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

2018 Lifespan Respite Sustainability Summit
On October 18th, 130 people convened in Albany for the first Lifespan Respite Sustainability Summit.  Participants included representatives from aging and disability networks across the state, ARCH National Respite, Lifespan/New York State Caregiving and Respite Coalition, the New York State and Monroe County Offices for the Aging.
The summit was held at the Hearst Media Center in Albany, New York. About 130 people attended the day-long event that was hosted by the NY State Caregiving and Respite Coalition (NYSCRC) and the NY State Office for the Aging (NYSOFA). The objectives for the event were to:
  • Identify state-level policy and program needs and goals related to respite care services for children, adults, and aging population.
  • Strengthen state and community partnerships to sustain Lifespan Respite activities.
  • Develop strategies to maximize use of existing respite resources
Doris Green  shared recent events of the Coalition.  A Summary of  coalition activities are  linked below.  Deana Prest and Jessica Perk with NYSOFA provided an overview of the state's Lifespan Respite grant activities, including their model partnership with NY Connects, the state's No Wrong Door approach. A panel of individuals representing multiple state agencies, including representatives from the Dept. of Health, Office of Mental Health, Dept. of Veterans Affairs, the Office of Persons with Developmental Disabilities, the State Office for the Aging, and the Office of Children and Family Services, discussed the respite options available in the state. 
An inspiring panel of family caregivers shared their personal stories about the importance of respite. We thank them for their courage and their willingness to share their stores.  The panelists received a standing ovation!!
Beth Finkel, Director of AARP NY presented findings from the Future of Family Caregiving in NY. At the conclusion of the Summit, NYSCRC described their plan to establish Advisory Board subcommittees to expand their pool of Lifespan Respite stakeholders and recruited volunteers from summit participants. 
A follow up Web Ex session will be held on January 15th at 10:00 AM for all those interested in being involved in building a sustainable network of respite options statewide.  Call in details will be available in the January newsletter. A full report will discussing the findings and outlining a plan of action will be available in the coming months.
Additional Handouts to inform the process included:



Mini Grant Announcement


NYSCRC is awarding two mini grants in the amount of $3500 for the development or expansion of volunteer respite programs


Application deadline is December 5, 2018

Mini grant instructions and application


National Caregivers Month November 2018

Caregiver Month Events Around the State

A "Caring for the Caregiver" Retreat will take place on Nov. 17 , at Celebrate Family Church, Leicester. The event, specifically for caregivers of those living with Alzheimer's, dementia or other chronic health conditions, will include lunch, community vendors, door prizes, and more. See details

The Oneida County Office for the Aging/Continuing Care, and the Community Elderwellness Council will honor three caregivers , each from the category of professional, informal and community leader, on Nov. 8, at the annual Celebrating Life event, in honor of National Family Caregivers Month. Read article here.  

The 14th Annual Dutchess County Caregivers Conference will take place on Nov. 16 , at the Grandview, Poughkeepsie, to commemorate National Family Caregivers Month. Themed, "Caregiving - a Highwire Act," the conference will feature discussions on asset protection, Medicare and Medicaid, navigating the healthcare system and scam prevention. See information.

Information and Inspiration Workshops for Older Adults and Caregivers- Presented by Lifespan of Greater Rochester Details

Send YOUR Events to Doris Green for posting in the NYSCRC Newsletter 
Research  Opportunities

Currently seeking 80-85 caregivers who are using respite services who reside in the following counties:
Allegany, Cattaraugus, Cayuga, Chautauqua, Cortland, Erie, Genesee, Herkimer, Madison, Niagara, Orleans, Oneida, Onondaga, Oswego, Tompkins, and Wyoming counties. 

UGA Today  | October 22, 2018
" How much respite do family caregivers need? Tiffany Washington, an assistant professor in the School of Social Work, will try to find out in her recently funded project.  It's an important question: About 43.5 million people in the United States provide unpaid care to an adult or child, according to a 2015 study by the National Alliance for Caregiving and AARP... Partnering with aging-services providers, she and her research team will conduct telephone surveys with about 80 caregivers in western and central New York state to see how often they are using respite services and examine whether their social support networks, among other factors, relate to their access to and desire for respite care. "

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.

The target population is family adult caregivers of older adults who have physical, intellectual, or cognitive disabilities, and are consumers of respite services. Caregivers must be 18 years or older and have been caregiving for at least 3 months
Those meeting eligibility criteria will be invited to complete the respite questionnaire via telephone interview. Participants will be mailed a $100 gift card at completion of their interviews.

Details and Contact information
Legislative and Policy Updates

U.S. Department of Veterans Affairs (VA)
Aid and Attendance Benefits - Regulatory Changes

The U.S. Department of Veterans Affairs (VA) recently amended its regulations governing entitlements to VA pension programs, including Aid and Attendance benefits that can provide assistance with long-term care costs so Veterans can get the care they need at home, such as respite, or in assisted living. Aid and Attendance is available to low-income Veterans who have a disability that is not service-connected and their surviving spouses. The regulatory changes that took effect on October 18 cover the following:
  • Establish a clear net-worth limit for income and assets for Veterans to qualify for pension, 
  • Establish a 36-month look-back period to review asset transfers at less than fair market value that reduce net worth and create pension entitlement, 
  • Establish up to a five-year penalty period to be calculated based on the portion of the covered assets that would have made net worth excessive, and
  • Updates medical expense definitions for consistency with VA internal guidelines.
While the changes align income eligibility determinations with those for Medicaid, the stringent requirements, including the 36-month look-back period to review asset transfers, may make it more difficult for Veterans and their surviving spouses to qualify for the Aid and Attendance benefit.

Resources and Reports

 Muscular Dystrophy News Today | October 23, 2018
" Taking care of patients with Duchenne muscular dystrophy (DMD) can have significant effects on caregivers, leading to a lower health-related quality of life, poor sleep quality, depression, pain, stress, sexual dysfunction, and lower self-esteem, a review study reports.  Caregiving can also have a considerable negative impact on work life and productivity, according to the study, titled 'Duchenne muscular dystrophy and caregiver burden: a systematic review' and published in the journal Developmental Medicine & Child Neurology." Read Report

Employment Outcomes and Paid Leave for Caregivers of Children with Intellectual or Developmental Disabilities
Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc, Fall 2018
 Two new research briefs on paid leave for caregivers of people with disabilities have been released by The Family Support Research and Training Center (FSRTC) and partners. Based on data from the Family and Individual Needs for Disability Supports (FINDS) online survey, the goal is to understand the experiences of families who provide supports to a family member with intellectual and/or developmental disabilities (IDD). The briefs look at the outcomes of caregivers of those with IDD, and needed paid leave policies.

Love Without Borders: Grandfamilies and Immigration
The 2018 State of Grandfamilies in America
Annual Report
Generations United, 2018

The added hurdles faced by grandfamilies who come together as a result of a parent's detention or deportation are highlighted in this report . These hurdles include language barriers, fear of government agencies, and less access to support and services for meeting children's needs. Policy and program recommendations are offered to help policymakers and advocates.

Grandparents, Grandchildren and Caregiving
by Jaia Peterson Lent and Adam Otto of Generations United
Generations, Journal of the American Society on Aging, October 10, 2018
Given the current opioid crisis, grandparents and other relatives increasingly are stepping in to raise children when needed, provide a family home, and reduce the trauma of separation. These caregivers save taxpayers $4 billion in avoided foster care annually. The results are also better outcomes for children. The article's authors outline family characteristics and well-being, supportive services, challenges, issues and policies.

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.

Participate in the 2018 REST Companion Challenge for National Family Caregivers Month in November (REST National) Details

Upcoming Train the Trainer Sessions 
Ulster County OFA | Nov 29th & 30th | Details

Upcoming Companion Trainings
Greece Baptist Church | Rochester | Nov 10th & 17th | 12:00 - 2:00
Must attend both sessions | For information Contact Jen or 585-329-9814

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 trainings 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

Events Around the State
Caregiver Summit: A free event specifically for caregivers of people living with Parkinson's -Two Locations or webinar
Saturday December 1 | 11:oo-2:45 | Rochester | Syracuse | Webinar Registration

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 |

LGBTQ+ Care Partner Programs | Monroe    
Offered through a collaboration between the Finger Lakes Caregiver Institute at Lifespan and the Out Alliance | October - December Schedule
Alzheimer's Association Specialty Support Group
For individuals living with Alzheimer's and other Dementias - Caregiver Support Group simultaneously. | Second Tuesday of the Month | Rochester | Details
Parent to Parent - Family Engagement Conference
November, 29 | 8:30 - 3:00 | Depew | Details

ARCH National Respite Innovation for Recognition

The ARCH National Respite Network and Resource Center is seeking exemplary and innovative respite care services from across the nation. We wish to learn more about respite services that are evidence-based, that appear promising, or that are trying new service models.  

We are also looking for respite services that address a challenging aspect of respite care delivery, such as reaching rural or military family caregivers, children or adults with mental health and/or behavioral issues, or grandparent or relative caregivers, for example.
ARCH is also seeking respite services that use outstanding or innovative person and family-centered approaches to respite or work to improve quality of services.
Special Recognition
In special recognition, ARCH will provide travel to attend the 2019 National Respite Conference in Buffalo, New York, for up to three of this year's Exemplary Practice Program awardees who demonstrate exceptional innovation.
Deadline for Application is December 1, 2018


ARCH National Respite Conference

Hosted by the NYS Caregiving and Respite Coalition

In Partnership with NYSCRC, managed by Lifespan NYS Office for the Aging | Monroe County Office for the Aging


Registration Now Open

NY Resident Discount code: NYResident 


Adam's Mark Hotel and Conference Center is under new management! Soon to be the Buffalo Grand Hotel|


Conference Website 


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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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