I’d like to introduce you to Devon, my 21 year old daughter. She has multiple special needs including needing assistance with walking; she often uses a wheelchair. She is nonverbal, (except for the word “pizza”!), and developmentally delayed and functions cognitively at about a 3yr old level. Devon needs assist with eating, dressing, and is not toilet trained so needs help toileting. She also has a seizure disorder. According to the CT Department of Developmental Services she has the second highest level of need requiring 1:1 assist 24/7.
In June 2017 she graduated from the special Education program at our local High School. Typically state funding would be available to send her to a day program I have already found for her. But our Governor has cut the funding for new grads, and I cannot afford to send her and pay out of pocket. I am a single mom and work as a nurse in 2 different jobs. In the interim, I have hired a para-professional to work with Devon in my home who is trained to take care of kids like Devon, but I will not be able to continue to pay her ongoing; I have enough money saved to last for another week and one half. There are then two options; bring her to work (hospital) or quit working to be with her, neither of which is a viable option.
Any money I might earn on Go Fund Me would go toward supporting Devon in her new day program while I work. The cost of that support is $210.00 per day. The day program would have Devon interacting with her peers while partaking in various activities many of which are in the community. For example Devon has “volunteered” at our local senior center setting the table for lunch with hand over hand assistance and simple directions like “take” and “put”. She would go with her class to our local YMCA to swim, and take therapeutic riding lessons which strengthen her core and help her to walk. At the program the group would participate in music and cooking and physical therapies; Devon can stir a cake mix, for example, with hand over hand assistance.
At home she is isolated and cannot access the kinds of activities she would have in her program.
At this time the two year budget has no funding for Devon but may have as the year goes on; the key here is I have no way of knowing how long I will need to support Devon without the help of a day program. I am going to shoot for care thru October with my hopes and prayers that the state will come through. The total amount needed will be $12,600 dollars which would cover three months’ worth of program, five days a week.
I have included a video her school made for Devon for her graduation; it’ll give you a glimpse at who she is. You’ll get to hear her using her “pizza language” and hear her infectious laugh. She is the sweetest kid ever!
On behalf of Devon and myself I thank you for your time and consideration. God Bless.