Please Share

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.

2. Divide/Pay

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.

And now…

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.


Please Share

Similar Posts


  1. Able act is not perfect. The ABLE Act is a gateway towards a better society. The cost of the original ABLE Act was rediculously high – and likely not accurate. The CBO, who makes these estimates, admits it had no real data on costs, because Tue program did not exist to obtain that data.

    Once this ABLE Act is in place for a period of years, we can use the data to show it does not create more safety net fraud, but rather it increases income tax. With this in hand we can fix many of the issues you call out, plus a few you do not mention.

    Perfect is the enemy of improvement. If you care for those folks who became disabled after 27 yes, you would see this as the most likely path to their access to ABLE Accounts.

    It’s unfortunate we cannot have everything we want. Hopefully this law becomes the pathway there. Don’t stand in the way of progress awaiting perfection. In today’s political realities, you will do more harm than good.

    1. Yes, I agree that getting it passed now makes the most sense, and to make the changes after it’s law.
      But I do think we should start talking about who ABLE actually helps and does not help, and at what expense. We should also be clear on what amendments were made to original bill – and why.
      We need our communities to be aware of what is happening and to start planning and preparing for the future – not only with the changes that we should try and implement, but also in how to utilize ABLE at all.

  2. Jack Lancellotta says:

    Please ensure that the 26 years-old qualification proviso in this bill be eliminated to be truly fair and equal….

    Additionally the ‘pay-back’ provision could be amended to a 50/50 split where half can be allocated to the Disabled Citizens Estate and the remains over to the government …

    the funding for the 529 accounts, universally acts as an economic factor that draws a saving element and spending action that can offset any potential loss to the Treasury as a CBO report has indicated …

    the entire realm of the Disabled Citizen being penalized under the current rule-making authority, is not only out-of-date since 1989 and 1972 respectively, but grossly unfair and financially debilitating .. Remember, Disabled Americans on all levels pay taxes … from Sales & Excisie Taxes to Property and User Fees.. and in some allowable cases, Income Taxes as well …

    Let Our Congress pass a fair, equitable and modern A.B.L.E. Act for all our responsible, vulnerable and valuable Disabled American Citizens – GOD BLESS AMERICA!

  3. I agree with both of you. An amendment would be ideal. Sooner is better. I hope you will work with your Congresspeople and Senators to make this a priority starting with the new Congress in January. With your passion and engagement we can expedite the needed improvements.

    1. you bet. I am not a natural for this though; I really need help in understanding what I need to do, what needs to be done, etc. How the process works.

  4. LET ‘S ALL SUPPORT ~ The Supplemental Security Income Restoration Act of 2015!

    We all appreciate concerned interest in the pending legislative measure ~ Supplemental Security Income Restoration Act of 2015 ~ in our United States Congress that affects those individuals that receive Supplemental Security Income also known as SSI!

    The bill # in the House is HR 2442 and its companion Senate # isS 1387.

    There have been several similar bills introduced in the House & Senate over the last couple of years that would allow Disabled Citizens & Poor Elderly Citizens to hold more of their assets without being penalized under the very current restrictive rules and laws.

    To strengthen, modernize and overall upgrade The SSI Program, the Supplemental Security Income Restoration Act of 2015 is a means a to make the lives of our nation’s most vulnerable more acceptable and helpful to them.

    Please write to your Senators & Congressperson (sample letter appended) and encourage them to co-sponsor and support this valuable and needed piece of legislation for our most vulnverable people.

    Thank you for your kind inquiry and please keep us informed on your efforts to as the Supplemental Security Income Restoration Act of 2015

    —————————————sample ————————–
    -Letter of support on SSI Restoration Act 2015
    November 05, 2015

    U. S. Senate & U.S. House if Representatives
    Washington, D.C.

    (Please write both Senators & Repreentative)

    Dear Senator – Dear Congress(man) or (woman):

    I am writing on behalf of my constituencies to request that you co-sponsor S. 2089 (in the Senate) — H.R.2442 (in the House) , the “Supplemental Security Income Restoration Act of 2015.” This bill would strengthen and restore the Supplemental Security Income (SSI) program, which provides basic income support to 8.4 million low-income seniors and people with disabilities.

    The bill would update provisions in the SSI program that are woefully out of date, some of which have never been adjusted for inflation since the program’s enactment in 1972. For example, rules that disregard a portion of an individual’s income when determining an individual’s eligibility for SSI benefits have not changed in over 40 year. Since 1972, the cost of living has risen more than five and a half times, but the general income exclusion has remained constant at $20 per month, while the monthly exclusion for earnings is still $65, just as it was in 1972.

    Another element of the SSI program is an asset limit. For decades, this limit has been set at $2,000 for an individual and $3,000 for a married couple. This unrealistic limit, which has been increased since 1972 by only 33 percent, prevents many truly needy people from qualifying for SSI and is insufficient in today’s economy. The “SSI Restoration Act” would increase this limit to $10,000 for an individual and $15,000 for an eligible couple, which represents more realistic amounts for the purpose of planning for emergencies and other unexpected expenses.

    The “SSI Restoration Act” would also eliminate a rule requiring the loss of some benefits for SSI beneficiaries who also receive non-cash in-kind assistance. This provision is unfair to affected individuals and has proven to be enormously difficult for the Social Security Administration to administer. Elimination of this provision would both make the program more consistent with America’s family values and simplify administration of the program.

    The bill, “SSI Restoration Act,” gives all Members of Congress the opportunity to join in making long-overdue improvements to a program that provides vital life-saving assistance to our nation’s neediest and most vulnerable citizens.

    Thank you for your very kind consideration.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.