Family Caregivers Can’t Do It Alone: 124 Groups Urge Governor, Legislature to Fund Vital Home Services

ALBANY, N.Y. – More than 100 public entities and non-profit organizations, including AARP New York and other advocates for the aging, are calling on New York Governor Kathy Hochul and leaders of the State Legislature for the funding millions of family caregivers need to help a parent, grandparent, spouse or other older loved one age at home with dignity.

 Today the 124-member coalition sent Governor Hochul, Senate Majority Leader Andrea Stewart-Cousins and Assembly Speaker Carl Heastie a letter (see below, with list of signees) stating that ongoing underfunding of home- and community-based services leaves adult caregivers across the state on their own to support a vulnerable parent or other relative as they also manage their own jobs and other responsibilities.

The groups are asking for $42 million in the 2024-2025 final state budget so the State Office for the Aging (SOFA) can eliminate long waiting lists for home-meal delivery, transportation, home care, housekeeping and other essential services that county offices for the aging offer.

According to SOFA, they have 11,000 requests from New Yorkers waiting for non-Medicaid home- and community-based care services. These numbers were reported to the New York State Senate Finance Committee at the request of the Chair at the 2024 Human Services Budget Committee hearing and are from September 2023. However, our organizations believe this list could be as high 18,000 services requests from thousands of older New Yorkers and their families at this point in the year.

A new AARP New York survey of 1,342 registered voters found women in New York State are nearly twice as likely as men to be caregivers for a loved one, and are typically 58 years old and caring for their 80-year-old mother. Additional AARP research found family caregivers spend more than $7,000 out of their own pockets and adjust work hours or leave jobs entirely to ensure a vulnerable aging loved one receives medical care and companionship.

“Across the state, our aging loved ones tell us quite clearly that they want to stay in their homes and communities as their medical and cognitive needs change. We know that is what their family caregivers also want,” said AARP New York Director Beth Finkel. “Unfortunately, long-term care is balanced on the backs of these unpaid adults, who have every reason to count on the state for the most basic services. Instead of waiting lists we need relief for caregivers and their aging loved ones.”

The organizations also called for $11.3 million in additional funding for the underfunded Long Term Care Ombudsman Program (LTCOP), which falls well short of its goal of providing weekly visits to nursing homes and other adult care facilities. Currently, only 12% of facilities are visited in person on a weekly basis. Ombudsmen respond to quality-of-care issues and cases of abuse and neglect reported by nursing home residents and their families.

However, Governor Hochul’s budget proposal cuts home- and community-based services, and includes no funding increase for LTCOP. The Senate and Assembly have passed one-house budget proposals that include increases for both programs.

According to a 2023 report by the AARP Public Policy Institute, there are an estimated 2.2. million caregivers in New York State who are providing over 2 billion hours of care to their loved ones each year.

“On behalf of the 59 area agencies on aging in New York, the Association on Aging fully supports increased investments into the New York State Office for the Aging budget,” said Becky Preve, Executive Director of the Association on Aging in New York. “It is unconscionable to allow thousands of eligible older residents to languish on waiting lists, or to be forced into institutional settings, due to continued lack of investment in a population that pays over $72 billion per year in state and local taxes.”

“Every day we get calls from older adults who need services. Every day we hope that services are available, so they won’t need to be put on a waiting list. Every day we hope to avoid the crisis that will tip the delicate balance of independence versus dependence for older people,” said Ann Marie Cook, President and CEO of Lifespan of Greater Rochester. “We cannot put vulnerable people on waiting lists and expect them to remain independent. Thousands of older New Yorkers are waiting and we can’t afford -- and neither can they -- to wait any longer.”

“Clearing the wait list for home- and community-based services will allow almost 20,000 older adults to stay in and participate in their communities," said Allison Nickerson, Executive Director of LiveOn NY. "The Assembly and Senate are truly champions of aging in our state and with this investment they are righting a historic wrong and bringing some justice to older New Yorkers."

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March 20, 2024

The Honorable Kathy C. Hochul

Governor

New York State

NYS Capitol Building

Albany, NY 12224

 

The Honorable Andrea Stewart-Cousins

Majority Leader

New York State Senate

907 Legislative Office Building

Albany, NY 12247

 

The Honorable Carl Heastie

Speaker

New York State Assembly

932 Legislative Office Building

Albany, NY 12248

Thank you for all your past work making New York a better place to age with independence and dignity. These efforts have not gone unnoticed by our organizations and the older adults we serve in the community.

We again call on your leadership and respectfully request that you include in the final state budget $42 million to address the State Office for the Aging (SOFA) home- and community-based services waiting list and $11.3 million for the Long Term Care Ombudsman Program (LTCOP). We thank the Senate and Assembly for proposing these much-needed investments in the one-house budgets

Today, nearly 1 in 5 New Yorkers are 65 and above (18%), a larger share of the state’s population than ever before.[1] Family members are often the ones who provide care to their aging loved ones to help them through an illness or with chronic care, allowing them to stay in their homes as long as possible. If a family caregiver is forced to place a loved one in a nursing home, LTCOP, the very program that can advocate on behalf of their loved one, is lacking the funding that would allow it to operate fully and effectively.

It is also estimated that family caregivers spend an average of $7,242 each year on care for their older loved ones.[2] Women in New York State are nearly twice as likely as men to be caregivers for a loved one and are typically 58 years old and caring for their 80-year-old mother, according to a new report by AARP New York. [3]

Our organizations believe the cuts that the Executive Budget proposes are harmful to family caregivers and do not recognize the role and the value family caregivers have in our long-term care system.

SOFA Waiting List for Services 

According to SOFA, they have 11,000 requests from New Yorkers waiting for non-Medicaid home- and community-based care services.[4] These numbers were reported to the New York State Senate Finance Committee at the request of the Chair at the 2024 Human Services Budget Committee Hearing and are from September 2023. However, our organizations believe this list could be as high 18,000 services requests from thousands of older New Yorkers and their families at this point in the year.

If a family has to wait and is unable to get these services for their aging loved ones, they have no choice but to try to do these tasks on their own or come to one of the hardest decisions a family has to make – whether to put a loved in a nursing home or another adult care facility.

In addition, according to a 2023 SOFA report “New York's Program to Address Unmet Need in Aging Services” [5] in reference to those seeking services from SOFA-administered programs, the agency stated, “our analysis determined that not addressing the service and support needs of this population would cost New York State Medicaid an estimated state-share of more than $50 million per year.”

Recommendation: An additional investment of $42 million to address the waiting lists and establish a plan that will address the needs of these current and future families caring for older family members, as proposed in the Assembly one-house budget.

 

 

Long Term Care Ombudsman Program

LTCOP is supposed to be the voice of the frail in our institutions. It helps residents and family caregivers understand and exercise residents’ rights and intervenes to help protect residents by resolving specific quality-of-care issues.

LTCOP strives to have a regular presence in all adult care facilities, which is considered a least one visit per week per facility. Currently, only 12% of facilities are visited in person on a weekly basis. Therefore, residents do not receive the weekly presence that the ombudsman program has set as its goal.[6]

Unfortunately, the Executive Budget cuts $2.5 million from the program. In addition, the latest data for LTCOP shows that in one single quarter the ombudsman program received 37 reports of abuse, neglect and exploitation.[7] This category of reporting is defined as physical, sexual, or psychological abuse, financial exploitation, or gross neglect. This is simply unacceptable to our organizations.

Recommendation: Our organizations respectfully request an additional $11.3 million to meet the LTCOP goal of one visit once a week by an ombudsman per facility to ensure residents receive high-quality care and have a strong and consistent advocate, as proposed in the Senate one-house budget.

Thank you again for your leadership and we strongly urge you to include these additional investments in the final state budget. Not only will this additional money help thousands of older New Yorkers and their family caregivers, it would be a wise investment that will save Medicaid dollars.

Sincerely,

50 Forward Mohawk Valley

AARP NY

Action for Older Persons

Allegany County Office of the Aging

Allen Community Senior Citizens Center

Association on Aging in New York

Bay Ridge Center

Bedford Park Multi Service Center for Senior Citizens, Inc

Benson Ridge Senior Services

Bergen Beach Youth Org. INC.

Bronx House