Family members and others who serve as caregivers frequently play a central role in meeting the needs of people with disabilities, those with mental illnesses, and seniors. But there’s no one organization in New Jersey that gathers information on the work that caregivers perform, the services available to them, and the challenges they face.
State legislators are looking to change that.
The New Jersey Caregiver Task Force would gather information on the role of caregivers and make recommendations to the governor and Legislature on ways to improve or expand the services available to them.
Assemblywoman Pamela R. Lampitt (D-Burlington and Camden) is the primary Assembly sponsor of A-4026/S-2640, which would create the task force. She said the group could make it easier for an estimated 2 million caregivers in New Jersey to receive the support they need to keep their loved ones in their homes.
“We know that many of the caregivers give up time, they give up their financial resources, they give up days at work, they give up a significant amount for the support of their loved ones in their home,” Lampitt said.
Experts say New Jersey has room to improve the services provided to these residents. The state ranked 22nd nationally in support for family caregivers in 2014, according to a report] prepared by AARP and the SCAN Foundation that examined state performance in providing long-term services and support.
The report examined such factors as whether a state requires mandatory paid family leave and sick days and whether the family caregivers in a state rate themselves having relatively low levels of worry or stress, as well as having enough time and being well-rested.
“Family caregivers are the backbone of our long-term care system,” said Evelyn Liebman, associate state director for AARP New Jersey. She noted a national survey that found two-thirds of seniors who receive care outside of nursing homes rely entirely on family caregivers.
“Clearly we can be doing better and this task force will help point us in that direction, and identify the types of things that we can and should be doing better to support family caregivers and their loved ones,” Liebman said after noting the state’s ranking.
The task force would identify services available to support caregivers and survey them to create a snapshot of this population, including the total number in each region, average age, average time they spend each week engaged in caregiving, and nature and severity of illnesses or conditions suffered by the persons being taken care of.
In addition, the task force would solicit testimony from caregivers on a variety of areas, including their work; whether they’re able to delegate tasks; whether there are sufficient programs to train caregivers; and the cost of caregiving.
A year after the task force launches, it would be required to submit its findings to the governor and Legislature and make recommendations for new laws, regulations, or programs,
A total of nine members would make up the task force: the state Department of Human Services commissioner; leaders of AARP’s New Jersey chapter; Arc of New Jersey; National Alliance of Mental Illness New Jersey; Alzheimer’s Association Greater New Jersey Chapter; and three caregivers appointed by the governor. The caregivers must include people who provide care for someone with a disability, one with mental illness, and a senior.
Arc of New Jersey governmental affairs director Sharon Levine said one of the most important things that the task force can do is connect caregivers with services that already exist.
“You know, a big problem we see is people now knowing what they’re entitled to, or what’s available to them, and they don’t know how to access things,” Levine said. Her organization advocates for and provides services to residents with developmental and intellectual disabilities.
Levine described the bill as “important recognition of the hard work that caregivers do and the challenges that they face.”
“While caregiving can be very rewarding, it also means sometimes sacrificing career aspirations or a person’s own personal health for the wellbeing of the person they’re caring for,” Levine said.
The Assembly Health and Senior Services Committee released the bill last month. The Senate passed it unanimously in June.