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Diane Mack: Caregivers need better support from state of Missouri

Staff Writer
The Examiner
The Examiner

I belong to several caregiver Facebook groups. Between all of the groups, I believe there are over 40,000 members.

My heart breaks when a caregiver posts, ”my mother gained her wings” or “my daughter is finally free from her wheelchair.”

Most have been on duty for at least a year.

Some caregivers have been caring for a loved one for 30 years.

Did you know that more than 65 million people in the United States are caregivers?

Franca Martino-Starvaggi, director of social work at the Schervier Nursing Center in Riverdale, New York stated, “I’d say the most challenging part of the job is always worrying that you haven’t done enough ...”

I have been on the front line as a caregiver for my adult daughter with disabilities.

I have served as her volunteer caregiver. I have served as her paid caregiver. I have also served as a house manager, directing dozens of her caregivers.

I interview them. I hire them. I train them. I monitor them. And I also fire them.

Missouri has thousands of caregivers, just like me, who are dealing with the stressors of caring for a loved one.

COVID has only made our work far more difficult and much more intense.

Every day, I balance my daughter’s well-being, while trying to maintain my own health.

I feel exhaustion after a day of bathing, feeding, and daily living activities.

I know the ongoing anxiety after a physician or hospital visit.

I've emptied my bank account, paying for her equipment.

I have also dropped the equipment on my feet. Recently, I broke two toes.

I know the ongoing worry of, what if she falls and I, or her staff can't lift her.

At the end of the long days, I realize that I have neglected my own needs while caring for my daughter.

Many wait years, on Missouri state wait lists for programs, to hire caregivers. I too waited years for my daughter's services to be approved.

Two of my daughter’s coordinators (her assigned state employed advocate and lifeline for annual services) were the actual roadblock to any service for my daughter.

Their suggestion for meeting her needs was, "Why can't you watch her?"

I have met countless special-needs single parents who were the sole in-home caregiver for their loved one.

These families had been waiting five to six years for their family members’ services to be approved.

Last week, I met a grandma who had waited 14 years, yes, 14 years, for services for her grandson with disabilities.

When I asked this young man’s assigned coordinator and the director of the agency responsible why there were no in-home services for the child for 14 years, the coordinator asked me, “Why can’t grandma care for him? Isn’t that what she is supposed to do?"

I am tired of state and county coordinators pushing facility placement and prioritizing their facility clients’ services over those who choose to live at home.

Facility placement costs taxpayers at least four times the cost.

My blood pressure is going up.

Far too many families are on a disturbing red tape roller coaster ride, which is cruel and heartless to an individual with special needs, and their family.

So where does the buck stop? Until Governor Parson cleans house, Missouri will forever remain the same.

Let me conclude with Rosalynn Carter’s words.

“There are only four kinds of people in the world; Those who have been caregivers. Those who are currently caregivers. Those who will be caregivers and those who will need a caregiver.”

In other words, y’all get ready.

Diane Mack is coordinator of Putting Families First, Jackson County's Family Week Foundation. Email her at Director@jacksoncountyfamilyweek.org.