In 2014, AARP first developed the CARE Act as model legislation, and lobbying for it began that same year, state by state.
The lobbying has been effective. The CARE Act is now law in more than 40 states. Before a patient goes home, the law requires a hospital to identify a family caregiver, and that family caregiver has to be shown, live, how to do the after-care tasks: change a dressing, manage a medication schedule, operate equipment. Medicare followed in January 2024 with its own billing codes, paying physicians and therapists to train family caregivers in behavior management and daily functional tasks.
Both are real progress. Both misunderstand the family caregiver’s real work.
The Work of the Family Caregiver
When family caregivers calculate their value with the Non-Reimbursed Family Caregiver Savings Calculator, they tell us about their work across nine domains: Advocating, Assessing, Being, Communicating, Deciding, Managing, Planning, Providing, and Sustaining.
The CARE Act and Medicare’s billing codes address the work done in the Providing domain. When we ask family caregivers about the work within that domain, they select Emotional Support far more often than Personal Care:
Provide Emotional Support: 83.7%
Provide Personal Care: 56.9%
Family caregivers tell us, consistently and by a wide margin, that the work they do most is not on the training curriculum.
The CARE Act Impact
We don’t have to guess whether this focus on task training moves the needle for family caregivers.
A 2022 study out of the University of Pittsburgh Medical Center followed 2,591 older adults with diabetes discharged under Pennsylvania’s CARE Act. It found a gap most people don’t expect: only 22.2% of the family caregivers identified under the law actually received the training it requires. Identification and training are two different steps, and most families never got past the first one.
For the family caregivers who did receive training, the raw numbers looked better: lower readmission and ED-visit rates. But once researchers adjusted for how sick the patients actually were, that effect stopped being statistically significant. Family caregivers who were identified under the law but never received training saw a higher 30-day readmission rate for their patients, 12.2%, compared with 9.9% for patients who had no caregiver identified at all. That’s a correlation, not a proven cause.
Patients sick enough to need a caregiver identified in the first place are likely sicker in other ways too. But it shows plainly that identification alone, the CARE Act’s first and most commonly completed step, doesn’t by itself improve outcomes.
The CARE Act also requires hospitals to “consult with and provide a discharge plan to the caregiver that includes the aftercare that the patient will require.”
Where’s the aftercare plan for the family caregiver? A hospitalization is often a crisis for the family caregiver, who saw a medical event happening at home and then made the decision to call 911. The medical event witnessed by the family caregiver may have been traumatizing. The advocacy required during a hospitalization so a caree receives effective care may have been exhausting.
A family caregiver needs post-crisis care.
We also looked for what this decade-long, 40-state campaign has cost to run: state lobbying efforts, model legislation drafting, implementation support. We couldn’t find a consolidated figure anywhere. Advocacy spending for the CARE Act is scattered across dozens of separate state disclosures, none of which isolate this campaign on its own.
That means no one, including us, can calculate its return on investment. If the standard is “prove it works before you fund it,” the CARE Act never had to meet that standard. It spread to 40-plus states over a decade before anyone checked whether it actually reduced readmissions, and the first real check found that it doesn’t, not once patient risk is taken into account.
The focus on training family caregivers clearly isn’t making the impact intended.
This Isn’t a New Realization
I’ve been naming this gap for a decade. In 2015, when the CARE Act was law in just 13 states, I wrote about why the CDC should track family caregiver stress instead.
I shared my own experience caring for my dad after his surgery to remove his bladder and kidney, after his bladder cancer had spread. The hospital trained my mom and me on one way to change his bag.
The training happened in a small semi-private hospital room while my dad’s roommate socialized with visitors on the other side of the privacy curtain. I asked the ostomy nurse training us if we could ask the visitors to leave so we could concentrate on her instructions. She told me no.
My mom turned a shade of pale I had never seen before or since. The sight of my dad’s wound, the new opening created for his urine, caused her to sit down. I thought she would pass out. The nurse barely acknowledged my mom’s distress. While my mom sat in a corner in that crowded space, I used my iPad to tape the training so we’d have a reference once we got home.
I congratulated myself on having the idea to tape the training.
But the video never helped.
Everything was different once we returned home. The healing wound looked different. A few days after arriving home, we couldn’t tell whether my dad’s ostomy bag was leaking. He spent a night sitting up in his recliner, waiting, until a visiting nurse arrived the next morning.
That visiting nurse gave us completely different instructions than we’d been given in the hospital.
Because of that experience, I learned that training delivered in the hospital, for care we’ll provide at home, often isn’t training we can use. We need to be trained on how to provide care where our caree actually lives.
Task training, delivered exactly as the law requires, failed. The CARE Act has since grown from 13 states to more than 40. I’ve been part of more hospital discharges since my dad’s surgery in 2015. Every discharge is different. Some include real instruction. Some don’t.
Regardless, the law doesn’t meet our needs. We need training where we provide care. We also need more than training, because so many of us provide more than hands-on care. My mom needed emotional support after my dad’s hospitalization. I provided that. The ostomy nurse never checked on my mom, my dad’s primary family caregiver, to make sure she felt comfortable providing the care he needed until he died eight years later at home.
The work we do most, providing emotional support, takes the heaviest toll of all.
Training and Coaching Solve Different Problems
A hospital nurse can show a family caregiver how to change a dressing correctly. That’s training, and it matters. It cannot show them what to say when their father tells them, mid-task, how much he hates needing this kind of care at all.
When I changed my dad’s bag, he always told me how much he hated it. During our training session, the nurse never told me how to manage those conversations, or how to manage my own emotions in the middle of them.
That’s not a skills gap. It’s a support gap, and it’s the gap that someone like a Certified Caregiving Consultant (CCC) is trained to fill.
A CCC doesn’t replace the wound care instruction or the medication training. A CCC sits in the experience no discharge instruction covers: the fear, the grief, the identity loss a caree works through in the same moment a family caregiver performs a task correctly. Training teaches the hands. Coaching supports everything the hands don’t touch.
Coaching is the aftercare for the family caregiver.
Why the Billing Codes May Be Underused
Medicare’s new caregiver training codes have seen low uptake so far, and the usual explanation is provider-side: billing friction, unfamiliar codes, lack of awareness. That may be true.
But our data suggests a second, quieter explanation. Family caregivers who have started answering our newest calculator question, naming which domains feel most challenging, point most often to Sustaining and Being (48.1% and 44.4% of the 27 respondents who’ve answered so far). Advocating shows the opposite pattern: the domain family caregivers find least challenging and most natural. This is early data, but it points the same direction as everything else we’ve found: if the domains family caregivers most need help with sit outside task instruction, then a code built exclusively around task instruction addresses a smaller share of the actual need. You can’t drive utilization of a service by making it easier to bill for something family caregivers didn’t say they needed most.
If the training provided became the first step in building effective, ongoing support, the story would be different. But the intervention begins and ends with training, which means family caregivers don’t receive the emotional support they actually need.
What Comes Next
The CARE Act and Medicare’s training codes are a real first step toward reaching family caregivers. But right now, training is treated as the only step, full stop. That misses the opportunity to support family caregivers who provide both hands-on care and emotional support.
We advocate for three specific, achievable changes. We can create meaningful impact starting with what we already have. We do not need a new law or a new billing code.
First, Medicare introduced billing codes called Community Health Integration and Principal Illness Navigation (CHI and PIN) in 2024 that include language authorizing “social and emotional support.” Right now, that language is written for the patient.
We want CMS to state plainly that the family caregiver, as well as the patient, can receive that same support. Patient navigators can already bill CHI and PIN, so this clarification needs to be specific: the family caregiver should be supported by an auxiliary professional who has completed specialized training to coach and consult with family caregivers, not simply a navigator whose training is oriented entirely around the patient’s condition. Certified Caregiving Consultants, for example, complete 115 hours of specialized training in exactly this work.
AARP and the National Alliance for Caregiving both are actively pushing CMS to expand who can bill these codes. As far as we can find, no one yet is asking CMS to say clearly that the family caregiver can also be the one receiving the support, or to require that the person delivering it is actually trained for it.
Second, this support for family caregivers can live in the home health team. Medical social services are already one of six disciplines bundled into home health’s Part A payment, so a social worker already receives reimbursement for meeting the patient’s psychosocial needs. A trained auxiliary professional delivering coaching services to the family caregiver, billed separately under Part B through CHI or PIN, is new, additional revenue for a home health agency, not a duplicate of a service they already provide. It also solves the delivery question cleanly: the physician who already certifies the home health plan of care can serve as the billing practitioner, with the auxiliary professional providing the coaching under that same supervision.
Third, the CARE Act already requires hospitals to notify the family caregiver before discharge. We want this same notification to include a mandatory referral to a caregiving coach, the same way discharge plans already refer families to home health agencies and DME suppliers. Coaching can’t happen, or be billed, during an inpatient stay; that’s Medicare Part A. A referral built into the discharge plan starts support once the caree is home, billed under Part B the same way CHI and PIN already are. We haven’t found anyone currently advocating for this kind of mandatory coaching referral either.
I know coaching works because I’ve been doing it since 2004. Two decades of supporting family caregivers through exactly the gap this piece describes isn’t a hypothesis. It’s a practice with a track record, long before we had 490 responses to our Non-Reimbursed Family Caregiver Savings Calculator to prove the need existed at scale.
We introduced a law and billing codes for training without any evidence of impact. We can confidently lobby for coaching support; we know it works.
Family caregivers don’t just need to be shown how. They need someone who can sit with them in what the how doesn’t cover, like the worries, emotional exhaustion, and grief. Right now, that support has a proven practice behind it and no reimbursement pathway in front of it.
Let’s change that. Our Advocacy Hub provides everything you need to advocate for these changes: support for family caregivers covered under existing billing codes, delivered by professionals trained specifically for this work, and referrals to coaching included in discharge plans.
Visit our Advocacy Hub to tell Medicare you deserve support, too.
Our Advocacy Asks
Clarify CHI and PIN. CMS should state plainly that the family caregiver, not only the patient, can receive the social and emotional support these codes already authorize, delivered by an auxiliary professional trained specifically to coach and consult with family caregivers.
Open the home health team to coaching. A trained auxiliary professional should be able to deliver that coaching under Part B, alongside the existing Part A home health team, as new revenue rather than a duplicate service.
Add coaching to the CARE Act’s discharge referral. Discharge notifications should name a referral to a caregiving coach the same way they already name home health agencies and DME suppliers.
Take five minutes to tell Medicare you deserve support, too.
Resources
Our advocacy only happens because you tell us about your experiences. You help us advocate for you to be reimbursed for your work and to receive more effective support.
Non-Reimbursed Family Caregiver Savings Calculator — Define your work and learn your value.
The Spending Impact — Share how your caregiving experience impacts your spending habits.
Community impact calculator — Want to know what it costs your community when family caregivers don’t get the help and support they need and stop spending within their communities? Calculate the impact.
Already shared your experiences? Please encourage other family caregivers you know to calculate their value and share how their experiences impact their spending.
Our Interns’ Project
Our interns from the Community Health Program at University of Illinois would like to know more about your experiences with your caree’s physicians. Take five-minutes to tell them.
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