Getting into trouble

Yesterday, I got into trouble.

Specifically, I went to the Georgia Capitol and got into trouble.

Even more specifically, I went to the Georgia Capitol and got into good trouble.

Yesterday, I attended a press conference at the Georgia Capitol. No, I did not get on the news and my phone is not blowing up with requests for interviews.

I went in support of a church friend and a fellow special needs parent, Philip Woody. Philip and his wife, Lisa, are the parents of Evan. Evan is 22, handsome, loves airplanes, basketball, and electronics . . .and also has a severe brain injury. He cannot be left unsupervised. He cannot speak, although there are ways he communicates. 

I also went because in the state of Georgia, at the moment, there are SEVEN THOUSAND people with disabilities on a waiting list for services. Those seven thousand people include Evan. They also include my son, who has autism. 

Last year, ONE HUNDRED of them were funded. Do the math. If you have 7000 people on a waiting list and only 100 people get funding every year . . . it would take SEVENTY YEARS for everyone on that list to be funded.

Georgia State Senator Sally Harrell wants to change that. Her bill, Senate Bill 208, proposes to fully fund that waiting list over the next five years. 

Philip has become more and more of an outspoken advocate for the disabled over the last few years. Yesterday, he spoke of being on the waiting list for services for ten years . . . and he added, "And we're tired."

I learned a few things I had not known.  For example, Evan has a caregiver, a very nice Hispanic woman. Know how much the state pays for service providers like Evan's caregiver.

Ten dollars an hour.

Know how much a dog walker can make?

Seventeen dollars an hour. 

That's right, apparently dogs are more important than our most vulnerable citizens. 

Lisa, Philip's wife, spoke of the stress of being a parent caregiver, and quoted a Georgia representative, Tommy Benton, as saying, people at home with an intellectually/developmentally disabled member are going to have to start doing more than they are doing. 

What more can these people do?

They either don't have caregivers for their children so a parent has to stay home; or if they have a caregiver, they run the risk of losing that caregiver to a better paying job. 

Parents take their disabled children to doctor's appointments, therapy appointments, they go to IEP meetings where goals are set and may or may not be met; they are on the phone with government agencies that may or may not get back with them (not because they don't care, but because their caseload is so heavy that it becomes impossible to juggle them all); or, they're finding out that they make too much money to qualify for services (even though their health insurance won't completely cover the condition their child has). They go to the hospital with their kids, sometimes in a life-or-death situation, scared out of their minds that maybe this is the time their child won't come home. And always, always, in the back of their minds, is, "What happens to my child when I die?  What happens if he/she outlives me? Who takes care of him/her?"

What more should these parents be doing? What more can these parents be doing?

Sally Harrell, the senator I mentioned earlier, spoke, and she said, "We are here. And after we leave, we will still be here." 

These parents, and caregivers, and others, are tired and angry. And yesterday, a group of them came to the Capitol to tell their stories. 

Probably the two that hit me most were 1) a woman who has other children besides her disabled son, who is now living in a group home in Tennessee. His sisters love their brother . . . and have had to partially sacrifice their childhood because of their brother's needs. They've had to keep an eye on their brother, probably have had time with their parents interrupted because "your brother needs . . .", and 2) a woman who had moved here from Michigan, with her son -- and who found that Georgia ranks FIFTY in services offered to the disabled. Her son wore a sign:  "Need Services? Don't Move Here!"

I listened to Philip, and to Lisa, and to Senator Harrell . . . and also to my pastor, who'd come to support Philip. In fact, in addition to Philip, Lisa, Evan, Don (our pastor), and myself, four other people from my church took time out of their day to come down and support these people. Two of them were on staff at my church. The other two are two of our elders. 

I listened. 

And then, when Philip asked if anyone else wanted to speak . . . well, I took advantage of my gift of spiritual blabbermouthing, stepped up to the podium, and told them about my son. 

I told them he was 23, autistic, and the reason he wasn't there was because, unlike many with disabilities, he was at work. And I pointed out that many people with disabilities can work and are willing to work. People complain about a labor shortage, there are "Now Hiring" signs up at so many places  . . . and here are a group of people who can and will work. 

I ended with, but even with all that, we won't be here forever. What happens when his father and I are gone? 

Don, our pastor, spoke about the moral imperative. I cannot remember everything he said (the one problem I had was the echo in the area which made it hard to hear what people were saying), but by the time he was done, I believe that several of the legislators who heard him left with sore toes because he stepped on them. 

A quote attributed to many, including Gandhi and Thomas Jefferson, runs along the lines of, the measure of a society is how it treats its weakest members. 

So, how do we treat the people like Evan? Like my son? Like the young lady I saw in a wheelchair who can't speak? Like the ones too often left to languish in group homes or other institutions? 

In the state of Georgia, we care a great deal about our athletic teams. Two of ours, the Atlanta Braves and the Georgia Bulldogs, won the World Series and the national title in college football, respectively. We treat them well, practically bow down and kiss Kirby Smart's feet, and throw parades for them when they win. 

What about those who will never be on an athletic team but who also carry the imago Dei -- the image of God?

That's why I got in trouble at the Capitol yesterday. 

That's why I got in good trouble at the Capitol yesterday. 

That's why we all got in good trouble at the Capitol yesterday.

For my son.

For Evan.

For the others like them. 

For their parents, their families, their caregivers. 

Jesus had a special heart for the children, for those who were on the margins of society. 

Isn't it time that the state of Georgia do the same thing?

Just my .04, adjusted for inflation.