Helpful Resources for Patient Advocates

Companion piece to Why Every Patient Needs an Advocate, Heart Insight Fall 2015

Patient Advocate Foundation
PAF’S provides families with arbitration, mediation and negotiation to settle issues with access to care, medical debt and job retention related to illness. They also provide direct access to helpful resources utilized by case managers.

National Association of Professional Geriatric Care Managers  
Education about a wide-range of issues around aging.

Kaiser Family Foundation  
Non-partisan information on the Affordable Care Act.

Caregiver Action Network  
Family caregiver organization provides education, peer support, and resources to family caregivers across the country free of charge. Formerly the National Family Caregivers Association.

National Association of Elder Law Attorneys  
Professional organization that offers help finding an elder law attorney.

National Family Caregiver Alliance  
A resource for caregiving families that provides information, support, and national advocacy on behalf of caregivers. 

National Citizen’s Coalition for Nursing Home Reform  
Resources for long-term care consumers with information about nursing home and assisted living selection as well as home and community care.

National Guardianship Association  
Help finding a guardian.

Justice in Aging  
Advocates nationwide on behalf of low-income elderly individuals and persons with disabilities.  Areas covered on the site include: age discrimination, Americans with Disabilities Act, Medicaid, Medicare, nursing homes, Older Americans Act, pension rights, and social security. 

Administration on Aging (AOA)  
The principal agency of the Department of Health and Human Services designated to carry out the provisions of the Older Americans Act of 1965. The OAA provides services and programs designed to help the elderly live independently in their homes and communities.

Veterans Administration Caregiver Support  
Caregiver support for family caregivers of military veterans.

H.E.L.P. 
Free educational resource for family caregivers. Information on Medicare, legal issues, dealing with caregiver burden.

Patient Advocacy Books Recommended by Sue Fabian, featured in Every Patient Needs an Advocate

YOU, The Smart Patient by Dr. Michael F. Roizen and Mehmet C. Oz, M.D., about getting good care in a hospital. Terrific book.

My Mother’s Hip  by Luisa Margolies.  Patient advocacy and caring for loved one with hip fractures – a common occurrence with older adults, mortality rises up to 50 percent in first year.

Taking Charge: Good Medical Care for the Elderly and How to Get It by Jeanne Hannah and Dr. Joseph Friedman.  Jeanne is an elder law attorney whose mother died due to medical mistakes.  She took two years off from her solo practice and wrote this book, primarily about the problems with misdiagnosis of an elder’s delusions that were in fact due to urinary tract infection.  Her mother was put on the psychiatric ward, and sepsis eventually took her down.  

A Family Caregiver Speaks Out: It Doesn’t Have to Be This Hard by Suzanne Geffen Mintz,  former president and co-founder of National Family Caregivers Assn (now Caregiver Action Network).  She presents self-help ideas and how to be resourceful to get caregiver’s and loved one’s needs addressed.

My Mother, Your Mother by Dennis McCullough, M.D.  He’s a rare geriatrician (only 3 percent of US doctors are board-certified in geriatrics) who writes about emotional and ethical questions on caring for those with chronic debility. Is continual heroic intervention the best for our dying loved ones?  Is it prolonging life or prolonging suffering?

This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Heart Association.