The days start early for 50 year old Bobbie Gish who sets her alarm for 5:30 every morning. She gets out of bed to draw a warm bath surrounded by bright yellow rubber ducks and sets out a toothbrush by the sink.
Bobbie turns on the lights in the hallway leading up to her 20-year-old son Matt’s bedroom. The room is painted with life-size Winnie the Pooh characters and is dimly lit by a Winnie the Pooh night light. After a gentle rub on his back to wake Matt up, it is time to start the day.
“Come on buddy, it is time for your bath,” Bobbie says, as she signals with her hand for him to follow her. The hand signal is one of very few signals she uses to communicate with Matt.
Matt suffers from Down Syndrome and has no speech ability. He is one of four children in the Gish family. Bobbie says Matt’s daily needs have become a normal part of her life over the past twenty years. However, Bobbie worries every day about changes that will happen to her daily routine next year.
Bobbie says she knows the days she spends exercising with friends, cooking and cleaning while Matt attends school at Lawrence Free State high school are coming to an end.
“What is so scary is that I have this big question mark after he leaves school,” Bobbie said. “I am terrified because I am losing a huge ally and I don’t really know what is out there for him.”
The state of Kansas requires young adults with disabilities to attend school till the age of 21. After graduation, it is up to the Gish family to decide the next stage of Matt’s life.
Bobbie is making plans now for Matt’s future and she says it is not going to be easy. Matt struggles to make friends and develop meaningful relationships beyond his siblings, who Bobbie says are his best friends. Matt rarely participates in outside activities or organizations beyond occasional trips to the track for a walk with Bobbie or swimming at the Lawrence indoor aquatic center. Bobbie hopes to spend the days with Matt doing the activities he enjoys, but she worries that having Matt at home will not help him continue developing.
“What scares me is him having just me, day in and day out, to provide for his daily activities. It would not be good for him to spend his days roaming the house, I am afraid he would regress,” Bobbie said.
The Gish family believes that it is not the right time to send Matt to a group home for people with disabilities. Without the ability to express when he is frustrated or tired, Matt occasionally has poor behavior. According to Bobbie, Matt is likely to throw things or hit both his siblings as well as strangers out of frustration. With unpredictable behavior, and the challenge of trying to know what he is thinking, Bobbie worries about Matt in a group living arrangement.
Organizations, like Cottonwood Inc. in Lawrence, provide several options for people with disabilities including employment, in home assistants and a live-in community.
“Families need to feel that there is a place that will benefit the individual with the disability. That is the first step and that is a huge one,” Peggy Wallert, Cottonwood director of community relations and development said.
Several families are faced with the same decision Bobbie is. According to the Down Syndrome Guide of Greater Kansas City, approximately 4,000 babies are born in the United States with Down Syndrome each year, affecting about one-quarter million families. The state, according to Bobbie, does not guarantee money to people with disabilities after age 21, when they must graduate school. Matt’s name is on a waiting list that could potentially take up to two years for financial aid.
“The person with the disability must first become eligible through the state and then funding is provided through Medicaid,” Wallert said.
Wallert also said that each family is typically matched with a case manager through the government who can counsel and advise families based on the individuals needs. It is the case managers role to explain options and support families in making decisions.
Bobbie and her husband think the best option right now is for Matt to live at home until his youngest siblings, who are currently 12 years old, move out for college. She feels when the time comes, she will know what the best option is for Matt. For now, Bobbie will continue to take it one day at a time.
“It is very hard for us to even think about him going off to a group home, but, someday we may feel differently.”