Community Living Committee
DRAFT MINUTES
Thursday, May 11, 2017
3:00 p.m. to 5:00 p.m.
Hilton Garden Inn, Cary, NC

Members Present: Kerri Eaker, Caroline Bradstock, Lisa Byrd, Mya Lewis, Christina Dupuch, Joshua Gettinger, Michael Groves, Desiree Peterson, I. Azell Reeves

Members Absent: Peggy Terhune, Sandra Terrell, Wing Ng, Vicki Smith

Staff in Attendance: Philip Woodward

Guests: Steve Strom, Karen Luken, Paula Coppola, Linda Kendall-Fields, Kate Walton, Greta Herring, Elizabeth Kahn (audio describer), Caryn Cook (ASL interpreter), Natalie Davis (ASL interpreter), Ted Katroscik (here with Lisa Byrd)

Introduction:

Welcome: Ms. Eaker welcomed the members and asked them to introduce themselves and share a story about their mothers for Mother’s Day coming up. Steve Strom is now the Money Follows the Person (MFP) Project Director.

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

MOTION: Dr. Gettinger made the motion to approve the minutes as read, and Mr. Groves seconded the motion. The motion was approved.
Future Investments Discussion

The group considered developing a system of priority if NCCDD cannot fund all four. Mr. Strom incorporated feedback from Ms. Terhune and Ms. Smith into the one-pagers.

I Get Around – Improving Transportation Options
Ms. Reeves asked if we have an individual from NCCDD serving on the NC Transportation Board. Mr. Strom said no, but the Department of Transportation (DOT) welcomes feedback from the listening sessions. He said NC Partners in Policymaking should push for member inclusion. Dr. Gettinger suggested pushing this to the Advocacy Development Committee, which Mr. Strom said would need to change the scope of this proposal since he did not take an advocacy direction with the research. Dr. Gettinger mentioned the challenges in rural areas. Ms. Reeves proposed ultimately having someone serve on the board. Ms. Eaker asked if we should add this to the proposal or see if the other committee will take it on. Mr. Strom suggested keeping the initiative in Community Living but also develop outside partnerships. Ms. Goda asked about DOT listening sessions happening now. Mr. Woodward sent the link out, and he will re-send it.

Community Guide and Targeted Case Management in a Managed Care Environment
Mr. Strom explained the recommendations from the Adult Care Homes initiative and that the system will become more complex. Ms. Dupuch said where people (who are navigating the services system) get their information is a sensitive issue. Ms. Eaker said the community guide is another service – a person and a service. Ms. Dupuch said filling the gap on the ground level is limited. Ms. Goda agrees regarding the care coordination definition, and she added that (B)(3) services mean individuals with I/DD can use services if they are not on the waiver. She also said the community guide is an advocate, but the federal definition says nothing about advocacy; therefore, people think the care coordinators are not doing their jobs if they’re not advocating.

Ms. Eaker acknowledged that families have a hard time getting the services they need, and she mentioned the difficulty accessing job services in Buncombe County. Ms. Goda said community guides cross over with community development. Dr. Gettinger said it’s hard to keep track of different services. Ms. Reeves mentioned needing to navigate a complex system. Dr. Gettinger said the community guide becomes a navigator. Ms. Reeves mentioned a navigator for every one person, and families are struggling. She asked if the committee focused on what Ms. Smith talked about regarding adult care homes. Mr. Strom said this concept needs work, and Ms. Smith and Disability Rights North Carolina can provide more perspective. The committee agreed to change “Guide” to “Navigator.”

Using Natural Supports to Build Greater Community Engagement
Dr. Gettinger said we need to transition away from thinking of a disability community where the agency provides services. Mr. Strom mentioned Ms. Terhune’s comments and the need for evidence-based research. Ms. Reeves mentioned services for transition in college and how amazing and developed university and college-level programs are. Ms. Eaker said this is a big priority.

Shared Living
Ms. Eaker mentioned shared living pockets in the state and what Asheville is trying to do. Mr. Strom mentioned a Pennsylvania model of having a roommate with a disability and Transitions to Community Living (TCLI); he said Pennsylvania has shared living as a Medicaid waiver. Ms. Goda mentioned Alternate Family Living (AFL) as an option. Ms. Lewis asked if there is a website for people with disabilities needing a roommate – like a match service. Mr. Strom said Pennsylvania has this.

Ms. Eaker mentioned the need to prioritize the initiative concepts and asked each member to rank each initiative 1, 2, 3, 4 on the one-pager. Mr. Strom volunteered to count ballots. The voting numbers were:
I Get Around and Natural Supports received four (4) votes each as priority #1, so another vote was held to break the tie. The results were:
I Get Around: priority #1
Natural Supports: priority #2
Community Guide and Targeted Case Management: priority #3
Shared Living: priority #4

Mr. Strom said Mr. Woodward will contact the members for help reviewing each RFA.

The Community Living Committee voted to prioritize the future investment concepts in this order:

MOTION:
Priority #1: Staff of the Council will have authority to draft the RFA regarding an 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 a period of up to three years, for approval to release the RFA at the August 11, 2017 Council meeting.

Priority #2: Staff of the Council will have authority to draft the RFA regarding a 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 a period of up to three years, for approval to release the RFA at the August 11, 2017 Council meeting.

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 August 11, 2017 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 August 11, 2017 Council meeting.

Ms. Bradstock made the motion, and Ms. Byrd seconded the motion. The motion was approved by unanimous vote.

Notes:

• For the I Get Around – Improving Transportation Options concept, the RFA must include adding a Council member to the state Department of Transportation (DOT) Board.
• The committee changed the name of priority #3 from Community Guide and Targeted Case Management in a Managed Care Environment to Community Navigator and Targeted Case Management in a Managed Care Environment.

Initiative Updates:

From Planning to Action: Integrated Collaborative Care for People with Intellectual and Developmental Disabilities
Karen Luken of The Arc of North Carolina provided an update with a PowerPoint presentation focusing on the first quarter activities and connecting the initiative activities to comments made by DHHS Secretary Mandy Cohen, MD, and comments made during the Public Policy update. Two consultation proposals were selected; meanwhile, the navigation proposal did not score high enough for the initiative to fund a navigation pilot. The University of North Carolina’s Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) program and Duke were selected for the consultation pilots, and TEACCH hired a nurse practitioner, a first for TEACCH. NCCDD will do a story on the upcoming workshop.

Rethinking Guardianship: Building a Case for Less Restrictive Alternatives
Linda Kendall-Fields provided a Rethinking Guardianship update. She will speak in the plenary session at the National Association of Councils on Developmental Disabilities (NACDD) Conference this summer – one of four speakers.

Ms. Kendall-Fields said Year One focused on rushed gathering of information, and Year Two focused on action to produce outcomes. Year Three has focused on expanding collaboration with the Administrative Office of the Courts (AOC) through a training video, meeting space, and developing a registration form. Year Three is also focusing on developing a Guardianship Bill of Rights that will assist in achieving comprehensive reform in 2019. She said the initiative will continue to collect stories of people influenced by guardianship. She mentioned the youth transition work being done in Catawba County with the Department of Public Instruction (DPI) that involved bringing a lot of momentum for youth transitions to adulthood. As part of the initiative’s sustainability, there is a meeting next week to get stakeholders on board with the Guardianship Bill of Rights.

Dr. Gettinger asked about a possible statutory change at some point after the Guardianship Bill of Rights is drafted. Ms. Eaker said appropriate education regarding guardianship is important.

Emergency Preparedness for People with I/DD or Access and Functional Needs
Greta Herring from North Carolina Emergency Management (NCEM) provided an update on the initiative and brought a sample of the “I’m Ready” bags with initiative materials inside. She provided a Hurricane Matthew update about working with disability partners and the Federal Emergency Management Agency (FEMA). She said NC ADA Network Coordinator Karen Hamilton has been very helpful. Ms. Herring announced that “I’m Ready” is live: www.imready.info. This curriculum was developed by Denise Monkovich and Samantha Royster, and it features pictures that represent people with I/DD accurately. She also mentioned the “Save the Date” flyer for the grant wrap-up event on August 23rd.

Ms. Eaker provided a brief update on the Supported Living: Making the Difference initiative NCCDD has with contractor Vaya Health.
The meeting was adjourned at by Ms. Eaker at 5:05.