A Caregiver Policy Wonk's Christmas List

At the recent AARP forum on caregiving, Jonathan Rauch suggested that we need a groundswell of support around caregiving in order to affect changes, not a “laundry list” of policy proposals to better support caregivers. While Rauch has a point, there’s also the old expression of “no askie, no gettie.” FCA will release its official 2012 Policy Statement next year, but here’s a preview of what’s on our minds, based on our direct work with family caregivers in the Bay Area and our information and referral work with caregivers nationally.

A few of FCA’s “Asks” for 2012

1. Workplaces that “get” caregivers. This would include:

•Paid Sick Days: The U.S. economy is not going to come to a grinding halt if employees are able to earn 8 paid sick days a year to care for themselves or a loved one. Let’s keep the germs away from the workplace and school, and let’s recognize the need to take a loved one to a medical appointment.

•Broadly defining “family” for paid sick leave. The definition of “family” in the FMLA is fairly restrictive. Given Generations United’s recent findings that found 1 in 6 Americans live in a multi-generational household, why not expand this to include domestic partners, siblings, parents-in-law, grandparents, grandchildren, and step-parents?

•Converting FMLA into a national, paid leave program. Even if it’s only 50- 75% of a person’s salary, this move is long over-due. New Jersey and California both offer paid leave for caregiving and neither state’s economy has been negatively affected as a result of supporting caregivers.

•Flexible Workplace Policies: These types of policies can support family caregivers who may need flexibility in scheduling around doctor’s appointments, the hours at the Adult Day Center, or the hours approved for personal assistance services in Medicaid.

2. Americans that “get” Medicare and Medicaid.

Numerous studies this year (September Field Poll and Retirement and Health Poll continue to demonstrate that most Americans don’t know the difference between Medicare and Medicaid. This also carries over to people’s understanding of who pays the tab on long-term care. It’s easy for people in this profession to cluck our collective tongues, but the implications of this lack of knowledge are very serious, especially when a caregiver first comprehends what this will mean for their financial situation:

“Medicare doesn’t pay for a nursing home?” “Medicaid doesn’t transfer over state lines?” “Waiting lists?” “I can’t be paid to be a family caregiver in my state?” “$20 an hour for a home health care agency?” “Medicaid asset tests?” “Estate recovery?” “Look-back period?”

If 2/3 of Americans are going to need long-term care at some point, why shouldn’t there be a more national, collective knowledge of Medicare and Medicaid and what these programs will pay for vs. what they don’t pay for? The logistics will admittedly take some effort, but why not incorporate it into high school or college financial literacy classes? The current situation, in which caregivers are thrown into financially precarious situations with little to no knowledge of the financing of long-term care, can lead to disastrous financial situations, especially when a caregiver is quitting work to care for a loved one and the bills start to add up.

3. Politicians that “get” Aging in Place.

The New Old Age (New York Times) recently highlighted the federal Money Follows the Person program that aims to allow more people to “age in place” in the community instead of in an institution.

While “aging in place” is preferred by Americans, there also needs to be a broader recognition that in most cases, aging in place doesn’t happen on its own. Many of the seniors and the disabled rely on programs that help sustain them in their homes, whether it’s Meals on Wheels, Adult Day Health Care programs, meals at a senior center, or Medicaid Home and Community Based Services like home health care. They also rely on family members and friends who help with errands, household maintenance, doctor visits, and a much longer list of “activities of daily living” than would fit on this page.

Each time that politicians make cuts to these programs, they are telling the elderly and the disabled that they are not a priority worthy of funding. Each time they make a cut, they are essentially saying to family caregivers: “Here, can you make do with even less?” Minnesota just did this to family caregivers who are taking care of their disabled loved ones by cutting their pay 20%.

California almost got away with eliminating the funding for Adult Day Health Care until a lawsuit forced a settlement and the creation of a newer, smaller program. Washington State tried doing this, but eventually reversed course, and a judge recently told the state they owe 16,000 mostly family caregivers $96 million in back pay after an illegal pay cut from 2003-2007.

Here’s to 2012 with the hope that family caregivers will “get” all support they need.

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A Caregiver Policy Wonk's Christmas List by Family Caregiver Alliance is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.

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