The Politics of Elder Care: An Ongoing Discussion of Stakeholders, Positions and Themes
Vice President Biden recently gave an introductory speech to the administration’s task force aimed at helping the middle class . And if his speech is any indication of what families caring for ill and disabled members can expect from the work of the Task Force they should brace themselves for great disappointment.
After reading about the task force. my hopes were up that after more than two decades of research documenting that the need for elder care far exceeds our present capacity to provide it, our government might finally be paying attention. For too long the excuse has been that if support were available the unpaid family caregivers would “come out of the woodwork” and expect the government to take over for them. Of course the so-called “woodwork” and “substitution” effects could not be demonstrated by research. The pseudo-economics behind the concepts were convenient hooks for policy makers and politicians who continued to argue against taking any action on family caregiving. The lack of alternatives and support to unpaid (and paid) caregivers is a looming social and economic disaster, and so far none of our political leaders have mustered up the courage to admit that it is happening.
In his remarks Biden did speak to the issue of elder care and at first framed it as a problem of affordability (it is much, much more problematic than that but affordable would be a nice start). You should know that this is a “trigger” issue for me so I’m hyperalert to anything politicians and advocates say or do about it. As an academic I study narratives about family caregiving but it is also personal (if it isn’t for you it will be soon, trust me). I was stunned by how the sum of Biden’s brief remarks revealed the divide between political talk and proposed actions. In this case Biden, being typically self-referential, was using political talk to show his empathy and to reassure us that the issue matters to the administration. Referring to himself and his wife Jill as part of the “sandwich generation” (more on that in another post) he tells how he and his siblings divided up the cost of caring for his elderly parents. His point was that because he made a very good salary the cost of care was “not a problem.” He then asked himself what it would be like for a family with two kids making $85,000, even $125,000 a year. How do they do it? he asked.
After making his point about the difficulty of affording care, I assumed that affordability would be the focus of the task force’s consideration of elder care, and indeed the only mention on the new web site of elder care is a short sentence buried in the text about child and elder care affordability. However, instead of following his family story with what might be done about affordability Biden went on to tell the task force members that the administration is proposing “more support for caregivers” – counseling, training, help with transportation and temporary respite care so that they are better able to balance work with caregiving. (Full disclosure here, I’m a social worker and though you would think I’d be in favor of counseling I’m not when I know it does nothing to address the much larger problem).
So Biden introduces the elder care problem as one of affordability, and then proposes—not compensation for family caregivers, an affordable continuum of care, or building the capacity of the caregiving workforce—but counseling, training, and temporary respite! Just what a stressed out caregiver needs, “training” (to do what?), and counseling (please show me the research that suggests that is high on the list of caregiver needs). How can this help when the main problem is lack of time, money, and available services? And speaking of “time” how will caregivers, particularly those who must work, find the extra hours to be trained and counseled? Oh, yes, and temporary respite, at best a stranger to pop in now and then so the caregiver can do some grocery shopping or go to the doctor. Even if a social work-type support program were devised, it would have to follow the model of the best case management programs, those where the social workers document the extent and complexity of the needs (not as gatekeepers who determine eligibility) and where there are ample and diverse services to which people can be referred. And of course for anything to be helpful to these families, whose needs are multiple and often rapidly changing, the relationship with the social worker has to be close and continuous with home visits and plenty of time to devote to the family.
Biden said that nearly 200,000 people will be served. What could this number possibly mean. There are an estimated 52 million formal and informal caregivers to ill and disabled adults over 20 years of age in this country http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=439. Training and counseling for family members smacks of blaming the victim, and respite--even when available and reliable--is not acceptable to many families or the elderly themselves. Perhaps if 200,000 new good jobs for paid personal care workers were the target at least we would have the seeds of a pilot program. Some dollars for research on promising programs already out here might help too so that whatever policy and programs are developed there is some knowledge about how they work or don’t work.
John Podesta said a couple of days ago that Obama has lost control of the narrative, and if so this is a doozy of an example. No middle class person cares what well off people do to manage elder care and child care—they don’t have money to pay for private care and need options that are affordable, accessible, and morally acceptable. We all know that Biden can screw up just about any narrative, and he is probably at his worst when he does the “regular Joe” bit as he tried to do in this speech. Obama and Michelle both know first hand about the complex demands on middle and working class families who have to work and to care for an ill or disabled member. This is a narrative that Obama himself should take control of before it goes down the rabbit hole of this task force.
As far as affordable elder care I expect it to quietly fall off the agenda of the Task Force. Perhaps that would be preferable to proposing solutions that have nothing to do with the problem. Unless these work-family balance programs are fully informed by all the research and years of thinking about what is needed, those millions of unpaid, unsupported caregivers, whose numbers are growing exponentially, will have to look elsewhere for their hope.