Caregiver Advocacy

The issues surrounding family caregiving are of serious concern for policy makers, politicians at the federal, state and local levels, employers, insurers, and healthcare providers. It is a topic of discussion in faith communities and the subject of research in universities. Today, caregiving is much more than a personal family issue. It is the issue of our age because sooner or later caregiving will affect every family in America and we are not prepared either as individuals or as a society to deal with it.

Family caregiving is hard and it always will be, but it doesn’t have to be quite as hard as it currently is.

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.

It is important that we recognize that what happens on Capitol Hill and in State Houses across the country actually affects what happens in our bedrooms and bathrooms on a daily basis. Everyone acknowledges the need for changes to our healthcare system and the way we finance long-term care. The time is ripe for family caregivers’ voices to be heard. There will be a new administration in Washington next January and NFCA and other organizations are already at work developing concepts to present to the new president. There are a number of ways you can let your voice be heard. Here are some ideas of what you can do.

NFCA’s Vision of a Family Caregiver-friendly America

• Caregiving families dealing with significant medical issues should have access to a care coordination teams that can help them adjust to crises and changing situations and can make sure that correct patient information is transferred from doctor to doctor and from hospital, to rehab, to home.
• Medicare payment systems need to be established, to reflect the reality of our caregiving lives and the needs of the chronically ill as well as those with acute conditions.
• Family caregivers should have input into the design of community-based programs aimed at helping themselves and their loved ones.
• Medical education programs need to be reformed so that doctors, nurses and all healthcare professionals have a greater understanding of how to work constructively with the chronically ill and their family caregivers.