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OP-ED: We should transform caregiving for National Family Caregiver Month


Transform caregiving for National Family Caregiver Month

The best way to honor family caregivers during National Family Caregiver Month, being celebrated this month, is to drastically reduce the need for them.

I have a disability. I use a motorized wheelchair. I employ a small crew of people to assist me in my home with daily tasks such as dressing and bathing. No one in my crew is an unpaid family member. I hire and supervise my workers. A state program partially funded by Medicaid pays their wages.

But most people in my situation don't enjoy this kind of freedom and autonomy. According to statistics compiled by the Centers for Disease Control and Prevention, more than 34 million unpaid caregivers provide assistance to an adult who is ill or has a disability. Unpaid caregivers provide an estimated 90 percent of long-term care in the United States.

This is exploitative and unfair for everyone involved. People with disabilities who need assistance have a right to receive help from the people of our choosing, and those people deserve to be paid a good living wage. But most state and federal long-term care policy is antiquated. Thus, millions of people who need assistance but can't afford to pay for it themselves have no choice but to go to a nursing home. To avoid this awful fate, they turn to unpaid family members.

Caregiving should be viewed as a community responsibility rather than a solitary family burden. The billions of tax dollars that are spent each year warehousing people with disabilities and old people in nursing homes should instead be spent supporting them in their homes and communities.

Our excessive reliance of free family labor is a dismal indicator of how far we are from achieving this type of justice. Let's attempt to change that by next November.

— Mike Ervin is a Chicago-based writer and a disability rights activist with ADAPT (www.adapt.org), a national organization of such activists.