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

New Reports and Resources

Caregiver Training - Video Series
The UCLA Alzheimer's and Dementia Care Video series provides viewers with practical tools you can use in a variety of settings to create a safe, comfortable environment both for the person with dementia and the caregiver. 

From tips on dealing with refusal to bathe to Caregiver Guilt - All these helpful videos are between 4 and 6 minutes long.  See All Videos Here

Understanding and Appreciating the Challenges and Supports Needed Kinship Families in Early Childhood for Grandfamilies

Please watch a discussion around the unique challenges and supports needed to support grandfamilies and kinship families (when children are being raised by grandparents or extended family) for young children. Presenters include Generations United, an organization working to improve lives of children, youth and families through collaboration, policies and programs and a caregiver to share both information about the experience of these unique families, as well as how systems need to accommodate and nurture services for these families.
Presentation  (90 minutes)

National Report Examines Potential Role of Caregivers in  Medical Product Development

The movement to include the input of caregivers in medical development gains momentum with a report release and formation of a Caregiver Pathways Task Force.

Last November, NAC and the  Leaders Engaged on Alzheimer's Disease (the LEAD Coalition) hosted the national summit on the family caregiver's role in drug and device development. As a result of the summit, NAC and the LEAD Coalition are honored to release Paving the Path for Family-Centered Design: A National Report on Family Caregiver Roles in Medical Product Development.

As a direct outcome of the report, NAC will launch a Caregiver Pathways Task Force to prioritize actions - while expanding the discussion - with the main goal of galvanizing a movement to better integrate caregivers and their perspectives in medical product development. The Task Force is expected to launch this summer.

Get the report and brief overview  HERE.

Policy Updates

The House Apprives Rep. Langevin's Amendment to Raise Funding for Lifespan Respite to $10 Million in the FY 202 Labor-HHS-Education Spending Bill -  June 13th

the House passed an important amendment to the FY 2020 Labor-Health and Human Services-Education (Labor-H) spending bill (H.R. 2740). The amendment, offered by our long-standing champion, Rep. Jim Langevin, raises funding to $10 million for the Lifespan Respite Care Program. The recorded vote on the amendment was 356 in favor to 67 opposed. The Labor-H spending bill also includes increased funding for the National Family Caregiver Support Program and other programs critically important to children and adults with disabilities, older adults and their family caregivers. 
Lifespan Respite Funding.  On June 19, the House passed the FY 2020 appropriations minibus (H.R. 2740) that includes four appropriations bills, including legislation funding the Departments of Education, Labor, Health and Human Services, and related agencies. The appropriations bill includes $10 million for the Lifespan Respite Care Program, thanks to an amendment offered by our long-standing champion for the program, Rep. Jim Langevin (D-RI) and approved by the House last week. The Labor-H spending bill also includes increased funding for the National Family Caregiver Support Program and other programs critically important to children and adults with disabilities, older adults and their family caregivers. Advocates continue to urge the Senate to include $20 million for the Lifespan Respite Care Program when it considers its version of the FY 2020 spending bill.

If your Representative  voted YES to support the amendment , be sure to thank them!  Ask your Senator to support $20 million for Lifespan Respite in FY 2020.
 
House Passes Bill to Reauthorize Money Follows the Person Program
On June 18, the House passed the Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act (H.R. 3253) by a vote of 371-46. The bill extends the Medicaid "Money Follows the Person" program , which helps people transition from institutional to community-based settings, through FY 2023. The bill also extends the Medicaid HCBS spousal impoverishment protections through March 31, 2024. Advocates are pursuing Senate action.

NYSCRC News

New Faith Based Respite Program

Under a mini grant awarded by NYSCRC, Grace Lutheran has opened a monthly drop in respite program in Vestal, NY - Broome County.  The program has been very well received and has 10-12 participants each month. Program Flier

NYSCRC Annual Business Meeting | Webinar
Wednesday, July 17th | 10:00 AM
Webinar Information
Event number: 629 198 891
Event Password: vZNDjmY8
Event address for attendees:  https://meetny-pilot.webex.com/meetny-pilot/onstage/g.php?MTID=e4fdc8a0f924d76fb73f54d1bc78815a7
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Audio conference information
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To receive a call back, provide your phone number when you join the event, or call the number below and enter the access code.
US Toll Free: 1-844-633-8697
Local: 1-518-549-0500
REST in New York

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 a standardized, national training program which prepares people, in both formal and informal support networks, to learn how to help to provide a quality respite experience.  

Available Courses:

* REST Master Trainer:
 prepares qualified REST trainers conduct REST rain-the-Trainer.

* REST Train-the-Trainer: prepares participants to conduct the eight- and four- hour REST Companion™ course to train paid and unpaid respite workers.

* REST Companion Course: an eight-hour course that provides education directly to people who serve care receivers one-on-one.

* REST Essentials™ Course: a four-hour program that prepares volunteers or paid respite workers to provide respite in supervised group settings, such as adult daycare, drop-off or camp programs.

If your organization would like to provide REST Companion or Trainer sessions for YOUR volunteer program, contact  Sharon Cackett at NYSCRC.

We welcomed 12 new REST Trainers on June 19th held at Skidmore College in Saratoga

We are looking forward to working with this diverse group of Trainers to enhance respite options in New York!

Ann Scherff - Community member and caregiver
Judith Bromley - Project Hope
RoseAnn O'Rourke - Warren County OFA
Tammy Moorehouse - Warren County OFA
Dee Park - Warren County OFA
Claudine Daily - Catholic Charities
Susan Beth Olsen - St. Peter's Health Partners
Darcie Casey - Rensselaer OFA
Lauren Benoit - Catholic Charities Schenectady
Jean Marie Lundgren - NYS Dept. of Family Assistance
Nicole White - Saratoga Senior Center
Lawrence Barisic - Saratoga Senior Center
NYSCRC Virtual Resource Center
     
Virtual Resource Center Online
Additional NYSCRC Training Resources
Speaker Services
To schedule events or have your events posted in the newsletter, please contact Doris Green | 585-287-6393
Upcoming Events and Webinars


Long Term Care Planning Project Meeting
Focused on Family Caregiver Supports 
July 9th | 1:00 - 4:00 | Concourse of the Empire State Plaza  | Room 6
Doris Green, NYSCRC and Deana Prest, NYSOFA Presenting

Please register here by July 5, 2019.   Those who are unable to attend in person may register to participate via WebEx here .    
 
For more information on the LTCPP please visit the  LTCPP webpage.  Please email direct any questions to  ALTCteam@health.ny.go v .

Webinar: Caregivers: A Key Focus of Care
July 11, 2019 | Online | 2-3 PM ET

Unpaid caregivers play a critical role in end-of-life experiences for those family and friends for whom they provide care. But while the focus of hospice and palliative care, by necessity, is on the patient, too often the needs of caregivers go unrecognized. For them, hospice caregiving often presents a complexity of emotions, demanding physical obligations, and expanded responsibilities and commitments. This webinar, offered by the National Hospice and Palliative Care Organization (NHPCO) and presented by Grace Whiting and Pat Heinz with the National Alliance for Caregiving, will introduce data on caregiving as a framework for the experiences and emotions of unpaid caregivers participating in hospice care for their loved one.  Learn more and register  HERE

Sponsored by NYSCRC 
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 free event is open to all. Space is limited so register today
August 28, 2019 | Al Sigl Center Gymnasium | 
1000 Elmwood Avenue | Rochester, NY  14618 | 9 - 5
CEU and Registration information HERE




To learn more, call

1-800-342-9871. Or go to

www.nyconnects.ny.gov 

 
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