When you have a kid with special needs... support needs... differences that affect their ability to function in a world not designed for differences... well, you go to a lot of meetings, and learn a lot of acronyms, and talk a lot about challenges and supports and needs. Lots. Of. Meetings. You spend a lot of time telling your life story and your kid's life story to people who have half a clue of what you are trying to communicate to them, hoping that your narrative rings a bell in the room and gets your kid what s/he needs, and quickly. You have to make your case to a committee of people, often not knowing whether their goal is to help your kid or help their budget. Sometimes you know its all about that budget, whether it should be (or is even legal to be) or not.
To be honest, we have been very, very lucky. As hard a road as we've traveled, most of the people we have met along the way have at least wanted to try to help. Some folks were more sincere and stronger about it than others, and the more these people are for advocating for your kid, the better off your kid will be. We've had some people who thought they were trying to help, but actually weren't. We had a few people who honestly couldn't have cared less. We had a saboteur, but not as many as we have seen other folks have to deal with.
By far the biggest surprise has been out FAPT committee people. FAPT is the "Family Assessment and Planning Team." In other words, its the committee for social services that when you need services, you go to them and state your case. You get there if you need something from local social services. In our case, we landed in FAPT because Joey needed a special school, and they are the folks who pay for it for the school system.
They have been the most totally supportive set of people we have come across in our adventure.
When we go into the meeting, they want to know how Joey is doing. They want to know if the services they are paying for are helping, or if we need to do something else. They want to know if he is getting enough speech therapy and occupational therapy. They were thrilled when Joey wrote them a letter expressing how happy he was at school last year. They were thrilled when he made an appearance last month at the meeting. At least, they acted that way, so even if they were just being polite, it was appreciated.
Our case manager is the school social worker, who puts together a package to present before we even walk in the door, so often I am out of there in about fifteen minutes. How's that for a meeting?
The only meeting that is harder is an IEP meeting.
See, one thing you have to do when you are going to FAPT is you have to lay out the reasons you still need them to pay for these services and schools. You have to explain that yes, things are better, but we still have these challenges. They want to get him back into regular school, and you have to face the fact that this is not only never going to happen, but you have to explain it to the committee why this is where he needs to be. I was doing this every three months. Even for just fifteen minutes, you find your heart broken for your child. At least these folks say things like, "wow, you are doing a great job, glad this helping! What else can we do?"
This morning, I had to go in and ask for a something else they can do. It was the hardest meeting I have ever been to, ever.
Let me lay out the process for getting a disabled child mental and behavioral support in this part of the world right now. You have an issue, which may or may not land you in an emergency room or being reported to CPS. You decide it is time to call in extra help. You pick up a phone and make that call, the one that just tore you to pieces to have to make. They ask if you have Medicaid. If you do not have Medicaid, about 80% of the time, they may as well hang up on you, because they won't even really talk to you. Medicaid only. If you are waiting for a waiver, or haven't applied, you are just screwed. They do not even accept private pay. Medicaid only.
You finally find someone who takes insurance and/or private pay, or will at least let you talk about making an appointment. But they won't make that appointment, because you need to have a VICAP. This is the Virginia Independent Clinical Assessment Program, and what it means is you have to be assessed to see if you need mental health or behavioral support services. It is only done through the Community Services Board (local social services) and the BHA (Behavioral Health Authority). So you have to call the local social services board and try to get someone to do this. Once you get someone to understand what you are even talking about, they tell you that they can't make the appointment until you go to FAPT, because you don't have Medicaid.
They do not care that you are willing to pay for this thing. They do not care that you are saying your kid is in crisis. You MUST go through FAPT to get this assessment that you need because unless you have it, no one will help your kid, and he needs the help NOW, because what you are saying by even asking about this stuff is that your kid is a potential danger to himself and/or others.
No wonder people fail to get mental health services in this country. I cannot imagine being the person in crisis and having to navigate this mess.
Before you go to FAPT, you have to call and ask your medical insurance if they will cover any of this. Your insurance tells you that they don't cover this because your kid is too old. I have no idea what people do if they need behavioral support as adults (for example, if you have anger management issues or an alcohol problem). I guess you get Medicaid or go through FAPT, whether you like it or not, because that's the gatekeeper to these services. Or just walk into an emergency room and hope. I don't want to think about what happens if you start getting this kind of run around and break down, just trying to access services, even when you are willing to just pay for them.
So I go to FAPT, and have to explain why I need a VICAP for a 14-year-old that they saw just last month looking bouncy and cheerful. I had to sit there and explain exactly what we were seeing, what was happening, and explain that the danger was immediate and significant. I had to go into specifics I won't go into here, and incidents I won't write about here.
Some meetings are just Hard.
This was one of those meetings I left with an appointment for an evaluation and assurance of funding, and all I wanted to do was go home and hug my baby boy, and let him know help was coming.
A few days ago I was driving with Joey and Andy, I think we were headed home from Grandma's house, and I mentioned the possibility of therapy. I asked him if he wanted some new ways of dealing with big emotions- anger, frustration, embarrassment. We talked about what happens now, and I asked if he would like to learn to do something different. He said yes. Not his "yeah" that he gives when he's not really interested or listening but knows you want an answer and affirmative is a good bet. Not that "uh huh" of a teenager shrugging me off. He said, "Yes." He looked at me and said "Yes."
Sometimes I have to go through the Hard to help him get through the Hard, to get him what he needs to find the light at the end of that long tunnel. He is on board, so I got through that hardest fifteen minutes for him.
From here, let's hope the meetings get easier.