National Family Caregivers Association

By Mintz, Suzanne | The Exceptional Parent, November 1999 | Go to article overview
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National Family Caregivers Association


Mintz, Suzanne, The Exceptional Parent


Improving the Lives of Americas Family Caregivers

If you are the parent of a child with special needs, you are also likely to be a family caregiver. Care-giving comes on top of the everyday responsibilities of being a parent, or a spouse, a sibling, or a child. It involves the added emotional impact, the additional physical tasks, the financial concerns and the on-going process of grieving that are part and parcel of caring for someone who has a chronic illness or disability.

The National Family Caregivers Association (NFCA) was founded because caregiving demands recognition and because caregivers need a voice, information, and support.

Created by caregivers for caregivers, the NFCA is a non-profit organization which provides services in the area of information and education, support and validation, and public awareness, and advocacy. NFCA's mission is to make life better for our nation's caregivers. It is the only organization that reaches across the life span, the boundaries of relationships and different diagnoses to address the common needs that bind caregivers together.

Our philosophy is one of self-advocacy and self-care. We believe caregivers (particularly those who are providing intensive levels of care) are under-supported, inadequately trained, misunderstood, and sorely taken advantage of by a healthcare and social service system that does not recognize that disability is a family affair; That chronic conditions require a very different approach than acute ones; That family caregivers literally underpin the healthcare system; and Caregivers are in many ways a vulnerable natural resource.

A NOTE TO EXCEPTIONAL PARENT

As the parent of a child who has special needs you are an advocate for your child-with physicians, with the school system, etc. You know the difference that standing up and being counted can make. But do you advocate for yourself?. Do you even recognize that you are a caregiver?

Helping caregivers identify themselves as caregivers and stand up for themselves is one of NFCA's primary goals. It is the first step in empowerment. A recent NFCA survey shows that caregivers want and need information, and they want NFCA to speak up for them, to be their advocate to the world. Over 95 percent believe NFCA's philosophy of self-advocacy is an extremely important message that needs to be shared with as many caregivers as possible. The more often caregivers hear it and practice it, the more empowered they become.

SELF ADVOCACY FOR FAMILY CAREGIVERS: FOUR "MESSAGES TO LIVE BY" FROM OTHER FAMILY CAREGIVERS

Choose to Take Charge of Your Life

"We caregivers often feel like victims, as if all choice has been taken away from us. We often ask: Why did this happen to our family?

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