A couple of weeks ago my 21 year old daughter moved out into her own house. I have been working and planning on this moment since she came to me nearly 12 years ago. My daughter has a genetic syndrome (cri du chat syndrome) and has severe to profound intellectual disabilities. She has multiple physical disabilities, uses a wheelchair and is deafblind. She does communicate wants with sign language and gestures. She isn’t independently mobile unless she is crawling on the floor, and relies on others for help with all ADLs.
Three years ago we relocated to a new town because I found a home that had a carriage house in the back yard. This sounds more glamorous than it is. It really is an old carriage house, and was built at the time when homes in my area were built with summer kitchens in the back yard, and was moved to the property to serve as the summer kitchen. Prior owners illicitly used this backhaus as rental property. With the help of my friend Amy Robertson, I got our town to agree to allow my daughter to live in the backhaus with a caregiver/roommate as an accommodation under the Fair Housing Act. Because she is a relative, we are not violating any zoning provisions, but the backhaus was never approved as living accommodations, hence the need to have it approved.
I spent the summer having the backhaus renovated to make it livable for my daughter. I then began the search for a roommate to live with her, and found a delightful young woman to join my daughter. My daughter is on the waiting list for developmental disability services, so she is receiving attendant care through the Medicaid HCBS-EBD (elderly blind and disabled) waiver. Through the Consumer Directed Attendant Support Services (CDASS) program, I am able to hire, train and supervise her attendants. She has attendant care throughout the day. Her roommate provides overnight care five nights a week. Due to my own need for awake care to attend to my ventilator, my attendant keeps an eye on her through a video monitor the other two nights.
My daughter is so happy in her own house. On her first night, I had one of our attendants go out and check on her. My daughter sat up in bed, removed the covers from her head, and signed “no, no, no! go, go go!” The next morning when I went out to check on her, she again signed “no, no, no! go, go go! ” and “bug off!” She was content.
She just finished public schools last spring. She is happy to laze around and sleep until noon, and be awake half the night. We are still working on getting a full routine of afternoon and evening activities to fill her days. She goes swimming frequently and bowling with friends weekly. She is on a waiting list for horseback riding, and she volunteers with the Salvation Army as a bell ringer during the holiday season. She fell off the age 21 cliff a few months ago, but her post-school life is coming together nicely, and moving into her own home is a big part of it.
One down, three to go!