Advocacy, persistence make a difference in one man's life

The Examiner

During my 40-year journey of raising a child with disabilities, I have met many mothers who were on the same trail.

These moms and dads were in their 70s and 80s, and they were still caring for their adult child with disabilities.

Diane Mack

I heard their wishes, their hopes and prayers, that their child would pass away first. That is the prayer from nearly every aging parent I’ve ever met.

It’s the same with me. Since my daughter Kelsey was little, I too have prayed that she would pass first.

Otherwise who would take care of her?

Who would provide for her daily needs, apply annually for her ongoing programs and services, and pay the extra unplanned costs? Most importantly, who would keep her safe, loved, and protected?

Let me review the part-one story of Larry, from last week’s column.

A local bank phoned me about a customer named Larry.

Larry had disabilities and lived alone. Living alone without support was not his or his family’s life plan for him. His father died. Then, his mother suddenly died.

They had left Larry a small amount of money, which was gone when his 20-year-old car broke down. Larry had a part time job and very little income. He was not on Social Security disability.

Meeting with him and listening to his needs, I could see an obvious disability.

Not that I’m the authority. However, after reading a few bits and pieces of his life on paper, it was evident.

Sadly, Larry did not receive Social Security disability. His mom and a neighbor had repeatedly applied for SSI but with no success. Many applications were left unfinished, for decades.

So I added Larry to my care and for four years, applied for every service, system and assistance out there.

This was not easy. After the question of, “Is Larry on SS disability,” they shut the door.

We couldn’t even get his school records, which were in California.

I thought about Larry’s mom and how much she loved him. I could see that she tried diligently to secure Social Security for him. Toward the end of her life, when she was very ill, I am sure she grieved more for Larry than herself.

What would happen to Larry?

Unfortunately, because Larry had a small work income, he made too much to even apply for Social Security disability.

Considering he could not make his house payment, it would be a matter of time before Larry would be sleeping in the street.

So I kicked my advocacy into high gear.

I persuaded a friend to do an $800 psychological evaluation for free.

I spent hours on the phone with Social Security and took Larry to the office frequently.

I canvassed the city for churches that could help.

I applied for reduced or free utility assistance, sewage and water.

I applied for food stamps for him and Medicaid.

I applied for state DHSS, DMH, VR, for any in-home support or possible part time employment.

I applied for a small-term life insurance policy for him and paid the premiums. At least, I could do that for his family.

I met with the bank and begged them not to foreclose. Then COVID hit and banks were “prevented” from foreclosing, at least, temporarily.

By the time Larry had moved further toward Social Security eligibility, darn if they didn’t need another disability evaluation. The $800 eval from two years previous was too old.

I couldn’t get mad at Social Security. But I did get more aggressive asking for supervisors.

The end of this tale is Larry just received his first Social Security payment. They didn’t compensate him for 40 years of applications. But they did go back several months and compensated him.

Lastly, I called the Missouri State Veterans Cemetery to see if he could be buried by his parents, because he was disabled.

He could. How his mom must be smiling.

Perhaps, if I die before Kelsey ... someone will do the same for me.            

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