Bill to focus on caregiving for NC’s older adults struggles for life - North Carolina Health News
By Thomas Goldsmith
Rep. Donna White (R-Clayton) spoke bluntly when asked this week about the prospects for the bill she co-sponsored to create a Task Force on Aging centered on increasingly tough issues for caregivers.
The enabling legislation, House Bill 915, received a favorable report on April 30 from the House Committee on Homelessness, Foster Care and Dependency but stalled in the powerful Rules Committee before failing to meet a legislative deadline earlier this month.
So, is it dead?
“I am never going to accept ‘dead’ until I truly smell the corpse,” White said at the General Assembly. “I’m going to keep working and I think there are still some possibilities there.”
The bill, which recommends forming a 17-member task force, with no dedicated cost to taxpayers, could survive if budget writers insert it into the state’s annual spending plan as a policy matter, said a “keenly disappointed” White.
Under the measure, members serving four-year terms would be appointed by legislative and executive-branch leaders, from state government and from nonprofits such as NC AARP, the state Coalition on Aging, and NC NAMI. Each legislative chamber would appoint a family caregiver and the governor would name two public members. (Note: AARP is a NC Health News sponsor)
“There are 1.28 million family caregivers in North Carolina,” White said at a hearing on the bill. “We do not have the resources in this state to pay for every caregiver and for all the things that they do.”
‘She would bite’
When White talks about taking care of an older relative, she speaks from personal, often wrenching experience. Her training as a registered nurse became vital preparation when her mother experienced debilitating dementia in 2004 and White took the role of primary caregiver.
“She would reach up to me and slap me, she put fingerprints in my arm, she would bite me,” a sometimes emotional White told committee members about caring for her mother.
“The simple act of transferring her from a wheelchair to a bed threw her into a dementia fit. Then I would get her in the bed and would lean over and she would smile at me, and I would kiss her on the forehead and tell her how much I loved her.”
A former staffer of the state Division of Aging and Adult Services, White has worked to draw attention to North Carolina’s burgeoning older population since her election from Johnston County in 2016. In the current session, she’s serving as appropriations chair for Health and Human Services and chair of Health Policy, as well as a vice-chair for the House Appropriations Committee.
The task force would be charged with weighing needs, supports and services for North Carolina family caregivers of people older than 65 or with disabilities; examining policies and training affecting caregivers; and determining the direct costs of caregiving as well as its effects on employees and businesses.
Presiding committee chair Rep. Larry Pittman (R-Concord) quoted Scripture in recommending passage, which was unanimous.
He quoted Proverbs 21:13: “He who closes his ears to the cries of the poor will himself cry out and not be heard.”
The panel, by design, won’t be called a study committee.
“The Senate doesn’t like the word ‘study,’ and we’re not going to let this bill die,” White said.
“It’s called a task force, and if you are fortunate enough to be appointed, you are going to work.”
Gerry Cohen, a former staffer and unofficial historian of the General Assembly, said he has told those trying to understand the body that such panels come in three kinds.
“One is that it was a complicated issue and it needed experts,” Cohen said. “Two is to build consensus. And the third was to say, ‘We are going to study it so we won’t have to deal with it.’”
The House established a committee on aging, not the one in existence today, beginning in 1977 when it faced several issues that remain on the table.
Committees upon committees
Problems of older people in the late 1970s included the loss of a work role, blamed on compulsory retirement; reduction in income and purchasing power; age segregation and isolation, referring to long-term and institutional care; and personal and social isolation, referring to those “living alone without appropriate community services reaching into the home.”
A 1978 report recalled better days in the past, those of the authors’ grandparents’ grandparents, who would have lived in the early 19th century:
“Living often in three-generation families, they worked at their crafts or trades as long as they were physically able,” the authors wrote. “They lived fifty or sixty years, benefited from personalized though limited health care, and died natural deaths at home.
“Children and others in a family were regarded legally and socially as responsible for the older members of the family. They fulfilled their filial duties, expecting to be cared for in return by their own offspring.”
In 1987, the General Assembly created the Study Commission on Aging, which had some notable successes before it was legislated out of existence in 2011.
For example, the Study Commission on Aging in 2008 recommended an additional $2.5 million for the state’s Home and Community Care Block Grant, which pays for in-home care, transportation, home-delivered meals and other services designed to allow older people to age in place. Budget writers dedicated $2 million to the fund, the largest amount in recent years, though a much larger figure is proposed by the House for 2019-2020.
The same year, budget writers put $500,000 in non-recurring funds into Project CARE, a respite program for Caregivers Running on Empty, another recommendation of the study commission.