Mom, Pop & the CARE Act

elaine bumpersticker
"Long-Term Care: Fix It Before I Need It," a bumper sticker I hang in my office.

As I recently told Ron Fournier of the National Journal , the memories of Mom and Pop are part of what drive me in my work to support family caregivers as they help their loved ones live independently at home. Like most Americans, Mom and Pop wanted to stay at home - and not go into a nursing home or other facility. In their 80s they become first-time homeowners of a one-story house, and I continued in my role as their unofficial caregiver. Without realizing it, I had joined a silent army of now over 42 million family caregivers across the states, safely keeping their loved ones from being readmitted to the hospital, out of costly institutions, and at home.

The experience of caring for Mom and Pop gave me a firsthand understanding of the common-sense steps needed to help family caregivers in their critical role of caring for their loved ones. The Caregiver Advise, Record, Enable (CARE) ACT supports family caregivers as their loved ones go into the hospital and helps them learn what to do to safely provide care when their loved ones are discharged home.

I know the CARE Act would have helped me as I helped Mom and Pop through multiple hospitalizations, and believe it will make a big difference for other family caregivers and their loved ones; I'm not alone. Here's what some other national organizations are saying about the CARE Act:

Th e American Geriatrics Society:                                                                                                                                     "The American Geriatrics Society (AGS) commends AARP for its efforts to integrate family caregivers across the continuum of care. We recognize the important role family caregivers play in supporting quality care and care coordination for older adults - especially frail older adults with often complex or multiple chronic conditions.  The Society recognizes that members of the interdisciplinary care team can better provide person- and family-centered care when family caregivers are identified in medical records, notified of discharges, and provided appropriate training and explanations.  Nationally, family caregivers provided more than 40.3 billion hours of unpaid care in 2009.  Family caregivers are valued members of the geriatrics patient-centered care team and supporting them will further promote high quality and compassionate care for older adults."

The American Cancer Society Cancer Action Network:
 "The American Cancer Society Cancer Action Network supports the enactment of the Caregiver Advise, Record and Enable (CARE) Act across the states. The CARE Act recognizes the important role of caregivers by requiring that hospitals identify and involve patients and their designated caregivers in the discharge planning and after-care preparation process.

"Older cancer patients often rely on caregivers to help them coordinate their care, manage their medications, provide transportation to outpatient treatment, and help with activities of daily living. In particular, for older patients undergoing chemotherapy at home, patients and their designated caregivers need to understand the prescribed chemotherapy medications and any medications given to alleviate pain or nausea, as well as the signs and symptoms associated with adverse reactions. The CARE Act's focus on involving patients and their designated caregivers in discharge planning, and providing training for necessary after-care tasks such as managing medication, will help ensure that caregivers can help patients receive the care they need at home."

Caregiver Action Network:
 "The Caregiver Action Network (CAN) strongly supports the Caregiver Advise, Record, and Enable (CARE) Act. Family caregivers are integral members of the health care team for their loved ones and the CARE Act is exactly the right approach to recognize the vital role that caregivers play.

"All too often, we hear from caregivers across the country how they are left out of discussions involving medical care for their loved ones. Sometimes they are ignored by medical professionals. Sometimes they are informed after the fact that their loved ones have been moved to another facility. Sometimes they are given inadequate discharge instructions about taking care of their loved ones at home - or sometimes even given no instruction at all."

Coalition of Geriatric Nursing Organizations: 
"The Coalition of Geriatric Nursing Organizations (CGNO), whose membership includes over 28,700 nurses in long term care, joins AARP in support of the Caregiver Advise, Record and Enable (CARE) Act.  The CARE Act codifies state law to assure each hospitalized patient has an opportunity to designate a caregiver in the hospital record, which action research has shown improves care transitions back into the community. "

"While the CARE Act applies to all hospitalized patients, frail elders with multiple chronic needs account for the vast majority of unnecessary rehospitalizations which cost Medicare $ 17 billion last year. Most post hospital care will continue to be provided by unpaid family or friend caregivers. They need as much support as the patient to prevent bad outcomes. Implementing the CARE Act in each state will provide a system for enhancing caregiver support."

Family Caregiver Alliance:
 "Family Caregiver Alliance (FCA) strongly supports the enactment of the Caregiver Advise, Record and Enable (CARE) Act across the states.  The CARE Act ensures that hospitals identify and involve family and informal caregivers in discharge planning and receive instructions for care during the hospital stay process.

"The period of transition from hospital to home is often a challenging time for both patients and family caregivers. Changed health conditions typically require new self-care routines by patients and increase demands on caregivers for direct care assistance. Often, new medical tasks must be learned and performed by family caregivers. Requiring the identification and involvement of a family caregiver in the discharge planning and instructions for care will promote better outcomes for the patient, their caregivers and the hospital. It is time that family and informal caregivers are recognized as part of the care team.

"Passage of the CARE Act will ultimately improve care for the patient through better involvement and training of family or informal caregivers."

National Alliance for Caregiving:
"The National Alliance for Caregiving applauds state efforts to recognize the vital role that family caregivers play in healthcare delivery. We support AARP's model legislation, the Caregiver Advise, Record and Enable ('CARE') Act, which requires hospitals to provide discharge instructions to family caregivers who are supporting a loved one after a hospital stay.

"As a formal member of the care team, family caregivers can better assist medical professionals in providing high quality, patient-centered care. Whether by regulation or legislation, the Alliance supports the action to acknowledge and include family caregivers as trusted members of the healthcare team."

ReACT (Respect a Caregiver's Time):
"ReACT (Respect a Caregiver's Time) commends AARP for its efforts to formally integrate family caregivers into the continuum of care. Informal care is a critical but overlooked piece of an individual's overall health, and family caregivers who provide that care are often not adequately informed upon their loved one's hospital discharge. Support and resources that educate caregivers during these uncertain and stressful times stands to greatly improve the informal care that can be provided. Better informed caregivers will allow for better and more efficient care, reduced hospital admissions and ultimately a more productive caregiver."

If you are a family caregiver, you're not alone.

Follow me on Twitter  @RoamTheDomes for more news on caregiving and other AARP advocacy initiatives across the country.


Update 3/27/15: The CARE Act is now law in Oklahoma, New Jersey, Virginia and West Virginia.

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