Neil Johnson, Executive Director, MN HomeCare Association

Neil Johnson, executive director of the Minnesota HomeCare Association, writes about the need to invest in our home care workforce.

As state decision-makers look for ways to create new jobs in a market with unrelenting unemployment, they may be overlooking ones that are hiding in plain sight.

According to the Minnesota Department of Employment and Economic Development, the top three job vacancies in the state are registered nurses, personal care assistants, and home health aides. The job category at the top of the list varies by region, but all three categories are consistently in the top three.

One could make the case that home care is the economic engine of many Minnesota communities. Over 70,000 Minnesotans of all ages currently receive home care services; this service sector accounts for 200,000 jobs in the state. It’s a growth industry that impacts far more people than hospitals or nursing homes and is sure to be even more in demand as over 78 million Baby Boomers approach retirement.

The Invisible Industry

Yet home care is an invisible industry. Unlike hospitals or long-term care facilities, there are no brick-and-mortar buildings to see and no high-profile fundraising drives. By contrast, home health aides, skilled nurses, and personal care assistants quietly go about their work in the privacy of clients’ homes.

That’s why even though home care is both cost-efficient and patient-preferred, reimbursement rates from the state fall short of the actual value of services provided.

Gov. Tim Pawlenty’s latest $370 million Health and Human Services budget includes a 2.5 percent cut in pay for home care aides and personal care assistants, putting wages for these jobs even further behind the eight ball. Lower wages will inevitably make it harder for families to find caregivers.

Robust Home Care Industry Saves Money and Time

Yet home care saves taxpayer money by being a viable alternative to more costly care at in-patient facilities. It’s also been proven to prevent unnecessary or prolonged “revolving door” hospital stays and emergency room visits for those recuperating from illness or surgery.

Not many people realize that eldercare now accounts for more lost work hours than childcare. The average length of family caregiving is 4.3 years. This is while these family members work full time at their own jobs. So if professional home care services aren’t available, there will be a negative economic ripple effect on businesses large and small.

Already, one-fifth of today’s workers are elder caregivers. Demographic trends indicate that more and more employees of all ages will assume the role of family caregiver for our increasingly old population.

The stats tell the story: in 2004, there were 36.3 million people 65+ in the U.S., or 12 percent of the population. By 2030, this number is expected to increase to at least 20 percent of the population, or about 71.5 million older Americans.

Additionally, home care is the preferred care choice for 95 percent of seniors recently polled by AARP.

The burgeoning need for home care services is not going to lessen. Home care offers a win-win solution of needed jobs and cost-effective health care that we can’t afford not to see.

Neil Johnson is the executive director of Minnesota HomeCare Association, the statewide voice for the home care industry. Contact him at njohnson@mnhomecare.org. Listen to an intro how-to audio about home care on: www.mnhomecare.org.

Working family caregivers potentially cost U.S. employers an estimated $13.4 billion a year — or possibly more, if the employee provides care to a spouse or younger family member.

“This report highlights the tremendous economic cost to our nation due to the toll that family caregiving takes. This cost is directly linked to the inadequacy of our current eldercare services programs and the instability in our direct-care workforce,” said PHI National Policy Director Steve Edelstein.

“Over the coming decade, this cost will grow geometrically unless we take steps now to build an adequate workforce to meet both the current and growing future demand for long-term services and supports,” he said.

The study, entitled “Working Caregivers and Employer Health Care Costs: New Insights and Innovations for Reducing Health Care Costs for Employers,” examines the relationship between family caregiving, caregivers’ health status, and employer health costs.

Corporate Eldercare in Tandem with Wellness Programs

The report concludes with the recommendation to supplement corporate eldercare services with corporate wellness programs to benefit both employees and employers.

Corporate eldercare services are typically offered through Employee Assistance Programs that provide information and referral services to eldercare resources in the community, including respite care, home care, and other services and supports. These services are declining, according to the Society for Human Resource Management. Only 11 percent of corporations provided this service in 2009, down from 26 percent in 2006.

Corporate wellness programs, by contrast, are on the rise because they help to hold down health care costs, the researchers report. Among their suggestions for corporate wellness programs, which are designed to reduce stress and prevent disease, is to develop decision support systems that provide information about the best services for caregivers and their older relatives.

Family Caregiving Takes a Toll

The joint report, released in February 2010 by the National Alliance for Caregiving, the University of Pittsburgh Institute on Aging, and MetLife Mature Market Institute, also found that employees providing eldercare were more likely to report:

• fair or poor health in general
• depression, diabetes, hypertension, or pulmonary disease, regardless of age, gender and work type
• having greater health risk behaviors such as smoking and higher alcohol use
• finding it more difficult than non-caregivers to take care of their own health or participate in preventive screenings
• missed days of work

– by Deane Beebe

“The broad spectrum of interests represented at the symposium demonstrates the growing attention being paid to long-term care, particularly the direct-care workers and family members who together provide the vast majority of services to elders and people with disabilities,” said PHI President Steven Dawson.

Howard Gleckman, author of Caring for Our Parents and a senior research associate at the Urban Institute, moderated the two-panel forum, during which participants discussed the challenges that family and paid caregivers face and how the policies under consideration in Congress could address these needs.

Describing the state of home health care in the U.S., Gleckman noted that it is “more dangerous to be a home health aide than it is to be a coal miner.”

Ancil Alexander, a home care worker with Cooperative Home Care Associates in New York, spoke about the challenges of her job (see video below),  and, at one point, asked the audience, “How can you be a home care giver — taking care of sick people — when we ourselves don’t have coverage?”

Low Wages Cited

The strain that many paid home care workers experience results from their low wages. According to a Genworth 2008 white paper, A Workforce to Care for our Aging (pdf), 19 percent of home care aides and 16 percent of nursing home aides are compensated at a level insufficient for them to rise above the poverty line.

Panelist Suzanne Mintz, president and co-founder of the National Family Caregivers Association, said:

The wellbeing of family caregivers and direct-care workers are inextricably tied together. As the wages of the latter go up, it makes it that much harder for family caregivers to purchase the services they need. The solution to this ironic situation is that easing the financial strain on family caregivers must go hand in hand with raising the wages of direct-care workers.

Gleckman said it is becoming critical that society acknowledge and address the stresses being placed on caregivers, most of whom have no formal training in providing care. Eighty percent of long-term caregiving in the U.S. is done by informal caregivers, often family members or close friends who receive no financial compensation. Genworth reports that a typical working family caregiver loses approximately $110 per day in wages and health benefits due to caregiving responsibilities.

The second panel, entitled “Policy Options for Family and Paid Long-Term Caregivers,” featured staff from the the Senate Committee on Health, Education, and Pensions, and from the offices of Sen. John Kerry (D-MA), Sen. Barbara Boxer (D-CA), Sen. Herb Kohl (D-WI), Sen. Blanche Lincoln (D-AR), and Rep. Steve Israel (D-NY).

Nine organizations assisted Genworth Financial in organizing the symposium, including PHI, AARP, Alzheimer’s Association, American Health Care Association, American Seniors Housing Association, Foundation for the Future of Aging, National Alliance for Caregiving, National Family Caregivers Association, and the SCAN Foundation.

Carol Levine

In a recent commentary for New American Media, Carol Levine, director of the Families and Health Care Project at the United Hospital Fund in New York City, says current efforts to reform the U.S. health care system could overwhelm family caregivers if lawmakers fail to pair insurance reform with increased access to long-term care and an improved delivery system.

“[A]ccess to insurance alone will not solve problems of mismatched financial incentives, patient safety, fragmentation, inadequate primary and geriatric care and health disparities, such as between white and ethnic groups,” Levine states. “Without reforming the delivery system, insurance reform will be a half-way measure” (“Health Care ‘Reform’ Could Overwhelm Family Caregivers,” Aug. 13).

She also describes the proposed CLASS Act as “a limited solution at best.”

Speaking both from her professional experience and her life experience as a family caregiver, she expresses grave concern over the lack of support for such caregivers in the health reform debate. While she praises the national movement toward balancing nursing homes with more home and community-based services, she also points out that this system as currently constituted “is often a patchwork of programs administered by different authorities using different eligibility criteria and levels of service,” and that it depends largely on the “flawed assumption” that family members will be able to assume most of the care duties indefinitely.

PHI Director of Policy Research Dorie Seavey, who has explored the intersection (pdf) of paid care and family caregiving, agrees with Levine. She notes, “We cannot continue to think of family caregiving and paid caregiving as separate systems. These systems are highly dependent on one another, and family caregivers need a stable, well-trained paid workforce to help them manage the care of loved ones.”

Referring to the “Retooling for an Aging America” report’s prescription that “the definition of the health care workforce must be expanded to include everyone involved in a patient’s care,” Levine derides lawmakers for devaluing the status of long-term care by clinging to “outdated assumptions and standards,” in particular, the idea that it should be regarded as an informal domestic chore — “the traditional dismissive view of women’s work.”

Injured vet Tammy Duckworth

We’ve long been warned how unprepared this country is for the number of young men and women who will return home from the Iraq War with mental and physical disabilities.

American military casualties in Iraq and Afghanistan have exceeded 28,000. Statistics show that 80 percent of the wounded are in the 18-30 age range and face an entire lifetime of recovery, adding to an already strained long-term care system that lacks a stable, well-trained workforce.

It’s a strange outcome of improved battlefield medicine, which has saved many combatants, but has left many with brain and spinal cord injuries and other long-term care needs.

Injured Iraq War veterans like Tammy Duckworth of Illinois, whose severe combat wounds cost her both her legs, have criticized the Bush Administration for being unprepared for the number of veterans who require long-term care.

The hardest hit by it, perhaps, is the family caregiver, whose life is also forever changed. Last week, the New York Times profiled a young woman in Colorado who is now caring for her 27-year-old husband, who was shot in Iraq six weeks after their wedding and is now quadriplegic.

Tracy Keil quit her job to care for her husband. She hired home-care workers to help her from a service paid for by the government, but after going through four workers in nine months, she is looking for a different solution.

She joins other veterans’ families who want to be paid for caregiving. Proposed legislation would allow families of soldiers with traumatic brain injuries to be paid for their caretaking after training and certification by the Veterans Affairs Department.

The Veterans Affairs Department, however, opposed the legislation, saying it would be liable if a veteran was injured by a family member trained by the department.

But that’s not the real issue, says Henry Claypool, ICS policy director. The VA knows that families will provide this care whether they get paid or not.

“Saying liability is a workman’s comp issue is disingenuous. They know they would do the work anyway,” says Claypool.

If the VA would give families of veterans the money, says Claypool, people like Keil will have more control over hiring and will give themselves a much-needed break from caregiving by handpicking workers.

But the situation is more complex than just handing over money, says Claypool. The VA also needs to make services available in the future, should a family’s situation change.

Keil gave up her job and clearly wants to be taking care of her husband. But, Claypool points out, “the reality is she’s young. The reality is that this is new. This stuff changes an awful lot. They were married in 2007. Six weeks later, this guy was paralyzed.”

The questions remain: In ten years, is this arrangement going to be stable? Is she still going to be able to play this role as care coordinator? What’s going to be there to support them?

To address the changing needs of people with disabilities and their family members, PHI advocates for a comprehensive system of supports that includes paying family caregivers when appropriate and ensuring access to well-trained, professional direct-care workers. For more information, see PHI National Policy Agenda: Consumer Direction & Family Caregiving (pdf) .