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An analysis of 6 million caregivers in California who provide services and supports to family members or friends found that those who are paid by Medi-Cal to assist low-income elders and people with disabilities were the most likely to be “economically insecure.”

In Hidden in Plain Sight: California’s Paid Medi-Cal Caregivers Are Vulnerable (pdf), researchers at the UCLA Center for Health Policy Research report that of the 290,000 Medi-Cal paid caregivers assisting family or friends — most of whom are likely to be employees of the In-Home Supportive Services (IHSS) program — more than half (57 percent) had incomes below or near the federal poverty level (average monthly income of $1,970).

The analysis also found that of these paid caregivers for Medi-Cal recipients:

• Nearly a third (31 percent) were uninsured;
• Nearly a third (31 percent) had food insecurity (reduced meal size or skipped meals due to lack of sufficient resources); and
• 16 percent were likely to stay in the job for less than a year, “suggesting a high client turnover.”

The researchers compared Medi-Cal paid caregivers to all paid caregivers, unpaid caregivers, and non-caregivers, finding that Medi-Cal paid caregivers fared the worst on the economic indicators.

Nearly half (49 percent) of all paid caregivers (450,000, which includes the Medi-Cal paid caregivers) in the study had poverty or near poverty incomes.

Little Pay for Hard Work

“Paid caregivers do a lot but get paid very little,” said Geoffrey Hoffman, the study’s lead author. “They play a critical and complex role caring for our aging or disabled parents, grandparents, friends, and neighbors yet can earn only a little more than minimum wage.

“When we talk about caregiving, we should be thinking not only of the supportive services we provide to older adults but also the vulnerable people providing those services,” said Hoffman, who added that proposed cuts to the IHSS program and the downsizing of the state’s Adult Day Health Care program will not only hurt consumers but “will also harm paid caregivers.”

“Of course, all of us promote the value of family members caring for one another through thick and thin,” said San Francisco IHSS Public Authority Executive Director Donna Calame, who is also a PHI board member. “What the larger public — and unfortunately many policymakers — do not understand is that paying family members the relatively low wages we do in IHSS keeps families together.

“Family members are not paid for things like cooking or cleaning the house,” Calame continued. “They are paid for doing things like bathing, dressing, or helping their loved one use the toilet. The average IHSS consumer uses about $1,500 per month. Parents caring for severely disabled children especially save the taxpayer from annual institutional costs of about $250,000-$300,000 per year. That IHSS pays family members is a humane and cost-effective use of public dollars.”

– by Deane Beebe

The Family Caregiver Alliance (FCA) has published Family Caregiving 2011: Year in Review (pdf), which is their first annual report to contain a chapter devoted entirely to direct-care workers.

“We included a section focused on the direct-care workforce to recognize the fact that these workers are an integral pillar of the long-term services and support system,” explained FCA Executive Director Kathy Kelly.

The report highlights key developments in 2011 that affect family caregivers, including legislative and policy changes, research focused on caregivers, and media coverage of family caregiving.

The FCA has also published two companion data summaries to accompany the report:

• 27 Things You May Not Know About Women and Caregiving
• 45 Facts About Family Caregivers (pdf)

– by Deane Beebe

Altarum Institute logo

The Altarum Institute is sponsoring a health policy forum roundtable entitled “The Last Word: Influential Women Discuss What Matters When Loved Ones Face Aging,” in Washington, D.C on April 13 from 2:00-4:30.

Prominent female authors who have written about their own experiences caring for a loved one at the end of life — including Ellen Goodman and Jane Gross — will be participating.

To learn more — including how to register for the event or the live webcast — see the conference website.

– by Deane Beebe

Minnesota can enact a proposed 20 percent cut on the wages of paid family caregivers, according to a March 23 ruling by a district judge.

The cuts would lower caregivers’ hourly wages to $9, from approximately $11, and could affect as many as 7,000 family caregivers who serve as personal care assistants (PCAs) to low-income relatives and receive payment through Medicaid.

Originally enacted by the state legislature last year to help close a $5 billion budget gap, the cuts are expected to save the state just $17 million if they take effect.

Last fall, after eight home care agencies filed suit against the state, Ramsey County District Judge Dale Lindman ruled to temporarily block the cuts from taking effect. In his March 23 decision, however, Lindman reversed his own decision, giving the cuts his stamp of approval.

Hope for Delayed Enforcement

Minnesota Governor Mark Dayton (D) has voiced opposition to the wage cuts, and advocates — including many home care agencies — hope he will delay their enforcement until the end of the current legislative session.

Tim Plant, the executive director of Healthstar Home Health in North St. Paul, told the Minnesota Star Tribune, “We disagree with the judge. The law requires unequal pay for equal work, and some of these PCAs are very low-income. They can’t afford the pay cut.”

Lindman, however, said that he agreed with the legislature’s assessment that the PCAs have “moral obligations” to care for their relatives, and would continue to do so despite being paid a lower wage.

The eight home care agencies say they plan to appeal Lindman’s decision.

– by Matthew Ozga

A superior court judge ruled on Dec. 2 that Washington State owes in-home caregivers nearly $100 million in back pay and interest.

The ruling could affect as many as 22,000 caregivers there, including home-care workers and paid family caregivers.

The workers filed a class action lawsuit against the state following its 2003 decision to reduce Medicaid payments by 15 percent to recipients who use live-in caregivers.

A 2007 State Supreme Court decision overturned the payment reduction, but did not compensate caregivers for the four years of lost earnings.

On Dec. 2, Superior Court Judge Thomas McPhee ruled that the state still had to pay caregivers a total of $95.6 million in back pay and interest for those four years.

The state plans to appeal McPhee’s decision.

– by Matthew Ozga

Suzanne Mintz

In recognition of National Family Caregivers Month, PHI interviewed Suzanne Mintz, president and CEO of the National Family Caregivers Association (NFCA), about the interconnection between family caregivers and direct-care workers.

Suzanne co-founded the NFCA in 1993, nearly 20 years after her husband Steven was diagnosed with multiple sclerosis.

Getting the diagnosis was “a huge wallop for us,” said Suzanne, who has been a caregiver to her husband ever since.

Over time, Steven has become increasingly disabled and is doing less for himself.

Suzanne says that she clearly remembers the day about seven years ago when they moved back into their home after six months of renovations to make it more accessible. She was transferring Steven from one chair to another when she “just lost it” and said “I cannot do this anymore. We have got to find help.”

Since then, Suzanne — like many family caregivers — has supplemented her caregiving for her husband with the long-term services and supports that home care workers provide.

_________

PHI: November is Family Caregiving Month, both a celebration of the hard work done by family caregivers and an effort to increase awareness and supports. I understand that there are a number of supports that family caregivers need, but can you talk specifically about the role of paid home care workers?

SM: Home care aides are critical players in the lives of family caregivers because when you are dealing with somebody with multiple chronic conditions and they need help with ADLs [activities of daily living], it’s really, really hard to do it on your own. The services of home care aides are really, really valuable for family caregivers.

November Is National Family Caregivers Month

 
President Obama has proclaimed November to be National Family Caregivers Month, a time to “pay tribute to the individuals throughout America who ensure the health and well-being of their relatives and loved ones.”

A recent NFCA survey of our members found that they are “higher burden” family caregivers, meaning that our members are the ones who really need help and are more likely to be using the services of home care aides.

We also found that spouses are the least likely group to get help. This is not new news; it’s been known for a while, but it was definitely corroborated with our findings.

PHI: What do you hear about home care aides from these “higher burden” caregivers?

SM: When people have aides whom they really like — who are doing a wonderful job — they can’t say enough good things about them. But there are a lot of times when the situation doesn’t work out and very often you hear family caregivers say, “I wish that that we could get high-quality aides on a regular basis and that these services could be covered — at least in part — by insurance.”

Of course in some states there is actually no training required for home care aides so it is not surprising that it runs the gamut. Quality across the board is not consistent.

PHI: You mentioned that there is widespread concern over insurance coverage.

SM: Yes, one thing that came up a lot in our survey was the concern about the lack of coverage for paid home care support. From a family caregiver’s perspective, we definitely need help with all of the activities that aides provide.

Yet the kinds of services that home care aides provide are not covered by Medicare or private insurance, unless associated with a hospital stay, and then it is only short-term coverage. So in order for family caregivers to utilize the services of home care aides or personal care attendants, it’s an out-of-pocket expense. Unfortunately, it’s not affordable for everybody.

Medicaid, which covers care for the very poor, only affects a small proportion of the population. Medicare and private insurance affect a lot more people. To help the majority of family caregivers, coverage would need to be provided through Medicare.

PHI: Do you find that family caregivers and the people for whom they care have a preference as to whether they want to hire a home care aide themselves or through an agency?

SM: It really depends on the family and the individual situation. Some families prefer one thing and some prefer the other. Each is different.

The help my husband gets is from outside the agency system. We are actually forced to do that — whether we want to or not. The help that Steven needs is provided through traditional home care aide services, but he also requires intermittent catheterization, which legally is not allowed to be provided by an aide. If you need both skilled and unskilled services, you have to create your own support team.

PHI: In your personal and professional experience through the years, are you hearing more about direct-care workers being included and acknowledged as integral members of the care team? For example, have you seen home care aides being consulted about the person they are caring for — not just by the family but by medical professionals themselves?

SM: I don’t think there is any question that an aide who spends time with her client has the opportunity to witness changes or altered behavior. Yet I think it is still difficult for aides to be formally considered a part of the health care team. We are still fighting for the family caregivers to be considered a part of the team. People talk about “person-centered” care, but we prefer “family-centered” care.

In some cases the aides have an intimate relationship with the patient. Their reporting should definitely be made available to the health care professionals. More likely than not, their reporting would be through the family caregiver.

If the family caregiver is working and the aide is with Mom or a spouse all day long, the aide knows a considerable amount and can see changes from day to day, and that information needs to be gathered. Part of the responsibility of the family caregiver is to gather that information in a way that can be presented when reporting changes about the patient. The home care aide knows about things from bowel movements to when her client has more difficulty feeding him or herself.

PHI: Do you think that better reporting — knowing what to look for, how to report observations, and who to report them to — is an area where home care aides could benefit from more training?

SM: Yes, more training would help. Family caregivers need to be trained, too. For instance, family caregivers need to learn to communicate effectively with health care professionals so that they are taken seriously. “Communicating Effectively” is actually the name of one of our training programs.

The aides require some type of communication training (pdf) as well. Not everyone has the same level of communication ability, from how to gather information and then report it both on paper and orally. I don’t think there is any question that they need training, but as you know there are some states that don’t require any training. That of course is where PHI comes in. You are doing great work.

PHI: Other thoughts?

SM: Aides, like everyone else, need access to health care. People need a living wage. The difficulties come in figuring out how to make the service affordable for the majority of Americans and providing the service provider — an aide or personal care attendant — with sufficient wages, training, and benefits.

– by Deane Beebe