Back in June, I wrote my manifesto on the role of a parent, and a child's right to live.
Now we need to take a look at another facet of the problem. That is the common claim that, somehow, a lack of services is an excuse to murder your child. It is not.
What I find more frustrating is how those services are described: services for the family, services for the parents, if only that mom had more support and services...
Where the system is broken is not in the services the parent needed. As an adult, I take that responsibility for "services" myself. It is up to me to put together my network of friends and family, and make it strong. If you are unaware of what services are available to you, I recommend contacting family support services, whatever they are called in your area. In my area, we have a Disability Resource Center, we have the Community Services Board, and our school has a Parent Center. Heck, call the school guidance counselor, they know people to call. If you attend church, mosque, or temple, they are a good place to call. Need an idea of what kinds of services you need? Look into these: a therapist or counselor for talk therapy, respite services, support groups, local activities, and hobby groups (which are good for respite and support). If you can't find someone in the neighborhood to be a buddy, hop online. There are lots of support groups, pages, and people out there to help and welcome you. Even if your child has a rare condition, there is someone, somewhere, who is also looking for someone to talk about it and how it is affecting their family. You are not alone. If nothing else, drop me a line, I'll work on it for you. And since you are out there, check on all the threads in your networks, and make sure they are doing OK. Send them silly cards. Send them virtual hugs. Send them prayers. Whatever you think they need to make sure they are OK, and let them know that if they aren't OK, you want to help, and not judge them. Its kinda like the penny exchange. Have a friend, be a friend; need a friend, here's a friend. We are all in this together, people. Really.
No, that's not the broken part. The problem is not in services for me. It is the issue of getting services for my kids (or for your loved one... child, adult, cousin, friend, whomever). Services that they need, they deserve, and they have the right to get. As a society, we are all in this together, and so we all pitch in to provide means and services for those who need it. Fairness and equality is in making sure everyone gets what they need, not in making sure everyone gets the same thing. My kids need support to learn to do things independently and effectively. They need to be taught how to control their temper and communicate their needs effectively. They need speech therapy, occupational therapy, sensory integration therapy, vision therapy, extra teachers, paraprofessionals, and supports. They need certain equipment and specific methods and trained people. And if they get all these things, we will have adults who are as independent and living as well as they can, and contributing to the world around them as much as they can. If they don't, they won't. It really is just that simple.
But getting the services they need is not that simple. All of these things cost money. Everyone wants to pass the buck and no one wants to help pay for what is needful. Even when the costs are minimal, you have roadblocks: they take time, or patience, or understanding, or other effort that far too many people don't want to expend- mostly because they see your child as a waste of resources. You pay into the pool of medical insurance, but they decide they don't want to pay for the services your child needs to succeed and be independent. They pass it off as educational, and thus for the school to pay for. Or your child makes some progress and is suddenly not disabled enough to be considered eligible for service, even though they remain behind. The doctor prescribes therapy and intervention, but as soon as it starts actually working, the plug is pulled... and this is discrimination at its most devious. When the doctor prescribes a ten-day round of penicillin, the insurance company doesn't just pay for two days, since that's when your symptoms improve. You have to take the whole ten days, or the infection recurs, and often worse than before and penicillin-resistant. You may even need to take medication for an extended illness until the doctor proclaims you cured. But if your doctor prescribes occupational therapy, the company can simply stop paying- without recourse or warning- because they decide you seem to be improving. Or they can chop you off arbitrarily, whether you are better or not. Shouldn't my doctor be deciding if I am done with my cure or not?
Then the schools. Holy crap, trying to wrench your child's rights and services from the schools, it is enough to make you scream in the night. Even if you find a method that works, you have to fight for it each and every time, each and every grade, each and every teacher, each and every school. Ignorance is rampant, at every level. And then they tell you that a service is medical, not educational, so they don't have to provide that, you have to go through your medical insurance. You know, the insurance that just denied the service because it's educational.
And you know what? Medicaid and respite services are not for the mom and dad. They are for the person with the disability. There is a new person to check on them and work with them, and the caregivers get some breathing time to recharge so they are better able to help. Respite helps keep everybody healthy.
The constant battle to maintain the right to life, liberty, and the pursuit of happiness is wretched, ugly, and depressing. Depression kills.
And it is all completely unnecessary. If we valued our neighbors, our people, we would be investing in making sure their rights to life, liberty, and education were being met and upheld. Instead, schools hold bakesales to make ends meet. When a treatment becomes available and is prescribed, the person should be able to access it- the FULL treatment, without having to resort to bankruptcies (when the family goes bankrupt, how do you think that effects the person in need of support?), community fundraisers, and war with bureaucracies at every turn. My children should not suffer because I am a poor politician, or a bad negotiator, or even if I'm a complete ass. They should get what they need, and the supports that are their right. Period.
The reason they don't, the reason parents have to go to war and wage constant battle to get those rights respected is because too many people do not see people with disabilities as people. They see them as lesser, as wastes of resources, wastes of time. Or they view them as somehow forever children, to be patted on the head and seen, but not heard. They are seen as drains on budgets and stretchings of staffing, rather than as people with needs. The supports are viewed as advantages and perks, rather than access.
It always amazes me, however, how many of these roadblocks wear glasses. They would be aghast if I arbitrarily declared they were not permitted to wear their glasses during my IEP meetings, because those glasses give them unfair advantage, and look ugly, and do they REALLY need them, anyway? But they have no problem saying this about the accommodations our kids need. And adult support services? Talk about leaving people out in the cold...
So we need to start tackling these problems, from a lot of different angles. Everyone needs to understand that people are people. No exceptions there. That my kid has the same right to live and be educated in this country as any other kid in this country. Then we need people to understand the important in investing in that education, and the education system. At the same time, we need to make sure adequate and appropriate support services are in place so that everyone gets what they need, when they need it, and for the full course of the need. No one should be scrambling to pay for their last eight days of penicillin.
As parents, we need to know, to our very core, that our children are precious, and the owners of themselves and their own lives. We have no right to take that away from them, for any reason. Even when we make mistakes. Even if we are jerks and horrible at our jobs. Even if THEY are jerks and make mistakes. If we can't understand that through every fiber of our being, how can we expect those who stand in complete ignorance to ever understand it? You can't teach what you don't know.
Your children are my children. Your families are my family. We must understand the preciousness and respect the lives of all of us. Check on each other. Keep an eye on your own life and fatigue levels. Watch for depression to sprout up around you, and take steps to protect those who fall to it. If you feel you made a mistake, come to the boards and post it out, and we'll rally to try to figure it out and fix it. Because we love you, we love your kid(s), we love your family and your community. And we are all in this together.
United we must stand.