Working to ensure that all caregivers receive the respite and support they need.


            Thank you to our Premier and Platinum Sponsors!

           Health Foundation for Western and Central New York

                            Ralph C. Wilson Jr. Foundation

Conference Updates
Keynote Announcements!

 Andy Goodman - The Goodman Center

Andy Goodman is co-founder and director of The Goodman Center, which teaches communications and marketing professionals how to reach more people with more impact. Andy is internationally known for his speeches and workshops on storytelling and has led over 500 trainings for clients including CARE, The Nature Conservancy, Boys and Girls Clubs of America, MIT, Princeton, the Bill and Melinda Gates Foundation, the Robert Wood Johnson Foundation, Bank of America, and many others. He has designed communications curriculum for the College for Social Innovation in Boston as well as for the African Leadership University in Mauritius. He is the author of Storytelling as Best Practice and Why Bad Presentations Happen to Good Causes.

"Storytelling as Best Practice" 
Since we first began talking to each other, telling stories has been a powerful way to capture attention, engage an audience, and motivate them to act. As we learn more about how our minds work, we're also discovering that stories are intrinsic to decision-making, shape our view of the world, and affect our daily decisions. In his plenary address, "Storytelling as Best Practice," Andy Goodman will explain why storytelling remains the single most powerful communication tool you possess, and he will offer specific ways your organization can use stories to advance your mission.

Lori Gerhard, Acting Director
Center for Integrated Programs
Administration for Community Living
U.S. Department of Health and Human Services
Washington, D.C.
As Acting Director for the Center for Integrated Programs, Ms. Gerhard oversees ACL's administration of programs and initiatives that serve both older adults and people with disabilities, as well as their families and caregivers. Programs include consumer access and protection and initiatives that promote the use of self-directed and person-centered service models. READ MORE
Building a New Conversation About Caregiving
Health Affairs Blog 
Ken Genewick, Health Foundation of Western and Central New York - January 31, 2019

For family caregivers who feel overwhelmed by their responsibilities, respite care provides a desperately needed opportunity to recharge and take care of their own physical and mental health. Respite services represent a true win-win, benefitting the health and well-being of both caregivers and the older loved ones for whom they care.

In New York State, there are 2.6 million unpaid caregivers providing 2.4 billion hours of care to family members and friends, according to a recent AARP New York report. But there aren't enough respite programs to meet the needs of caregivers, and that's especially true in much of upstate New York.

In October 2018, the Health Foundation for Western and Central New York brought together about sixty of our central New York community partners that play a role in providing and paying for services for family caregivers for an event we called "Connecting to Caregivers."  READ MORE

Caregiver Research

Seeking 80 caregivers who are using respite services and who reside in the following counties: Allegany, Cattaraugus, Cayuga, Chautauqua, Cortland, Erie, Genesee, Herkimer, Madison, Niagara, Orleans, Oneida, Onondaga, Oswego, Tompkins and Wyoming.
The Health Foundation for Western and Central New York has awarded researchers from the University of Georgia, the University of North Carolina at Chapel Hill, and the University of Rochester a grant to collaborate on a research study to better understand caregivers' experiences with respite.

GRAND Resource: Help for Grandfamilies Impacted by Opioids and Other Substance Use
Generations United, 2019
In 2016, more than 1/3 of children removed from their homes due to parental substance use moved in with grandparents or other family members. This resource offers information and tips to help grandfamilies affected by substance use both inside and out of the foster care system. It lists additional resources on five topics: Practicing Self-Care; Addressing Childhood Trauma; Preventing Harmful Drug Use by Children; Engaging with Birth Parents; and Talking with a Child about their Birth Parent. Access the report .

The Caring Company: How Employers Can Help Employees Manage Their Caregiving
Responsibilities While Reducing Costs and Increasing Productivity
Joe Fuller and Manjari Raman, Harvard Business School, January 2019
The authors examined how people providing care to family members or friends fare professionally, are affected at work, and what are the shortcomings and future implications for employers who do not support caregivers. Companies are facing a caregiving crisis but refuse to acknowledge it. Increased health care and caregiving costs, and changing demographics are pressuring American employees striving to balance work and caregiving. Many employers are unaware of the growing costs of this hidden "care economy". The survey results show the importance and urgency of this issue. Practical solutions for employers to support their employees who provide caregiving are offered in the report. Access the extensive media coverage and read the report.

Text-Based Caregiver Support Initiative Launched Survey for Hispanic Families.
Text4Caregivers, a new project from Parent to Parent of NYS with funding from the Developmental Disabilities Planning Council, will provide supportive and informative messaging to family caregivers.
In order to help design Text4Caregiers, and reach Hispanic families with special needs children, a survey has been created in Spanish. If you are a Spanish speaking family, or work with Spanish speaking families please take the survey or share it with families you serve. Survey will remain open through Friday
February 18th

Mensajes para Cuidadores es un nuevo projecto del Programa de Padre a Padre del estado de Nueva York, financiado por el Concejo de Planeamiento de Discapacidades en el Desarrollo (DDPC en sus siglas en ingles).  Este nuevo projecto proveerá mensajes informativos y de soport al cuidador de una persona con necesidades especiales.
Pare poder ayudarnos a diseñar este projecto de Mensajes para Cuidadores y poder contactar el mayor número de familias hispanas con hijas o hijos con necesidades especiales, nosotros hemos creado una encuesta en español.
Si usted es un miembro de familia que habla español o trabaja con familias que hablan español; nosotros le agradeceremos si usted responde el cuestionario y/o lo comparte con las familias con las que usted trabaja.
El cuestionario, el cual puede encontarse en el siguiente link, estará disponible hasta el Viernes 18 de febrero.
Nuevamente, por favor permita me recordarle que este cuestionario esta diseñado solo para familias hispanas.


The Consortium for Citizens with Disabilities (CCD) is working with Senator Schumer (D-NY) and Representative Sensenbrenner (R-WI) to push for the passage of the  Disability Integration Act of 2017 into law prior to 07/26/2019.

If signed into law, the bill would prohibit states and local governments from denying community-based services to individuals with disabilities who are in need of long-term services and supports or health-related tasks. In addition, it would help these individuals to live and age in their communities, reducing the danger of placing persons with disabilities in nursing homes and/or institutions.   

House and Senate pass Medicaid Extenders Act!
January 18, 2019 | National Respite Coalition

The Medicaid Extenders Act of 2019 has passed both the House, and as of last evening, the Senate! The bill now awaits the President's signature.
The bill provides 3 months of funding for the Money Follows the Person program. States have until September 31, 2019, to spend the funds. The bill also extends the Medicaid's HCBS spousal impoverishment protections until March 31, 2019.
Advocates will use this winning momentum to urge the new Congress to enact longer extensions for both programs. Read Program Descriptions Here

Take Action
Call your Representative and Senators and 1) thank them for taking this action and 2) urge them to immediately consider longer term extensions for Money Follows the Person and the Spousal Impoverishment Protections.

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Senators or Representatives .

"Approximately 5.5 million Americans are living with Alzheimer's, and the disease costs the United States more than $277 billion per year, including $186 billion in costs to Medicare and Medicaid. Without further action, the number of Americans with Alzheimer's is expected to triple to as many as 14 million by 2050, costing the nation more than $1.1 trillion per year.  
This legislation applies a public health approach to reduce risk, detect early symptoms, advance care, improve data, and ultimately change the trajectory of this devastating disease."

RESPITE, or   short-term temporary relief, supports caregivers who are caring for loved ones. Respite allows caregivers to step away from their duties to refresh and relax.  Respite is often referred to as "giving the gift of time."
REST is an evidenced-based, national training program which prepares people, in both formal and informal support networks, to learn how to help. NYSCRC has trainers across New York State. 

If your organization would like to provide REST companion trainings for YOUR volunteer program, NYSCRC  can connect you with a REST trainer in your area.  For information contact Sharon Cackett.
Upcoming REST Trainer the Trainer 
Greece Baptist Church
February 14th & 15th | 9Am - 5PM
Upcoming REST Companion Training
Greece Baptist Church - Monroe County
February 21st and 28th | Noon - 2:00
March 2nd and 9th | Noon - 2:00

NYSCRC Virtual Resource Center
Virtual Resource Center Online
Powerful Tools for Caregivers leader training are now being offered through the virtual resource center.  We offer Powerful Tools for Caregivers leader training for caregivers of parents of children with special needs.  Limited funding available to provide leader training's for 10-12 people in your county.  For information contact Doris Green

Additional NYSCRC Training Resources
To schedule events or have your events posted in the newsletter, please contact Doris Green | 585-287-6393
Upcoming Events Around the State

Keeping Faith In Mind  | An educational workshop
A day of information and reflection on how faith communities can best support those with memory loss and their caregivers.
YOU should attend if ...
  • you are a member of a Faith community in Yates County
  • are interested in learning more about dementia and Alzheimer's Disease
  •  you are interested learning about resources to support caregivers.
Ongoing Grief Support Group | Monroe County
Finger Lakes Caregiver Institute is now offering a monthy support group for individuals who have lost a loved on with dementia
Third Fridays | 11am-12pm | Lifespan - 1900 South Clinton Avenue | Details
Upstate Elder Abuse Center at Lifespan
Financial Exploitation Webinar Series for Professionals
Lottery Scams Targeting Older Adults - U.S. Postal Inspector Shelley Carosella 
Wednesday | Feb 6th

Save the Dates
Opioid Use and Risks | Educational Event
Friday March 15th | 8:00 - 4:00 | Monroe Community Hospital | Rochester

Finger Lakes Geriatric Education Center
Save the Date | Annual Conference |April 18, 2019 |Watkins Glen Harbor Hotel
For information contact Anna Rosenblatt  607-274-1604

2019 Aging Concerns Unite Us (ACUU) Conference
Tues, June 11 - Wed, June 12, 2019
The Desmond, Albany, NY


To learn more, call

1-800-342-9871. Or go to 


Funded with a federal grant for Lifespan Respite awarded by the Administration for Community Living to the New York State Office for the Aging. Award Number 90L10023-02-2