“I Have A Dream…”

“I have a dream. It’s a dream deeply rooted in the American dream…”-Martin Luther King

I have a dream one day our sons and daughters with disabilities will be valued as equal members of their community. I have a dream teachers and principals will set high expectations for our children, realizing the value of inclusion with their typical peers.

I have a dream those non-disabled peers will one day become employers and community leaders who provide adults with intellectual and developmental disabilities (I/DD) the opportunities they deserve to fulfill their true potential. That those typical peers will become caregivers, researchers, therapists, and medical professionals who look at people with disabilities, not as a problem to be fixed or eliminated, but as a beautiful expression of humanity to be shared with the world.

Rev. Dr. Martin Luther King Jr. speaking. (Photo by Julian Wasser//Time Life Pictures/Getty Images)

On Monday, January 18, 2021, we celebrate Martin Luther King’s birthday and are reminded of how interlinked the disability community’s struggle is with the African American community. Without downplaying the abhorrent past of slavery, there’s still a lot of connections to be made. Both movements are struggles for basic human rights: freedom, equality, and justice.

Read Related Post Here: Advocates Urge Congress to Increase Funding for Down Syndrome Research

The Civil Rights Act of 1964 woke up parents of children with disabilities. The public and their representatives in Congress began to understand how segregation and unequal educational opportunities were the anti-thesis to the American dream. Before the 1970s, many children with disabilities were not given the opportunity to attend school at all. As Congress was formulating the Individuals with Disabilities Education Act (IDEA) of 1975, there were 36 pending court cases over the rights of students with disabilities.

More than 30 years after the civil rights movements began, great progress has been made for both black Americans and people with disabilities. The most abusive and neglectful institutions have closed their doors. Courts have expanded their interpretation of the 14th Amendment’s “equal protection clause” to include minorities and those with disabilities. Segregation has legally ended for both groups (including the Americans with Disabilities Act (ADA), Rehabilitation Act–including section 504, and IDEA for people with disabilities).

Read Related Post Here: How School Boards are Using Endrew F. Supreme Court Case Against Students with Down Syndrome

But we know, even though both groups have made great gains legally, they still face prejudice and exclusion. Only 16.35% of students with I/DD are included in a regular education classroom with supports for most of their school day. Black students are overrepresented in special education and are more likely to be identified as having an intellectual disability than their white peers. The intersectionality between race and disability is ever apparent.

The Supreme Court recently ruled in Endrew F. that schools must provide a “more meaningful benefit” to students with disabilities, but some school districts and national organizations are interpreting this to mean students with the most significant disabilities must be segregated to earn this benefit. (Read more about this here).

In this highly partisan time it often seems like one step forward and one step back. For example, last year the Department of Justice scrapped ADA guidance that promotes integrated work for people with disabilities. With unemployment for people with I/DD at 75%, this is a step backwards. We need more guidance, not less. (Read more about the rescinded ADA guidance here). Fortunately, the U.S. House of Representatives recently passed the Raise the Wage Act, which will phase out sub-minimum wages. Click here to email your Senator to support this bill.

Let’s make the year 2021 about fully realizing the rights and humanity of people with disabilities of every race. There’s so much more we can do for and alongside our brothers and sisters with disabilities.

Progress will continue! It will take tireless action from self-advocates and allies. When our government and institutions waver in indecision about full inclusion for our loved ones, we must forge forward. So what can you do this Martin Luther King Day to advocate for someone with Down syndrome?

Call to Action

Advocate: learn about your student with a disabilities rights and how to advocate at the IEP table by signing up for a FREE webinar here, read online resources or order an advocacy book here, joining the Council of Parent Attorney’s and Advocates here, or the National Down Syndrome Advocacy Coalition (NDAC) here.
Think College: make it your child’s long-term IEP goal to go to college. There’s more than 260 college options for students with I/DD. Check it out here.
Donate: give to your local Down syndrome affiliate, or to a specific cause. Global Down Syndrome Foundation has been raising money this year to create updated, evidence-based medical guidelines for adults with Down syndrome. Click here to find out more.
Legislate: support national legislation to end organ transplant discrimination of people with disabilities. You can read about the state legislation I helped advocate for in Ohio here. Read about the federal bill here.

How do you feel about the state of disability rights? What do we need to do right now to continue moving forward? Comment below.

June 25, 2019June 25, 2019

Busting the Myths Surrounding ABLE Accounts

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.

October 11, 2018October 10, 2018

Why You Should Hire Someone with Down Syndrome

Sally loves her job. She shows up on-time with a smile, and dedication to her work. She almost never misses a day, and her co-workers say she boosts morale. Sally also happens to have Down syndrome.

“Having a job is important to me, because I like to help people. I also want to earn a paycheck, so I can buy a plane ticket to visit my brother in Washington,” Sally explains.

She got her job with the help from Project Search; an international job transition program that operates in all 50 states and 10 countries. The program’s goal is to help individuals with cognitive disabilities find competitive employment, and keep it.

Upper Right is Theresa Raypole with Sally

Sally says “I learned to be organized in Project Search, and to always clean and sanitize.”

She wasn’t even sure she’d be able to participate in the program. Sally’s single mom works full time, and couldn’t get her to the program consistently.

Theresa Raypole, the coordinator and educator for our local Project Search program, says transportation is often an issue, but not something that can’t be overcome.

Although Sally’s mom was nervous, Sally decided to use the local city bus line to get to and from the Project Search campus. The program helped her learn how to use the line, and by the end of her internship she was riding independently.

Director Raypole accepts 12 students into the program each year, and by this spring’s graduation over half are already receiving competitive employment (they have a year from graduation to secure a job).

When students are asked “If you could go back to high school and tell your teachers what you need to be successful in life, what would you say?”

“Teach us to be comfortable around all types of people and work.”

“Talk to us about our future.”

“Teach us professionalism.”

“Get us out in the work world and community.”

“Teach us that criticism is ok. Teach us how to handle it, so we can learn from it.”

Their answers are common sense for any type of success, yet provides insight into society’s low expectations for them.

Unfortunately, only 17% of students with cognitive disabilities are included in general education classrooms in high school, and the lessons above are often absent during their educational career. Once they leave school, ONLY 24% of people with cognitive disabilities find work.

In our local Project Search program, students spend 9 months interning at a local medical center. Raypole says often medical professionals are at first nervous that individuals with cognitive disabilities are allowed in clinical situations.

But she says these professionals’ first impressions were quickly proven wrong. In her first year running the program two students were hired in the surgery department.

The head nurse found the surgery department was able to turn rooms over faster with these employees, and soon they created positions for more to be hired.

“It’s hard to explain to the business world that this is not just the ‘nice thing to do.’ It really will raise their bottom line,” Raypole argues.

Often employees with Down syndrome and other cognitive disabilities are highly motivated, loyal, prompt, and exceptional at customer service. They often boost co-worker morale and productivity.

Project Search students complete an internship customized to their interests. Even though they’re working in the hospital they may have an interest in landscaping or working with children, so the program creates a position for them to hone those skills.

“Every opportunity and challenge is faced during the internship. They quickly learn that they can’t just go to the break room whenever they want, or talk nonstop to their co-workers. These are all soft skills they never learn in high school. They learn to self-advocate.” Raypole explains.

“Project Search helped me learn to do things on my own and be confident,” Sally says.

Sally quickly found employment after graduating from Project Search. Now she works for a local high school’s food services division.

She gives this advice to other individuals with Down syndrome looking for work:

“I would tell others to work hard and always do their best.”

Want to find a Project Search program in your area? Head here.

For more information on employment for individuals with Down syndrome head here.

July 12, 2018July 12, 2018

Letter to My Son’s New School

A parent is often a child’s best advocate. We usually know our child’s history and potential for learning better than anyone else. But too often, when it comes to a child’s Individualized Education Plan, parent concerns are not inserted into the conversation or official record.

The Individuals with Disabilities Education Act (IDEA) and the recent Supreme Court Case, Endrew F., stresses the importance of parent participation at the IEP table. Parents are supposed to be equal partners of the IEP team, but often the IEP document is skewed to the school district’s point of view.

Read Related Post: Endrew F. In Action at the IEP Table

To ensure your point of view is injected and carried out, include a Parental Statement every year. Attached this letter and a bulleted list of concerns to your child’s IEP. You can even have them copy and paste your input into the online IEP form. There’s no reason why they can’t. Read the one I sent to my child’s new school, in a new state. Your letter could talk about the progress or lack of progress your child has made in and out of school since his/her last IEP.

Feel free to use my format, and change it to your child’s situation.

Parental Statement for Troy

To Whom it May Concern:

Our 5-year-old son, Troy, is a congenial, kind, and bright young boy. We’re nervous about him starting kindergarten, and we expect he will be too. Troy has Down syndrome, and although our expectations for him are the same as his typical twin brother, Hunter, we fear that well-meaning community members may have little to no expectations for him. We expect that Troy will be fully included in the academic and social aspects of k-12 education with proper supports. Our long-term goal is to have Troy graduate high school with a regular diploma, prepared for post-secondary education or integrated, competitive employment. With the national graduating rate for students with disabilities around 50%, and unemployment at 80% for people with disabilities, this may seem like an impossible goal to reach. But we understand that the law supports placement in general education first with supports, and all the research proves it works. We’re betting on our son, because we know he’s capable of contributing meaningfully to his community.

My husband is an emergency medicine doctor with the United States Air Force, and this is the third state Troy has lived in in his short life. I stay at home, as well as advocate for other families in the special education process. The move across country is sure to be tough on Troy. He has a hard time with change. He thrives on routine and clear expectations. We’ll try to ease the transition with social stories, and keeping our daily routines. We expect that kindergarten transition will be hard as well, but Troy loves school. If proper transition supports are set up and carried out with fidelity, we know that he will do well.

Troy has been in an inclusive educational setting since right before his 3rd birthday, and has received early intervention since birth. He and his typical twin brother have shared the same teacher for three years in an Ohio public preschool. The class was fully inclusive, but Troy often had the most significant disability in the preschool class each year. Even so, he did very well in this setting, and exceeded teachers’ academic and social expectations. Speech and OT were pushed into the preschool class, and Troy left Ohio well prepared for kindergarten. He knows how to write his first name (albeit messily), use scissors, color, identify all his letters, over 20 sight word recognition, one-to-one correspondence from 1-10, patterning, and much more. Even more important, he understands the routines and expectations of a classroom, and how to socialize with other students. To gain these skills, Troy needed explicit teaching and specific support in the general education classroom.

Although Troy has no medical problems, he has been diagnosed with Childhood Apraxia of Speech. Using push-in speech services, as well as private speech therapy, Troy has grown by leaps and bounds when it comes to functional communication. Troy is saying many more novel phrases without prompting. I can understand most of what Troy says, but strangers often have a hard time understanding him unless the conversation has context or visual clues. Troy does have many common phrases (like “Yes, I do” or “I not do that again”) that are very intelligible. Often practicing functional phrases, with visual cues, that will be used often in the classroom is the best way to improve Troy’s intelligibility.

Positive behavior supports work best for Troy. As you know, behavior is communication, and Troy is always trying to communicate something. He loves attention, and will work hard to gain your attention even if it’s negative in nature. Troy doesn’t have a mean bone in his body, so most of his problem behaviors are attention-seeking in nature. The few behavior issues Troy had in preschool were remedied with continual visual cues or giving him positive attention. Some issues included eloping to his favorite therapists office. Teachers solved this by putting a “stop” sign at the classroom door, and pushing in speech therapy instead of pulling it out. Troy loves circle time, and during free play he would often want to take down the pictures of his classmates, and use the teacher’s pointer to look at them. This issue was solved by creating his own book of classmates’ pictures and giving him his own pointer. Troy loves to feel helpful, and be a leader in class. Troy also needed to explicitly be taught classroom play-based skills, and will likely need help with this in a new classroom.

Read Related Post: 3 Words That Will Transform Your Next IEP Meeting

We’d love for Troy to have an experienced, yet open-minded kindergarten teacher. Someone who has high expectations for our son, and empathy for our situation. I taught middle school and high school students before I stayed home with my twin boys, so I understand the challenges of meeting the needs of every child. Still, we know the general education teacher is the content expert, and the best teacher to serve our child, with support from special education teachers or paraprofessionals. We know his teachers will need a lot of support. I hope to advocate for Troy’s teachers, and volunteer weekly.

We have high expectations for our son and the school he attends. We expect that his IEP will be standards based, and include all the accommodations and services he needs to make progress in light of his disability. We want IEP goals that are appropriately ambitious, and ensure that he is exposed to the same content as his twin brother. I will lean on school personnel as the experts in content and specially designed instruction, as I hope they will lean on me as the best advocate for Troy. I’m excited to work with Troy’s teachers to successfully include him in general education with supports. I know this will not only have a positive impact on Troy, but also the other students in the class who will one day be teachers and employers who will remember Troy and hopefully work to change the current dismal outcomes for people with disabilities.

We consider this letter part of Troy’s educational record, and the IEP document incomplete without this letter attached. I appreciate your time and consideration! I look forward to working with you!

Thank you,

Courtney

June 27, 2018June 27, 2018

Disable Poverty

So, we just opened an ABLE Savings Account for our son, Troy.

It took about 10 minutes, and cost us nothing other than what we plan to save for our son.

What is an ABLE account you ask?

Let me explain by first sharing this shocking statistic I recently discovered while advocating in Washington, D.C., and at the end of this blog post I’m going to ask you to do your part to make a change in millions of people’s lives!

Recent studies found 78% of eligible adults with intellectual disabilities are NOT WORKING!

Just take that in for a moment. Less than one third of people with intellectual disabilities have a job! That’s almost 50% lower employment rate than people without disabilities.

No job. No work relationships. No expansion of skills after high school. No savings. No self-reliance. No self-worth.

It’s no wonder then that poverty and disability are bedfellows. Millions (1 in 3, in fact) of people with disabilities are stuck in an endless cycle of poverty. This is historically by design…

Before Achieve a Better Life Experience (ABLE) Act, a person with a disability (who benefits from Supplemental Security Income or SSI) could only have $2,000 to their name. Any more, and they would forfeit any government assistance — in healthcare, job training, transportation, and independent living services. This has had a chilling effect on jobs for the disabled.

Even if they can work, why bother when they can’t have more than $2,000 to their name? For those that do find jobs, some are paid less than minimum wage and/or work in sheltered workshops.

But since the ABLE Act passed in 2014, things are looking up!

The pocketbooks of people with disabilities will, for the first time, have the opportunity to grow without the threat of losing the government assistance they need to stay self-reliant.

So, what can you do to help lift up those with disabilities, and nudge them towards financial independence?

What You Can Do Today:

1.First, take the pledge! Disable Poverty is an amazing organization that’s trying to spread awareness about poverty in the disability community.

Visit their website at www.disablepoverty.org to take their pledge to end poverty in the disability community. The website gives facts about the relationship between poverty and disability.

Share this with your friends on social media.

You can do this even if you don’t have a loved one with a disability.

2. Second, open an ABLE account if you’re a self-advocate or your loved one has a disability.

It’s essentially like a 529 College Savings Account. You can save up to $14,000 a year, and the person with a disability will not lose government services as long as the account does not surpass $100,000.

Adult self-advocates can use their savings on anything related to improving their health or independence, as well as furthering their education or employment.

Even before your child becomes an adult, you as the legal guardian can use the savings account for anything disability related: medical bills, therapy, assistive technology, orthotics, etc.

There are a lot of myths surrounding ABLE accounts. Visit here to get the TRUTH!

Twenty-seven states have started ABLE account programs, and most allow non-residents to sign up. Since our family is active duty military and move a lot, we had no problem shopping around for the state with the best deal.

We chose Tennessee’s ABLE plan because there’s no start up fee or annual fee, and it has the most investment options at the lowest cost.

The down side of Tennessee’s plan is no debit card option, which isn’t a problem for us since we plan to have Troy use the money as an adult. Check your state too, because often they have a state income tax credit if you’re an in-state resident.

Visit the ABLE National Resource Center to compare state ABLE plans and choose which option is best for your child.

3. Lastly, call your legislator!

There are several bills in Congress right now that hope to improve the ABLE Act.

The one most salient to the Down syndrome community is the Able2Work bill, which would allow Troy and others with disabilities to save even more in their ABLE account as long as they’re employed. They can save up to $26,500 a year, or the national poverty rate (although the $100,000 SSI limit still applies).

A second improvement bill would allow parents to rollover a 529 account into an ABLE account. This is fantastic for all my mom friends whose child had a later diagnosis, like Autism.

The last improvement bill increases the age of disability onset from 26 to 46 (or half way to retirement age).

Sign up for advocacy alerts related to the ABLE Improvement Bills here, and make sure to call your legislator and tell them to approve these bills.

All of this is integral to pushing people with disabilities out of the poverty cycle. They must be able to work and save their money with pride. And Troy’s on his way to doing just that!