Community Living Committee
Thursday, August 8, 2019
2:30 p.m. to 5:00 p.m.
Hilton Garden Inn, Cary, NC
Members Present: Kerri Eaker, Katherine Boeck, Allison Dodson, Christina Dupuch, Joshua Gettinger, Brendon Hildreth, Mya Lewis (for MH/DD/SAS), Susan McLean (for Virginia Knowlton Marcus), Senator Mujtaba Mohammed, James Stephenson, Sandra Terrell
Members Absent: Kristy Locklear, Peggy Terhune
Staff in Attendance: Yadira Vasquez, Philip Woodward
Guests: Darcy Hildreth, Karen Luken, Michelle Merritt
Kerri Eaker opened the meeting welcoming the members. The member development activity involved all three future investment topics.
MOTION: Katherine Boeck made the motion to approve the May minutes. Allison Dodson seconded the motion. The motion was approved by unanimous vote.
Yadira Vasquez gave the fiscal update. Sandra Terrell made a comment about the NCCDD Communications initiative having different amounts in 2017 and 2018. Yadira answered that there was a $56,000 cost extension in 2018.
From Planning to Action: Integrated, Collaborative Care for People with Intellectual and Developmental Disabilities (I/DD)
Karen Luken of The Arc of North Carolina provided an update, saying the focus is on sustainability and informing Medicaid Transformation. She said that while the Tailored Plans receive a lot of attention, the Standard Plans have an important role in meeting the health and wellness of children and adults with I/DD, and some of the initiative’s expanded partnerships are with entities that were awarded the Standard Plan contracts. She gave an update on the TEACCH and Duke projects, saying 31 medical providers in eastern North Carolina participated in the Project ECHO cohort and adding, “The challenging part is always how they apply it to practice changes.” She said 39 mental health professionals participated in the two Autism ECHO pilots, and she mentioned the support from the Area Health Education Center (AHEC) to do the first military ECHO pilot in the country. She added that the Standard Plan is interested in supporting some of ECHO Autism work. She also discussed modifying the Massachusetts Child Psychiatry Access Program (MCPAP) model to address North Carolina needs and how Duke is using data to proactively reach out to medical practices. She said the initiative continues to support the Mountain AHEC (MAHEC) I/DD clinic and was asked to write an article for the summer magazine for the Academy of Family Physicians that goes out to 4,000 physicians and partners, thanks to Dr. Rebecca Thompson.
Karen said 89 people attended the initiative’s fourth Summit in May, and this year’s event focused on what the projects are doing, what they are learning, and why they have invested in this. She said the feedback was positive because attendees learned things they can move into action. She also said in May eight partners attended the ECHO immersion in New Mexico – attendees included Kerri Eaker and represented six organizations from the mountains to the coast. She said the planning group’s goal is to develop a pilot with didactic learning opportunities with the hope to bring in some blended funding. She added that the ultimate goal is to move family support forward to being more visible and credible as a funded service definition.
Karen described how the initiative continues to receive requests to focus on oral health and dental care, which are not the focus of this initiative but are part of whole-person care. She said in November we will have a sustainability plan for what TEACCH and Duke are doing but, more importantly, how the hybrid of ECHO, telephone consultation, data, and family support is being woven into the Standard Plan and what their role is in the Tailored Plan. She said from the Standard Plan, there is a joint interest in ECHO to help with care management.
Karen asked for any thoughts on how to keep the partnerships going because we want to make sure we are looking broadly at healthcare access and quality. Joshua Gettinger asked if providers feel comfortable treating other people on the I/DD spectrum besides people with autism, and Karen responded that she can answer this more clearly in November in collaboration with initiative partners.
Rethinking Guardianship: A Person-Centered Approach
Linda Kendall Fields of the Jordan Institute for Families at UNC-Chapel Hill called in to provide an update. She said use of the website has increased 30%, and more materials are being added there, including a new Supported Decision-Making, free on-line tool. Linda pointed out that, while the bill to reform North Carolina General Statute 35A has seen no movement in the Senate, the workgroup already has two drafts to work with, whether the bill goes through the General Assembly or not. She mentioned the survey results showing that the biggest barrier for guardians is their perception that there are no services available for individuals transferring out of facilities. Linda said six listening sessions are scheduled to develop a better understanding of the barriers and to inform guardians. At the August workgroup meeting, Indiana will present about what their state is doing with Supported Decision-Making legislation.
Karen Luken said one of the topics mentioned for ECHO is guardianship and guardianship alternatives. Linda said, as guardianship is a multi-layered issue, she hopes to take the alternatives to guardianship and flesh them out to be teachable, and a healthcare audience would be prime for this. She also mentioned the crossover with the Supported Living initiative.
Natural Support Network Development
Janet Price-Ferrell of FIRST called in to provide an update, saying she plans to set up monthly support calls with the trainees who are establishing networks for people with I/DD. She said the initiative is setting up the Personal Outcome Measures (POMS), will have Rebecca Pauls of PLAN take on more of a coordinator role, and will host the next round of in-person meetings this fall. She said FIRST plans to open the on-line training again, and she mentioned organizations from California, Colorado, and Tennessee expressing an interest in this training. Philip Woodward passed out the guides from the June trainings.
Supported Living: Making the Difference
Jesse Smathers of Vaya Health called in to provide an update. Jesse said a Virtual Stakeholders meeting occurred in June, and he gave an update on the numbers: 32 people have transitioned, and three people are planning to transition on September 1st. The closeout conference on October 28th-30th in Cary will feature national expert David Pitonyak, will unveil the on-line resource manual, and will share video vignettes of success stories. He mentioned the #CareforNC.org website, a collaboration of the LME/MCOs, which will soon feature a Supported Living video. He said he and Caitlin Bailey of the University of Delaware will present at the NC Providers Council Conference on October 8th, and he presented at The Arc’s Executive Leadership Forum in Charleston, South Carolina on July 22nd. He mentioned the Rumi roommate matching service and reaching out to Bridges MN to obtain more information.
Joshua Gettinger had two questions:
Future Investments / Permission to Pursue New Topics
Kerri Eaker asked if members want more information from Philip about his research. Katherine Boeck mentioned an idea to have transportation depots in all 100 counties with insurance helping to pay for services. Kerri suggested that a statewide approach can make a bigger impact than working with one pocket of the state. Sandra Terrell said there are limitations on what Medicaid will reimburse for, but she added that transportation is one of the social determinants of health, which Secretary Mandy Cohen advocates for. Kerri shared a comment card from Nessie Siler suggesting that community transportation boards should have at least 51% self-advocates and NCCDD members.
Fair, Affordable Housing
Mya Lewis mentioned housing communities that are disability specific and the Home and Community-Based Services (HCBS) rule for integration. Kerri said full integration is good as long as we ensure the safety of the person with I/DD. She also said a roommate matching service would be valuable to this state. Kerri shared Anna Cunningham’s comment about families working together and the state no longer recognizing L3C’s (low-profit limited liability companies).
Making Alternatives to Guardianship a Reality in North Carolina
Kerri shared Myron Gavin’s comment card asking where to find an explanation guide or “simple language” resource to explain guardianship and its alternatives. Kerri responded that the bank can do wills and powers of attorney, and people can go to The Arc for Supported Decision-Making information. Darcy Hildreth said AARP also has resources.
Kerri asked the committee to vote to prioritize the topics. Transportation received three votes; Fair, Affordable Housing received three votes; and Making Alternatives to Guardianship a Reality in North Carolina received five votes.
Mya commented on the momentum in the area of guardianship and its alternatives and added that a DMH/DD/SAS survey with group home participants revealed that there is a lot of misinformation about what guardianship means. She said changing the guardianship viewpoint will help support individuals to be their own advocates. Joshua Gettinger said guardianship is an issue that the Council is on the verge of accomplishing while the other two topics tie into larger social issues. The committee also took a vote on the second priority, and Transportation received seven votes.
MOTION: James Stephenson made a motion for staff of the Council to have authority to draft the RFA regarding a Making Alternatives to Guardianship a Reality in North Carolina initiative. Request for permission to release the RFA will occur at the November 8, 2019 Council meeting. Transportation is the second priority. Fair, Affordable Housing is the third priority. Senator Mujtaba Mohammed seconded the motion. The motion was approved by unanimous vote.
Joshua commented that transportation is a high-priority, very limiting, unsolved problem for people with I/DD. He suggested using Council funds to make sure staff and members are at every transportation meeting.
Wrap Up and Reminders
Allison Dodson motioned to adjourn. Kerri Eaker seconded the motion. The meeting was adjourned at 4:55 p.m.