Statistics show the number of at-home caregivers continues to grow to as many as 40 million Americans. With this growth also comes an increasing number who are losing income or suffering a decline in their own health due to the care they’re providing - so much so that the government is now providing assistance at both the state and federal level.

Hey Caregivers – Lawmakers Are Listening, Some Help on the Way 600

 One policy, the Caregiver Advise, Record, Enable (CARE) Act, requires hospitals to work more closely with family caregivers when admitting and discharging their loved ones to help create a smoother transition in care. This law and its variations, enacted today in more than 40 states and territories, are based on model legislation developed by the American Association of Retired Persons (AARP).

A second law, The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, requires the Secretary of Health and Human Services to develop, maintain and update a strategy to recognize and support family caregivers. This federal law was passed by Congress in January 2018 and is in the first few months of an 18-month strategy development process to determine how best to serve the nation’s growing legion of caregivers.


Here is an eye-opening statistic: AARP estimates that almost half of the nation’s 40 million family caregivers have performed medical or nursing tasks for their loved ones, such as managing multiple medications, providing wound care, giving injections and operating monitors or other specialized medical equipment.

Up until 2014, however, caregivers who were providing these services often did so without formal guidance or instruction.

AARP proposed a simple fix to the system with legislation that required hospitals to identify and provide education to family caregivers of hospitalized patients, with the win-win goals of giving caregivers the training to carry out medical tasks while reducing the odds that the family member will be readmitted.

Oklahoma passed its version of the CARE Act in 2014. Four years later, 40 states and territories have enacted an iteration of the CARE Act into law.

Though the laws vary state by state, in general the CARE Act puts into law three basic reforms:

  1. It requires hospitals to let patients identify a family caregiver when they’re admitted.
  2. It requires hospitals to notify the family caregiver in advance when the patient will be discharged.
  3. It requires hospitals to instruct the family caregiver about any necessary ongoing treatment.

While many hospitals had already been providing such service to caregivers and their loved ones, others had not. AARP has championed an education campaign to hasten the Act’s implementation. It has also worked with other policy researchers to monitor how the CARE Act is implemented in hospitals, and has visited facilities, talked to administrators and nurses, and made sure that the policies are being followed with an eye out for any innovations to suggest to other hospitals.

To see if your state has enacted the CARE Act, visit the AARP’s CARE Act map (as of 2017).

The RAISE Family Caregivers Act

The RAISE Act is currently a bit of an open slate as it seeks advice and recommendations from everyone who touches this essential but less visible leg of our healthcare system, including family caregivers, older adults and persons with disabilities, veterans, providers of healthcare and long-term services, employers, and state and local officials.

The goals of the strategy include identifying actions that all invested parties can take to support family caregivers, including:

  • Promoting greater adoption of person-centered care and family-centered care in health settings and long-term care settings
  • Training for family caregivers
  • Respite options for family caregivers
  • Ways to increase financial security for family caregivers
  • Workplace policies to help family caregivers keep working
  • Collecting and sharing of information about innovative family caregiving models
  • Assessing federal programs around family caregiving
  • Addressing disparities and meeting the needs of the diverse caregiving population

The development of the initial strategy will take up to 18 months, followed by updates of the strategy biennially. The law will also seek to improve the collection and sharing of information, including information related to evidence-based or promising practices and innovative models regarding family caregiving. The strategy and work around it should help support and inform state and local efforts that support family caregivers.

Watch this blog for additional updates on the RAISE Act as its development continues.

If you're looking for caregiver resources – governmental or other – call 1.866-KINDRED to speak with a Registered Nurse 24 hours a day, 7 days a week. We're here to help you navigate the healthcare system.    

By Mike Ogburn