Caregiver Crisis in CNY: Looming Demographic Shift Could Spell Disaster for Area Elderly; Advocates Call for Change
NYS Ranks Near Last in Support for Unpaid Caregivers; AARP Announces Blueprint to Avert Disaster, Makes Issue a Top 2014 Legislative Priority
SYRACUSE, N.Y. – New York State is already at the bottom of the barrel in providing needed supports for 4.1 million unpaid caregivers, and today, AARP warned a looming demographic shift leaving fewer people able to provide that care - valued at $32 billion annually - could spell disaster. The Association joined with fellow advocates at the Salvation Army in Syracuse to call for change, releasing a blueprint for the state to fix New York’s caregiver problems and prevent the crisis from becoming a disaster.
AARP says the plan will protect the elderly and frail and save taxpayers money by strengthening supports for more than four million unpaid, informal family caregivers.
The Empire State ranks 48th in providing support to the over 4 million unpaid caregivers who deliver an estimated $32 billion per year in care to loved ones, oftentimes older relatives. If that wasn’t bad enough, a recent AARP analysis finds the caregiving bubble in New York is about to burst, meaning there will be fewer family members to provide care for older relatives. In 2010 there was a potential pool of 6.6 people aged 45-65 for every person 80 and older who would likely need care at some point. By 2030, the number of potential caregivers in the state will shrink to 4.8 for each person over 80, and in 2050, there will be just 3.5 people to provide the care, according to the analysis.
AARP estimates that more than 90,000 residents 50 and older in Onondaga County – more than half – expect to provide unpaid care to an adult relative or friend in the next five years. More than 50,000 – nearly a third of the county’s 50+ population - are already doing so or have done so in the last year. A quarter of them spend 40 hours or more a week on caregiving – the equivalent of a full-time job – and most of them already have jobs. And nearly half of them have had to go to work late, leave work early or take time off during the day to provide care.
Today, AARP, the New York State Caregiving & Respite Coalition and the Council of Senior Centers and Services of New York City, Inc. warned that New York will pay the price if it doesn’t act to support the state’s caregivers. As more Boomers face the demands of family caregiving and the state’s elderly population struggles with where to turn, the Association is making fixing New York’s caregiver problems a top priority.
It’s a top issue for 50+ voters, who make up the most powerful voting demographic in the state. AARP is working to make sure the Governor and lawmakers hear that message loud and clear.
Today, AARP and its partners released Caregivers in Crisis FINAL , which urges Gov. Andrew Cuomo and the state Legislature to:
- Establish a “Community Care Navigator” program to help caregivers develop personalized roadmaps to direct them to available help, support and services for their ailing parents, spouses, loved ones – and themselves.
- Provide adequate funding to the State Office for the Aging for cost-effective non-Medicaid-funded caregiving assistance programs, starting with a $26 million down payment to move about 7,000 New Yorkers off waiting lists and into existing programs.
- Train caregivers to perform more medical procedures themselves.
- Strengthen family leave policies to protect workforce productivity.
- Ensure access to competent legal assistance and protect the vulnerable from fraud and exploitation.
- Promote and increase affordable housing options designed to enhance independence.
- Expand successful volunteer services models to provide help and contain costs.
- Encourage direct-care staff recruitment and retention.
Those recommendations grew out of suggestions AARP and its partners received from about 1,400 caregivers, 900 of whom attended 12 listening sessions around the state this summer and fall, including August 7 in Syracuse. Those caregivers and 500 more who responded to an on-line survey agreed that New York is not doing enough to support them.
“The lack of support and services for caregivers in New York is already a crisis, and it’s moving toward disaster,” said Neal Lane, AARP New York State President and a former Director of the State Office for the Aging. “We ranked 48 th of the 50 states in a national AARP survey on support for family caregivers. And a looming population shift in New York will result in fewer caregivers to care for more elderly residents, stretching caregivers even thinner.”
Already, the number of caregivers in New York has grown to 32%, from 25% in the 1990s. And as the population ages, there will be fewer caregivers for more New Yorkers in need of care.
“We call on Governor Cuomo and the Legislature to create a Community Care Navigator program to develop a personal roadmap for each caregiver to find the information, services and supports he or she needs,” added Lane. “This was the top concern among the caregivers we listened to around the state, who want to take care of their loved ones but too often don’t know where to start or where to turn.”
“When Charlie was getting ready to leave his rehab facility, we found out we couldn’t plan in-home physical therapy until a week or 10 days after he got home,” said Robert O’Connor, an AARP volunteer from Fayetteville caring for a friend with learning and speech disabilities who is recuperating from two knee operations but has no family living locally. “I asked why, and I was told that was the usual way things happen and couldn’t be changed.
“While I knew many of the services that might help him, I didn't really understand the barriers to actually getting such services coming into his home until I had to get involved. He is a good example of how necessary services that are overlooked or barely tried can shoot down good home and community services and put someone into a Medicaid-funded facility.”
“All my life my mother has been there for me. Now she needs me, and I want to make sure I am there for her,” said Tracy Murphy, 53, of Syracuse, whose 85-year-old mother suffers from Chronic Obstructive Pulmonary Disease and a heart condition. “But I'm tired, and worn out. I'm joining AARP in asking New York to help us as caregivers so we can help those we love.
“She has Call-a-Bus, but there are so many stops along the way that a single, one-way trip can take over two hours and exhausts her,” added Murphy, who spent her savings and quit her job to care for her mother and now fears losing her part-time job. “There isn't any flexibility. Trips require pre-planning. Unfortunately, you can't schedule illnesses.”
“Being a caregiver is stressful, to say the least, so that is why any process to make it easier for caregivers to either find out what is available to them or to help in the independent hiring process is really important,” said Tara Renner, 56, of North Syracuse, who cared for her father until he died earlier this year and still cares for her mother. “I am eternally grateful that we were lucky enough to keep Dad at home versus putting him in a nursing home.
“But for three months I averaged three hours of sleep a night, and it was very difficult and very time-consuming to hire aides who were able to help me meet my father’s care requirements. Due to the demands of caregiving, I haven’t been able to look for work. My COBRA health insurance coverage has run out, and being over 50, I know I will have more of a challenge in finding a new job.”
“Three generations of our family on both sides have been involved in caregiving for one another since 1978 - everything from transportation and financial and legal help to in-home and end-of-life care,” said Martha Ours of Liverpool. “During this time, some welcome community services have evolved, such as Hospice of CNY, Elder Daycare Facilities and respite services, but EISEP (Expanded In-Home Services for the Elderly) and CSE (Community Services for the Elderly) programs have long waiting lists. New York should do better.”
“Every day family caregivers across New York state struggle with issues like providing personal care for loved ones,” said Ann Marie Cook, Director of the NYS Caregiving & Respite Coalition and President/CEO of Lifespan of Greater Rochester. “Every day they worry about aging parents. Every day they hope to avoid the crisis that will tip the delicate balance of independence versus dependence for aging family members. As is clear from the listening tour, they need more guidance, more information, and most of all, they need our help keeping loved ones at home.”
“We heard the voices of New York's caregivers and their needs are clear,” said Igal Jellinek, Executive Director of the Council of Senior Centers and Services of New York City, Inc. “Both caregivers and their loved ones need meaningful support, guidance and resources to ensure that older people can age with dignity in New York State. We need to act now to address this growing demographic.”
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