Kerri Eaker pointed out how, after serving as a member of NCCDD for almost ten years, she is glad that NCCDD is finally addressing the “elephant in the room” with this action-oriented initiative. 

Future Investment Discussion

Economic Impact Analysis
John Nash of The Arc of North Carolina provided a follow-up to the overview of the organization’s economic impact analysis proposal that he presented at the August 2021 meeting. He said North Carolina’s I/DD population is collectively large but does not get recognized because it is difficult to identify and quantify the population, their family members, and the staff who work with them. He said The Arc of North Carolina had proposed $250,000 to the North Carolina General Assembly to perform this study, but he does not believe The Arc will receive this funding, so his board set aside $30,000 to conduct a study, they welcome additional funding from other sources, and they have had conversations with RTI and UNC-Greensboro about conducting this study. He mentioned how every $1.68 spent on the I/DD community has a multiplying effect that makes the return on investment $5.50 to $6.00. The group discussed who actually comprises the I/DD population or identifies as part of it.

Talley Wells said the Council needs as much advice as possible from the Community Living Committee to assist the Executive Committee in making a decision on this funding opportunity. He said he told John that NCCDD needs to have as much competition as possible instead of sole-sourcing this work. Peggy Terhune asked about funding this type of study versus supporting I/DD needs. The committee agreed to table this discussion until more information and more context around this proposal becomes available.

Housing / Roommate Matching
Philip Woodward provided an overview of the draft Roommate-Matching Service proposal that he shared with the members, saying he, Talley Wells, and NC Medicaid staff have had conversations with two organizations in other states that provide some type of roommate-matching service for people with I/DD. He shared how Bridges MN in Minnesota developed the Rumi platform to match people with I/DD with live-in caregivers, who can earn up to $59,000 tax-free. He also discussed Partners4Housing in Washington State, the Residential Assessment they use to match people with disabilities to each other, and how the organization trains partners in other states to facilitate roommate matching and shared living. Philip said he could draft a Request for Applications (RFA) on this topic if the committee wants him to do so. Philip said many parents of individuals with I/DD, particularly those using Supported Living, have expressed an interest in roommate matching, and he shared an example of how roommate matching reduces housing costs for each individual because they are sharing the costs. Several members expressed concerns about full disclosure of criminal histories (without disqualifying people with disabilities who have a criminal history) and potential liability when matching people together. The committee came to a consensus that Philip should do more research before the committee votes on how to proceed with this topic.

Wrap Up
Pam Dempsey took a screenshot of the group for communications purposes for O’Neill Communications to use.
Peggy Terhune made a motion to adjourn the meeting, and Katherine Boeck seconded the meeting. The meeting was adjourned at 12:57 p.m.