February 5, 2018

Plan for your Child’s Future with ABLEnow

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Tracking Pixel(This is a sponsored blog post written by me on behalf of ABLEnow. All opinions are my own.)

I remember dreading the long drive to my monthly Partners in Policymaking course. My son Anderson, who has Down syndrome, had just turned one and although I was taking the course to learn tools that would better his future—the weekend dedicated to “Transitioning” seemed too far off.

The first thing the speaker said was, “When do you start planning for your child’s future after high school?” The room was silent. “Now. You start planning now.”

That day a paradigm shift happened. I realized our attitude, our language, and our decisions in regards to Anderson, needed to be with his future in mind. We envision a life for our son where he will have meaningful relationships, independence and a job he finds fulfilling.

We need to take steps now to give him the best chance for this life as possible. One step we’ve already taken in planning ahead is setting up an ABLEnow account.


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For too long, parents of children with disabilities (and people with disabilities themselves) could not save for the future without fear of losing their public benefits. Advocates and disability organizations fought hard to change this, resulting in the federal ABLE Act and new ABLEnow program.

ABLEnow allows parents to save for their children with disabilities in an affordable, tax-advantaged account that won’t risk affecting benefits like Medicaid and Supplemental Security Income down the line. 

Because my husband is active duty military, we incur little to no expense in regards to Anderson’s disability. However, this is not the case for many families who have children with disabilities. An ABLEnow account allows parents to pay for certain disability expenses now, as well as invest in the future.
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If your state does not have its own ABLE program, there’s no need to wait to open an account. ABLEnow is a national program, allowing you to open an account from any state. Here’s another great thing about an ABLEnow account—anyone can contribute. That means grandparents, or other relatives can make their own contributions to your child’s account in addition to your own savings.

Being a writer-type, dealing with financial aspects of our family is not a task I enjoy and often defer to my husband. However, opening an ABLEnow was easy even for me. From start to finish the process took 20 minutes. It takes 20 minutes to take a step towards planning your child’s future with a little less fear and much more certainty.

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I’m so thankful for the advocates and parents who have gone before me and paved the path to make ABLEnow accounts possible.

Have questions? Watch the video or visit the FAQ section.

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How to Save for Your Child with a Disability

This is a sponsored blog post written by me on behalf of ABLEnow. All opinions are my own.

January 18, 2018

Inclusion is the Reason My Son Started Walking

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This Down syndrome blog post is about our first experience with inclusion. Down syndrome preschool inclusion

Earlier this year I felt a kind of panic well up inside of me that I had never experienced before. I was worried and anxious about my son Anderson’s development. Anderson has Down syndrome.

I knew Anderson was capable of walking, but he didn’t want to. He hit a plateau with speech and occupational therapy was his least favorite.

I had just completed six months of advocacy courses through Partners in Policymaking. I wrote an article on Inclusion that went viral and yet because I was a stay-at-home mom, it didn’t dawn on me to start the inclusion process. He had only just turned two.

For three weeks, I dropped him off at pre-school and then went to my car and cried. I remember being sad dropping off my typically developing daughter at school for the first time, but this was different. 

I often say that parenting a child with Down syndrome is life intensified, the highs are higher, the lows are lower, and the angst that hung between the ignition and me was thick.

But I kept taking him because of what happened on his first day. He walked at school.

He kept walking at school even though he wouldn’t do it at home. Inclusion was working. He was the only non-walker in his class and that was the motivation he needed to start taking his first steps.

Unfortunately, he could only stay at that school for three months because we were moving. So, I would drop him off at school and then research new preschools that would not only take him but wanted him.

I found one. The director was genuinely excited to have their first child with Down syndrome. Anderson had been at his new school for two months when I approached his teacher about his development. She said, “He puts his head down when I try to get him to talk, but at circle time and lunch time, he starts ‘talking’ and answering questions.”

Inclusion was working. It is working. 

It’s not only working for Anderson, but also for those around him. I told his teacher that I might be pulling him from school later this month because we are having our first IEP meeting at our neighborhood public school. She cried.

He’s the only kid in his class who doesn’t talk in sentences and has very few full words. Yet, words aren’t needed to build a friendship. I linger around the gate to catch him laughing and hugging his friends.

Us adults can provide Anderson the tools, but it’s his peers who will motivate him to use them.

Tomorrow we have our first IEP meeting. It’s the first of many in our future and I can feel that thick angst hanging over me again.

I observed the classroom twice, Anderson will be the youngest, by far the smallest and the most behind. I thought about waiting. I thought about keeping him in his environment a little longer.

What if he’s not ready?

But what if he is? I realized I couldn’t be the one to stand in his way.

Inclusion is how he took his first steps, and it will be how he continues to walk into a future that is his own.

Want more articles on inclusion? Read more under advocacy

Some may read this and wonder- why move him if we are happy with where Anderson is at? We could only find a two-day program for Anderson. With public school, he will go five days a week. He will also receive additional speech therapy on top of his private therapy. We will only put him in public school if we get the inclusive placement we want. We are bringing an advocate to our meeting and we are hopeful that we will get the placement and the services we want.

 

 

 

November 8, 2017

Unlikely Heroes- The Mom Behind that Viral Inclusion Case

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This article is about the family behind that viral inclusion case -the mom has been taking on her Arizona school district for two years.

I remember seeing her right away, she was wearing all black and had a cross look on her face. Sarah was one of the two-dozen people sitting at the many long conference room tables at our first Partners in Policymaking course. We all probably looked a bit unsure, a bit skeptical. The course is a huge commitment—one weekend a month, for six months, a hotel stay required and homework in between.

Then, we told our stories. We were all connected by a word, a word most of us never thought would be apart of our stories—disability. Sarah’s story was the most pressing. She and her husband were in due process with their son Ryken’s school. Ryken has Down syndrome.

Despite the progress Ryken was making in the general education classroom, the district wanted to bus him to a different school, away from his sister and friends to be put in a self-contained classroom. They still do, two years later.

Sarah cried her first day at Partners. She called her husband telling him she didn’t want to be there. She had to be overwhelmed by it all. But she stayed. She stayed for her son.

In the middle of the course, Sarah and her husband Mike endured a week long trial. Where day in and day out, she was reminded how her son was unwanted because of his disability. They lost the case. She still came back to Partners. It wasn’t the end.

Sarah and Mike could have moved. They could have left the district behind and started anew. But instead, they have taken the case to the top—the Ninth District Federal Appeals Court. The justices must now decide if the school district made a change in placement and threatened Ryken’s access to a Free and Appropriate Education in the Least Restrictive Environment, or if it was only a location change, as the school district is arguing.

Sarah and Mike are putting themselves through this for not only Ryken, but for my son, maybe for your child, too.

I know Sarah, now. She’s quick with a laugh and with a tear. She has a bit of a country drawl and views herself as an average mom. She is all of us. She is an unlikely hero.

Who would have thought the mom who cried her first day of taking a disability course, would be the one taking on the prejudice many of our kids with disabilities face?

I know she didn’t. She may not have the vast knowledge of her attorneys or the typical swagger of someone you think of as a trailblazer, but when injustice came knocking on her door, she answered. She could have hid, pretended she wasn’t home, but instead she opened the door and decided to face the immense beast in front of her.

Most of us feel inadequate to do big things, but there’s a hero inside us all. We just have to be willing to respond to the call.

Here’s one of the original news stories about Ryken’s case. Read Inclusion Evolution’s summary on where the case stands now. Follow Sarah’s attorneys Amy Langermen and Susan Marks on Facebook here and here.