Family Caregiver Council Meeting
June 1, 2009 1pm - 5pm
Meeting Notes:
Welcome
Brigitte Castellano, Vice Chair of the Council and Michael Burgess, Director of the New York State Office for the Aging, welcomed Council members, ex-officio state agency members, NYSOFA staff and guests to the meeting. Brigitte stated that Cynthia Fountain, Chair of the Council, was unable to attend due to a family emergency and conveyed Cynthia’s best wishes to all for a successful meeting.
Opening Remarks
Director Burgess spoke on the following subjects:
- NYSOFA Community Empowerment Grant - awards will be made soon
- Edward Kennedy Serve America Act (information sent via e-mail)
- Seventh Annual Kinship Care Conference in Rochester – more details to be provided later by Linda James
- Washington Innovations and Aging in Place
- Regional Caregiver Centers for Excellance – RFP will go out in the next month or two
- ACUU Conference June 2 & 3 2009 – some Council members will be attending
- Press Conference – NYSOFA hopes to hold a press conference soon to release the survey reports from NYSOFA and the Finger Lakes Geriatric Center along with the Family Caregiver Council Report. Council members will get more information when it is available.
Purpose and Goals of Meeting
Karen Iovino
Looking Back on Council Accomplishments
Karen described the work that the Council had accomplished to date that included discussing caregiver issues, contributing examples of barriers and best practices, attending Town Hall meetings, reviewing survey findings and sharing their own experiences including some personal stories contained in the Family Caregiver Council Report. Preliminary recommendations to better serve caregivers in New York State were completed between September and December 2007 and in 2008 the Council began the work of completing a report that would provide statistical information about caregivers, the voices of caregivers told through personal stories, and recommendations to Director Burgess to address caregiver issues. A work plan was developed and council members chose particular areas of interest to work on in 2009. Karen thanked the Council for all they have accomplished.
FCC Work Plan: Actions & Planning - Looking forward to the Work to be done in 2009-2010
Work begun in 2009 will include action activities and planning activities. The work plan will guide the work of the Council. Groups will form around topic areas on the work plan taken directly from the Council’s recommendations. Conference calls and e-mail will be used to develop strategies and conduct planning to address these topics. Other topics will be addressed by the entire Council.
Council Member Updates
Seventh Annual Kinship Care Conference in Rochester
Linda James - The conference was a great success. The guest speaker was Michael Burgess who was well received. Attendees appreciated his open approach and how he spoke from his heart. Caregivers presented their issues and attended workshops. Linda will alert Council when the date and place is set for the meeting in 2010.
SAGE Conference Findings Catherine Thurston - Catherine provided an overview of the October 4 2008 Annual Conference Report with a focus on LGBT caregiver issues. Over 500 people attended the conference. Copies of the report were shared at the Council meeting and also sent to Council members via e-mail.
Statewide Caregiver & Respite Coalition (SCRCNY)
Greg Olsen & Joanne Macklin
Joanne described how the initial coalition formed in 2006 and noted the history was available in the meeting packet. The information was also e-mailed to Council members. A Summit was held on May 19, 2009 and 125 people from across the state attended. Jill Kagan from the National Lifespan Respite Network presented information and led discussion on the Lifespan Respite Care Act and how to prepare to apply for 2.5 million in grants this year. This Summit was the first meeting of the newly formed SCRCNY. SCRCNY will hold a downstate summit in fall. Joanne has been meeting with groups to discuss regional coalitons across the state. The Statewide Coalition now has 200 members. SCRCNY is working with the Capital District caregiver Coalition and HVCC to write an RFP to secure money to hold a caregiver event at Hudson Valley. Joanne welcomed the support of the Family Caregiver Council and encouraged them to join the Coalition. She also encouraged Council members to provide feedback and provide suggestions to strengthen the Coalition.
Greg thanked the Council for the work they have done and noted that their recommendation for a statewide caregiver coalition helped to move the coaliton forward and sparked the current success that Joanne described. He also encouraged the Council members to join the coalition and continue to contribute ideas to enhance and grow the coalition.
Consumer-Directed Approaches
Gail Koser facilitated
Consumer Directed EISEP
Marcus Harazin
Marcus gave an overview on the the status of state funded consumer directed EISEP services. These services include non medical in home services and ancillary support. The Department of Health is consulting with NYSOFA on the regulations. In the future a consumer directed respite model recommended by the Council might be considered. NYSOFA staff will be contacting Council members interested in discussing this item from the work plan over the next months.
There was discussion of training for volunteers, so they can actually help/assist people. Concern was voiced on liability issues. Council should look at what works, e.g., Hospice, Church Groups, etc.
Nursing Home Diversion
Gail Koser
A Nursing Home Diversion Program Grant was received in September 2008. There are no eligibility requirements. We hope to reach individuals not eligible for Medicaid. The programs will begin in 3 counties (Onondaga, Oneida, Broome). Some services that may be provided through the grant might include building a ramp or clearing a driveway to provide accessability. The program has just begun and 20 people have expressed interest. There is also a VA component. The VA Medical Center in Syracuse is providing services. A second grant will go to 10 states. More information will be available and shaed with the Council over the next nine months.
Activities related to FCC Work Plan
Gail Koser - facilitated
Community Meetings
Many suggestions were given including:
- Ask caregivers to describe a system that would work for them
- Work with other state agencies to hold meetings
- Ask for participation of various advocacy groups
- Ask what works and what doesn’t – best practices
- Hold regional meetings
- Reach out to other population, American Indians, immigrants.
- Have meetings broadcast on radio
Elected Officials and Business Sector – how to get them to meetings
- Ask local non profits to assist to get elected officials to attend and attract media attention
- • Hold meetings at already planned conferences around the state
Planning related to FCC Work Plan
Jennifer Rosenbaum facilitated
Young Caregiver Survey
What do we know currently about young caregivers? Should we look at what is known first and then determine what information we need? How de we find the young caregivers?
Suggestions:
- Compile current information
- Work with organizations and schools to identify young caregivers
- Add question to Youth Risk Behavior Survey
- Contact Carol Huckley
- Use internet to reach young caregivers
- Work with Kinship Coalition
Theme – You Care For Them – We Care For You
How de we move forward with the theme that was developed last year?
Suggestions:
- Possibly use public transportation to promote – buses & trains
- Use the Kinship Coalition
- College drama departments and theatre groups
- AARP studio
- Communtiy outreach vans
- Public Radio
Comments, Questions or announcements from Council members, ex officio State Agency members and guests
Jerry Wallace – Updates on Kinship Care Coalition
Doctor Thomas Caprio – Provided information on the State Society on Aging Fall Conference that will include a Town Hall meeting with caregivers and a legislative, academic service providers panel, open forum-dialogue.
Dave Hoffman - DOH is finalizing the Alzheimer’s Coordinating Council Report. It will be available soon. He thanked the Council for their input. He also said that the first year of Caregiver information in the Behavioral Risk Survellience Survey will be avilable for analysis soon. A second year of data will be avaiable next year to begin to measure trends acoss NYS.
Joanne Macklin - In response to a question on how to become a member of SCRCNY answered that her contact information was available in the meeting packet and she would be pleased to hear from Council members. She was also asked if their was a cost to become a member. Joanne explained that there currently is no cost, but a small fee may be necessary after the NYSOFA contract ends in 2010. She is currently working to secure sources of funding to assure that the coalition will remain free or at a nominal fee for membership.
Louis Nasca - Asked if Area Agencies on Aging (AAAs) can submit a proposal to becom a RCCE? AAA Directors are aware that the RFP will be finalized soon and they will be asked to submit proposals.
Martha Schunk – provided a caregiver pamplet from OMRDD and recommended the OMRDD website for more information.
Maggie Ornstein - What does respite meant? What are you giving the caregiver? Is it respite? Lift regulatory restrictions from respite among different finding sources. Look at what caregivers want vs. what’s available. Focus on Family unit, not just caregiver.
Lois Wilson - What do you do for single older person in area? Make work force more “Dementia ready”.
Mary Ann Pula - Budget Bill law. People with up to 4 felonies of drug related, who completed a drug program would have their records sealed. Schools, nursing homes, etc. could not access records. Please advocate for Senate bill 161.68 that was introduced to repeal this.
Closing
Karen Iovino
The next in person meeting will be held in late October or early November. Council members should send dates they will be unavailable during that time to Karen via e-mail. After dates are ruled out, a date will be set and Council members will be notified. Smaller group conference calls will be held during the Summer and Fall months to move forward items on the Council Work Plan. Karen will notify Coucnil members as these calls are scheduled. Information will be shared and work will be accomplished via e-mail and conference calls during August, September and October.