Town Hall Meetings: Overview and Summary
Planned by NYSOFA and sponsored by the Family Caregiver Council, eight Town Hall Meetings were held in 2008 and 2009. The purpose of the Town Hall Meetings is to hear directly from caregivers across the lifespan.
A panel consisting of Family Caregiver Council members, NYSOFA executive staff, and local Area Agencies on Aging Directors received comments and heard stories from caregivers about their experiences and ways in which they could be supported. The meetings were held at the following locations:
- Rensselaer County - February 8, 2008
- Washington County - April 23, 2008
- Dutchess County - April 24, 2008
- Somos El Futuro Conference - Albany - April 25, 2008
- Statewide LGBT Health and Human Services Network - Albany - April 28, 2008
- Suffolk County - May 23, 2008
- St. Lawrence County - June 13, 2008
- Orange County - November 9, 2009
The meetings were structured to encourage people to participate and testify about:
- What are the most critical needs you face as someone who provides care to a family member or other individual in the community?
- What assistance and supports are most critical to you, your family, and other informal caregivers who are assisting loved ones with everyday tasks in their homes and communities?
- What barriers do you face as a family caregiver? What makes it hard for you to provide care?
- What innovations are needed to support caregivers?
- Are there "best practices" that can be shared with others?
The testimony from speakers at each meeting was compelling and a valuable resource to the Family Caregiver Council as they began to draft recommendations for 2008-09. Input from caregivers at the Town Hall Meetings framed the many challenges and rewards of providing care to a loved one and also included information to help develop future policies about services that help and support caregivers, systemic long-term care issues, and suggestions to strengthen and support caregivers in New York State. Samples of stories shared by caregivers at Town Hall Meetings were included earlier in this Report.
Themes and Issues Raised by Speakers
Why Caregivers Need Help
Caregivers identified the many rewards of providing care to loved ones or family members, and also identified some of the challenges they face, including a sense of isolation, stress, and frustration related to competing demands; not knowing where to turn for help, guilt about not being able to do enough to support the care recipient, and the emotional toll of dealing with end- of-life issues. Specific challenges raised by caregivers included:
- The stress of caregiving presents itself physically, emotionally, and financially. Caregivers expressed concerns about their own physical and mental health.
- Concerns were expressed about the loss of income or diminishing resources related to the high cost of care.
- Older caregivers of mentally ill or developmentally disabled older children expressed concerns about limited options for ongoing and future care for their children.
- Gay, lesbian, bisexual, and transgender populations reported the same experiences and challenges of other caregivers, but also indicated their caregiving was complicated and compounded by the complexities of discrimination, injustice, legal issues, and lack of knowledge and understanding.
- Grandparents and kinship caregivers reported dealing with many legal issues surrounding the care of a child.
- Hispanic caregivers reported the need to address cultural issues surrounding caregiving.
Services That Help and Support Caregivers
During the Town Hall Meetings, caregivers clearly articulated those supports and services that help them to continue in their caregiving role. When available, these services help caregivers to reduce stress and isolation, to understand that they are not alone in their experiences, to realize that they are assuming a valuable role, and that they, too, deserve support. These services should be tailored for particular populations including but not limited to grandparents caring for grandchildren, caregivers of Alzheimer's patients, and caregivers of individuals with early stages to more severe stages of dementia. The services that were mentioned numerous times by caregivers include the following:
Direct Caregiver Support
- Caregiver support groups to reduce stress and isolation of caregiving.
- Caregiver support groups for caregivers with similar circumstances.
- Training for caregivers to improve skills and increase capacity to care for others.
- Caregiver counseling and family mediation to bring the family together to discuss issues and roles of decision making.
- Respite services that provide a break to caregivers and emergency respite services.
- Respite services that include meaningful activities for the care receiver.
- Consumer directed respite care programs.
- Social adult day care and adult day health care that provide respite for caregivers and also provide valuable support to the care recipient.
Home and Community Based Services
- Information and assistance for all caregivers, including long distance caregivers.
- Mediation services for families who must come to an agreement on caring for a loved one.
- Legal assistance to complete documents, e.g. Advance Medical Directives, Adult Guardianship.
- Transportation - especially in rural areas.
- Financial planning for caregivers.
- Financial support to working caregivers who reduce their work schedule to care for their loved ones.
Systemic Long Term Care Issues
Caregivers also identified systemic long-term care issues that need to be resolved in order to make their caregiver role easier. These issues, not necessarily related to direct support to caregivers, include availability of a professional workforce, transitions among programs and services, and availability of housing options. Additional issues that were raised include:
- Workforce issues and the need for more qualified workers, including aides.
- Low pay of home and facility-based workers.
- Aging out of programs and impact on the family.
- Lack of availability of services for middle income families in need of assistance.
- More research dollars needed for medication trials.
- Educate the medical community about geriatric medicine.
- Availability of affordable housing.
- Lack or denial of Long Term Care Insurance for individuals with post-traumatic stress.
Suggestions to Strengthen and Support Caregivers in New York State
Based on many collective years of caregiving, Town Hall presenters (both providers and caregivers) were able to articulate a variety of suggestions to strengthen and support caregivers. The suggestions focused on increasing caregivers’ knowledge of services and their own role as a caregiver, ways to better support caregivers financially, strategies to increase the workforce to better support caregivers, the connection between caregiver issues and other major initiatives, and program enhancements to existing services.
- Create more public awareness of caregiver services.
- Increase recognition and self identification of oneself as a caregiver.
- Develop a consumer education campaign on Alzheimer’s disease and other dementias to educate consumers that these dementias are not part of the normal aging process.
- Education for family and friends to better understand Alzheimer’s Disease and other dementias so that they will better support the caregiver.
- Promote awareness of laws that ensure residence and family councils in institutions.
- Develop a funding mechanism for long term care similar to unemployment insurance where funds are set aside over one's lifetime. This would be helpful for individuals who cannot afford long term care insurance.
- Tap into the pool of retired professionals, either paid or volunteer, to share their expertise to provide respite, training, financial counseling, and other support services.
- Use non-traditional approaches to reaching out to volunteers and caregivers in places such as Starbucks, WalMart cafeterias, bowling alleys, Off-Track Betting locations, bookstores, rod and gun clubs - many of which can help programs to reach male caregivers.
- Ensure coordination between various local community initiatives and caregiver support services.
- Create collaborations between the aging network and the health care system.
- Ensure programs assess the needs of the caregiver, family and the care-receiver and are responsiveness to changing population dynamics, including ethnic, language and cultural differences. One suggested approach was adoption of the hospice model, which assesses the entire family's needs and provides supports to the family as a whole.
- Enhance central repositories of services or somewhere to find services (e.g., Caregiver Centers for Excellence, and NY Connects, etc.).
- Provide greater assistance for grandparent/relatives caring for children, who struggle with finances.
- Increase (double) the child only grants for grandparents caring for grandchildren.
- Provide tuition assistance to young adults going to college while acting as a caregiver and to grandchildren being raised by grandparents.
- Address and recognize mental health needs in caregiver programs.
- Change Mental Hygiene Law Article 81 regarding guardianship.
- Expand grief counseling and support.
- Provide insurance for volunteers who transport clients.
- Expand housing options such as home sharing.
- Recognize the unique needs of caregivers caring for grandchildren and a spouse or parent simultaneously and link them to existing services and programs that can support their needs.