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

2018 Lifespan Respite Sustainability Summit

October 18, 2018
Hearst Media Center, Albany, NY

Presented by NYSCRC in partnership with the Administration on Community Living, ARCH National Respite, NYSOFA , MCOFA and Lifespan of Greater Rochester. 

We are seeking a diverse group of participants for this working meeting, with representation from every region of the state and from all disability and disease related organizations who strive to support caregivers.  If you know of caregivers that would to lend their voice, we welcome them as well.
Please consider joining us for this important work. If not you, then who in your community would be a "good fit" participant?  Please share this information with them.
The purpose of the Summit is to strengthen state and community partnerships to sustain Lifespan Respite activities; develop strategies to maximize use of existing respite resources and identify and leverage new respite funds; engage in sustainability planning; and generate innovative activities for future development.
The New York Lifespan Respite State Summit Objectives are:
  1. To identify state-level policy and program needs and goals related to respite care for children, adults and an aging population
  2. To strengthen state and community partnerships to sustain Lifespan Respite activities
  3. To develop strategies to maximize the use of existing respite resources
 Consistent with other states' summits, this event aims to connect policymakers, researchers, family caregivers, and statewide partners to exchange knowledge and expertise, leading to the development of a statewide strategy for strengthening the respite care system for all individuals and caregivers, across the lifespan.
This a Free working meeting, pre-registration is required.  You will receive pre-summit information and all seats will be assigned. Breakfast and Lunch will be provided.

A Pre-Summit reception will be held at the Albany Marriot on October 17th | 5:30-7:30 | Details will be emailed to registered participants.
Registration Deadline Friday October 5th at 5:00 PM
A special thank you the for the generous support of the  Albany Guardian Society

 For more information please contact Doris Green
Share The Care with Sheila Warnock
September 13, 2018 |CareFirst | Painted Post
This FREE one-day SHARE THE CARE™ training will provide you with the information and tools you need to introduce the model to help family caregivers. You'll receive a copy of the Share The Care handbook, a 98-page training manual with electronic notes, all 23 Share The Care™ forms, and first-hand advice to guide you through every step in the process of organizing a Share The Care group and keep it functioning even when times are tough. This knowledge will allow you to offer information, support and concrete suggestions to new groups just getting started.

The Share The Care™ model has helped patients and families across the USA and other countries manage the caregiving needs of multiple illnesses, disabilities, or difficulties associated with aging. This unique team approach systematically creates a network of friends, neighbors, work colleagues, etc. to provide caregiving help for the patient and their entire family as well as emotional support for all the caregivers involved.
This event is now open to all counties.
Email Sharon Cackett for last minute registration

ARCH National Respite Conference

Illuminate Respite! The Call for Presentations is now open for the 2019 ARCH National Lifespan Respite Conference to be held in Buffalo, New York, April 30-May 2, 2019. Deadline for Call for Presentations has been extended to September 28, 2018.
The ARCH National Respite Network and Resource Center and its co-hosts, the New York State Caregiving and Respite Coalition and the New York State Office for the Aging, invite you to  submit a proposal  to participate in the only national conference focused on shining a light on innovation and quality in respite services for family caregivers of children and adults.
The theme, Illuminate Respite! is inspired by the rich history of Buffalo, located on the shores of Lake Erie near Niagara Falls. In the late 19th century, Buffalo was the first city to implement widespread streetlights, earning it the nickname, "The City of Light." During this time Buffalo was a hub of innovation, using the natural power of Niagara Falls to bring light and growth to the city. This conference will provide a space to harness the power of the respite network to explore and formulate strategies to meet the respite needs of the nation's 43 million family caregivers.
We welcome proposals for breakout sessions on any aspect of planned or emergency respite service delivery, streamlined access, research, evaluation, policy, best practices or innovation.
Call for Presentations                                            

Nominations Open


Deadline: October 12, 2018 | Online
Family Caregiver Alliance - with The Rosalinde and Arthur Gilbert Foundation - are pleased to announce the Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards for 2018 are now open and they are accepting applications. There are three $20,000 awards in the following categories: (1) Creative Expression; (2) Diverse/Multicultural Communities; and (3) Public Policy. Learn more and apply HERE .
Funding Opportunities

NYS DDPC Announces
Three New Funding Opportunities
1. Social Opportunities Initiative - 1 grant $750,000
2. Rural Peer-Led Outreach and Community Mapping - 1 grant $300,000
3. Court Personnel Training - 1 grant $300,000


Letter of Intent Date: Friday, September 28th

Proposal Due Date: Friday, October 19th


More Information


New Research: Fostering Public-Private Innovation in Caregiving
Moving Forward on Behalf of Family Caregivers in the U.S.: Designing a Public-Private Fund to Support Research and Innovation       
The nation has begun to recognize the essential role that unpaid friends and family members play in supporting individuals with ongoing health and assistance needs. Yet these informal support systems are not sufficient to support the many Americans with care needs. Policymakers need pathways that will encourage businesses, entrepreneurs, think tanks and incubators to find sustainable marketplace solutions to support and augment the support provided by family caregivers across the lifespan.
With a grant from the  Robert Wood Johnson Foundation , the National Alliance for Caregiving was honored to host a one-day summit on Public-Private Innovation in Family Caregiving on April 24, 2018. This report captures the multi-stakeholder input of that summit and offers a roadmap for next steps.
Read the report HERE.

Rural-Urban Difference in Workplace Supports and Impacts for Employed Caregivers
Henning-Smith, C. and Lahr, M. The Journal of Rural Health, Published Online June 27, 2018
This study examined rural-urban differences in employed caregivers' access to workplace supports, and the negative impacts of caregiver strain on work and health. The authors found fewer workplace benefits are available to employed rural caregivers, causing greater caregiver strain. In concluding that all employed caregivers, particularly those in rural areas, need more options, suggestions are presented on how to increase workplace supports. Read the news story and the abstract.
Legislative and Policy Updates

FY 2019 Appropriations
On August 23, the Senate passed an $856.9 billion appropriations bill (H.R. 6157) to fund the Department of Defense and the Departments of Labor, Health and Human Services, and Education for FY 2019, which begins on October 1, 2018. The final bill includes $4.11 million for the Lifespan Respite Care Program and $180.89 million for the National Family Caregiver Support Program, including $300 million to fund the Family Caregiver Council at the Administration for Community Living as authorized by the RAISE Act.   Lawmakers also approved a manager's package of amendments by unanimous consent, including an amendment to provide funding for the Secretary of Health and Human Services to establish the Advisory Council to Support Grandparents Raising Grandchildren.
The House still has to take action, but there is now momentum behind final passage of the linked Defense and Labor/HHS appropriations bills. According to House Labor-HHS-Education Appropriations Chairman Tom Cole (R-OK), "I think there's going to be a strong desire by the administration to try and get Defense done without a CR (continuing resolution) and that will lend at least a sense of urgency to getting Labor-H done as well, because you're not going to just get Defense on its own." He added that the Defense spending bill is "a heck of a locomotive to be attached to." Even though the bill has not been brought up on the House floor, preconference meetings are underway. According to today's Roll Call, Chairman Cole said he doesn't expect the House will bring his subcommittee's bill to the floor, but he believes a final version could be sent to the White House before the end of the month.

Go4Life from National Institute on Aging at NIH Launches New Website 
Go4Life recently launched an updated website, just in time for Go4Life Month in September. Go4Life is the exercise and physical activity campaign from the National Institute on Aging at NIH. New website features include more attractive and user-friendly landing pages, a page devoted to workout videos, a revised partner section, fillable tracking tools, and updated feature articles based on formerly used Tip Sheets. Article topics include: How Exercise Can Help You, How to Stay Safe During Exercise and Physical Activity, and How to Make an Exercise Plan, among many others. Check out the new website  HERE 

National Inventory for Self Directed Programs - ASD applied self direction
In the summer of 2016, the National Resource Center for Participant-Directed Services (NRCPDS) completed a National Inventory of self-direction programs in the United States. The inventory builds on the NRCPDS' 2011 and 2013 National Inventories to reflect the impact of changes in Federal law, regulation, and policy designed to promote growth of self-directed long-term support services, as well as the expanding number of state Medicaid programs contracting with managed care entities to administer their long-term services and supports. 
Access to Self Directed and Medicaid Managed Long Term Care can provide significant relief for caregivers. 
Below is comprehensive list of resources in New York.

New York Enhanced In-Home Services for the Elderly (EISEP)
  • Populations served: Adults (60+) who need help with everyday activities to take care of themselves, want to remain at home, and are not eligible for Medicaid
  • Self-directing participant count: 735
  • Program Website 
Mainstream Medicaid Managed Care (MMMC)
  • Populations served: Persons with mental Illness
Consumer Directed Personal Assistance (CDPA) Program- Available under MMMC and MLTC
  • Populations served: Adults with physical disabilities
  • Self-directing participant count: 20,000
  • Program Website 
NYS OPWDD Comprehensive Renewal Waiver
  • Populations served: Adults with intellectual/developmental disabilities
  • Self-directing participant count: 10,000
  • Program Website 
Partnership Program-  1115 Waiver which gives NY the authority for the CDPA Program
  • Populations served: Seniors and adults with physical disabilities
Self-Directed Care for individuals with Serious Mental Illness  (Pilot)
  • Populations served: Persons with mental Illness
Veteran-Directed Home and Community-Based Services Program (VD-HCBS)
  • Populations served: Adults with physical disabilities and seniors (Veterans) 
  • Self-directing participant count: 24
  • Program Website 

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, the NYSCRC  can connect you with a REST Trainer in your area.  For information contact Sharon Cackett.

Welcome newly trained REST Companions from Pinnacle Lutheran Church in Rochester! Wanda Viene, Kat Stilz, Stephanie Lucas, Karla Simmons, Debbie Hughes, Katherine Ippolito, Catherine Kernehan, Barbara McHenry
REST Trainers: Sharon Cackett and Denise Lynn Smith

Upcoming Companion Trainings
Hosted by The Living Well | Thursday September 27th | Penn Yan, NY   More Information
Hosted by Jewish Family Services |Sept. 29th & ()ct. 6th| 9:30 - 1:30 | Highland, NY  More Information
Hosted by Broome County OFA | Wednesday September 29th | 9 - 5 | Vestal, NY  More Information
 Welcome new REST TRAINERS!
Jill Richards, Angela Wollschlager,  Allison Diedrick and Melody Rivera  from Medical Solutions of the Finger Lakes
Sharon Leary - Home Away From Respite at SUNY Geneseo
Frances Klimek, Ruth Kron and Karla Simmons from Pinnacle Lutheran Church
Kimberly Lyons from The Living Well
REST Trainers: Doris Green and Sharon Cackett

NYSCRC Virtual Resource Center

NYSCRC provides a variety of  resources and training opportunities for professionals and caregivers. Click on the desired training for description.   
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 trainings for 10-12 people in your county.  For information contact Doris Green
Upcoming Trainings for Caregivers:
Lifespan Fall Workshops - See what you can learn at Lifespan!
Tai Chi for Arthritis | Medicare 101 | Powerful Tools for Caregivers |
Matter of Balance | Fall Prevention | Legal and Financial Planning for Families Impacted by Dementia | Living Health with Diabetes
New York State Office for the Aging Presents -2018 "Legal Updates" Webinar Series - September 13th and October 11th More Information

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

Conferences and Webinars
New Save-the-Dates!

National Volunteer Caregiving Network Webinar
Thursday, September 20, 2018 | 3:00-4:00 p.m. ET
Older adults, people with disabilities, and their caregivers benefit from a volunteer who provides a ride to the doctor, grocery shopping, getting prescriptions, assistance with paperwork, or changing a light bulb. This webinar will show how to identify the contact for the nearest volunteer caregiving program, learn about the services available through Volunteer Caregiving, and how to make appropriate referrals. Tammy Glenn, Acting Executive Director and Vice President for the National Volunteer Caregiving Network (NVCN), and Jim Archer, NVCN Trustee, will present. Register.
Caregiver Action Network - Lunch and Learn
September 29th | New York City | 10AM - 2PM
Challenges in Healthcare - Focus on Resilience
Thursday September 27th | 8 am - 4:30 pm | Burgundy Basin Inn
Overcoming Barriers to a Heart Healthy Lifestyle
Presented by Finger Lakes Geriatric Education Center
Thursday, October 4, 2018 | 7:15 - 9:00 pm | Penn Yan
Speaker: Joe Piscatella |Registration Required
Caring for the Caregiver Conference
Presented by IR Medicine Homecare
Thursday, October 25, 2018 | 9AM -3PM | Canandaigua
Keynote: Martha Stettinius, Author, Inside the Dementia Epidemic: A Daughter's Memoir | Register Here
State Society on Aging Conference (SSA) | Saratoga Springs
October 25-27, 2018
 "The Many Worlds of Aging: Implications for Policy, Research, Education and Practice."   more information available at
Finger Lakes Geriatric Education Center
Spanning the Continuum of Care: Innovations in Geriatric Heath Practice
Friday September 29th  | Conference Brochure


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

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