When Tara Renner’s father was diagnosed with cancer, it was a hard enough blow.
“My dad was diagnosed in early June with several brain tumors, and we were told it was a terminal situation and we needed to get Hospice involved,” Renner said. “I live in North Syracuse, and I basically moved to [my parents’] house in Skaneateles to take care of him. I was living at their house to be there every night.”
According to the AARP of New York, the state needs to take the following steps to ease the coming crisis for caregivers:
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.
Even with Renner, 56, to care for her frail parents — in addition to her father, her mother is confined to a wheelchair, and her sister is disabled — additional caretakers had to be hired to provide the assistance the family needed. And that was when the real struggle started.
“If someone came home from the hospital and needed help right away, it would be almost impossible. It took us almost a month to do it,” Renner said. “We had days covered by two agencies. I can’t imagine somebody needing it right away. It took three agencies to get coverage 24/7. And we were lucky enough to be able to afford it. Not everyone can. It’s not cheap. And we were looking at short-term people. Others are looking at years. It’s unimaginable.”
The lack of available help from senior care agencies is just one of the reasons New York state was ranked 48th in a 2011 national report by AARP’s Public Policy Institute, the Commonwealth Fund and the SCAN Foundation out of 50 states with regard to support for its family caregivers. Caregivers also face extensive waiting lists for adult day care programs and rehab facilities, a lack of support for in the work environment, limited or no access to transportation and inadequate informational resources regarding care options for their loved ones. And with the Baby Boomer generation moving into their golden years, the problem is only going to get worse.
That’s why the AARP of New York is asking Gov. Andrew Cuomo and the state legislature to prioritize funding for the New York State Office for the Aging. They’ve also released a report, “Caregivers in Crisis: Why New York Must Act,” outlining the steps the state must take in order to rectify the problem before it spirals further out of control (see breakout).
“What we think we need is a down payment to help New York state caregivers,” said Bill Ferris, AARP New York state legislative representative. “We want [Gov. Cuomo] to put in his executive budget, which he will put out the third week of January, $26 million to help eliminate the waiting list of 7,000 people waiting to access four programs that assist the elderly and caregivers for the elderly.”
Ferris said the New York State Office for the Aging administers several programs — namely social adult day care, Meals on Wheels programs, transitional services and EISEP, which include non-medical in-home services such as housekeeping, personal care, respite, case management, and related services (such as emergency response systems) — which are not paid for by Medicaid. Due to budget cuts, these programs are suffering, according to AARP constituents statewide.
“These caregiving programs administered by the state have been neglected for years,” Ferris said. “The Cuomo administration’s focus, and rightfully so, has been on the Medicaid programs, so the non-Medicaid programs have been neglected. Now that the house is in order, we have to get the non-Medicaid programs and the community care services in order so that we can save money for the future.”
Ferris said it’s especially important to get the word to Cuomo and state legislators now.
“Gov. Cuomo’s staff is putting together his executive budget proposal as we speak, so that’s why there’s a sense of immediacy here,” he said.
Ferris pointed out that, in addition to the obvious emotional argument associated with helping caregivers, it makes financial sense, too.
“There’s a fiscal argument to this, as well. When there are no services available, when there’s a waiting list, a family has no choice what do with their frail elderly but to put them into a nursing home, and the majority of those are paid for by Medicaid, which is funded by the taxpayer,” he said. “So it’s in the best interest of Gov. Cuomo and the taxpayer to put this into the budget. Four million families are maintaining some kind of home care. When they’re backed into a corner and they don’t have a choice, it’s paid for by you and I.”
Renner said she and her family were lucky to be able to keep her father at home, but she recognized that not everyone had the resources to do so. She noted that there are many people like her who are just one emergency away from being a full-time caregiver.
“Everybody out there knows someone who’s a caregiver or who has been a caregiver or who thinks that they will be a caregiver at some stage,” Renner said. “From my perspective, I never really thought about it. I was always going out to my parents’ to help with little things like changing light bulbs or doing housework, but I never thought of myself as a caregiver until I had to do it full-time. I don’t think a lot of people think of themselves in that position until it gets to a more urgent status.”
Renner was also eager to see another aspect of the AARP’s platform enacted: the Community Care Navigator program, which would help direct caregivers to available help, support and services for their loved ones.
“Finding someone through an agency was a lot of legwork,” she said. “If there was some sort of pamphlet or website the state could provide in cases like these with steps to take, it would be very helpful.”
Though it was one of the most stressful times of her life, Renner, like the millions of other caregivers across the state and the nation, said she would never give up the opportunity to take care of her father.
“I would do it again in a heartbeat,” she said. “He was there for me all my life. Of course I’d be there for him. I’d be there for anyone I love.”
Sarah Hall is the editor of the Eagle Star-Review and the Baldwinsville Messenger. The 2012 winner of the Syracuse Press Club's Selwyn Kershaw Professional Standards Award, she has been with Eagle Newspapers since 2006. She is a Liverpool native.