Community Living Committee
DRAFT MINUTES
Thursday, August 10, 2017
3:00 p.m. to 5:00 p.m.
Hilton Garden Inn, Cary, NC

Members Present: Kerri Eaker, Mya Lewis, Christina Dupuch, Joshua Gettinger, Michael Groves, Vicki Smith, Brendon Hildreth, Katherine Boeck, Aldea LaParr, Alex McArthur

Members Absent: Peggy Terhune, Sandra Terrell, James Stephenson

Staff in Attendance: Philip Woodward, Yadira Vasquez

Guests: Karen Luken, Amanda Zaski, Jesse Smathers, Linda Kendall Fields, Darcy Hildreth (with Brendon Hildreth), Caryn Cook (ASL interpreter), Natalie Davis (ASL interpreter), Paula Coppola

Introduction:

Ms. Eaker opened the meeting welcoming the members and asking them to do an icebreaker where they state who they are, one strength, and one goal they have for their Council involvement.

Minutes from the May 2017 Community Living Committee meeting were reviewed.

MOTION: Dr. Gettinger made the motion to approve the minutes as read, and Ms. Dupuch seconded the motion. The motion was approved.

Fiscal Update:

Ms. Vasquez provided the fiscal report and reviewed the fiscal report forms in the committee folders. By request of the Council members, she added a sheet of definitions titled “Term Descriptions,” which Ms. Smith complimented. Ms. Luken commented about receiving invoices from Duke being slow.

RFA Discussion:

Dr. Gettinger praised the RFA writing and called them inspirational. Ms. Smith commented that the review process made it more robust. The committee members had no further comments. Mr. Woodward explained that the RFA review process has a review committee that will be formed with Council members, stakeholders, and topic experts to come together for two meetings: an orientation meeting in September and a meeting to review the submissions in October. He said the Executive Committee will review the recommendations, and then the Council will vote on them at the November meeting.

MOTION: Ms. Lewis made a motion to grant NCCDD staff authority to release the Request for Applications (RFA) regarding the I Get Around – Improving Transportation Options initiative, in an amount up to $75,000 per year with required minimum of 25% non-federal matching funds for Year 1 (of up to 3), beginning March 1, 2018 to February 28, 2019. Approval to fund will occur at the November 3, 2017 Council meeting. Ms. Smith seconded the motion. The motion was approved by unanimous vote.

MOTION: Ms. Smith made a motion to grant NCCDD staff authority to release the Request for Applications (RFA) regarding the Using Natural Supports to Build Greater Community Engagement initiative, in an amount up to $75,000 per year with required minimum of 25% non-federal matching funds for Year 1 (of up to 3), beginning March 1, 2018 to February 28, 2019. Approval to fund will occur at the November 3, 2017 Council meeting. Ms. Dupuch seconded the motion. The motion was approved by unanimous vote.

Future Investment Priority Discussion:

Ms. Eaker updated the members to let them know other two future investment priorities they voted on in May are now slated to have RFAs released in February 2018. Mr. Woodward further updated the members on the research he has done so far. He explained there is not enough knowledge in each area for the Council to move forward at this point, and more research is needed to inform the Council on how it can maximize its investment in each area.

Community Navigator and Targeted Case Management
Mr. Woodward referred to the discussion from May and said the Local Management Entity/Managed Care Organization (LME/MCO) system is still evolving. He mentioned the need for the committee to agree to clearly define terms like “community navigator,” “community guide,” and “care coordinator” in order to move forward in this area and invited the committee to discuss this topic further.

Ms. Smith said one perspective that was overlooked is: what works best? She asked for a definition of the service that works best and suggested that the committee come up with something to propose as a potential change down the road and discuss what needs to happen. Ms. Dupuch stated that many families are lacking something. Ms. Eaker mentioned the fear and frustration around the Adult Care Homes report.

Ms. Smith asked if the committee wants case managers to do advocacy? Ms. Dupuch said care coordinators have restrictions, and Ms. Smith asked, what does the word “management” mean? Ms. Dupuch asked for parent perspectives, and Ms. Hildreth said that as a parent, it’s nice to have resources, but some people don’t know what to ask for. Mr. Hildreth observed that everywhere he goes, the services are different, and a person has to start over again each time he or she moves somewhere new. Ms. Smith commented that she is not sure “advocacy” is the right word. She offered a suggestion: between now and November, develop a questionnaire to send out to all Council members because we have a lot of resources on the Council. She also asked: how do we define “service?” Ms. LaParr said “service” won’t always mean paid service; an example is support groups that provide community support and inclusion.

Ms. Kendall Fields asked to make a comment. She noted that two words popped up during this discussion: resources and advocacy. She believes these terms seem different than case management and noted that resources can be services or people. Mr. Smathers noted that he was once a case manager, and they are expected to know every resource in the community, which is impossible. He noted that there is a coordination aspect, and it is important to focus on what the person needs. He said care coordination and community navigator are not enough.

Ms. Lewis asked, what’s missing? She said people know and understand the resources and understand there is some level of training involved in being a case manager, and she supports the idea of a survey for the members. Mr. Hildreth suggested dividing the state’s services into three sections: west, central, and east.

Ms. Eaker asked what the committee should do next and if the committee should form a workgroup. Dr. Gettinger proposed doing what the Council is doing with its Rethinking Guardianship initiative: “Rethinking Case Management.”

Shared Living

Ms. Smith said pockets in our state are doing shared living. Ms. Eaker mentioned four males with autism living together. Ms. Lewis asked if this arrangement is licensed and said North Carolina has AFL: Alternative Family Living. She said this concept changes the thinking. Mr. Smathers stated that shared living has a component that the person doesn’t have to move if the service changes. Ms. LaParr asked if, with $50,000, can we establish a database to assist with finding a match? Mr. Woodward provided a research update by giving the committee a definition of shared living and noting that other states have shared living programs, but there is not a lot of statewide guidance for such a program. He noted that shared living has cost savings over facility and group home living arrangements.

MOTION: Ms. LaParr made a motion to amend Priority #3 and Priority #4 from the May Council meeting’s motion approving the Community Living Committee’s prioritization of the future investment concepts to:

Priority #3: Staff of the Council will have authority to draft the RFA regarding a Community Navigator and Targeted Case Management in a Managed Care Environment initiative, in an amount up to $125,000 per year with required minimum of 25% non-federal matching funds for a period of up to three years, for approval to release the RFA at the February 9, 2018 Council meeting.

Priority #4: Staff of the Council will have authority to draft the RFA regarding a Shared Living initiative, in an amount up to $50,000 per year with required minimum of 25% non-federal matching funds for a period of up to three years, for approval to release the RFA at the February 9, 2018 Council meeting.

Ms. Boeck seconded the motion. The motion was approved by unanimous vote.

Initiative Updates:

From Planning to Action: Integrated Collaborative Care for People with Intellectual and Developmental Disabilities (I/DD)

Ms. Luken talked about the learning cohorts, and she echoed what Ms. Smith said in her introduction about the chance to bring together people from cross-disability categories. She said for the Duke pilot, Ms. Zaski’s role involves resource coordination. Ms. Luken said the two pilot models will let us evaluate and see what works, and she asked the members to let her know if they know of a medical practice in North Carolina that might be interested. She said there will be some on-the-ground outreach.

The committee received a question from Council member Anna Cunningham: Please identify how self-advocates will be included in the formation and strategic plan. Ms. Luken said there are self-advocates on the advisory team, and there is a professional advocate at the Raleigh clinic. She will follow up with Ms. Cunningham. Dr. Gettinger asked about the TEACCH project and the three cohorts. Ms. Luken said each cohort will last four to six months, and then the initiative needs to make sure to move on to other cohorts.

Ms. McArthur said training is a component of having high expectations. Ms. Luken said she talked to Council member Deb Zuver, and primary care doesn’t know about post-secondary education programs like Beyond Academics. She mentioned the need to address education during the consultation, and this comes back to the topic of navigation.

The guests left for the motion.

MOTION: Ms. Smith made a motion for continuation funding to The Arc of North Carolina for the From Planning to Action: Integrated, Collaborative Care for People with Intellectual and Developmental Disabilities (I/DD) initiative. Funding is approved for up to $125,000 with a required minimum of 25% non-federal matching funds ($41,667), for Year 2 (of 3) from January 1, 2018 to December 31, 2018. Ms. LaParr seconded the motion. The motion was approved by unanimous vote.

Ms. Eaker asked if there was any further discussion. Mr. Gettinger asked, is it clear that we are thinking about the impact, and what do we want to be left with? Ms. Smith mentioned trying to integrate the model into the 1115 Waiver. Ms. Lewis said they will see what works and what doesn’t work. Ms. Smith said there will be a lot of people who need some guidance. Dr. Gettinger clarified that he was asking about the shape of how we will influence things, and can we see it operating on a large scale? Ms. Dupuch said the elephant in the room is the scale: other funding is necessary to support this.

Supported Living: Making the Difference
Mr. Smathers shared success stories of a daughter moving into a home, two people from group homes now married and living together, and a person with autism living in a home the family set up. He mentioned that not all people see the flexibility benefit, and they need to find a way to maximize the cost of service. He noted that the J. Iverson Riddle Developmental Center presentation was well received. He said the first Learning Community webinar will occur on September 15th, and Kelly Friedlander will facilitate the Learning Community. He said Year Two will focus on developing some videos to share and noted that Vaya Health is committed to this model of service.

Ms. McArthur said part of the model is spreading the word and asked if there are best practices to share with other agencies? Mr. Smathers said the focus is on the outcomes, and he mentioned POM: Personal Outcome Measures. In response to a question about whether there is there a theme or a trend preventing individuals with I/DD from transitioning, Mr. Smathers said parents are concerned for safety; however, the biggest barrier is not just with parents but with care coordinators. Ms. Lewis said Vaya is bringing this information statewide to all of the LME/MCOs.

Ms. Eaker brought up one question/comment: we’re excited to see how many people have transitioned. Mr. Smathers said supported living in North Carolina is not brand new – it’s the reintroduction of an older concept.

The guests left for the motion.

MOTION: Mr. Hildreth made a motion for continuation funding to Vaya Health for the Supported Living: Making the Difference initiative. Funding is approved for up to $100,000 ($25,000 DD Funds, $75,000 MFP/DMA Funds), with a required minimum of 25% non-federal matching funds ($33,334), for Year 2 (of 3) from January 1, 2018 to December 31, 2018. Ms. Boeck seconded the motion. The motion was approved by unanimous vote.

Ms. Eaker asked if there was any discussion. Ms. Lewis commented on how much work it takes to place the 18 individuals for this initiative.

Wrap Up and Reminders
Ms. Eaker mentioned that the members will receive an update about the easy to read version of the NCCDD by-laws, and Mr. Woodward asked the members to look at and submit any feedback on the Impact Sheet.

Mr. Hildreth asked if we can use a name stamp to sign the conflict of interest form? Ms. Eaker and Mr. Woodward said yes, that is fine.
Ms. Dupuch motioned to adjourn. The meeting was adjourned by 5:10.