That's a whole lotta government speak.
I mentioned a couple of weeks ago that we would soon be interviewing folks to serve as our sons' certified waiver option providers. Here's the back story.
About 10 or 12 years ago, a friend asked if our kids were on The List. I said I have no idea, what's The List? This, said she, is The List your kids with special needs must be on in order to get care
(a place to live) when they become adults. It was her understanding that in order to get services you had to be at the top of The List (TL). So. I said how do we get on TL? She said call your case manager at the County Department, which in our case is now called the Lucas County Development Disabilities Board (LDD.) I remembered that long before that, we had contact with LDD, because our kids are adopted through another county agency and they connected us. At least I think that's how we met, but it might have been through the county's special ed pre-school program. Quite honestly, those days are a blur now. There's no learning curve for this.
I spoke with caseworker Susan, who said that TL is indeed the roster of folks who need various support services, either as children or adults. Our kids lived at home so for the time being that aspect of their lives was okay. But what if? we keel over and die? we are medically incapacitated? we just plain get too old to care for the boys? Then what do we do? Enter Certified Waiver Option Providers.
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| Lucas County Children's Home |
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In the long ago past, children with special needs were shipped off to homes, usually before they entered school. Parents were told that it would be best for the child and best for the rest of your family. This was the norm, and was considered the Best Practice of its day. But its day came and went. Many brave parents took a stand and said, "We know how to best care for our children, and that means they should stay at home with us." A radical concept 50 years ago. Children with special needs were 'out of sight, out of mind.' My very best friend had an older brother in this situation, and we were BFFs for 4 or 5 years before she told me about him. How unimaginable today. The other part of that story was you had to disown your kids when they turned 21 in order for them to receive any services and they had to go to a Home. Talk about adding insult to injury.
But then how to care for your children at home presented its own set of problems. Lots of problems. Every thing from school to babysitters to diet to medical supplies to diapers to transportation, you name it, it was a problem to over come. I thank God everyday that other brave parents fought those battles and came up with creative solutions. And if not solutions, then at least systems to work out the problems.
For us the problems that remained were school and transportation. (The alleged director of special ed in our district was known as Cruella deBeck. It's the perfect mental image of the witch.) Our school battles were legendary. Our battles have helped some of the kids who are coming up now, although since every child is different, there's no "one good solution". We still hear from families who are struggling, trying to squeeze out every bit, every minute of good stuff for their kids, while they can. I could write for days about our school struggles, which continue to a lesser extent these days. Lesser because we're getting tired of fighting the system. Sad and true.
Transportation is our other problem. While there are services available, we live 30 minutes from anywhere. So that's a minimum of an hour in the car, with two screaming kids with autism. It simply wasn't worth it to put up with that, in order to see someone for a 15 or 30 minute appointment. The payback just wasn't there. And to do any of that after school was totally out of the question, because our kids used up every molecule of 'good' that they had at school. By the time they got home, their 'good' supply was completely depleted and they were running on fumes. Add to that, our kids were always the first kids on the bus and the last ones off. Not a good situation for anyone. Even now, FTD gets on the bus at 6:35 a.m., and home at 4:15 p.m.. How many able-bodied and minded adults can stand that kind of day?
Back to our story. When I spoke with caseworker Susan those 10 years ago, she said yes, both boys are on The List. I said so what now? She explained that all of the folks who might need services,
who are known by the LDD, are placed on the list, taking into consideration the child's age, severity of need, and parent's ages. So our kids are lower on the severity side of things, but DH and I are way up on the age side. As I was talking to Susan, she said, "Some of the parents of our clients still have their adult children living at home and the parents are in their 60s!" I said, "Um, DH is now 61 and I'm 47, and the boys are 10 and 12." She said, "Oh, honey, you just shot right to the top of The List." Whew, the safety net was out.
And now here we are, ten years later. The boys made it to the top of the list. (Bittersweet, because it means someone who was receiving services has passed away.) And given that our current alleged governor is trying to get rid of Big Government, he's eying the services for people with special needs. Jerk. Our new caseworker Bill is pushing us to get lined up with services, in case Gov. Asshole gets his way. We're hoping that folks currently receiving services won't have those services cut, which Gov. A-hole also suggested. Jerk.
So now we have to make some decisions. None of these are binding for all time, but if we can get a good fit now, it will give the boys long term stability. We worked with Bill to create profiles and current needs of the boys to give to providers. Several have responded to our inquiries, and we've interviewed a couple.
So to make a short story long, we're hoping to find 'friends' for the boys at this stage of the game. More on that later. Gotta go pick one up from school now, he says he's sick. Tired and weary is more like it, I imagine.
(P.S. I'm not using the real names of caseworkers and providers.)
