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.
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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.
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.
“The services of home care aides are really, really valuable for family caregivers.”
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.
“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
A superior court judge ruled on Dec. 2 that Washington State owes in-home caregivers nearly $100 million in back pay and interest.
