Adventures with Leslie: Frappes are the Bomb!
I wasn’t sure how much to do for my sister Leslie when she arrived at my house. In many ways she is an adult, and in others, she is sweet and child-like. This contrast presented itself right away when it comes to household chores.
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.
Adventures with Leslie, New Goals
Adventures with Leslie continues…yesterday was a big day for new goals.
It’s July 4th weekend and we’ve been hoping for some downtime, which means pool-time. My children and I took Leslie to get a swimsuit (we weren’t successful).
Adventures with Leslie: Her First Week with Us
I’ve stepped out of my career for a moment…and learned a few lessons in my new role. My mother recently passed and she left us, unsurprisingly, without a plan for my developmentally disabled sister.
Adventures with Leslie: Planning for the Future
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.
Adventures with Leslie: The Beginning
I’ve stepped out of my career for a moment…and learned a few lessons in my new role. My mother recently passed and she left us, unsurprisingly, without a plan for my developmentally disabled sister. I am currently in Adventures with Leslie! My sister is living with me until we figure out how to best support her. In the last week, I have watched my sister go from introverted and feeling like a burden to taking on surprisingly new endeavors. Leslie was afraid of stairs and public sidewalks. She arrived at my house scaling steps on all fours. She is now walking upright, inside the house and outside. She walked to Starbucks, her favorite place, from my house without holding my hand. Leslie consistently refused to attend field trips or organized events with her peers. On Wednesday, she went on an outing with Chimes for the first time, and returned home bursting with enthusiasm to share her day playing games at the park. Leslie’s speaking language was almost indecipherable when she arrived. After a week of non-stop talking in my home, she is easier to understand, even for my teenagers. Leslie has had a haircut, put away dishes on her own and, after I had a debate with my son about the necessary bedroom shifting to accommodate another person in the house, she sat down next to me and put her arm around me. She understands empathy. We’ve had our mishaps. On the first night, root beer was spilled all over my living room, destroying the remote and requiring a rug cleaning. Food now stays in the kitchen. We’re working on table manners, patience, and a complete change in diet that includes water as a beverage. My teenage children are learning patience too. They’ve always been the center of attention. Now they help Leslie, prepare meals for her, and accept that things don’t always go as we want them to. It’s been a week of adjustment, learning and kindness. Photos are of Leslie the day she arrived and a week later.
