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Caregivers in crisis: New York ranks 48th in support for family caregivers

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.”

What do caregivers need?

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.”

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