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Community Living Committee Minutes February 6, 2020

Community Living Committee Minutes
February 6, 2020

Members Present: Ryan Rotundo, Katherine Boeck, Rhonda Cox, Allison Dodson, Aldea LaParr, Mya Lewis, James Stephenson
Members Absent: Joshua Gettinger, Brendon Hildreth, Senator Mujtaba Mohammed, Peggy Terhune, Virginia Knowlton Marcus, Sandra Terrell
Staff Present: Philip Woodward, Yadira Vasquez, JoAnn Toomey, Talley Wells
Guests Present: Linda Kendall Fields, Jesse Smathers, Dale Stephenson, Jill Hinton, Michelle Merritt, Caryn Cook, Ginger Smith, Diane Upshaw
Introduction:Ryan Rotundo welcomed the committee and did an icebreaker focused on mindfulness.
MOTION: James Stephenson made a motion to approve the November Community Living Committee minutes, and Allison Dodson seconded them.  The motion was approved by unanimous vote.
Fiscal Update:Yadira Vasquez provided the fiscal update. 

Initiative Updates:

Rethinking Guardianship: A Person-Centered Approach
Linda Kendall Fields from the UNC School of Social Work, Jordan Institute for Families provided an update and mentioned the final report.  Philip Woodward said he will e-mail it to the committee and it will be posted on the NCCDD initiative webpage.  Linda said true systems change takes seven to ten years to occur and mentioned the focus groups the initiative hosted and the concerns expressed regarding the Transitions to Community Living Initiative (TCLI), and she said that sharing these findings with Money Follows the Person (MFP) and TCLI will help make a difference bridging guardianship issues.  She also mentioned the workgroup is writing proposed statutory revisions for N.C. General Statute 35A.  The initiative wants to share more stories of individuals, their struggles, and their use of limited guardianship or alternatives to guardianship.  She said the state does not track who has a guardianship or what their specific situation is, but she mentioned the state’s court system transitioning from paper record keeping to electronic record keeping and how the initiative is putting pressure on the courts to keep better records and that this is part of the initiative’s mission to continue to educate to promote the cultural change our state needs. 

Linda mentioned the need to explore the view of guardianship in relation to the hospital system and the need to recognize the rights of people with disabilities in medical situations.  The initiative wants to recommend tools for Adult Protective Services for emergency services without putting people in the pipeline for guardianship.  She pointed out that the initiative has studied models in other states such as Guardianship Partners in Oregon.  She also mentioned foster care ages 18-21 and fiscal agents, as this initiative examined the full population impacted by guardianship.  The Workgroup has about 120 members, and about 40 to 60 are very active.

Katherine Boeck mentioned Jonathan Martinis, the speaker at the i2i Conference in Pinehurst last December who talked about Supported Decision-Making.  Linda mentioned the parallel between Supported Living and Supported Decision-Making, saying, “Everyone uses Supported Decision-Making.”  Linda distributed copies of the Rethinking Guardianship brochure and noted that UNC has the capacity to create free modules to educate people about alternatives to guardianship.  She said there are 100 Clerks of Superior Court in North Carolina, and there are clerks and assistant clerks who regularly attend Rethinking Guardianship Workgroup meetings.  Talley Wells asked about training opportunities for people in the room and awareness building.  Linda said she has five presentations coming up during the next two months, and she mentioned an activity she facilitates that gets participants thinking about how guardianship can impact their own lives.  She added that the previous initiative created the Administrative Office of the Courts (AOC) restoration form to for individuals to restore their competency because such a form did not exist, and she wrapped up by saying she receives calls every week about various guardianship issues.   

Supported Living: Making the Difference
Jesse Smathers of Vaya Health presented an update.  Jesse said there is a different thought about supporting people in their own homes compared to a group home.  He said the Supported Living Guidebook/Resource Manual has five buckets, and the initiative created ten videos with nine people that show the results of supporting people in their own homes.  He said the initiative moved 45 people with I/DD into their own homes; however, all 13,000 individuals who receive Innovations Waiver services are eligible for Supported Living services. 

The committee viewed Dianna’s video.  Aldea LaParr asked about promoting these videos, and Katherine Boeck asked about coordinating with other LME/MCOs, especially in rural areas where there are group homes.  Jesse mentioned Lynne Seagle speaking at the opening conference about the values and attitudes that our state needs to shift to ensure that individuals with I/DD aren’t segregated from society.

Natural Support Network Development
Janet Price-Ferrell of FIRST called in to provide an update.  She echoed what Linda Kendall Fields and Jesse Smathers said regarding the need for a huge cultural change in North Carolina.  She said supporting Personal Support Networks will continue in Year Three, and the initiative will create a portal in addition to an on-line training platform to make specialized trainings easier for families to access in shorter chunks than before where people can log into the Full Circle page directly from FIRST’s website.  She said the initiative will also create a specialized training guide with how-to’s, videos, and other information.  She said FIRST took over the Supported Living Learning Community listserv.  Ryan Rotundo asked about microboards and if this concept aligns with this initiative.  Janet said yes and explained how, with a microboard, different people agree to do different tasks such as someone going to the movies with a person with a disability and someone else helping the person pay his bills.  She said microboards were created for running waiver programs and have similarities to support networks.  Janet also said she has received interest in this initiative from a group in Denver and a group in northern California.

From Planning to Action: Integrated, Collaborative Care for People with Intellectual and Developmental Disabilities
Karen Luken of The Arc of North Carolina called in to give an update.  She said the initiative has continued to focus on sustainability and asked how we can develop a statewide infrastructure to support the work of Project ECHO.  She mentioned opportunities in the Standard Plans and the Tailored Plans such as how the plans can cover some of the costs of doing telephone consultation.  She mentioned the Family Support ECHO pilot that launched in western North Carolina in January.  She said the Council’s investment in the TEACCH ECHO model has made a considerable ongoing impact, and the initiative partners are looking at how to support ECHO across the state.  She mentioned the growth of family support navigation within DD Plus.  She added that there is a continued focus on oral health as a critical part of whole-person care. 

Karen said the partners’ main message is to thank NCCDD for the initial investment and the recommendations that arose from it.  Karen detailed the increase in outreach from partners: The Academy of Family Physicians mentioned this work in its newsletter to 4,000 recipients, and the TEACCH Annual Review was shared through Facebook and e-mail with more than 12,000 followers.  She said the initiative remains actively engaged with multiple healthcare systems and payors.  Ryan asked if the NC Department of Public Instruction (DPI) can be included in the ECHO discussions, and Karen replied that although this work is mainly for multi-health and human services organizations, DPI could be included.  It was mentioned that the UNC School of Social Work has grants for Family Support, and others said it will be important to see the breadth of what results from this funding.  Karen said a positive outcome is that the initiative started with an unknown about how to do all of this but leveraged dollars and partnerships.  Rhonda Cox mentioned a Mountain Area Health Education Center (MAHEC) rollout with community health workers and will connect Karen.

Making Alternatives to Guardianship a Reality in North Carolina RFA
Ryan Rotundo asked the visitors to leave the room prior to the discussion.  The committee received six comment cards that Ryan brought up at relevant points of the presentations, including the RFA discussion.

Mya Lewis questioned who is doing the training and asked if individuals with I/DD will be trained as well as the families?  She mentioned the need to track who is coming to the trainings.  Ryan shared two positive outcomes:

  1. The training piece of this initiative and its impact.
  2. The informative piece of this initiative: If we train professionals, they will educate individuals and families and help them navigate different opportunities.

Mya indicated that we want to make sure we don’t miss anyone important, and Aldea LaParr suggested putting something in the contingencies about who is trained.  The committee agreed to see how the first year goes and potentially set up parameters for future years.

MOTION: Katherine Boeck made a motion that  the University of North Carolina School of Social Work be approved as the applicant selected for the NCCDD initiative entitled 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, for up to three years with Year 1 beginning July 1, 2020 to June 30, 2021 with the following contingencies:  

  • Train More than 100 People: The UNC School Social of Social Work shall train a minimum of 500 people across North Carolina in person, virtually, or by any combination thereof.
  • Increase Outreach: The UNC School of Social Work shall work with its proposed partners to diversify its outreach and educational opportunities, including the methods it uses and the population it reaches across the state of North Carolina, to as many people with I/DD, families, and other stakeholders to be identified in the scope of work. This includes working with initiative partners to make information available in Spanish to North Carolina’s Hispanic/Latino/Latinx community.
  • DSS Representative on Steering Team: The UNC School of Social Work shall have a representative of the North Carolina Department of Social Services (DSS) on the initiative’s Steering Team to ensure that the needs of foster children with I/DD and other disabilities are considered.

Aldea seconded the motion.  The motion was approved by unanimous vote. 

Per the committee’s recommendation, Philip Woodward said the scope of work will list specific outreach methods and groups.  The committee also suggested using agency and organization names instead of individual names as partners in the scope of work.

Mya Lewis made a motion to adjourn at 5:21 p.m.  The meeting was adjourned.


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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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