Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

This Land was Made for My Son with a Disability, Too

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The Fourth of July is a time of reflection of our nation’s past and present. As a mom to a child with a disability and former history teacher, I often marvel at how far our nation has come in one generation as it relate to the human rights of individuals with disabilities.

Surely, when Thomas Jefferson wrote we have the right to “life, liberty and pursuit of happiness” in the Declaration of Independence he wasn’t thinking of people like my son who has Down syndrome. Still, this document and our nation’s constitution has been used as proof that my son deserves a life of choice and self-determination with needed supports.

When I was born in 1982, individuals with Down syndrome had a life expectancy of 25-years-old. Many still lived in neglected and abusive institutions, were denied life saving surgeries, and underwent forced sterilizations as approved by the Supreme Court in 1927.

One generation later, in 2012, when my son was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat including Medicaid (especially the community and home-based waivers program), the Americans with Disabilities Act (ADA), and Individuals with Disabilities Education Act (IDEA).

Troy (left) with his twin, Hunter

Still, forward progress has often been an evolution, rather than a revolution of inclusion for people with disabilities. At times like now, there seems to even be a back-pedaling of progress. With threats seeming to come from every direction, it’s hard not to lose heart. It’s also hard to know where to focus your energy. You’ve likely heard that advocacy is a marathon, not a sprint. Check out some of the issues facing our community below, and pick up the phone, write an email, or give a speech. Small acts from us all can lead to big change and forward progress.

  1. Inclusion in schools for Students with Intellectual Disabilities: federal reports show that only 15% of students with intellectual disabilities are included in general education for the majority of their day. The Supreme Court of the United States, in the Endrew F. case, demanded a higher expectations for our students with disabilities, but some schools are still segregating them. Join this Facebook group that is teaching parents how to address their local school board to advocate for inclusion in general education (click here).
  2. Achieving a Better Life Experience (ABLE) Act: This law allows people with developmental disabilities to save above the $2,000 a month threshold without jeopardizing their government benefits. Still, disability advocates say more people need to open ABLE accounts or the program will be in jeopardy. That’s why advocates are asking people to urge their Congressmen to pass the ABLE Age Adjustment Act to increase the age of disability onset. Find out more here.
  3. Ending Sub-minimum Wages: Most people with disabilities want to work, but more than 80% are unemployed. Those that do work are often segregated in sheltered workshops, earning pennies on the dollar. The Workforce Innovation Opportunity Act (WIOA) hopes to ensure all people with disabilities earn at least the minimum wage, while creating a systematic approach to ending sheltered workshops. Send a letter to your representative supporting this bill using the National Down Syndrome Congress’ pre-formatted form. Click here.
Troy playing baseball with his typical peers

In a time of growing distrust of government, it’s important to realize that federal policies like the ones above have made a big difference in the lives of the disabled.

It’s important to not become complacent. Let’s fight to continue the progress made by so many.

Busting the Myths Surrounding ABLE Accounts

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Are you still skeptical about opening an ABLE account for your child with Down syndrome? Do you believe that your child’s SSI or Medicaid benefits would be at risk? Are you afraid the government will take the savings if your child passes?

Even though roughly 10 million Americans could benefit from an ABLE account, only 35,000 accounts have been opened since the first program started in 2016.

The viability of the program relies on more people opening accounts and saving, so it’s important to dispel myths surrounding ABLE accounts. So, why aren’t more people taking advantage of this tax-advantage savings accounts? “In a few words: lack of information and skepticism,” says Senior ABLE Advisor Heather Sachs.

When Troy was first born we opened a special needs trust for him, because of our worry the government would take away any savings left in his name. Before the Achieve a Better Life Experience (ABLE) passed, individuals with disabilities could only have $2000 in their name if they wanted to receive needed government supports.

The special needs trust cost us more than $500 dollars to open. Troy can only use the trust upon my husband and I’s death, because it costs so much to manage the account once in use.

In comparison, it cost us nothing to open and maintain an ABLE TN account, and we can use the money right now just a like a checking account. Special Needs Trusts and ABLE accounts are not mutually exclusive though. They have their own separate costs and benefits, but many people are incorrect in their understanding of ABLE accounts.

This month the ABLE National Resource Center is running an ABLE Awareness campaign to educate the public on the benefits of ABLE. Sign up for their weekly webinars here.

Let’s debunk some of the most common myths surrounding ABLE: 

1. Once the ABLE account exceeds $2,000 the account holder loses his or her SSI and Medicaid benefits.

Wrong! For the first time ever, individuals with disabilities can save like anyone else WITHOUT losing needed government supports. This is a civil rights issue, and one the ABLE law did a good job of remedying. I should be able to save for my son with Down syndrome, just like I save for my typical children. Money in an ABLE account is not a countable asset in determining SSI or Medicaid eligibility. ABLE accounts allow you to save up to $100,000 dollars without losing government disability assistance. Even when the account exceeds $100,000 the account holder’s SSI or Medicaid benefits are just suspended, not canceled. The account holder must spend down below the $100,000 threshold for benefits to kick in again. Also, if money in an ABLE account exceeds the $100,000 ceiling, the beneficiary can still receive Medicaid, SSDI, SNAP, Section 8, etc.

2. If the account holder dies, the government takes all the money in the ABLE account.

Not quite! This is the biggest concern of parents I talk to who are still skeptical about opening an ABLE account for their child with a disability. Here’s what you need to know. ALL outstanding disability expenses are paid first before Medicaid can make a claim. That means burial and medical expenses, outstanding loans, etc. must be paid first before the state can even look at the account. State Medicaid agencies MAY make a claim but are not required to do so. Also, many states like Pennsylvania and Oregon are passing legislation to prevented this “clawback” through legislation. Check you state for details, and start advocating to end the Medicaid clawback in your state.

4. Only the account holder can contribute money into the ABLE account: 

Wrong! Anyone can contribute money into the ABLE account. Family and friends can contribute up to $15,000 a year as a tax free gift. To control the account the person without a disability must have legal guardianship or financial power of attorney. 

3. ABLE Accounts are like 529 College Savings Accounts, but my child with Down syndrome isn’t planning on attending post-secondary school so he/she doesn’t need one.

Wrong! Although ABLE accounts are like 529 accounts in that they’re a tax-advantage type savings vehicle, the account holder can spend ABLE money on much more than just post-secondary costs. “The list of eligible expenses is defined very broadly,” explains Sachs. ABLE account money can be spent on anything that improves the life, independence and wellness of the account holder. This means Troy could use his ABLE account money for an iPad to play his favorite Starfall phonics game. An adult beneficiary could buy an iPhone (assistive technology) to call Uber (transportation) to get to ballroom dance lessons (wellness), and their ABLE account would pay for it all. “There’s no preapproval necessary for these purchases, but keep your receipts in case you’re ever audited,” Sachs says. Click here to learn more about how the ABLE account money can be spent.

4. We already opened a trust for our child with a disability, and you can’t have both a trust and ABLE account.

Wrong! An ABLE account is not in competition with a special needs trust. You can have both; we do. They’re just two tools in your toolbox. The biggest difference is a special needs trust is taxable, usually have higher costs to set up and maintain, and you must have a lawyer or trustee manage it. But the government cannot touch any money in a trust, whereas states MAY make a claim on ABLE money once the account holder passes (after all other disability and life-related expenses have been paid).

As you can see, there a lot of advantages to an ABLE account. There’s tax incentives, low cost to start and maintain, and a wide list of eligible expenses.

Yes, your state MAY make a claim on the account if your child passes suddenly, but this may be a reason to use the account differently than say a special needs trust. You may keep a smaller amount of money in the ABLE account, or use it for grandparents or family members to gift to your child.

For more information about ABLE and sign up for a the ABLE National Resource Center’s webinars click here.

Federal Appeals Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

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If you are a parent or teacher of a child with Down syndrome, you’ll want to follow the proceedings of a Ninth Circuit case that may change how and where school districts place students with intellectual disabilities. You can watch the proceedings LIVE, Thursday April 11th here.

The case revolves around a 2nd grade Arizona boy with Down syndrome whose parents refused to send him to a self-contained classroom at a different school, because they argue he was making progress at his homeschool in general education. Starting in kindergarten, the student attended his neighborhood school in a regular classroom with a paraprofessional, and was pulled out 110 minutes for “intensive instruction” in reading, math and writing.

Related: 5 Tips for Including Students with Down Syndrome in the General Education Classroom

“Student was demonstrating progress on his IEP goals, including the majority of the goals that were implemented by the resource teacher (academic/social- behavior goals). Additionally, the student’s resource teacher admitted that his communication skills greatly improved from two-word phrases, which were limited to things he knew about, such as about his mom, dad, or sister, or naming things that he knew, to three to four-word phrases. The impact on his typical peers and teachers was described by his kindergarten teacher as ‘amazing’,” according to the plaintiff’s open brief (parent’s attorney filed).

The Gilbert Unified School District has 30 days after the plaintiff’s brief to file their own, but the following link gives you a more detail description of the district’s possible argument. Click here.

Ninth Circuit Court of Appeals

Despite his progress, the Gilbert Unified School District in Arizona decided just a few months into his kindergarten year that the boy should have 20 more minutes of “intensive instruction.” This time in a self-contained classroom at another school. The school district said the new school would be better for the student, and provide him with “more services at his level with peers in a small environment that could have been better for him.” This subjective opinion was the only evidence they used to propose a change in the boy’s IEP.

The parents argued that it amounted to a change of placement without the proper evaluation of his progress under his current IEP, but the district argued it was just a change in location. Although the Special Education Director testified the model of teaching was different at the new school, where the students would be in a self-contained class 100% of the day using a replacement curriculum.

Sound familiar? It’s likely, if you have a school-aged child with Down syndrome, your child or someone you know has fought a similar battle. After 30 years of research and federal law to back up inclusion with proper supports, parents are still fighting for their child to be included in kindergarten of all places. And the battle often gets more difficult as students progress through school.

But Endrew vs. Douglas County has give parents an opportunity to demand more for our children. The U.S. Supreme Court ruled that schools must provide special education that enable students with even the most significant cognitive disabilities to meet “challenging” and “appropriately ambitious” goals. For these students, progress may be measured against “alternate academic achievement standards” designed to promote further education, work, and independence.

Related: Realizing the Promise of the Endrew Supreme Court Case

The Ninth Circuit Court of Appeals must now decide if the school district made a change in placement and threatened the student’s access to a Free and Appropriate Education in the Least Restrictive Environment as the parents argue, or if it was simply a change in location as the school district contends.

The National Down Syndrome Congress and National Down Syndrome Society have written amicus briefs in support of the Arizona boy, stating the Supreme Court’s Decision in Endrew announced a “Markedly More Demanding” standard for educating students with disabilities, reflecting the IDEA’s high expectation for students. The organizations’ amicus brief also describes the research that proves “students with disabilities benefit from being included in regular classrooms with non-disabled peers.” You can read both briefs here and here.

Fortunately, the Individuals with Disabilities Education Act (IDEA) allows the Arizona boy to stay in his current placement while the court proceedings continue. He’s now in a regular 2nd grade classroom at his homeschool, and his parents say he continues to make progress.

The map below shows the states that will be impacted by the Ninth Circuit of Appeals decision. If you live in a different district the court decision doesn’t have to be followed, but could be used as a possible argument by parents or a school district in similar due process hearings.

The parents and school district can still appeal to the U.S. Supreme Court if they are unhappy with the Ninth Circuit’s decision. I’ll keep you posted on the court case as it unfolds.

You can read about the family in a local Gilbert, Arizona news story here.
You can also read a more recent blog post about the Arizona boy’s mom who has fought for the last 2-years to ensure he remains at his neighborhood school. Click here.

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.

From Awareness to Acceptance this #WDSD

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March is Developmental Disabilities Awareness Month, and March 21st is World Down Syndrome Day. As my journey with my own son with Down syndrome has evolved I realize that I want more than awareness. I’d love for our society to move from awareness to acceptance, recheck our ableist tendencies, and provide a more equitable world for our loved ones with disabilities.

I admit I once wore those “crazy socks” for World Down Syndrome Day, but now realize the campaign does little to persuade people to actually accept my son. The organizers of his trend even changed the name to “wacky socks,” because of the inherent ableism in it’s name: “crazy” socks. I think it’s important that we move past these awareness campaigns to something that persuades actual action. But how? How do we raise awareness and persuade people to truly accept people with disabilities for who they are?

Outside of the classroom, there’s many small, yet powerful actions you can take. Advocating for laws that end sub minimum wages, and promote community inclusion can be as easy as sending a letter to your representative or showing up to a rally. Another powerful step towards equity is working with people with disabilities to understand how they want to be respected and supported. Always question yourself and others. Do you or people around you still harbor ableist feeling like pity or inferiority of people with disabilities? Learning from these moments and moving forward is an important first step towards acceptance, and something I still practice and struggle with sometimes.

When and how should parents formally introduce their child in a classroom setting, and promote disability acceptance? 

First, let’s talk about what NOT to do. You might have come across the use of disability simulations: marshmallows in the mouth to simulate low tone and lack of intelligibility, hands in mittens to simulate poor fine motor skills, blindfolds to simulate–well, being blind. Do you notice what all these simulations highlight?

What a person can’t do, rather than how individuals with disabilities successfully adapt to their environment with the right modifications and supports.

Instead of promoting empathy and awareness, research studies show disability simulations actually promote fear, apprehension, and pity towards their classmate with a disability. Also, because the simulation is only for a short time, it’s hard for typical students to truly experience the classmate’s limitations in a meaningful way.

Awareness Activities in Grade School

Trying to promote acceptance will take more time and thought than awareness campaigns but they’re worth it. I invited a local self-advocate with a disability to come talk to our entire school body about acceptance. I hope that this will make a lasting impact.

Many teachers and parents like to take a more broad approach to awareness of differences in lower grades. For instance, in kindergarten through 2nd grade you may not even mention the term “Down syndrome” or “Autism.” Many parents decide the discussion shouldn’t single their child out, but foster acceptance of all students. Children’s books are a great way to foster acceptance of people for who they are. Here’s some examples:

“My Friend Isabelle” by Eliza Wilson: I love this book, because it starts with two friends that have so much in common, but also talks about differences. The reader only finds out that one character has Down syndrome by reading the jacket note at the end of the book. It also has a guide to help teachers and parents incorporate the book into a classroom lesson. Watch the YouTube click below for a video version of the book.

“The Day the Sheep Showed Up” by David McPhail: About farm animals who had never met a sheep before. The sheep teaches them that they are more alike than different. Great metaphor for accepting those that are different, and fabulous for new readers.

“King Louie and His Marshmallow Kingdom” by Louis Rotella: About a little king who rules over a kingdom where the sun always shines and every meal is a picnic. Louie explains to his friends that he loves to do kid-things, even though he’s different. This is one of my all-time favorites!

Awareness Activities with Older Students

Books can also be used with older students, and some may actually define a disability. But more hands-on or project-based activities are also fun at this age. Open discussions about what students already know about disabilities (or think they know) is imperative. Prior knowledge allows teachers and parents to assess where to start, as well as any preconceived notions students may have. Discussing inclusion is also important at this age. All kids want to be included.

The Governor’s Council for People with Disabilities did a fabulous disability awareness campaign in Indiana and posted all of their lessons here. Some of their ideas include:

  • Students create a class motto for inclusion
  • Anonymously write questions students have about disability and difference, and have those questions read and answered as a class (or in private)
  • Create a classroom mural that depicts what an inclusive class, school, and community looks like
  • Perform a simple skit showing appropriate and inappropriate ways to interact with classmates with disabilities: people’s first language, asking before you help someone, inviting classmates to special occasions, treat your classmate the way you want to be treated
  • Show a movie or show that depicts someone with a disability as the main character
  • Evaluate their school or local business to see if they accessible for people with disabilities. If they’re not, come up with a plan to change that.
  • Invite a sign language interpreter to teach students some simple signs.

What are you planning to foster acceptance in your child’s classroom? Add some ideas in the comments sections.

The following are some other books that may help you foster acceptance in the classroom:

Why Your Child Needs a “No Consent” Letter for Restraint and Seclusion

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Two Ohio teachers caught on video dragging an Autistic boy will not be criminally charged. The disturbing video below shows the teachers restraining the boy. The teachers still face possible disciplinary action.

This type of incident of restraint and physical punishment of students with disabilities is more common than you might think.

Two Ohio teachers drag an Autistic boy

A study of 99% of public schools by the United States Office of Civil Rights found that students with disabilities are restrained and secluded at a much higher rate than their typical peers. The office found that although students served under IDEA make up only 12% of the U.S. public school population, they make up 67% of students who were restrained or secluded.

That’s 70,000 students with disabilities who were restrained or secluded in the 2013-14 school year, for which the last data was recorded. Let that sink in for a moment. And assuredly there’s a lot more incidents that are not reported.

A “No Consent” Letter for Restraint and Seclusion

The best way to prevent this type of incident from happening to your child is to find out if your school’s personnel are trained in non-violent crisis prevention and to add a “No Consent” letter for restraint or seclusion in your child’s official records. The Individuals with Disabilities Education Act (IDEA) is very clear about this issue. The law states that school districts MUST consider the use of positive behavioral supports and Functional Behavior Assessment (FBA) plans if a child’s behavior interferes with their education or the education of others, but most do not.

Read Related Post: Why Your Child’s Teacher Should Be Trained in Non-Violent Crisis Intervention

I could never imagine my son’s teachers using the techniques the teachers above used and my son doesn’t really have any violent behaviors. Still, I have a “No Consent” letter on file. The statistics are not in your child’s favor, no matter who your child’s teacher is. It’s prudent to add this type of letter to your child’s record whether you like their teachers or not. The letter need not be adversarial, but instead puts in writing your expectations for behavior supports.

What should be included in a “No Consent” Letter

A “No Consent” letter will make it clear that you do not approve or consent to any harmful or exclusionary techniques. Include the following in your letter:

  1. Name and contact information for your school district
  2. Date that you send the letter
  3. Name of your child, birthday, and school they attend
  4. Describe your child’s disability and any behavior concerns you have
  5. Clearly state that you do not consent to any negative behavior techniques including: restraint, seclusion, physical management, seclusionary time outs, forcible holding, dragging, use of ties and straps, slaps, deliberate humiliation, or deprivation of nutrition or exercise.
  6. Clearly state your opposition to these strategies: This letter is to make it clear that I have not authorized or given consent to any of the above strategies being used on my child
  7. Add family emergency contact information in case any situation arises where the school feels they cannot respond in a safe and non-threatening way.
  8. Make clear that IDEA states that only positive behavior supports like a formal behavior analysis should be used. Add that you would like to be part of any team that develops a FBA plan.
  9. Add any effective behavior techniques that have worked in the past for your child.
  10. Ask that an IEP meeting be held if problems arise or persist.
  11. Thank them and remind them that you will be holding them accountable if any restraint or seclusion technique without your permission.

The last time Congress took up the issue was in 2010, but the bill died because of language in the bill that would have allowed restraint and seclusion to be written into the students IEP. Now the federal government under the new Every Student Succeeds Act is requiring states to reduce these “adversive behavior interventions.” Sadly, parents must be proactive about the possibility of restraint and seclusion until school districts and the government takes a clear stand.

If you want to see a sample of a “No Consent” letter click here. Do you have a no consent letter on file for your child? Has your child ever experienced this type of negative behavior strategy? Tell me what you think below.