Growing a Tree

"Someone's sitting in the shade today because someone planted a tree a long time ago."

Archive for the month “April, 2012”

ABLE Act – Take Action

In my last post I encouraged you to test out the advocacy waters by sending a short email to one of your elected officials.

Today I have a specific “ask” for you. (That’s some policy jargon for you – an “ask” is the thing you write about or have a meeting about.)

There is a piece of legislation sitting in Congress right now. It has bipartisan support in both the House and the Senate. It needs our voices – parents, grandparents, friends, self-advocates – to get going. Today, April 25, has been designated as National ABLE Act Call-In Day.

The “Achieving a Better Life Experience” (ABLE) act would allow individuals with disabilities to have a savings account that can be used toward living expenses, education, medical expenses, assistive technology, job training, and other supports.

The best thing about this act? The money in this account does not count against the individual’s cash asset limits if he or she is drawing Social Security Disability Income or receiving Medicaid.

This is absolutely revolutionary.

For decades, individuals with disabilities – capable of working, wanting to work – have been forced below the poverty line due to stringent rules regulating SSDI and Medicaid. The cash asset limit in place to continue participating in these programs is an absolute joke, and essentially prevents individuals with disabilities who require Medicaid for health insurance from obtaining meaningful work for meaningful pay. Individuals whose disabilities make it difficult to work a standard 40 hour work week instead must live off SSDI, which is a poverty-level amount.

This act would make it possible for families of individuals with disabilities, and the individuals themselves, to save money in this special account so that they can live a more meaningful life of their choosing. These accounts are meant to supplement SSDI while still keeping the person eligible for Medicaid.

Here are a few more benefits of the bill:

  • will be regulated at the federal level so these accounts can cross state lines without problem
  • can be held in the individual’s name or in a parent’s name
  • money can be used at any point in the individual’s life – does not need to wait until adulthood
  • if a family has already been saving money in a traditional savings account, money can be rolled over without penalty

If you’re interested in taking action, there are a few things you can do.

First, check to see if your Representative and Senators are already sponsors of the bill. If they are, send them an email or call them to thank them for their support. (Links to finding your elected officials can be found in the sidebar of this blog.)

If they aren’t sponsors, send an email or give them a call. You may feel like your rep is too busy to talk to you or read your email. Rest assured that staffers are important players in this, and a conversation with a staffer is still a step in the right direction. Also, each office counts the number of “contacts” they get for or against a bill – so your voice will still be heard! If you need help wording your email or conversation, check out these talking points from the National Down Syndrome Society.

Other ideas:

  • If you like to tweet, disability advocates across the country are using the hashtag: #passtheABLEact
  • If you are a blogger, consider posting something about the act and rallying others to action.
  • If you like to use Facebook, consider posting something about the act.
  • If you are part of a parent group, support group, or other disability-related organization – send them the info.

There are a lot of different ways you can let Congress know you support this bill. Ready to take some action?

Baby Steps

Are you interested in legislative advocacy but not sure how to do it? Or worried you don’t have the time? There are many things you can do right from home that make a tremendous impact.

Legislators have a difficult job – one I would never want. Ever. They are asked to make huge decisions on issues they may only understand at the most basic level. Not because they don’t care, but because there just isn’t enough time in the day to become a leading expert on all the topics that come across their desks. They have staff to help, but this is a way families can play a meaningful role in advocacy.

You may have a legislator who has never even met a person with a disability, much less one who has a meaningful understanding of the joys of living this life. When a piece of legislation crosses his path that greatly affects people with disabilities, he may have no idea how or why.

Legislators want to hear from constituents. They get to hear from businesses and lobbyists, but the voice of their constituents is even more important. After all, you vote and businesses don’t.

Anyways, here’s your first baby step:

Send an email.

That’s it. Just send an email. It can be an email introducing yourself and your family as constituents. It can be an email thanking them for a vote on a certain piece of legislation. It can be an email asking about their position on a certain issue, or asking for support on a certain issue.

It can be short and sweet, doesn’t need to involve a lot of policy jargon or technicalities. Write from the heart.

If you’re emailing a state official, it’s likely you’ll even get a personal response. And there it is – a seed planted.

I’ve had what I consider to be success in emailing my legislators. I don’t always agree with their politics, but one of the most powerful aspects of the disability movement is that it’s really a non-partisan movement. (more on that later) It doesn’t have to be about party politics – it’s about doing what is right for people with disabilities.

Good luck!


In my last post, I talked about inclusion, and some of the things I said are very tall orders. There’s something I want to add to that conversation because I think there is a little nuance missing.

Inclusion can be the default position of workplaces and schools, but there still needs to be room for people who choose a different path. For some children, the classroom itself (lights, sounds, movements, etc) is a trigger. For some, full inclusion is not the answer.

What I advocate for is for all children to start in a place of inclusion and provide options for parents when inclusion is not the right choice. Design schools and curriculum around inclusion so the noggin-scratcher isn’t “how does this child fit in?” but “how do we best serve a student for whom full inclusion is not the best option?”

If that becomes the thing to consider, the thing the IEP team has to sit down and really mull over, the hope would be that pull-outs, sensory breaks, and other activities would be done mindfully and with the student’s best interests at heart – not the defaults that all kids with certain disabilities have written into their plans.

Same goes for the workplace. I am in no way advocating for the immediate closure of sheltered workshops. For some, the workshop is a safe place that they like.

I advocate for the default of graduating high school students to try job placement in a meaningful job with real pay. Try it, see what works, what doesn’t. Expect that people can do this instead of the current default – “there’s workshops for people like that.”

I wanted to add to my inclusion discussion because I understand the nuances with each individual, and I would never advocate for an individual to be forced into a situation that makes them scared, angry, or frustrated. I advocate for avoiding the attitude of “oh there’s a special classroom for all kids like that.”

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