Exceptional People, Exceptional Lifestyles  

My daughter graduates from high school next year at age 22 and after years of fighting the Georgia special education public school system to ensure a quality education for my daughter, I now find out that the fight has only just begun. You would think that after all these years, at long last the anticipation of seeing our young adult daughter in her cap and gown being rolled across the auditorium stage in her wheelchair to accept her special education diploma, could be relished as a family achievement--and it will be for a short while.

However, there is yet another fight to come, another race to win, which is the fight for placement in the limited day programs available to ensure the continued mental and physical stimulation needed for Sierra's ever progressing mental and physical development.  As most parents like us know, our children never stop learning, some of them may just do it a little slower than others and this is a fight that hundreds of thousands of families like mine face across the nation.  We want and need that educational stimulation to continue.

Despite having filled out the forms, met with the social workers and all that goes into getting our children prepared to transition into adulthood and independence of  sorts, we're learning it's not as simple as that, because programs that offer continued education and/or independent living facilities are few and far between, as well as the funds to pay for them. Despite our daughter's will, curiosity and frustation, she is not independent.  Born with cerebral palsy, Sierra doesn't have the mental capacity of a 21-year old, but of a child much younger.  However, she gets excited by the interaction with others, the challenge of working on her independent living skills and the overall fun she has having some place to go every day. In fact, we like it too and don't want that to stop and if we have anything to say about it, it won't.

The problem is that these day programs and independent living facilities providing these services are cost prohibitive for most caregivers and while many families are not exactly poor, not too many are very wealthy. It's closer to the truth that many, many families can be considered low income families on very shaky financial ground. These people desperately need government funding assistance to pay for these expensive day and independent living programs. 

The fight we're having here in Georgia is that there are more than 7,000 people waiting on a list to be placed in one of these programs, but there are no funds to pay for them, in addition to the fact that very few of these facilities exist. This situation is not exclusive to Georgia, where this year millions of dollars have been significantly cut that would have placed at least a couple hundred people in programs in 2010. Unfortunately, this is one of those scenarios where voters voices didn't seem to count, even though hundreds of disability advocates descended on the Georgia Capitol to speak with state representatives and senators during the recent legislative session, lobbying for funding and services.  However, to our extreme disappointment, it was to no avail--but the fight is not over.

So as my family prepares for our next fight to ensure that Sierra continues to blossom because of the consistent educational stimulation she's received over the years, as she readies herself to leave high school we know other parents like ourselves are also getting ready to fight their newest battle.  We encourage all these parents to take a deep breath, put on their emotional armor and step out in faith to secure the help your child needs as you've done throughout your child's life, and fight to the end. We have no choice, although we may be tired, although we may have wished there would be a short reprieve, we must continue to jump into the fray and fight because we're all they've got and they're depending on us to win the battle--and we will.