Caregiver Advocacy

In April 2012, "The Caregiving Crisis" was selected as the 2nd most important health and medical issue of the year at TEDMED2012. Onsite delegates and thousands more at simulcast sites across the country selected the Top 20 of 50 Great Challenges that were presented during the conference to be the focus of TEDMED’s work throughout the coming year. A Great Challenge, as defined by TEDMED, is a health-related problem that is big, complex, intractable, fundamental, and virtually permanent (or at least, likely to persist for decades).

This latest recognition at TEDMED of the important role family caregiving plays in our society and in healthcare is just the latest affirmation of NFCA’s important work in the public policy arena. Family Caregiving issues are of serious concern for employers, insurers, healthcare providers and policy makers at the federal, state and local levels.

There are only two people who are consistently present across the chronic care continuum; a patient and that person’s family caregiver. Family caregivers are acknowledged as the nation’s primary providers of long-term care, but they are not equally acknowledged as primary providers of their loved one’s non-acute healthcare needs.

Family caregivers have no official status and there is no official record of their existence. There is significant research about the impact that family caregiving has on the health and well-being of family caregivers, but there is very little on the impact that family caregivers make in the lives of their care recipients or on the healthcare system as a whole.

We know that:

• Persons with multiple chronic conditions are the most vulnerable and medically expensive members of society. Their care consumes approximately 75% of all healthcare dollars
• Family caregivers provide 80% of the care for this cohort of the population, most of who reside in the community.
• Family caregivers are ill prepared for their “job” as homecare aide, nurse, advocate, physical therapist, etc. There is no organized mechanism for providing the education, training and support family caregivers need.

Medical records are the official documents of the healthcare system. They provide the information on which care plans are developed, insurers pay claims, and the course of an illness is tracked. Yet nowhere on medical records is there a place to record the name of a person’s family caregiver or the fact that someone is a family caregiver. There is a serious disconnect between the day-to-day reality of chronic illness care and traditional healthcare practice and payments.

Until there is a place on medical records to identify who is and who has a family caregiver:

• American healthcare will not be able to truly alter the way it provides care for those with chronic conditions
• Family caregivers will continue to be relegated to the category of nuisance rather than taking their rightful place on their care recipient’s health care team, one who has intimate knowledge of the patient that is not available to any other team member
• There will be no mandate for providing family caregivers with the education, training, and support they need to both be a more confident and capable care provider and also a responsible steward of their own health.
• There will be the lost opportunity for research on the impact family caregivers have on their loved one’s health and wellbeing, healthcare costs, the value of different educational and supportive interventions, and caregivers’ own health behaviors.

As we move toward the implementation of electronic medical records and coordinated care it is more important than ever that we address this issue. It is imperative that going forward medical intake forms and official records capture information on who is a family caregiver and who has a family caregiver. Without recognition of the chronic care dyad, the treatment of those with long-term chronic conditions cannot be as effective and efficient as possible, and equally important, family caregivers will not regularly be evaluated for the healthcare risks to which they are prone. For all the reasons stated above it is time for family caregivers to be given official recognition as full-fledged citizens in chronic illness care.

Family caregivers need to fight for their civil rights and the accompanying education, services, financial assistance and responsive healthcare system needed to overcome the problems our families confront.

Contact your federal and state legislators TODAY and share your thoughts and ideas. They need to hear from family caregivers.
Here are some ideas of what you can do. Find the contact information for the President, U.S. Senators and Representatives and State Governors and legislators all here: http://www.usa.gov/Contact/Elected.shtml.

Read Cofounder Suzanne Mintz NFCA’s 2009 Principles, Plans and Policy Recommendations – An Overview of Family Caregivers and Legislation Promoted by NFCA