NCRCC
Eastern Region
Meeting Minutes
Chocowinity, NC
11/3/09

Attendance: Catherine Smith, Albemarle Commission AAA Kim Emory, Upper Coastal Plain AAA Nikki Ward, Res care Susan Scurria, Albemarle Commission AAA Octavia Faison, Bertie County DSS Kelly Hooker, Bertie County DSS Linda Potter, Pamlico Senior Services Jane Lee, Pamlico Senior Services Mineko Holloway, Eastern Carolina Council AAA Sallie Williamson, Mid-East Commission AAA Joann Windley, Bertie County DSS Phyllis Stephenson, ESUCP and NCRCC Phyllis welcomed participants and introductions were made. Announcements: Bertie County has received a grant to educate primary care physicians on early-onset dementia. The goal is to serve patients earlier in the process and provide in-home respite. They are offering workshops and offering respite to caregivers so they may attend. They want to start a “brain café” which is a model to keep people active similar to the Brain Gem model which started with children. The Rev. James Brown in Jacksonville was mentioned as a dynamic force in this area. He has started activities in his church, Broadhurst Baptist, such as music, walking, horseback riding, gardening, etc. The group decided to ask him to speak at a coalition meeting. Kim Emory will follow-up. Twin Rivers Chapter Update: Mineko gave an update on the last meeting which was August 14. This meeting had 14 in attendance and good participation. They learned about a respite program through the military as well as other local programs. Several service agencies were represented at the meeting including DSS, hospice, and adults with disabilities. Phyllis handed out materials from the National Respite Conference so that those interested in copies can receive them. Phyllis updated the group on Lifespan Respite and the news that NC has been awarded one of the first grants. There was a webinar in which 3 states presented their coalitions; Phyllis presented for North Carolina. The NCRCC will be meeting soon with the Administration on Aging to start developing an advisory board. The main program content today was to continue the Frameworks work sessions being held in each region. The NCRCC needs to be saying the correct message to get more people to partner on the awareness of the need for respite. We need statements from each region to incorporate into a white paper and printed materials for the coalition. Phyllis reviewed the concept of Frameworks. Please refer to minutes from the Sept 1 meeting for details on Frameworks. The group divided into smaller groups to generate ideas. Review of work of eastern region: Group 1: Remain connected to overall community. R&R team. Respite= Refreshing, reward. Caregivers are family, all ages; every individual will be affected by care giving. Respecting caregiver role. Community shows respect for caregiver by support of respite programs “celebrating the role of FC”. Statement: All North Carolinians will be affected by caregiving during their lifespan, either as a caregiver or care recipient. Thus we need to provide respite to promote the effectiveness of family caregivers through outreach, support and the provision of opportunities to remain connected to the overall community. By celebrating the role of family care giving through respite, we promote emotional, social, economic, health and family stability. What are the benefits? Promotes stability, social, economic, health, (inter) family. Group 2: treasure, respite is a continuation of lifelong learning from birth through the passage of time. It provides families with dignity, growth, support and love through life’s lessons. We all treasure our quality of life and respite provides this to all. North Carolina’s prosperity depends on the health and well being of its individuals and families. Respite for families ensures that we are able to make choices that are valuable to us in our lifelong learning and is critical in building strong communities. Respite care protects that ability of our citizens. Group 3: Twin Rivers- neighbor- be a good neighbor, family, through thick and thin, community responsibility to larger family, generations, respite as investment, comforting, over-the-fence talk, familiar, down home, informal connectedness, neighbor to neighbor, promote down home tradition. Don’t use professional terms, familiar, neighborly expression. RESPITE: refresh, energize, supply, provide, involved, time, enjoyment. Statement: Stepping in to help a neighbor is what we do here in North Carolina. Working together assures people are treated with dignity and cared for with love and respect. Sometimes an extra pair of hands to help out now and then is all it takes to regain balance and keep families together at home. Bringing back the wisdom of past generations and lending that helping hand is what respite care through the life span is all about. Looking out for one another is what North Carolinians are all about. In conclusion, many good ideas were generated which will now be taken to the group in the west for incorporation into our final message for the NCRCC. The next meeting of the eastern region will be Feb. 18, 2010 in Jacksonville, NC. Submitted by: Jane MacLeod NCRCC Program Coordinator

NCRCC
Eastern Region
Twin Rivers Local Chapter meeting
New Bern, NC
8/14/09

ATTENDEES: Kelly Hooker Jane Lee Hilda Straughn Carol Long Phyllis Stephenson, NCRCC Director Jean Kenefick Leah Boock Amy Bryant Alicia Bell Alex Shreve Bridgett Bonner Lisa Woolard Mineko Holloway Leslie Kellenberger WELCOME AND INTRODUCTIONS Mineko Holloway opened the meeting at 10:10 a.m. with a welcome and request that attendees introduce themselves and give a brief summary of respite services their agency provides. Those present were also asked to complete a respite program form as well to be submitted to the statewide NCRCC. ? Bridgett Bonner of Two Rivers- Trent campus (an adult assisted living facility) reported they offer respite stays of 5 days or more in addition to their residential and rehabilitation client services. ? Amy Bryant of Easter SealsUCP shared her new role of Early Childhood Outreach Program Manager, with various services for children 0-3 years of age. ? Hilda Straughn and Carol Long shared information on Onslow Senior Services’ respite services including adult day program, in-home health for older adults, and newly added respite for families receiving hospice care. ? Jane Lee and Kelly Hooker of Pamlico Senior Services reported in-home health and senior companion program as forms of respite available through their agency for caregivers of older adults. ? Alex Shreve of Onlsow Child Care Resource and Referral shared two programs they are offering through contract with military bases, Camp Lejeune, Cherry Point and New River. Both programs are made available through NACCRR & the Department of Defense. They are the Exceptional Family Member Program (offering 40 hours or respite care to military parents per month) and the Deployed Family Member Respite (providing 16 hours of respite care to children of deployed parents per month.) ? Leah Boock of Marine Corps Community Services, Cherry Point reported her role in the Exceptional Family Member Program as including pre-qualification of families for referral to respite providers. They have begun offering installation respite care in which the family can choose a care provider to suit their unique needs. Recently this has grown to include respite care for adults (18 +years of age.) Older adults can be served under this program if they are co-resident, dependents of the active duty member. ? Alicia Bell of ESUCP shared some of their respite services to children including some of the respite under NACCRRA. ? Lisa Woolard of the Beaufort Partnership for Children expressed a need in her county for more respite opportunities for isolated families with children. ? Jody Riddle of the Upper Coastal Plain Area Agency on Aging shared some of the respite available under their Family Caregiver Support Program including a grandparent event providing respite to older adults raising children. She explained planned activities for the grandparent caregivers and their grandchildren including alternate options for pairs with adolescent grandchildren that were more age appropriate (such as movie theater tickets). GUEST SPEAKERS Leslie Kellenberger of the Children and Family Services Association of NC distributed information folders and reviewed association activity. Legislative advocacy for children’s services is an area of much activity for CFSA. They also create workgroups to fill gaps in services. Phyllis Stephenson and Jean Kenefick of Easter Seals UCP attested to the dedication and drive of CFSA staff to proactively share information with members and to intervene with intended legislation that would have a negative impact on children in NC. Phyllis Stephenson, NCRCC Director provided a review of recent coalition activity in the Western, Central and Eastern parts of the state. She provided information on the Frameworks Training on September 1, 2009 to create a message for the coalition to deliver uniformly across the state. Options for attendance were discussed for anyone wanting to participate. Eastern representatives are to bring back the products of this meeting to share at the September 14, 2009 meeting in Washington, NC. Phyllis reported status of a request for October 30, 2009 to be proclaimed a Day of Respite for the state as still under consideration. If approved, the coalition will plan an event in each of the western, central and eastern regions on this Day of Respite for awareness and advocacy. This activity in place of a one day conference (held in previous years) was discussed to provide relief to coalition members from the demands of planning such an event while still remaining active. The next one day respite conference will be held in 2010. Recent submission of an application for Lifespan Respite funding was shared with an anticipated response in September. Review of the application included the role of the Division of Aging and Adult Services and the stress on advocacy and use of funds to utilize qualified providers already in place in our state. The meeting was closed at 11:30 a.m. by Phyllis and everyone was thanked for their time and participation.

Eastern Region
Summer Meeting
Spring Arbor Assisted Living
Kill Devil Hills, NC
6/8/09

Attendance: Joann Windly- Beaufort Co. DSS Sallie Williamson- AAA Mineko Holloway- AAA Rosalind Anglin- Eastern Carolina Council AAA Bev Myers- GEM Day Services Gail Sonnesso- GEM Adult Day Services Angelo Sonnesso- GEM Adult Day Services, NC Division of Services for the Blind Rita Carson- caregiver Sandy Scarborough- Dare County Older Adult Services Karen Henderson- Spring Arbor Linda Fisher- Spring Arbor Gus Smith- Wesley Hospitality House Kaye White- Nursing Home CA Bd. Dare Co. Leslie Kellenberger- Child and Family Services Association Phyllis Stephenson, Easter Seals UCP and NC Respite Care Coalition Jane MacLeod- Easter Seals UCP and NC Respite Care Coalition Welcome and introductions were given. Presentation: Gus Smith from Wesley Hospitality House presented his program, which is a facility that provides care for people who have come to Elizabeth City for medical treatment. There are 187 hospitality houses in the United States. Typical people who stay there are families of those receiving treatment or sometimes patients who live elsewhere and come there for daily treatments and need a place to stay. Referrals frequently come from the hospital departments and from physicians. The facility has 13 bedrooms and has a homelike atmosphere. Meals are provided and the facility is staffed with volunteers. There are three staff members. Last year Wesley House served people from 28 counties and from 18 different states. Volunteers are recruited through local service agencies and churches. Wesley House receives no public funds and operates entirely on donations and grants. Due to financial changes, decreased donations and more medical facilities in the beach areas, needs have changed and new uses are needed for Wesley House. The facility has been used as a sleep center for sleep studies; however this program may be returned to the hospital. Wesley House is researching all possibilities to see if perhaps the facility can be used as a hospice house or other program. Discussion ensued regarding where respite fits in with end of life care. What does a caregiver need to be able to continue caring for a loved one? The point was made that caregivers frequently need shorter periods of respite (more in term of hours than days) and the definition of respite can include having meals delivered and transportation provided. The suggestion was made that the hospitality house can support the caregiver in what they need. It was also noted that the End of Life Coalition has worked on many of these issues and has worked with physicians to recognize the needs for referrals. It was pointed out that there is a need to reach out across the lifespan for all ages dealing with chronic and long-term illnesses whose caregivers need respite. There is also the very real issue of an aging population of caregivers being responsible for an aging population. This is an area the NCRCC will need to consider as we look at how respite fits in. Child and Family Services Association- Leslie Kellenberger Leslie presented a brief overview of the association to educate coalition attendees about the association, which is made up of providers of the full spectrum of children’s services. Child and Family Services does much training and legislative work to advance their goal of being sure that children are provided with the best services to meet their needs. They would like to have more membership in the eastern part of the state. Suggestions for potential members from the group were: Children and Youth Partnership, teen court, Project Rebound, Tedi Bear Children’s Advocacy Center in Greenville. Mineko Holloway- report on local chapter start-up Mineko reported on the first meeting of the Twin Rivers chapter of the NCRCC on June 3. She reported that 20 people attended this meeting held in New Bern with representation from faith-based agencies, caregivers, Child and Family Service Network, CDSA, DSS, contracted agencies and private services. For the first meeting Mineko talked about lifespan respite, membership information and conducted an activity to acquaint attendees with respite. This was a successful start for this chapter with diverse representation. Gail Sonnesso- report on Outer Banks local chapter Gail stated that shortly after this chapter held its first meeting, the leadership needed to withdraw from that position, so the chapter lost momentum; however, it is starting to become more active again. This chapter requests “press ready” announcements of upcoming events and information related to the coalition so they can be sent to the local newspaper. Gail stated that at the State of the Older Adult forum in March, the top needs identified were group and individual respite. There is a need for a resource guide and one consistent 800 number for seniors to call for respite. Updates from western region: The western region had a good meeting in May with a presentation on respite through Caring For Children at Land of Sky in Asheville. This region has decided to stay with one location for a while to draw in attendees to this central location. The next meeting in the west is September 1 at which time the NCRCC will have a training session with Frameworks, Inc. This is a company that helps organizations to reframe their message so that the community becomes more involved in promoting respite. Michelle Hughes from Frameworks will help the NCRCC to craft our message which then can be used for our “white paper” or summary of the NCRCC which was discussed at the Nov 10, 2008 Paving the Way meeting. The NCRCC is fortunate to have an opportunity to provide this excellent training. Each region is asked to send at least two representatives to the September meeting and then be committed to take the information back to the local chapters. This concept fits right in with the NCRCC goals for 2009 of articulating a clear message to the community. The central region meeting was held June 1 in Greensboro and had an excellent presentation on Beyond Academics, a pilot program for adults with disabilities associated with UNC-G. The next central meeting is September 29 at the Children’s Home in Winston-Salem (postponed from the spring). Funding and other updates: Everyone is concerned and watching the state budget sessions to learn how programs will be impacted by the new budget. Respite dollars are shrinking. The Department of Medical Assistance is working on expanding the definition of respite under Medicaid. CAP slots are frozen at this time. Special assistance for assisted living is being cut and no Medicaid dollars for hospice care are allocated at this point. Many small providers are challenged in this economy. The National Respite Conference this year is in California September 24-25. The Lifespan Respite Care Act did get some money allocated. ($200,000 over 36 months) Ten to fifteen grants will be awarded. The NCRCC has a meeting on June 10 to begin the process of considering the application with the Division of Aging. Alicia Blater is the representative from Aging. The sign-on letter to request additional funding received 14 agencies’ signatures. We are still collecting names for re-submittal until 6/12/09. Respite Day Proclamation: we are moving forward with establishing a date in the fall to have respite events take place in each region and having the day declared by the governor as Respite Proclamation Day. Please forward to Jane MacLeod dates that would and would not work in September, October and November. October 30 has been suggested. Next meeting for this region: September 14, 2009 in Washington, NC. Sallie Williamson will find a location and program. Submitted by: Jane MacLeod NCRCC Program Coordinator

Eastern Region
Pitt Co. Council on Aging
Greenville, NC
3/24/09

Attendance: Olive Hollinger, TEACCH- Wilmington Tonya Cedars- Eastern Region AAA Sallie Williamson-Mideast Region AAA Crystal Curran- Pitt Co. Council on Aging Gail Sonnesso- NC Services for the Blind, GEM Day Services Angelo Sonnesso- GEM Day Services Mineko Holloway- Eastern Region AAA Andrea Smith- RHA Howell, START Jennifer Thompson, MS Society Irma Robbins- Bertie Co. Council on Aging Jeanne Windley- Beaufort Co. DSS Phyllis Stephenson- ESUCP, NCRCC Jane MacLeod- ESUCP, NCRCC Phyllis welcomed all participants and introductions were made. Crystal Curran gave an overview of the programs at Pitt Co. COA and then talked some about using trained volunteers to provide respite to relieve regular caregivers. Her agency partners with the Brody School of Medicine (Caregivers/House Calls) and uses medical students to provide some respite. This has been educational for all concerned and has helped the medical students to become aware of the importance of “bedside manner.” This program currently has a waiting list of 29 people. They are serving about 40 people. This program began as the Interfaith Caregivers Coalition and was extended to include medical students. Phyllis suggested they might want to do some outcome respite studies with the university and then share this information with others in order to replicate the program. Other introductions: Joanne Windley- Bertie Co. DSS- provides in-home respite. Sallie Williamson- Mideast AAA Washington, NC. They provide a tutorial respite program, Project Care, veterans program. Discussion followed of veterans benefits through ADDUS. Tonya Cedars-Eastern Region AAA. Tonya stated it would be helpful to see the respite definition expanded to include delivered meals and other services that assist caregivers. Olive Hollinger- TEACCH in Onslow Co. This agency provides services to those with autism. They are seeing all ages of people with autism now and have had of adults. The face of autism has changed and includes many high functioning people with Asberger’s Syndrome. Olive said her agency is seeing children younger than previously as well as more adults. Providers of respite need specialized knowledge to provide care. Irma Robbins- Bertie Co. DSS Aging Services Coordinator. Her program provides respite and can provide an in-home aide. There is funding available for 8 hours a week. They have many requests to provide respite in institutional facilities. (they use the Bryan Center) Project Care funding is able to be used in some cases. They have about six people on their waiting list and are budgeted to serve 10. Angelo Sonnesso- GEM Day services and NC Services for the Blind Gail Sonnesso- GEM Day Services : The GEM program has been funded by the county commissioners of Dare Co for the last 2 years. They currently have a census of 6 in their program. There are many challenges in providing care for people with dementia. Jennifer Thompson: MS Society. This agency serves the counties west of Raleigh and provides short-term respite (48 hours). They use a sliding fee scale. They do not always use all their allotted dollars so are looking for referrals, preferably people with no other funding source. The MS Society has 54 offices nationwide; in NC, a central office in Raleigh and one in Charlotte. Mineko Holloway: Eastern Region AAA. This agency uses family caregiver funds for respite. A goal is to use the person’s regular plan of care and use respite to supplement this. Presentation: Andrea Smith- RHA Howell. Andrea is the director of respite services for the START model. This is a new program and serves the DD population who also have behavioral challenges (18 years old and up). They can serve person with traumatic brain injury if the diagnosis was prior to age 18 and the resulting IQ is below 70. North Carolina is the only state doing this program in three different areas. The purpose of the respite is to divert these people from inpatient hospitalization. START can provide 72 hours or up to 14 days of respite with a highly trained staff which can possibly avert inappropriate hospitalization or trips to the emergency department where they are assessed inappropriately. START has 13 trained staff. They can serve 180 people. Their facility has 2 beds for planned respite and 2 beds for crisis respite. Most of the people served are in the mild to moderate MR range. They may be living on their own or with their family. START is using CAP documentation and hope to become CAP accredited. Currently the START Program is funded by state dollars. Local Updates: The next meeting of the eastern region will be June 8 at the Outer Banks at the Wesley Hospitality House. The speaker will be Gus Smith discussing hospice as respite. NCRCC updates: Committees formed at the November meeting will need to meet before the next quarter. Membership committee: Dawn Gartman, Jody Riddle, Dottie Lyvers, Traci Beal, Mineko Holloway and Jane MacLeod Developing a uniform message for the NCRCC using these methods: Powerpoint presentation, white paper, tag line for the coalition. Volunteers are: Tamisha Evans, Dottie Lyvers, Jody Riddle, Traci Beal, Dawn Gartman and Bill Donohue. Statewide Respite Proclamation Day to highlight the needs for respite: Chris Gentry, Jean Kenefick, Tonya Cedars, Bill Donohue and Phyllis Stephenson Note from Jane MacLeod: Please be aware that these committees were formed in November and due to various reasons have not been able to meet to advance these projects. I will be contacting all volunteers to see where we are with committee conference calls and to clarify who is interested in helping with each project. Additional volunteers are always welcome. Mineko Holloway would like to start a local chapter in her area in order to network more closely with area participants. She will schedule a meeting in the New Bern area in early June. Other NCRCC regions are growing and prospering as well. The western region has excellent participation in quarterly meetings. The central region has a June meeting scheduled to learn about a program in Greensboro for DD students at UNC-G. Statewide updates: Due to economic conditions statewide, there has been a decrease in IPRS (local dollars for distribution for respite) and CAP dollars are frozen. All agencies are looking at expenditures closely and considering how to provide services with fewer dollars. Nationally, $2.5 million was passed for lifespan respite and signed into law. Now is the time to contact representatives and thank them for their support as well as ask for additional support in seeking more funding for respite care. Submitted by: Jane MacLeod NCRCC Program Coordinator