I’m not a political junkie and my brain isn’t particularly suited to understanding the processes of politics.
But there are some things that I know – as a person with a disability, as the mother of a person with a disability, as a professional who worked with disability and employment for a decade. One of those is that the cycle of poverty for people with disabilities in the United States is a wretched, deeply ingrained problem. It’s fixed in place by laws that govern how much a person with a disability can earn and still receive health benefits and/or steady income from the government.
People with disabilities who receive benefits are not allowed to have more than $2,000 in savings, only allowed to have a certain amount of money in trusts and assets. None of the dollar amounts are enough for any kind of financial security.
The ABLE Act has been in the works for a long time, pushed heavily by national organizations within the Down syndrome community. The promise of the ABLE Act, the reason to get behind it, is that it would allow people with disabilities to money, tax free, that would provide for their long term welfare.
The ABLE Act was amended at the last moment, including some significant changes:
1. Age: only people who have acquired their disability before age 27 would be eligible.
Does this affect me or Moxie? Absolutely not. Does it affect the runners who had their legs blown off in the Boston Marathon when they were 28 years old? Yes, it does.
Moxie and I would be able to fully save and participate with the ABLE Act as it is, as we both acquired our disabilities before the age of 27. For those who became disabled after 27, however, the amended act would have them shit out of luck.
ABLE is paid for by cutting other benefits from other groups of people with disabilities, a right-wing divide and conquer strategy. It’s simply wrong to take benefits from another group, the sick and dying in this case, to pay for an Act. Does this affect me and Moxie? Again, no. We do not belong to the specific groups that are facing budget cuts. We’ll be fine with the ABLE Act passing.
In fact, most families of individuals with Down syndrome (and Autism, Cerebral Palsy and other disabilities that come with birth) will be fine.
But having it be fine for us at the expense of another group of people with disabilities isn’t fine for me. Is it fine for any of us to be silent in the face of disability and class hierarchies built into the ABLE Act? Is this what we as a community of the disabled and disabled allies really want to do?
I posted a petition on Facebook yesterday -as a reference, here it is. There was some moving conversation on my personal Facebook page regarding this petition, and I no longer think the right thing to do is to try and stop the bill. Rather, I want us to start the conversation about what the amendment means exactly, about what is wrong with the bill as it is.
After the bill is passed into law – which could happen at any time, then we should get moving on changing it.
The NDSS and the NDSC send me (and I suspect many other parents) a lot of emails. None of those emails contained information on the amendment to the ABLE Act, nor was anything explained regarding the new age cutoff and the money shifting.
I’ve had to turn to David Perry to understand what the heck is going on (specifically, his article for Al Jazeera America, Playing Politics with the Disabled), as well as the Center for Disability Rights, Inc.
I’m including those links so that you, too can tune in with people that are actually going to give you the scoop. And I’d love to hear your thoughts on this.
Meriah Nichols is a career counselor. Solo mom to 3 (one with Down syndrome, one gifted 2E). Deaf, with C-PTSD and TBI, she’s also a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.