Longstanding Proposal for Caregiver Taskforce Revived

People caring for aging friends and family are burning out; the Legislature is looking into getting them some respite

Home care
New Jersey lawmakers will continue their quest to establish an independent task force to examine support services for unpaid caregivers, a group of more than a million residents who are expected to play an increasingly important role in the years to come.

On Thursday, the Assembly Health Committee will review Assembly and Senate versions of the plan, which would create a temporary nine-member panel to review and make recommendations on how to better help these friends and family members who provide critical daily services to elderly and disabled residents living independently.

A version of the proposal, originally introduced in December 2014, passed both houses with overwhelming support during past legislative session, but Gov. Chris Christie declined to sign it into law. With the current session set to expire in roughly six weeks, the clock is now ticking on the latest draft of the bill.

While the state has made progress in supporting these caregivers, AARP and other advocates insist more can be done. Most seniors who receive services at home depend on these unpaid providers, AARP said, and — given the large aging population — the number of adults who will need this daily help is expected to double by 2020, according to the bill. The work is particularly important given the growing focus on independent living and aging-in-place.

The right direction

Evelyn Liebman, AARP’s advocacy director, said the state is moving in the right direction, “but we continue to have many opportunities for improvement” to create a better system of long-term care. “A caregiver task force that will help determine how best to support New Jersey’s army of family caregivers is vital to the health and safety of our loved ones, their caregivers, and to our healthcare system as a whole,” she said.

Advocates said 1.1 million to 1.75 million Garden State residents are currently serving in this role and they provide $13 billion in care annually, helping vulnerable citizens to remain independent and avoid more costly institutions, like nursing homes and rehabilitation facilities. The work ranges from assistance with daily activities like bathing, dressing, and preparing or eating meals, to medical support services like monitoring medication and vital signs, or caring for wounds.

Taking its toll

Despite its value, this work takes a serious toll on the caregivers themselves, advocates note. Most are in their 40s and 50s, work full time, and have little, if any, medical training or professional support. This role, which typically can absorb as much as 20 hours a week, can cost caregivers as much as $660,000 in lost wages, benefits, and Social Security over their lifetime.

“Caregivers face an untold number of challenges in today’s society,” said Assemblywoman Pamela Lampitt (D-Camden), who has championed the bill. “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.”

Liebman said one recent advance involves the 2015 CARE Act, which required hospitals to better coordinate with family or other caregivers when discharging elderly patients. The goal is to improve aftercare and reduce the chance for hospital re-admission; as many as one in eight Medicare patients who are discharged from an acute care facility return within a month, AARP notes.

The state Department of Human Services, which oversees programs for elderly and disabled residents, also offers and coordinates some support services. The Division of Disability Services can help individuals with disabilities and their caregivers to connect with technology, services, and other assistance, and the Division on Aging can connect people with respite care and other supports provided by county offices.

However, New Jersey ranked 22nd nationwide in terms of caregiver supports, according to a 2014 report card issued by AARP, The Commonwealth Fund, and the Scan Foundation. The state’s status improved to 16th in the 2017 report card, with positive changes in several categories, but little progress had been made in supporting working caregivers or their transportation needs.

Pulling together to find solutions

To address these concerns, the bill (A-1463), led by Lampitt and Assemblywoman Gabriela Mosquera (D-Gloucester), would pull together the DHS commissioner with experts from AARP, the regional Alzheimer’s association chapter, the Arc of New Jersey, which advocates for individuals with disabilities, the National Alliance on Mental Illness New Jersey, and a handful of public members, including several caregivers, to be appointed by the governor.

The task force would be required to gear up and hold its first meeting within a month, with assistance from a staffer at DHS, and compile a list of all state programs and services to support and assist caregivers. It must also create a survey for caregivers and collect testimony from these providers regarding their experiences.

Within a year, the panel would need to report to the Legislature and governor, presenting its findings and recommendations for program changes or improvements. A month later, it would disband. A fiscal estimate generated by the nonpartisan Office of Legislative Services predicted the group’s work would cost about $120,000 over its 13-month existence.

If approved by the health committee Thursday, the measure would still need to clear the full Assembly — and only a handful of voting sessions remain before this legislative session expires in mid-January. The Senate version of the bill, led by Sen. Joseph Vitale (D-Middlesex) and the late-Sen. Jim Whelan, (D-Atlantic), sailed through that house in June.