passEDtheABLEact – What’s Next?

Following the House and Senate’s resounding yes votes to pass the ABLE Act, President Obama signed The Stephen E. Beck ABLE Act into law on December 19, 2014. That was my early Christmas present!  On December 29, 2014 the Arkansas Razorbacks beat the Texas Longhorns 31-7. That was my early New Year’s gift. It has nothing to do with the ABLE Act but I do believe that the most wonderful time of the year is when college football starts. Proud of my Hogs.

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Back to life though. People I don’t know and people I barely know have been congratulating me on the passage of the ABLE Act. Honestly, I have been a little surprised by the fanfare. For me and those I do this disability journey with, it is a great big deal. Truly I had no idea that we would have such an enormous response to the passage of the bill. The media coverage has been awesome. Besides the obvious one reason the media response is to awesome is because people with Down syndrome, autism and other  disabilities are in center stage in a positive way. You cannot buy that press. I have been a bit embarrassed though by the attention paid to me. I have worked alongside the most incredible people to help get this passed. My part was so small and such an honor. In workshops I often say I do what I do for those who can’t, won’t or don’t. It is not my place to judge why they can’t, wont’ or don’t. Since I was a teenager Isaiah 6:8 has been a favorite of mine. “Then I heard the voice of the Lord saying, “Whom shall I send? And who will go for us?” And I said, “Here am I. Send me!” That’s what I have tried to do. I have said the ABLE Act was a labor of love and conviction.

Now, many people pose the question, “What now?” I wish I could sit down and ponder that a little longer but there is not time. I told our Congressman and Senator’s offices that they just thought they would get rid of me when the ABLE Act passed. I’ll have new projects immediately, and I do.

The day the ABLE Act passed my good friend Joe Meares posted this:

“What should “we” (the DS community) work on next?” I believe it’s employment! NOW that people w DS CAN work to their potential without losing a safety net, WE must make sure there ARE jobs, MEANINGFUL incentives for employers and educate employers that hiring people w disabilities is not a feel good exercise, but—smart business. (lowest absentee rate, longest tenure in entry-level employment, etc) EMPLOYMENT legislation dovetails perfectly w ABLE and—it’s where Steve Beck was ready to put his energy after ABLE. I can’t fill his shoes, but—I’m ready to rally our troops and beat some drums. Who wants to meet at my kitchen table and write our next successful chapter?

I suspect that is one of the logical next steps and I will gladly jump on that bandwagon. Just in case you are reading this and don’t know though, let me list some of the other issues we must address:

Meaningful Inclusion

  • In spite of the passage of IDEA in 1975, across the country families still struggle to get students with disabilities included in school classrooms, extracurricular activities and socially. If you don’t believe me, check my Facebook groups, my email or any workshop I do.
  • I used the broad stroke of meaningful inclusion because often individuals with disabilities are relegated to separate sports, recreation and arts programs with little to no effort to include them.
  • Again the broad stroke of meaningful inclusion because based on what I hear, The Church is a little behind on this inclusion thing too.

Seclusion and Restraint

  • Stronger laws to protect students with disabilities or really any students from the use of seclusion and restraint. Have you heard the stories of taking canes from children who are blind as punishment and duct taping children to wheel chairs? All real.
  • Training of law enforcement and First Responders in how to work with those with disabilities. You have read about Michael Brown and Eric Garner but you may have missed the story of Ethan Saylor, an adult man with Down syndrome who was killed by off-duty police officers in a Maryland movie theater. It didn’t get much national press attention.

Research funding –Individuals with Down syndrome may have some of the keys to treatments, even cures for Alzheimer’s and cancer yet we are at the bottom of the percentage pie for NIH Funding. Thank you Senator Jerry Moran for working to right this.

Post-Secondary Programs for Students with Intellectual Disabilities – There are programs around the country but not nearly enough and very little financial support for students to participate.

Job Training and Transportation are two big issues.

I could go on but I think you get the idea. There is much to do. For this momma, a girl named Rachel graduates from high school in seven (7) semesters. She talks about colleges and pink houses and living in New York City. In addition to the big picture, I have to dedicate some time to her picture.  Part time jobs, job training, volunteer opportunities, realistic post-secondary programs, finding the money to do it all – those are just a few things that come to mind.

I’m thankful for my 2014 gifts. For me it started with a girl named Rachel and shortly thereafter an eternal friend named Ben. Along the path we’ve added a lot of Ryan’s, Bella’s, Halie’s, Emily’s, Katie’s, and on and on and on. So here’s to all of them and the work that still needs done so they can live real lives.

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In 2015, “Here am I. Send me.”

 

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3 comments

  1. I completely agree with you on the employment piece, etc – but I am wondering if you know of HOW the ABLE act will actually be implemented?
    What the restrictions are, how much someone can actually earn and how the money will be saved, exactly? I was also wondering how it will work with programs already in place like the PASS plan?

    I wrote to WID (db101.org) to see if they’ll have some programs up soon to help us all understand how to actually implement it. Haven’t heard from them yet, but I personally really need something to help me understand and use it effectively.

  2. Meriah – thanks for reading. There are many questions about ABLE. It will be set up like a 529 plan in each state. My understanding is that the implementation guidelines must still be written by the Treasury dept. I am going to be on the NDSS Webinar on January 22 to try to learn more and will share more as I know. I do know that it will be restricted to one account per person with a $14,000 per year limit up to a maximum of $100,000 and this does not count towards the $2,000 asset limit. Stay tuned! Happy New Year!

  3. Great ideas for what comes next! I’ve started a list of things that those of us with adult children have discussed in 2014 that we think need some attention. The more we talk about it the more things we come up with! 😀

    #JusticeForEthan will always be at the top of our list.

    So much work to be done – grateful that there are such dedicated people working with us, like you and all those mentioned here.

    http://roadwevesharedgzp.weebly.com/the-roadmap-blog/advocacy-for-all

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