This week started out with an eruptive bang! Cutie #2 caught something like a minor plague, and on it went. She’s fine now, quite frankly she was mostly fine then, but it did result in me changing my clothes three times before I left Monday morning. This would normally be no big deal, but I only have three pairs of maternity pants.

Best part: Cutie #2 is back to her spunky self.
Worst part: Laundry has piled up. Not a big deal.

After work, I headed to the booming metropolis of Bakersfield to see if I could meet one of California’s Senate candidates. Turns out, I might be in some of their footage, and I am REALLY glad I found the second outfit’s, shall we say, bodily fluids, prior to leaving that morning.

So if you see me holding a political sign for a candidate, know that it’s all for Cutie #2. She deserves every second of advocacy and so very much more.

Here’s a list of senators and representatives currently serving on the Congressional Task Force on Down Syndrome. If yours is here, know that this does not secure a vote, it simply keeps a line of communication, education, and understanding open between our Down syndrome community and government. If you have a minute, send a note to your Representative or Senator either a) requesting he or she join or b) thanking him or her for committing to our community.That would make my #ThreeOutfitMonday worth the effort. There are zero Minnesotans on the #DSTaskForce. What’s up with that Minnesota?


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No permanent friends; no permanent enemies

In legislative advocacy, there are no permanent friends and no permanent enemies. I heard this at The Arc California’s Public Policy Conference. I guarantee the irony is not lost on me today. I certainly hope the actions of the National Down Syndrome Congress do not lead to permanent enemies; however, it is clear that NDSC has forgotten its purpose and mission.

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In yesterday’s Disability Scoop, “Proposed Changes To ABLE Act Draw Opposition”, it is clear that the disability community is not united on the ABLE Improvement Bills. While it seems clear that no one is theoretically opposed to increasing the age of disability onset for ABLE account holders, there is a clear difference of opinion in how political capital and compromise should be used to improve legislation. I happen to believe we should pass the legislation that we can and continue to work to improve weaknesses.

Opposing all legislation, because you cannot pass some legislation, is short-sighted, wrong-headed, and a sign of extremely poor leadership.

While it is vital to work towards the age increase needed to make ABLE work for more Americans, in the current political climate, the ABLE Age Adjustment is unlikely to pass. Even worse, with the presidential election looming, it could become even less likely that any of the ABLE Improvement Bills will be taken up in the near future.

There are three important pieces of legislation at stake here: 1) ABLE to Work – HR 4795 (increases allowed annual contribution from $14,000 to $25,700); 2) ABLE Financial Planning Act – HR 4794 (allows the rollover of traditional 529 to 529A); and 3) ABLE Age Adjustment HR 4813 (increases the onset of disability from age 26 to 46). According to the article in Disability Scoop, the first two bills together cost about $50 million over ten years; however, the third costs $2 billion by itself.

I have walked the halls of Congress to advocate for my daughter and other people with Down syndrome (most, perhaps all, of whom were diagnosed with Down syndrome prior to age 26). I have spoken with representatives from both parties about my daughter’s needs and our family’s desire for her to live an independent life. Many are enthusiastic to support her; all of the them answer to tax-payers. $2 billion is no joke.

So, until National Down Syndrome Congress reverses course and chooses to support the Down syndrome community, they will not have my support. I do not wish to have a permanent enemy in NDSC. I wish for collaboration and advocacy, but clearly, NDSC no longer represents, advocates for, or cares about my daughter or other people with Down syndrome.

I call on the NDSC Board to remove NDSC’s support for the Consortium for Citizens with Disabilities (CCD) and immediately cut all ties with the CCD. I highly recommend other disability groups do the same.