Caregivers Flying Blind in Providing Complex Medical and Nursing Care

Published in the Woonsocket Call on April 21, 2019

Half of the nation’s 40 million family caregivers are performing intense and complicated medical and nursing tasks, managing multiple health conditions for their family members and friends, says a newly published AARP report.

AARP’s special report, “Home Alone Revisited: Family Caregivers Providing Complex Care,” released April 17, 2019, takes a close look at specific medical and nursing tasks (including giving injections, preparing special diets, managing tube feedings and even handling medical equipment) that family caregivers are currently doing. It’s a follow-up report to AARP’s 2012 Home Alone Study that took the first in-depth look at how caregivers managed providing complex medical and nursing care that was formerly offered by trained professionals.

Changes in the Health Care System Can Support Family Caregivers

“This report shows the extent of complex tasks that millions of family caregivers are providing every day. They are largely alone in learning how to perform these tasks,” said Susan Reinhard, RN, Ph.D., Senior vice president and Director, AARP Policy Institute, in a statement announcing the release of the a 56-page report. “About half of family caregivers are worried about making a mistake. We need to do a lot more across the health care system—with providers and hospitals—to help support these family caregivers,” says Reinhard.

Adds Rani E. Snyder, program director at The John A. Hartford Foundation, “Family caregivers are the linchpin in our health care system, particularly for older adults,” “This study shines new light on the diversity of family caregivers performing complex tasks—from men to millennials to multicultural populations—and is a rallying cry for an all hands-on-deck approach to creating age-friendly health systems that better support and prepare these often forgotten members of the health care team.”

The new statistics in this report shed more light on the demands of family caregiving,” said AARP Rhode Island State Director Kathleen Connell, a former nurse. “These described caregiving responsibilities sound like a task list for a team of home nurses, aides, dieticians, physical therapists and personal drivers who work without weekends off, much less vacations. Is there any question that people worry about making a mistake that compounds existing issues?,” she says.

“The takeaway is quite clear,” Connell added. “Caregiving is stressful and we need to expand efforts to provide assistance. And it’s a very big ‘we’ that I am speaking of. Families need to help out and share more responsibilities as well as offer respite for primary caregivers. Neighbors and extended family also can lend a hand. And we need government to continue to provide assistance through legislation that supports family caregivers. Caregiving responsibilities can be both daunting and exhausting. It’s the new reality. The good news is that as we raise awareness we can work together to improve the lives of caregivers, “ says Connell.

A Sampling of the AARP Report’s Findings

AARP’s Home Alone Revised Report report found that almost half of the caregiver respondents (48 percent) prepare special diets multiple times per day. Preparing these meals often involved taking precise measurements, following specific dietary guidelines, constant monitoring, and the use of special equipment for preparation and feeding.

Thirty percent of the respondents say preparing special diets are hard to manage, this being more challenging to men. Younger caregivers found it more difficult to manage this task than older caregivers.

The caregivers also reported that 54 percent of the survey’s respondents say they manage incontinence multiple times a day. Most say managing incontinence is more difficult than managing medications, helping with assistive devices and performing wound care. Seventy-six percent say they learned how to manage incontinence on their own. More than one in four would appreciate having assistance from another person to help.

According to AARP’s report, 70 percent of these caregivers are dealing with the emotional stress of managing pain relief in the middle of a national opioid crisis. More than four in 10 expressed concerns about giving the optimal dose. About four in 10 faced difficulties in controlling the pain of the care recipient.

Finally, 51 percent of the survey respondents assisted with canes, walkers, and other mobility devices while over a third (37 percent) dealt with wound care.

The researchers conclude that “uncomplicated world of ‘informal’ caregiving” no longer applies” to the nation’s caregivers. “In the current health care environment, it is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist,” say the researchers,” they say.

AARP’s Home Alone Revised Report is a must read for Congress and state lawmakers who can easily address the challenges caregivers face when providing medically complex care by crafting policies and programs that will provide support and resources to the nation’s growing number of caregivers.

This caregiving issue might be a good one for the U.S. Senate Special Committee Aging to study.

A Final Note…

AARP gathered the study’s data through a nationally representative, population-based, online survey of 2,089 family caregivers. This study employed an oversampling of multicultural groups, taking a closer look at difficult tasks, and putting greater attention on available resources and outcomes. The study’s sampling strategy ensured multicultural representation and investigated generational differences. Additionally, the researchers also explored certain topics in greater depth, including special diets, incontinence, pain, and the impact of social isolation on the caregiver.

The AARP Home Alone Study is a special report from the Founders of the Home Alone Alliance℠ (AARP, United Hospital Fund, Family Caregiver Alliance and UC Davis-Betty Irene Moore School of Nursing). With funding from The John A. Hartford Foundation to the AARP Foundation, the study took an in-depth look at the specific medical/nursing tasks that family caregivers are doing.

To read the full report, go to: https://www.AARP.org/ppi/info-2018/home-alone-family-caregivers-providing-complex-chronic-care.html.

Note: Updated April 22, 2018…

Questions Raised About the State’s New Independent Provider Program

Published in the Woonsocket Call on July 15, 2018

In the waning days of the 2018 legislative session, the Rhode Island General Assembly passed legislation (S 2734 Sub A, H 7803 Sub A) that establishes in the Ocean State the “Independent Provider” (IP) model of at-home care, which allows consumers to hire and manage caregivers of their own choice while the state takes on certain responsibilities, such as setting caregivers’ wages, qualification standards and hours. With Gov. Gina M. Raimondo’s signature, the legislation became law on June 29th.

The enacted legislation is backed by the Rhode Island Campaign for Home Care Independence and Choice, a coalition that includes the Senior Agenda Coalition, RI Working Families Party, RI Organizing Project, District 1199 SEIU New England, RI AFL-CIO, Economic Progress Institute and the RI Chapter of the National Organization of Women (NOW). But, although on the losing side of the legislative debate the Rhode Island Partnership for Home Care continues to express its concern about the impact on the delivery by IPs to seniors and persons with disability.

Overwhelming Support on Smith Hill

The health care legislation, sponsored by Senate Majority Whip Maryellen Goodwin (D-Providence) and Rep. Christopher R. Blazejewski (D-Providence), easily passed both the House and Senate Chambers. The Senate Committee on Labor unanimously passed the measure by a 9-0 vote. By a count of 33-0, the legislation easily passed on the Senate floor. Meanwhile, in the other chamber, the House Committee of Finance put its stamp of approval on the measure by a vote of 13-0, with the legislation ultimately passing of the House floor by a vote of 60-11. But, because the House amended the bill (in committee and on the floor), it had to come back to the Senate for consideration again. The Senate vote on the revised legislation was 28-3.

In a statement announcing the new law, Goodwin and Blazejewski, say “By increasing both availability and quality of at-home care options, the new law’s ultimate goal is to move Rhode Island toward greater use of care in the community rather than in nursing facilities, since at-home care is both more comfortable and satisfying for consumers and less expensive than nursing facilities.”

“Presently, Rhode Island ranks 42nd in the nation in terms of investment in home care. Ninety percent of older Americans prefer home care. Not only is it more comfortable for seniors, it’s more cost-effective, as we’ve seen in states like Massachusetts. High-quality home care is what people want, and it saves money. I’m proud to support this effort to help make excellent home care available to more Rhode Islanders,” said Goodwin.

Adds, Blazejewski, “There is little question that people prefer to stay in their homes as long as possible. Particularly now, as the over-65 population in our state is rapidly expanding, Rhode Island must shift more of our long-term care resources toward supporting home care. Our legislation will help provide more options for home-based services, enhance access to them and establish standards that assure high-quality care.”

Hiring, Finding and Managing a Caregiver

Currently around 77 percent of Medicaid funding for long-term services and supports goes to nursing facility care rather than community-based care. Those who use community-based care generally go through agencies or find, hire and manage a caregiver on their own. This bill would create a third option.

Under the Independent Provider model, which has been in place in Massachusetts since 2008, consumers would still be the direct employer who determines when to hire or fire an employee, but the state would take on responsibilities for maintaining a registry of qualified caregivers, and would set parameters such as rates, qualifications and hours.

While the new law stipulates that they are not employees of the state, it would give home care workers the right to collectively bargain with the state over those parameters. Allowing them to organize would ensure that this otherwise dispersed workforce has a unified voice and a seat at the table to tackle the issues facing Rhode Island’s long term services and supports system, said the sponsors.

Consumers in states with independent provider models report higher levels of client satisfaction and autonomy, received more stable worker matches, improved medical outcomes, and reduced unmet need with agencies delivering fewer hours of care relative to the needs of the consumer.

In testimony supporting the health care legislation, Director Charles J. Fogarty, of Rhode Island’s Division of Elderly Affairs (DEA), told lawmakers that the health care legislation supports two goals of DEA, first it would enable elderly and disabled Rhode Islanders who are medically able to stay at home and second, it would address Rhode Island’s direct service provider workforce shortage.

Fogarty said it’s critical for older adults and people with disabilities to have access to the quality of care that is right for them. “In some cases, care from an independent provider they know and trust will best meet their needs to remain independent. In other cases, a home care agency will be the right fit. And for some, particularly those with complex medical needs, our quality nursing homes are the right option,” he said.

When quizzed asked about The Rhode Island Health Care Association’s position, Virginia Burke, President and CEO, recognized the value of home care in the state’s long-term care continuum but stressed that residents in the state’s nursing facilities “are too sick or impaired to mange at home.” She said, “Our only concern with this proposal is the suggestion that it could drain Medicaid funding from the frailest and most vulnerable among our elders in order to pay for a new Medicaid service. Surely our elders deserve good quality and compassionate care in all settings.”

Calling for More Education, State Oversight of IPs

While most who testified before the Senate and House panel hearings came to tout the benefits of bringing IP caregivers into the homes of older Rhode Islanders and persons with disabilities, Nicholas A. Oliver, Executive Director of the Rhode Island Partnership for Home Care, sees problems down the road and calls the new policy “duplicative and costly.”

In written testimony, if the legislation is passed Oliver warns that Rhode Island will be authorizing untrained and unsupervised paraprofessionals to deliver healthcare to the state’s most frail seniors without Department of Health oversight, without adherence to national accreditation standards for personal care attendant service delivery and without protections against fraud, waste and abuse.

Furthermore, his testimony expressed concern over the lack of oversight as to the quality of care provided by IPs to their older or disabled clients. Although the legislation called for supervision from the Director of Human Services (DHS), this state agency does not have the mandated legislative authority to investigate IPs to ensure that patient safety is met and the recipients of care are protected against harm in their homes. Nor does it require daily supervision for adherence to the patient’s authorized plan of care, he says, noting that is a requirement for licensed home health and hospice agencies.

Oliver observes that the legislation does not require IPs to receive the same level of intensive training that Certified Nursing Assistances (CNAs) receive from their home health care and hospice agencies. While the state requires all CNAs to complete 120 hours of initial training, pass a written and practical examination, become licensed by the Department of Health and maintain a license by completing a minimum of 12 hours of in-service training annually, the legislation only requires IPs to take three hours of generalized training and no continuing in-service training is required.

CNAs deliver the same personal care attendant services as the IPs but have a specific scope of practices that they must follow as regulated by the Department of Health and their licensure board while IPs do not have these requirements, says Oliver.

Finally, Oliver says that “to ensure quality of care [provided by home care and hospice agencies], CNAs are supervised by a registered nurse (RN) that is actively involved in the field and who is available to respond to both the patient’s and the CNA’s needs on-demand to reduce risk of patient injury, harm or declining health status and to reduce risk of CNA injury, harm or improper delivery of personal care.” IPs do not have this supervision., he says.

Safe guards are put in place by home health and hospice agencies to ensure the safety of patient and direct care staff, says Oliver, noting that these agencies are nationally accredited by The Joint Commission, the Community Health Accreditation Program (CHAP) or the Accreditation Commission for Health Care (ACHC) in partnership with the Department of Health for compliance of state and federal rules and regulations, as well as national clinical standards for personal care attendant service delivery.

With the Rhode Island General Assembly bringing IPs into the state’s health care delivery system, the state’s Executive Office of Health and Human Services, granted authority by the legislation to develop the program, might just consider establishing a Task Force of experts to closely monitor the progress of the new IP program’s implementation to ensure that quality of care is being provided and to make suggestions for legislative fixes next year if operational problems are identified. Unanticipated consequences of implementing new rules and regulations do happen and every effort should be state policy makers that this does will not happen in Rhode Island with the creation of the new IP program.

To watch Oliver talk about the Rhode Island Partnership for Home Care’s opposition to the enactment of IP legislation that would increase state involvement in the home care sector, go to http://m.golocalprov.com/live/nicholas-oliver.

AARP Gives Us a Snapshot of the Millennial Caregiver

Published in the Woonsocket Call on June 3, 2018

AARP’s latest caregiver report places the spotlight on the Millennial generation, those born between 1980 and 1996, ages 22 to 38 in 2018. “Millennials: The Emerging Generation of Family Caregivers,” using data based primarily from the 2015 Caregiving in the U.S. study, notes that one-in-four of the nearly 40 million family caregivers in America is now a Millennial.

The 11-page report, released by AARP’s Public Policy Institute on May 22, 2018, takes a look at the Millennial’s generational experiences and challenges as they support an aging parent, grandparent, friend or neighbor with basic living and medical needs.

“Caregiving responsibilities can have an impact on the futures of younger family caregivers, who are at a particular time in their lives when pivotal social and professional networks are being formed,” said Jean Accius, PhD, Vice President, AARP Public Policy Institute, in a statement with the report’s release. “We must consider the unique needs of millennial family caregivers and ensure that they are included in programs and have the support they need to care for themselves as well as their loved ones,” she says.

The Millennial Caregiver

According to the AARP report, Millennial caregivers are evenly split by gender but also the most diverse group of family caregivers to date, notes the report. More than 27 percent of the millennial caregivers are Hispanic/Latino, or 38 percent of all family caregivers among Hispanic/Latinos.

The AARP report notes that Millennials are the most diverse generation of family caregivers when compared to other generations. Eighteen percent are African-American/Black, or 34 percent of all African-American/Black family caregivers. Eight percent are Asian American/Pacific Islander, or 30 percent of all the AAPI family caregivers, says the report, noting that less than 44 percent are white, or 17 percent of all white family caregivers. Finally, twelve percent self-identify as LGBT, which makes them the largest portion of LGBT family caregivers (34 percent) than any other generation.

About half of the Millennial caregivers (44 percent) are single and never married while 33 percent are married. If this demographic trend continues a smaller family structure will make it more likely to have a caregiver when you need one.

More than half of the Millennial caregivers perform complex Activities of Daily Living (ADLs), including assisting a person to eat, bath, and to use the bathroom, along with medical nursing tasks, at a rate similar to older generations. But, nearly all Millennials help with one instrumental activity of daily living including helping a person to shop and prepare meals.

While Millennial caregivers are more likely than caregivers from other generations to be working, one in three earn less than $30,000 per year. These low-income individual’s higher out-of-pocket costs (about $ 6,800 per year) related to their caregiving role than those with higher salaries, says the AARP report.

As to education, Millennial caregivers have a high school diploma or has taken some college courses but not finished. But, one in three have a Bachelor’s Degree or higher.

According to the AARP report, 65 percent of the Millennial caregivers surveyed care for a parent or grandparent usually over age 50 and more than half are the only one in the family providing this support. However, these young caregivers are more likely to care for someone with a mental health or emotional issue — 33 percent compared to 18 percent of older caregivers. As a result, these younger caregivers will face higher emotional, physical and financial strains.

The AARP report notes that Millennials are the most likely of any generation to be a family caregiver and employed (about 73 percent). Sixty two percent of the boomers were employed and were caregivers. On top of spending an average of more than 20 hours a week (equivalent to a part-time job) in their caregiving duties, more than half of the Millennials worked full-time, over 40 hours a week. However, 26 percent spend more than 20 hours of week providing family care.

Although most Millennial caregivers seek out consumer information to assist them in their caregiving duties, usually from the internet and from a health care professional, the most frequent source of information is from other family members and friends.

While Millennial caregivers consume information at a higher rate, most (83 percent) want more information to supplement what they have. The tope areas include stress management (44 percent) and tips for coping with caregiving challenges (41 percent).

A Changing Workforce

Millennials are encountering workplace challenges because they are less understood by supervisors and managers than their older worker colleagues. More than half say their caregiving role affected their work in a significant way, says the AARP report. The most common impacts are going to work late or leaving early (39 percent) and cutting back on work hours (14 percent).

As we see the graying of America, it makes sense for employers to change their policies and benefits to become more family friendly to all caregivers, including Millennials, to allow them to balance their work with their caregiving activities.
It’s the right thing to do.

To read the full report, visit: https://www.aarp.org/ppi/info-2018/millennial-family-caregiving.html.

Visit http://www.aarp.org/caregiving for more resources and information on family caregiving, including AARP’s Prepare to Care Guides.