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

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

NEW! Lifting Our Voices for Caregivers

Caregiver Self Assessment Survey

Family caregivers  provide 80% of all long-term care in NYS. NYSCRC understands the unique needs of caregivers. Through training and education, we focus on increasing caregiver access to respite resources. The Caregiver Self Assessment Survey is designed to assist caregivers in recognizing the importance of self-care. 

Click Here to print the survey

Click Here to take the survey on line



Legislative 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,  pre-conference 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.

New Medicare Cards Coming Soon - Don't Get Scammed!

Changes are coming to your Medicare card. By April 2019, your card will be replaced with one that no longer shows your Social Security number. Instead, your card will have a new Medicare Beneficiary Identifier (MBI) that will be used for billing and for checking your eligibility and claim status. And it will all happen automatically - you won't have to pay anyone or give anyone information, no matter what someone might tell you.

Watch the video

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

Family Caregiver Perceptions of Prescription Opioid Medication

The World Health Organization (WHO) has called for prompt detection and treatment of mental health and substance use disorders in elderly adults. Despite this call to action, currently there are no screening tools designed to specifically identify elderly adults at risk of developing Opioid Use Disorder. Researchers at William James College are collecting data from the perspective of family caregivers to identify changes in the behavior of elderly adults since being prescribed opioid medication. Learn more and take the survey HERE. 


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