We asked family caregivers about their scope of work.
The results: 84.4% provide emotional support.
Family caregivers tell us they provide emotional support more than they provide personal care (57.5%).
Yet, our systems don’t provide any kind of ongoing emotional support to the family caregivers, whose scope of work doesn’t include breaks, shifts, and time off. Family caregivers’ work is 24/7, 365 days. When a caree needs help at midnight, it’s the family caregiver (not the doctor or home health nurse) who helps.
The family caregiver’s midnight care also is not reimbursed. When a doctor or a home health nurse provides care, they bill for the services rendered. The family caregiver is the only system without a reimbursement rate.
We’re working to change that.
1. Medicare already pays professionals to support a caree’s emotional needs. We want Medicare to recognize that the family caregiver needs that same support. Deadline to tell Medicare is September 14, 2026.
2. When a home health benefit begins, the caree receives orders for a nurse, a home health aide, physical therapy, occupational therapy, and speech therapy. We want Medicare to expand the benefit to include an order for caregiving coaching so the family caregiver receives emotional support from a trained professional. With caregiving coaching, the family caregiver connects with a coach to receive support, create plans, and develop coping strategies.
3. The CARE Act requires hospitals to consult with and provide a discharge plan that includes an aftercare plan for the patient. We want an expansion of the CARE Act, now law in 45 states and U.S. territories, to include an aftercare plan for the family caregiver, too. An aftercare plan for the family caregiver can include a referral to a trained professional coach to provide the kind of emotional support Medicare already pays providers to give patients. We want Medicare to expand that support to include the family caregiver.
We’ve created a toolkit that includes templates and instructions: https://www.careyearsacademy.com/advocacy/
Our advocacy comes from your data that you share with us. When you calculate your value, you help us make the case that all systems need to support and reimburse you: https://www.careyearsacademy.com/caregiving-resources/tools/costs/save/
Resources
More Attacks on the Family Caregiver: https://www.careyearsacademy.com/more-attacks-on-the-family-caregiver/
Our Caregiving Work, By the Numbers: https://www.careyearsacademy.com/caregiving-research/work/
19 Caregiving Systems: https://www.careyearsacademy.com/tell-us-whats-it-like-to-navigate-the-19-caregiving-systems/
Thank you for all you do and for being a part of our advocacy efforts.
I so appreciate those who could join me yesterday to work through our advocacy efforts. Our archive is below.
