By Dana Yarbrough
Parents before me had often mentioned this cliff that they faced when their son or daughter transitioned out of the public school system between 18 and 22 years of age under IDEA. I vaguely pictured this cliff but, thought to myself that the road I had planned for my daughter Brooke’s transition journey wouldn’t end at a cliff. Although Brooke has diagnoses of Cerebral Palsy, Epilepsy, Cortical Visual Impairment and Intellectual Disabilities, beyond early intervention and later special education supports, she had always lived outside of the disability service system. Brooke didn’t receive SSI or long term care services from Medicaid or vocational rehabilitation supports from DARS. We, as her parents, provided her supports and had hoped as she aged that the services system would improve and be more readily accessible. This support by me and her father has come for the most part at the expense of one of us not working or only working part-time. When Brooke was young, I worked two or three part-time jobs so I could be home with her. When she hit high school, her father stopped working to support her daily needs as I incurred back and spine damage from constantly lifting her.
A month after Brooke graduated in 2012 with a Special Diploma, she opened her own business; Brooke’s Happy Tails Dog Boarding. At that time, it made sense for her to go back to school to continue to work towards a modified diploma and to take additional general education classes that would help her with her business. During the four years Brooke participated in school as a post graduate, her dog business grew to 23 clients; she applied for and received SSI to supplement her business income; and completed eligibility paperwork for Medicaid Waiver/long term care services (although she is on a long wait list for services).
Fast forward to this summer and Brooke’s 22nd birthday. This is also the summer she officially ended her school career – this transition to post high school life. Since August, Brooke has exhibited through her behavior (she doesn’t talk) signs of depression. She isn’t sleeping, she is restless, and is moody at times. Not at all the same Brooke we have known for two decades.
I’m now standing at the precipice of the transition cliff and the view is very cloudy. Although I am not personally a fan of day support programs in which only people with disabilities participate (and I get that there are some day support programs operating like a child’s day care while others are more progressive and working on job skills and discussing the daily news), it is one of the options covered by a Medicaid Waiver if and when Brooke receives her ‘slot.’ But to be proactive and to help Brooke have a place that replicated the routine of school, I called a local day support program that several parents of transition-aged youth told me might be a good option for Brooke. We toured the program in September and discussed privately paying for Brooke to attend several ½ days a week; even though it would be a financial stretch. The program application paperwork that was promised to be in the mail never came. Emails to them are unanswered.
I am fortunate that my employer is flexible and disability friendly – they fully supported my request last month to switch to a four 10 hour work day schedule so I could spend more time with Brooke and hopefully plan one day or three day weekend trips. I haven’t been able yet to get all of my meetings off the schedule of my day off and Brooke has had 4 legged clients many of those days, but we are hopeful that in 2017 we can make it work. And, we are talking to a day support program in our county but, do not know whether there will be openings for part-time participation, if we can afford it, or if it will even be appropriate for, or of interest to, Brooke.
**Dana Yarbrough is the Director for the Center for Family Involvement and holds many leadership roles at the Partnership for People with Disabilities at Virginia Commonwealth University, home to the CFI. Dana coordinates family support and post-school transition projects. She also supervises the work of parents and individuals with disabilities on staff and as volunteers. Most importantly she is Brooke’s mother.