Mar 242015

By Elizabeth Blair, Victoria Walker and Anne Montgomery

Standing behind a podium in a Capitol Hill meeting room at the March 3 launch of a new congressional caucus aimed at increasing policy attention to family caregivers, Marianita Gorman of New Mexico took a deep breath and looked at the audience of healthy, able-bodied staffers and stakeholders. Caring for Robert, a colleague she met at work who became her “bestest friend” and ultimately died of chronic obstructive pulmonary disease, was “very challenging” and even sometimes “frightening,” she told them. “I think when you start the process of caregiving for someone who is a friend or a relative, it is unscheduled,” yet the demands are “like taking on a second job with no financial benefits.”

Among those demands: significant physical assistance, emotional support, organization of financial and household affairs and for many, responsibility for helping to make critical end-of-life decisions.

Gorman was one of a group of four caregivers and four legislators at the launch of the new bipartisan, bicameral caucus known as Assisting Caregivers Today (ACT). Her story resonates with millions of Americans who selflessly give of their time, energy, and resources to the tune of $450 billion in estimated support each year.[1] Caregiving is undoubtedly a noble commitment, but one that is increasingly unsustainable in a rapidly aging society, where the number of elders and individuals needing assistance will more than double while the numbers of family caregivers will decline precipitously. In short, it is time for policymakers to lend caregivers a helping hand.

At the launch, the four co-chairs pledged their support:

“We ought to come together as a country and agree that supporting caregivers is a clear, convincing priority that needs to be addressed…. We can’t afford not to do it.” —Rep. Michelle Lujan-Grisham

Family caregivers are “unsung heroes and unseen in many ways.” —Sen. Michael Bennet

Often, women who are family caregivers “either have to leave the workforce or…have to leave their school setting…or a volunteer setting in order to be the primary caregiver of someone that they love. This is a very consuming job and responsibility, and we need to give them relief and find ways that people can stay in their homes in the most comfortable setting as long as they can possibly stay there.” —Rep. Diane Black

“We’re willing and wanting to hear what you think…. This is just the beginning.” —Sen. Kelly Ayotte

So let’s get moving. Right now, more than 65 million family caregivers in the United States, who daily demonstrate their commitment to their spouses, children, parents, grandparents, and friends who are ill and disabled, are caught in a web of poorly coordinated health and social services.[2] They need solutions that go well beyond recognition of their efforts. Caregiving requires time, money, and timely access to information and in-home assistance. Our current health and social services systems offer very little support in any of these categories. As Joanne Jenkins of AARP said at the ACT caucus launch, now is the time “to find solutions to make life better for those in need.”

To start, caregivers need policy at the federal, state, and local levels to address workplace flexibility and the financial insecurity that results when they forego their own needs in the face of a fragmented care system that offers them no reliable support. There are some helpful solutions that can be considered. For example, the Family and Medical Leave Act (1993), which ensures that unpaid leave can be taken in times of health crises for workers and their families, could be slightly broadened to include all family members who provide care. Several states have developed paid family and medical leave programs, finding minimal adverse effect on employers.[3] Care systems in some other countries have decided that it is easiest to pay family caregivers. Many have established reliable respite programs. Why not the United States? Our health care system, which is gradually moving from paper to electronic records, does not even record the name of a patient’s caregiver, much less provide tangible help when it is most needed.

It is good news that Congress has established the ACT caucus. But it will take time to enact new programs or come to agreement on expanding existing programs. Meanwhile, here are some ways to raise the importance and salience of family caregiving at the local and state levels:

  1. Attend candidate forums and ask a question or two about caregiver support. Tell your story, or a story of a caregiver whom you know, and suggest how the community can do more to support these efforts.
  2. Insert some language about family caregiving into the agendas and reports of volunteer groups to which you belong, as well as professional organizations.
  3. Write responses and comments to blogs and articles about health care and social services programs. Put forward some ideas for solutions.

Right now, this country relies heavily on family caregivers to maintain the long-term care and health care systems but offers little to nothing in return—not even the assurance that they will have the basic information they need to ensure that their loved one is not in pain and discomfort. There is no national or regional “one-stop shop” of information and resources that can be queried for immediate help, counseling, and training and turned to by families in need of basic, reliable assistance.

It’s time to change this. A dwindling number of family caregivers can’t be expected to continue taking up the slack for poorly organized care systems. As family caregiver Chris Courington of Tennessee pointed out at the ACT launch, if Congress, states, and communities can partner to make it easier to access information about what to expect, what questions to ask, and where to turn when help is needed at home, “this would help all caregivers be more present with their loves ones and not worry about all the little things so much.”