Community Living Committee Minutes
August 12, 2021

Members Present: Katherine Boeck, Rhonda Cox, Allison Dodson, Joshua Gettinger, Aldea LaParr, Mya Lewis, Virginia Knowlton Marcus, Susan McLean (for Virginia Knowlton Marcus), Ryan Rotundo, Peggy Terhune, Sandra Terrell, Dale Stephenson
Members Absent: Senator Sydney Batch, Brendon Hildreth
Staff Present: La’Quadia Smith, Talley Wells, Shar’ron Williams, Philip Woodward
Guests Present: Mark Cline, Christina Dupuch, Kelly Friedlander, Jill Hinton, Le’Carla McNair, Michelle Merritt, John Nash, Vicki Smith, Debby Torres

Introduction: Ryan Rotundo welcomed the committee and did an icebreaker focused on finding something small that was very meaningful to someone else.

MOTION: Joshua Gettinger made a motion to approve the May Community Living Committee minutes, and Allison Dodson seconded the motion. 

Fiscal Update: Shar’ron Williams provided the fiscal update.

Initiative Updates:

Justice: Release, Reentry and Reintegration
Vicki Smith and Sharif Brown of the Alliance of Disability Advocates (ADA) provided an update. Vicki said the state prisons are still closed to volunteers, and her staff are considered volunteers. She said that as of the end of June, the initiative had received 24 referrals through the prison social worker. Sharif added that the ADA received another one yesterday, bringing the total to 25 referrals with 23 reentry plans completed. Vicki said every referral is a person with I/DD, but the prison often doesn’t have documentation. She requested the members’ assistance with outreach for this initiative.    

Aldea LaParr made a motion to approve continuation funding to the Alliance of Disability Advocates for the NCCDD initiative entitled Justice: Release, Reentry, and Reintegration in an amount up to $195,000 per year with required minimum of 25% non-federal matching funds (minimum of $65,000), for Year 2 (of up to 3) beginning October 1, 2021 and ending September 30, 2022. Joshua Gettinger seconded the motion. The motion was approved by unanimous vote. Note: Susan McLean did not vote on behalf of Virginia Knowlton Marcus.

COVID-19 Registry of Unmet Needs Relief
Le’Carla McNair and Debby Torres from First in Families of North Carolina (FIFNC) provided an update.  The initiative has created 26 of the 50 planned videos so far and signed up 150 users out of 200 spots available.  Le’Carla said David Le has been working on the ground with the six video authors as much as possible.  She said the users comprise a very diverse group across age and lifestyles.  Le’Carla reported thatVaya Health will fund 300 user licenses and that the North Carolina Department of Health and Human Services (DHHS) has awarded 200 licenses for individuals on the Registry of Unmet Needs in 24 eastern North Carolina counties.  Mark Cline from Quillo shared with the committee what Quillo Connect looks like and how users can invite people such as siblings, aunts, uncles, and cousins into their circle.  Joshua Gettinger asked about the value of posting select videos on NCCDD’s website.

Registry of Unmet Needs Research Project
Christina Dupuch of Cansler Collaborative Resources provided an update on the Registry of Unmet Needs Research Project initiative.  She explained the call/paperwork process that officially places a person with I/DD on the Registry of Unmet Needs.  She said she came across many people with I/DD in the course of her research who remain invisible to the waiver system, and she said one mother of an individual with I/DD wishes she had received more information about the Registry from her child’s primary care doctor.  Christina shared her hope that the Tailored Plans will be more involved in sharing this information.  Talley said the initiative will plan to give a presentation in September.

RFA Discussion 

The Unmet Needs Initiative: A Coordinated Campaign to Impact the Registry of Unmet Needs RFA
The committee discussed this RFA and heard concerns that the members head. Ryan Rotundo shared his perspective based on reviewing the RFA application through the RFA Application Review Committee. Talley Wells said this initiative will involve a lot of work on NCCDD’s part, and NCCDD’s new Systems Change Manager, Philip Woodward, Jill Hinton, and Chris Hendricks will work with the contractor on accomplishing this work successfully. Philip shared a document that lists the potential partners and subcontractors that the applicant submitted for this initiative.

Katherine Boeck made a motion that the Mental Health Transformation Alliance (MHTA) be approved as the applicant selected for the NCCDD initiative entitled The Unmet Needs Initiative: A Coordinated Campaign to Impact the Registry of Unmet Needs in an amount up to $150,000 per year with required minimum of 25% non-federal matching funds (minimum of $50,000), for up to four years with Year 1 beginning October 1, 2021 and ending September 30, 2022. Aldea LaParr seconded the motion. The motion was approved by majority vote. Three members abstained. Susan McLean did not vote for Virginia Knowlton Marcus.

The Review Committee recommends fully funding the MHTA’s application with the following contingencies and recommendations:

Contingencies:

• The initiative must ensure that the primary focus stays on intellectual and other developmental disabilities (I/DD) rather than on mental health or Fetal Alcohol Spectrum Disorders (FASD).
• Change the outcome numbers in the Accomplishments section (Section 4 of the DD Suite application) to “at least” or “at a minimum.”
• Ensure that this initiative educates policymakers who are in decision-making positions regarding the I/DD community.
• Ensure that the proposed initiative adheres to this item from the RFA: Research and analysis of diversity, equity, and inclusion issues related to the Registry, including when and how individuals and families learn about and apply for the Registry and the development of strategies to ensure greater equity. 
• Ensure that the Advisory Council has members who are self-advocates with I/DD.

Recommendations:

• The contractor will consider in collaboration with NCCDD establishing a legislative education event for the I/DD community that could become a recurring event.
• Give all policymakers an opportunity to be educated with a focus on the I/DD community.
• Ensure that the public school system / North Carolina Department of Public Instruction (NC DPI) participates on the Advisory Council.

Future Investment Discussion 

Economic Impact Analysis
John Nash of The Arc of North Carolina provided an overview of the organization’s economic impact analysis proposal. He said in a perfect world, North Carolina would receive 15,000 Innovations Waiver slots, but this would require 20,000 Direct Support Professional (DSP) workers. He said at a pay rate of $16 per hour, this would cost $60 million per year. Meanwhile, he pointed out that the State of North Carolina lured Apple to the state at a cost of $958 million. He said filling all of the Innovations Waiver slots would make a positive impact on the economy worth up to $452 million and discussed how I/DD is a collective demographic that everyone in our state should know about.

Katherine Boeck made a motion to adjourn. The meeting was adjourned at 4:30 p.m.