Thursday, March 15, 2018

2018 Memory Day: Call to Action!

Last week advocates from across the state of Missouri visited the state capitol. Jessica and I traveled from Sedalia to meet with Senator Sandy Crawford, Representatives Dean Dohrman, and Nathan Beard. We would also lend support as needed with our fellow advocates.

It was a brisk day and the security line was long. We worked our way through the line in time to be recognized on the House of Representatives floor.

Our first appointment was with our senator, Sandy Crawford. We waited in the hallway for our fellow advocates, Crista, Jennifer, and Mindy to join us. After the introductions, Jessica explained the importance of the Alzheimer’s grants for respite. She explained that 110,000 Missourians have Alzheimer’s and that their 314,000 unpaid caregivers need an occasional break from the daunting task of taking care of a loved one at home. The $450,000 grant is in the budget for the Department of Health and Senior Services.

A survey of caregivers show that 99% state that respite helped them to care for their loved one at home longer. Sixty percent of nursing home residents in Missouri is paid for by Medicaid. Respite helps 500 families, and if those families could keep their loved ones home two months longer, it could save the state of Missouri $2 million in Medicaid nursing home payments.

Two months is a conservative estimate. I know that having home health care for Jim made it possible to keep him at home about six months longer. I received a small reimbursement through respite funds that helped me pay for his care. This was the only financial help we received, because Jim was too young for the programs in place to help seniors.

I explained the Structured Family Caregiver Act. This Act is designed to provide a new level of support for Medicaid qualified care recipients. The caregiver must provide the personal care needs and live full-time with the person who needs the services. An in-home agency administers the program. They provide professional support with care planning, training, monthly visits, and remote consultations.

This pilot program will be limited to 300 care recipients. It would provide a cost effective alternative to nursing home care. How exciting this will be if it passes! Family caregivers often have no experience providing twenty-four/seven care for another person. They often don’t know what to expect or how to handle difficult behavior.

The Structured Family Caregiver Act needs support! We opened the door and now we want our fellow Missourians to keep it from slamming shut. The bill sponsor, Kurt Bahr, is about to term limit out. If this bill doesn’t pass this session, it may never be proposed again. If this pilot program proves successful, it could well be a new model for keeping loved ones at home much longer.

I had a lot of family support with Jim, and I was much younger than many family caregivers. I often wondered how older caregivers could manage, especially without family support.

Caregiving is hard and often life threatening. The stress of being solely responsible for a person with dementia leads to health problems for the caregiver.

If you live in Missouri, please write, email, or call your state representative and senator today. It just takes a few moments. Ask them to fund the Alzheimer’s grants for respite and to move forward with the Structured Family Caregiver Act and then vote to pass it. If you live in another state check with your Alzheimer’s Association public policy staff to see how you can become an advocate.

Alzheimer’s is an equal opportunity disease. It affects Republicans and Democrats. Alzheimer’s knows no racial or economic limits. Anyone can get Alzheimer’s and people like you and me wind up being caregivers or being cared for by our spouses, daughters, sons, or even grandchildren.

Until we find a cure, we must provide extraordinary support for family caregivers and quality of life care for those who have Alzheimer’s.

Copyright © March 2018 by L.S. Fisher

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