Raising Our Voices to Make the Difference
The release of the RAISE Family Caregiving Advisory Council report offers another opportunity to make a difference.
Last spring, a colleague suggested I organize a group of advocates to take advantage of unique funding opportunity for family caregiver support programs. The American Rescue Plan Act (ARPA), Section 9817, allowed states to apply for funding to enhance, expand or strengthen home- and community-based services, which includes help for those who care for a family member. Meaning, states could submit plans during the summer to receive additional money to fund its home- and community-based programs.
We had a chance to help more family caregivers by advocating that additional funds go toward caregiving programs. Although the funding was limited to Medicaid waiver programs, advocating for more funding meant elevating the need to support all family caregivers. We hoped that our focus on enhancing funding for caregiving support through Medicaid waiver programs could highlight the stories of all family caregivers.
With the help of my colleague, we created three recommendations for states on how they could use the enhanced funding:
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
I invited anyone and everyone I could think of in the caregiving space to join our efforts. Within two days, 13 organizations signed on to endorse our recommendations. Then, we use social media and email campaigns to reach decision makers in each state.
I’m happy to report that our advocacy efforts made a difference. The New Republic featured a fantastic article on the need to pay family caregivers. The state decision makers replied to our email messages which gave us hope that our message and our recommendations were being considered.
Last month, we learned that 30 states submitted plans to received the additional funding. Of those 30 states, 11 states included plans to fund support for family caregivers. The 11 states are:
Arizona
California
Connecticut
Indiana
Maine
Minnesota
New Mexico
Pennsylvania
Tennessee
Texas
Wisconsin
You can check each state’s plan to learn how it will use the additional funding. If you live in one of the states that will receive the funding for caregiving programs, be sure to reach out to your state’s leadership with thanks. You also can check your state’s websites for regular updates on funding utilization.
But we’re not done advocating.
We have a new opportunity to increase awareness of family caregiver’s needs. On Thursday, RAISE Family Caregiving Advisory Council released its report, which includes 26 recommendations, to Congress. It’s great Congress has the report. But Congress is not required to take any next steps, like holding Congressional hearings.
We want to change that.
Stay tuned. You can add your voice to help make the most of the report’s release. I’ll share ways you can get involved in next week’s newsletter.
Resources
If your caregiving experience has ended, gain support in your life after caregiving with our six-class cause, Beginning Again After Caregiving Ends. Join our pilot program to enroll for free.
We’re currently accepting nominations for three categories in The Caring Awards: Caregiving books, advocates and TikTok channels. Nominate yourself or a colleague. Deadline to submit a nomination is November 15.
Join us on the third Wednesday at 1 p.m. ET to brainstorm solutions to get help for your personal caregiving challenges or your caregiving start-up. RSVP for our Caregiving MasterMind Solutions meeting.