Helping the Helpers: Advocates Want Task Force for Unpaid Caregivers

Lilo H. Stainton | December 19, 2018 | Health Care
What’s needed to support family members and others who care for elderly or disabled loved ones?

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As nearly one in five New Jerseyans knows well, helping elderly or disabled loved ones with their daily lives — running errands, sorting mail, dressing and feeding, or monitoring complex medical equipment — can take a serious emotional and physical toll over time.

Now, pending the say-so of the governor, Trenton is about to explore what more it can do to help such caregivers.

The New Jersey Assembly unanimously approved legislation on Monday that would create a task force to evaluate how state government supports unpaid caregivers, learn what else is needed, and recommend policy and program changes in a report to the governor within a year.

The measure — first proposed and passed by lawmakers in 2014, but not signed by Republican former Gov. Chris Christie — cleared the state Senate without opposition in October and now awaits action from Gov. Phil Murphy, a Democrat. (Murphy’s office has a policy of not commenting on pending legislation.)

Sponsored by a trio of Democratic Assembly members — Pamela Lampitt, Gabriela Mosquera and Valerie Vainieri Huttle — the measure (S-959) is designed to ensure that state agencies are properly supporting the wide range of caregivers — including family members, friends, neighbors and others in the community — who work informally and for no pay to assist individuals at home or in other nonmedical facilities.

“Caregivers face an untold number of challenges in today’s society,” said Lampitt (D-Camden). “Many family caregivers are fulfilling these duties out of a sense of love and devotion, which can often make them feel anxious and overwhelmed. We want to make sure we are doing all we can to provide them with the resources and support they need to fill this critical role.”

A growing army of unpaid caregivers

According to the sponsors, an estimated 1.75 million Garden State residents are serving in this caregiver role. Their duties can range from cooking and cleaning to monitoring prescriptions and helping the individual walk or move about. Some, with limited or no formal training, also provide wound care, change colostomy bags, operate oxygen concentrators and use other medical equipment. The assistance they provide helps individuals remain more independent and can keep them out of more costly institutional care, the sponsors said.

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“Family caregivers are the backbone of our long-term care system,” said Crystal McDonald, associate advocacy director for AARP New Jersey, which has been working to support the bill over the years. “It’s critical that our state has the services and systems in place to support the army of family caregivers who will become even more vital to our health care system as a whole,” she said.

The need for these caregivers has grown in recent years as Medicaid rules have changed, enabling more individuals to access care at home. That need is expected to expand even more as the massive baby boom generation ages and needs additional help. According to federal data, 15.8 percent of the state’s population is over age 65 — about 1.3 million people — and this group is expected to double by 2050. And the number of adults who need daily help is projected to grow twofold by 2020, the bill notes.

Currently, the services caregivers provide in New Jersey have an annual value of more than $13 billion, according to AARP. Most caregivers are in their 40s and 50s and the work, which can quickly become like a part-time job or more, can cost them more than $600,000 in lost wages and missed Social Security benefits over a lifetime, the legislation notes. Previous unsuccessful campaigns to offset this burden have also called for a state tax credit of up to $675 annually for those providing this service.

“Anyone who’s ever found themselves in a caregiver role understands the toll it can take,” said Mosquera (D-Camden). “Lack of sleep, privacy and the time to fulfill one’s own needs can increase the risk for depression and anxiety.”

Advocates: NJ needs to do more

Caring for individuals with dementia or other cognitive or behavioral issues can be particularly taxing, the bill notes. Vainieri Huttle (D-Bergen) said the task force must take an “honest look” at how it can better help those struggling with these challenges.

“Studies show that the emotional and physical health of caregivers often suffers as a result of the stress and physical demands they encounter, particularly when it comes to caring for people with dementia or Alzheimer’s,” she said.

New Jersey ranked 16th nationwide in 2017 in terms of support for family caregivers — up from 22nd in 2014 — according to an annual scorecard published by national AARP groups, the Commonwealth Fund and a California-based organization focused on aging.

The scorecard report, which contained limited detail, found that the Garden State does well in some ways to support working caregivers. But it raised concern about transportation policies and limited use of models that involve person- or family-centered care, which is designed to better integrate caregivers in the process.

At present, there is no central “caregiver” agency in state government, but programs do exist to help relieve caregivers of certain responsibilities, if only in the short term. The Department of Human Services oversees programs for the elderly and disabled residents and offers, or coordinates, some support services to benefit those in support roles. Its Division of Disability Services helps individuals connect with technology, transportation and other services. And the DHS’s Division of Aging can link those in need with respite care and other programs offered by county agencies.

A survey of existing services

To address the concerns raised by advocates and caregivers, the legislation —sponsored by Sen. Joe Vitale (D-Middlesex) and Linda Greenstein (D-Mercer) in the upper house — requires the state to set up an 11-member task force to review the current array of state services to support caregivers, and to survey and gather testimony from those doing this work. It would then have 12 months to compile and submit to the governor a report with its findings and recommendations for policy changes.

The panel, which is set to dissolve a month after the report is submitted, would have limited support from the Department of Human Services and its members would be unpaid.

It would include the DHS commissioner or her designee, the AARP director, the head of the Home Care and Hospice Association of New Jersey, and representatives from leading organizations involved with Alzheimer’s and mental illness, as well as from groups providing services for individuals with disabilities, and other related conditions. The governor would appoint three public members, including one who is a caregiver.

“I hope this task force will take to heart the real-life experiences of caregivers so we can create a greater support network statewide,” Mosquera said.