Recommendations to Support Family Caregivers with ARPA

(Editor’s Note: This campaign took place in the spring of 2021. Check out our results of our actions, including an article in The New Republic.)

The American Rescue Plan Act (ARPA), Section 9817, offers a 10% enhanced FMAP rate to states that enhance, expand or strengthen home- and community-based services, which includes help for those who care for a family member. When funding goes toward the following three services, states can expand caregiving support and strengthen the family caregiver’s emotional, physical and financial well-being.

1. Caregiving is a Workforce Crisis: PROVIDE COMPENSATION

The shortage in the direct care workforce means more and more family members provide care. By increasing funding for consumer-directed programs, more family members can be hired to provide care. In addition, states can expand the definition of family so that spouses and parents of minor children who provide care can be paid.

"It takes every penny to keep my husband alive.” ~ a family caregiver

2. Caregiving is a Mental Health Crisis: PROVIDE COUNSELING

Family caregivers feel the emotions for two -- for their carees and for themselves. Family caregivers often keep their emotions to themselves out of concern for upsetting their caree. During regular sessions with a counselor or coach, family caregivers of all ages can express themselves honestly and release the pressure they feel from carrying the intense caregiving emotions, including their worry, frustration and guilt.

"I always feel ‘on'. I used to come home from work and be myself and now I have to put on my fake face.
I anticipate the worst all the time. I hate being a caregiver in my home.
My mother-in-law falls a lot, can't speak clearly at all,
can't do hardly anything by herself, and cries all the time.
It's heart-wrenching!” 
~ a family caregiver

3. Caregiving is a Humanitarian Crisis: GIVE A BREAK

In our informal survey, family caregivers rate their stress level at 4.13 on a scale from 1 to 5 with 5 being the most stressed. With an influx of funding for respite services, family caregivers of all ages can get a much-needed break. Research validates the return-on-investment for respite is significant.

"Between work, caregiving responsibilities, housework, chores, laundry, cooking, I am spread very thin.
I never get a day off, I never get to sleep in.”
~ a family caregiver

We are so grateful to these organizations for adding to their support to our recommendations:

We’d love to add you to our list of supporting organizations and individuals. Sign on your support by submitting your information via our form at the bottom of this page.

Advocacy Tool Kit

To help you spread the word about our initiative, we've created an advocacy tool kit. Our took kit includes our PDF which details our recommendations, social media graphics and messaging you can use on social media and in email messages.

Download the tool kit.

Thanks so much to Kara Ward, who cares for her grandmother, for her graphic design and editing help!

Research References

Add Your Support

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