Wednesday, December 10, 2014

ABLE Act Followup: I Guess I'm In ... It's Your Call

The word "Advocacy" being highlighted by a green highlighter pen
I just got an email alert from the Center for Disability Rights, asking people to call their Senators and encourage them to vote “No” on S. 313, which is the Senate version of the ABLE Act. The email provides a good overview of what’s wrong with the ABLE Act at this point:
There are two major problems with this bill:
1. It caps eligibility by age. Only people who have acquired their disability before age 27 would be eligible. There has been no logical explanation for this arbitrary number and the Disability Community does not accept leaving anyone with a disability behind.
2. It includes budget cuts to vital services for people with disabilities. One group of people with disabilities should not have to sacrifice such services in order for another group of people with disabilities to have what they need to survive.  Things that would be cut if this version of the ABLE Act passes include:
Specific oral medication that many dialysis patients with End Stage Renal Disease (ESRD) take would not be covered by Medicaid until 2024.  People will die because of this.
Vacuum Erection Systems (VES) would no longer be covered by Medicare.  This seems trivial, but it is assistive devices such as this that allow some people with disabilities the opportunity to have a family – the same right able-bodied people enjoy.
As I have written about recently, I am upset by the last-minute changes to the bill … both for their practical consequences, and because I think it signals a failure of cross-disability collaboration. That said, I can’t quite bring myself to ask Senators to vote no at this point. If I thought there was a real chance to revisit the changes and fix the bill, I would urge them to vote it down, but especially with two-house Republican majorities on the way I don’t see that happening.

I do hope that Senators who have supported this bill will take a good look at the limitations, and realize that they really are more than just the usual compromise all bills go through before they are passed. The age limitation, especially, fundamentally changes the bill, by cutting out entire portions of the disabled population. I think I would rather have seen the ABLE Act account limits reduced … either to a bit less than $14,000 per year, or to a lower total account limit than $100,000 per person.

So, go ahead and pass the ABLE Act. See how the model works. Make the case for expanding it to the whole disability community. Build on it, or adjust as needed to make it better. But let’s not let Congress and the media celebrate this “rare example of bipartisanship” without acknowledging how it got done. And, next time a bill like this comes up, let’s all make it clear that we won’t accept “divide and conquer” anymore, or be talked into throwing disabled people a bit different form us under the bus.

If you want to contact your Senators anyway, click here to get started.

Things We Say About Disability

We are fine. Yes, we have disabilities, but that makes no difference to our capabilities. Just give us a chance, treat us like everyone else, and we will succeed.

We could be fine, if we had a few basic supports in place, but because of bureaucratic stupidity, the persistence of bad, outdated policies, and general public apathy, we are still denied access to proven services we already know would work for us.

We would be fine, but we are battered and bruised every day by the terrible beliefs, insensitivity, and severely misguided practices of the people around us. Even our families and closest friends sometimes don’t really “get” us.

Listen, sometimes we aren’t fine at all. We hurt. We feel sick. We feel worthless. Some days we can barely get out of bed, and we never know ahead of time when those days will be. When we are at our best, we can do a lot, but frankly, we’re very rarely at our best. Not enough people understand that.

The trouble is, they are all true.