Adventures with Leslie, Duty and Privilege

One of the new jobs in my role caring for my sister, Leslie, was taking an oath as her representative payee.

I’ve taken government oaths before – as county executive and on the Maryland Economic Development Commission.

My solemn promise this time was to manage Leslie’s Social Security disability benefits.

Government benefits are a political football, and I’ve known both teams. In the last 10 yrs of my mother’s life, she rarely had a conversation without mentioning the $1million of Medicare coverage provided for her care.

I also have family members who (in my opinion) have unjustifiably tapped into the disability system. I have a relative trying to get on disability who is capable of working but doesn’t want to…and another who went on extensive travel, snorkeling in Hawaii and walking thru the pyramids of Egypt, after qualifying for benefits.

Leslie is a story of the system working as it was intended.

Social Security disability provides funding for room and board. It’s a federal government benefit and my job is to make good decisions with her money. It’s not without its own contradictions though…

I was told to set up a bank account in her name to manage this meager living allowance. My first thought was about the banking fees that would result from not keeping a high enough balance. Then I was told that if I went over $2,000 in that account, she would lose her overall eligibility for benefits. She can’t save and we can’t spend.

So how do we spend taxpayer money on the disabled?

Leslie is on Medicaid/Medicare to cover her medical expenses, and she would have benefits available to her if she goes into residential care. We haven’t made that decision yet.

My home is her home but I am also trying to figure out whether she would be well-served by a residential program.

The organizations that run “group” homes are usually non-profits who are paid with government benefits. I’ll let you know what I think of these homes as we begin to tour them.

Leslie is in a day program. This previously included a job putting stickers on products for $.10/hour, and then wiping down tables in the cafeteria. These “jobs” went away when she was caught in the quagmire of conflicting benefit programs (let’s save that for another time).

Leslie has a state-appointed Service Coordinator who ensures she is cared for and doesn’t run afoul of the various requirements for the various programs. These folks…wow! Let’s just say a giant thank you to everyone who works in the disability community. They are caring, kind public servants.

Carol A. Beatty is not only at the top of this org chart as the Secretary, Maryland Department of Disabilities, but she has dedicated her career to the care of the disabled in our community.

I believe every society is judged by how we care for our most vulnerable. When it comes to people like my sister, we’ve come a long way.

Share This Story, Choose Your Platform!