So, my son, who deals with several cognitive and behavioral disabilities, turned 18. A great milestone right? Graduation, prom, college applications, heading down to the local resort town with his friends. [Insert really loud screeching to a halt sound for dramatic effect] Nope. Not here. Ok, well, yes, we have graduation, which I am over the moon about, but all the other things just won’t be happening here. I am very happy for my friends, seeing their children get scholarships and heading off to wonderful careers; no sarcasm at all. I also believe that my son will go to college at some point and he will get a job, make friends, but it will take a while. You see, a lot of people don’t realize that children who “age out” of services when they graduate from high school literally are thrown out into the world with not much support or services. Several years ago, I worked for a national advocacy agency as a statewide coordinator for people with disabilities, working with lawmakers to introduce funding and help for those in need. I was met with a lot of support and a LOT of opposition. For those who don’t live day to day with these issues, it’s a battle that never ends. I met parents in their 80s still taking care of their 60 children in wheelchairs with no in home help, and that’s just one of a thousand examples.
We, as a society, tend to be very critical of anyone who receives services. Now, don’t get me wrong, there are plenty of people out there who receive services who are deceptive and are taking advantage of the system. However, there is a real need for support services for many. My son, although he is receiving a state diploma, is graduating with a modified program. That means that his learning is not at the same level as others who graduate in the state. For him, entry level classes in college could be very overwhelming. So, having support services such as training, educational advocacy and other supportive environments are critical to ensure that he IS able to receive a higher education and that he CAN apply for and land a good paying job. That’s what people miss. If my son doesn’t have the support to thrive, then he will most likely live off of government programs. The investment in children and young adults with disabilities is a win-win situation for us as a society.
Then, we move onto, “Ok, that sounds great, but how are we going to PAY for all this?” I do not pretend to be an expert in government finances, funding allocations or other such things, but I do know that we are not funding enough. For example, my son was on a waiver program through my state for children with Autism. He received funding for an in home technician, who came to the house a few times a week and helped him with personal and social goals. The DAY he turned 18, it ended. Just POW! No more tech, no more funding. To add insult to injury, Social Security “claimed” they didn’t receive vital paperwork that was sent in well in advance that would ensure the continuation of his medical and financial benefits that would ensure his success and the payment of his prescriptions. Without those prescriptions, he will wind up in a psychiatric hospital, which will cost a whole lot more than if he has the funding to pay for them. While as a widow, I do receive survivor benefits, it often creates a very tight financial situation for all of us. I am often criticized for “not working”, although my days are filled with many phone calls, visits, school meetings, research due to the school being ridiculous and fighting me for my failing daughter (oh that’s another post!), and the fact that I can’t afford day care. I would LOVE to have a master’s degree and be off in an office doing great things for those with disabilities. My abusive husband forced me to stop going to school and refused to pay my student loan and it went into default. (that’s not just a post, it’s a book I’m publishing) So now, if I want to continue school, I need to pay for my classes. There is a very stressful, vicious cycle that comes with abuse, having children with disabilities and the DESIRE to be educated and work. If you complain, then you’re not grateful, if you don’t work, you’re lazy. I DO work, but it’s as a mystery shopper for very little payments, but I can schedule them when the kids are in school. I TRY.
For example, over the past week, I have spent more than six hours either on the phone, writing letters, sitting on hold and driving to locations to deal with paperwork issues just for my son. That doesn’t even touch the ten plus hours I’ve spent on the phone and in meetings and doctor’s appointments regarding my daughter’s school issues. The reason I posted this discontented diatribe on the things facing families raising children with disabilities is because it’s not just an isolated incident anymore. We are dealing with a crisis, even if I just quote Autism statistics. Some think that buying and turning on blue light bulbs is going to make a difference. Sure it will, in the pockets of those selling the products. Sure, some of the pennies will trickle in, but if the money spent on lightbulbs alone was allocated to help one community with services, the results would be staggering. We need to step up to the plate and realize that it truly does take a village to raise a child. By isolating, alienating, cutting off funding and forcing parents to become desperate caregivers for their children, we are inviting a generation of families who will rely more on public services to survive rather than THRIVE.