Well, I can cross “speak in front of the California State legislature” off my bucket list. Along with “wear embarrassingly inappropriate footwear in front of said legislature.” Actually, neither was on my bucket list in the first place, but I guess I’ll put them on now, just for the purposes of crossing them off.
But let me go back for a moment. You know that my newest job for our Down syndrome organization is legislative advocate/government affairs representative. It just so happens that big things are happening in that arena right now, with the (hopeful!) passage of the ABLE Act in California. I’m too new to the CDAC (California Down syndrome Advocacy Coalition) to have done anything for ABLE in California, but I do happen to live reasonably close to the state capitol, so when it came time for a hearing on it in front of the Taxation and Revenue Committee at the capitol, I volunteered my support. I figured it would be great experience because I’m gearing up to put in significant effort on another piece of California legislation related to Down syndrome, and watching the ABLE legislation in progress would give me a good taste of what’s to come. Plus, my friend and cohort Kelly was pretty instrumental in getting ABLE to where it is in California, and I wanted to support her and knew that she could teach me a lot about the process, since she’s been intimately involved.
So Monday morning, after dropping the kids at camp and school, I headed up to Sacramento. Only one problem: I’ve just started a new migraine medicine, and it puts me in a bit of a mental fog. So I didn’t even notice until I was halfway up there that I was dressed up in the only “nice” clothes that fit me…but I had paired them with a shabby, hippie-chick pair of Birkenstocks that I wear every day. Not even matching Birkenstocks—just a dusty old brown pair. Oh dear. I was semi-mortified, but I figured there are probably worse offenses than wearing the wrong shoes in front of the legislature.
As it turns out, I was right. At least, I assume I was. This hearing seemed much more casual than I expected. At the hearing, there were several bills being discussed, and I sat in the audience kind of dumbfounded as I watched important officials puttering around on their smartphones while bills were being discussed. One senator sitting in front of me appeared to be downloading new apps to his iPad, for example.
I should mention, though, that the officials on the committee seemed attentive and listening—it was just those in the audience, waiting for their bill to come up, who were puttering around playing Angry Birds or whatever. And I guess for them it’s old hat—they probably sit through these hearings a gazillion times and find the waiting boring as heck. But for a spectator who has never been to one before, I was kind of in awe. I couldn’t imagine doing anything but sitting and listening, even when it wasn’t our bill being discussed. I kept thinking how it would be a great history lesson for middle-school or high-school students to sit in on a session. I hated history as a subject in school, because I found it dreadfully boring. But sitting in on an actual legislative committee hearing was quite interesting.
For example, there was one bill being discussed about road improvements, but apparently there is a bit of semi-hidden language in it that attaches a parcel tax to the bill, and several people spoke up against the bill for that reason—saying that the parcel tax meant that homeowners would be paying for the road improvements that everyone would be benefiting from. It was interesting to hear the arguments for and against that one.
The problem with that particular bill, though, was that the arguments ran over, which meant that ours got cut short. And thus, my moment of speaking before the legislature consisted of me saying exactly two sentences: my name, and where I work and that we provide support and services for people in nine counties in the Bay Area, and that we fully support the passage of the ABLE Act in California.
Still, it was a heady moment to get the opportunity to do that, and to get to speak about a subject that will help many, many families if passed. ABLE actually doesn’t directly benefit our family, because we have a special-needs trust set up for Sam. But for the many, many families who have a person in them with a disability and who don’t have the means to set up a special-needs trust, ABLE can make a huge difference. The short story is this: Currently, unless you have a special-needs trust set up, you are only allowed to set aside a maximum of $2,000 for your loved one with a disability. If you set aside more than that and you die, your loved one then becomes ineligible for state services. The problem with this is that people like Sam need some level of state services: No matter how independent Sam becomes, he will likely always need at least some level of state services. The unemployment rate for people with developmental disabilities is extremely high (I want to say 75%, but don’t quote me on that), and there are loopholes in the law that allow them to be paid below minimum wage (hello, Goodwill Industries!). But state services don’t cover enough for someone like Sam to live a comfortable, safe life. If we died and Sam were left on state services, he would most likely live in a hovel, destitute.
So most people want to be able to set aside additional money for their children with disabilities, so that they can use state services where they need but also supplement and live in a safe, comfortable environment. Currently, they can’t do that. If ABLE passes, they will be able to. They will be allowed to set up a savings account like a 529 college account, but for dependents with disabilities.
As I said, none of this applies to us because we were fortunate enough to be able to set up a special-needs trust for Sam…but not everyone is that lucky. It would be nice for everyone to be able to look out for the future of their children with disabilities—and in the long run, I suspect that would be a lesser financial “burden” on the state as well.
Amusing bit about ABLE: Some of the money to fund it came from a Medicare cut. Apparently, Medicare no longer covers penis pumps, as they diverted that money to cover ABLE. (Think I’m joking? Click here!) So if you’re an elderly person who wants a penis pump and Medicare won’t cover it…well, you can blame my son and his counterparts. 😉
Anyway, so ended the day in which I spoke in front of a legislative committee while wearing wholly inappropriate shoes for the occasion and cast my vote toward ending Medicare coverage for penis pumps.