Category: Employment

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Self-Advocate Uses Fame To Spread Message of Inclusion

You’ve probably seen this incredible World Down Syndrome Day PSA. I’ve yet to watch it without smiling and crying simultaneously.

Gorgeous actress and model, Olivia Wilde, spending time with family, working, dating, living an ordinary life. But the voice is not Olivia Wilde’s. And the life it describes is anything but ordinary.

20-year-old AnnaRose is the voice behind the 2016 World Down Syndrome Day PSA “How Do You See Me?”

She says the video perfectly reflects her life of inclusion: “I want people with Down syndrome to be heard and to be treated with respect like everybody else. I think that speaking up is the right way to advocate for people who have Down Syndrome like me.”

The ad quickly became a sensation in and out of the Down syndrome community, but AnnaRose says a more recent accomplishment is what really makes her proud.

“I just graduated from Rowan College in New Jersey, and I’m so excited and proud of myself. I did a lot of exciting things to achieve my goal of graduating.” 

AnnaRose says the best part of college life was being included on campus. “I’m a DJ at the Pemberton Campus at RCBC and I have also worked at the bookstore at the RCBC Mount Laurel Campus,” she explains.

This incredible self-advocate didn’t stumble upon fame and inclusion at college by accident. AnnaRose says she and her family have worked hard from day one to make her a fully included member of her school and community. 

“I have always been in inclusive classes, ever since I started school.  My classmates have helped me with school projects, sharing notes, following along, and learning acceptable behavior.  I also have had to work sometimes to get my teachers on board with MY educational goals.  I had to show them that I want to learn. In 2014, I graduated from high school and got my diploma.  I was a member of the National Honor Society and an active member of many clubs in my high school,” AnnaRose describes.

She’s also been included in sports teams throughout her childhood, and in 2015 she was invited as a VIP guest of the ticker tape parade after the USA Women’s National Soccer Team won the Women’s FIFA World Cup.

AnnaRose takes her role as self-advocate seriously.

I had the privilege of meeting her this past April, as we both advocated for the rights of individuals with Down syndrome on Capitol Hill. There, she spoke with Congressmen about issues that impact her.

“For all my life, in my experience, inclusion works. Studies prove that inclusion works for everyone. But, there is still a lot of work to be done,” she argues.

AnnaRose says she is not the exception to the rule. “Inclusion is for everyone,” she argues.

For those who want to follow her path of inclusion, AnnaRose has this advice: 

“In high school, you have to take serious, inclusive classes. Academics comes first. You have to be prepared to work hard in college, and that starts in middle and high school, even elementary school…

You should also take classes that you are passionate about so that in college, you will know what you want to learn more about. I took TV Technology in high school, and then interned in that classroom in college for my major, Entertainment Technology: Video and Digital Media Production. You should also make friends who support your goals, and who you can support, too. I have friends on both sides: with and without Down syndrome. That is important.”

The recent college grad now plans to look for a summer job in filmmaking, radio, or television. She’ll further her education this fall. ” I’m going to Rider University to continue my degree in Filmmaking, TV and Radio,” AnnaRose explains.

And while her ultimate dream is to work on or behind the silver screen, that dream also includes something most of us take for granted.

“I dream of having a strong group of supportive friends, and of being treated with respect by everyone I meet and work with.” 

Congratulations to the amazing AnnaRose! Inclusion Evolution and the entire Down Syndrome community applauds you! You’re an inspiration and we can’t wait to follow your journey of inclusion!

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Inclusion for Individuals with Down Syndrome is Just a Click Away

Down syndrome comes with a lot of assumed can’ts and won’ts. But the world often misses the incredible way individuals with Down syndrome adapt. With the right supports, most things are possible.

Us with my 85-year-old Grandmother

Today, more than any time in history, a life of independence and self-determination is just a click away.

My 85-year-old grandmother laughs that her 4-year-old twin great-grandsons, one with Down syndrome, knows more about modern life than she does. And in a way, she’s right! Troy gets very limited screen time, but has still managed to master his Great-Grandma’s iPad. Technology is intuitive to all young people today; children with Down syndrome are no different.

I can envision Troy living on his own one day, driving to work on time, shopping, exercising, and loving life all with the help of modern assistive technology.

The future is here, and it’s revolutionizing how people with disabilities live

Many of you may have paused when I said “driving to work,” and rightly so. In reality, the likelihood of someone with Down syndrome earning their driver’s license is extremely low. I’ve read a handful of success stories, but by the time Troy’s old enough to learn to drive that number could be higher because of driverless car technology.

This is no longer the stuff of sci-fi movies and dreamers. Tesla recently released their mid-level, $35,000 driverless car, and Nissan promises a car with “autonomous drive technology” by 2020. Google’s second generation car doesn’t even have a steering wheel or brake pedal. Google says in order for people with disabilities to benefit from this type of technology, the car needs to be completely autonomous. Regulators and society in general will have to consider the ethics of this new technology, but that debate is already beginning and there’s no stopping progress.

Inclusion Through Innovation

If driverless cars seems too far-fetched for you, there’s a multitude of assistive technologies that you probably use every day that can help foster inclusion for individuals with Down syndrome. Everyone’s got a smartphone, and that alone has endless possibilities for supporting independence and inclusion.

Got a problem or an accommodation, there’s an app for that:

Alarm Clock

Voice to Text, Text to Voice

Sign Language, iSigns

Navigation

GPS technology

screen magnifiers

Word prediction

Social networking

Tracking Behavior

Organize Personal Tasks, iPrompt

Steve (left) lives independently with his roommate (right)

Disability advocate and Mom-extraordinaire, Ricky Sabia, says her son, Steve’s smartphone was a life line in high school and is now crucial to his independence. “I don’t know if I would have survived him taking public transportation in high school if I couldn’t track him on “Find My iPhone.” Believe it or not, the biggest tool Steve uses now is the alarm. He sets it to remind him of when he needs to leave, when he starts a break, comes back from a break, leaves for the metro—the alarm is for so much more than getting up in the morning,” Sabia explains.

A college student with Down syndrome wants to attend a general class, but can’t take notes. No problem, Google Glasses can record the teacher’s lecture. Grade school students with disabilities could wear the glasses to the zoo and get real time facts about the animals they see.

An iWatch could track a self-advocate’s calorie intake and heart rate, all while listening to music and calling a friend.

I love how all these technologies blur the line between assistive and general consumer technology. This is Universal Design for Learning at its finest. Read my post about UDL here. UDL means providing flexible technologies so that everyone can learn. Typical people use the technologies above every day, and may not even consider how they could help someone with an intellectual disability be better included. The possibilities are endless!

What technologies does your loved one with Down syndrome use to lead a more inclusive, independent life? Share below.

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Why Your Child with Down Syndrome Needs an ABLE account

Some of the best advice I received when Troy was born was to live in the present; to treat my son like any other baby. Looking too far into the future can be a daunting task for parents with children with disabilities.

What do you mean you haven’t opened that college savings fund yet? Troy (right) with his typical twin (Hunter) at 5 months old.

Will my son live independently? Will he have a job, and be a contributing member of society? Will he have friends and be happy? It may seem easier to ignore these thoughts, but thinking constructively about your child’s future has its rewards.

The Achieve a Better Life Act (ABLE) is one way to control your child’s future success today. ABLE accounts are tax-advantage savings accounts, similar to a 529 college savings account but you can save for so much more than just college.

“ABLE accounts give people with disabilities the potential to significantly increase their independence and quality of life, without jeopardizing benefits such as Medicaid and Supplemental Security Income (SSI),” explains Heather Sachs, Senior ABLE Advisor at the ABLE National Resource Center.

Before ABLE passed, individuals who received disability benefits could only have $2,000 to their name. “This was just so wrong. People with disabilities were forced into a life of poverty and dependence on government,” Sachs said recently at a workshop on ABLE at the National Down Syndrome Congress Conference in Sacramento.

Now, with an ABLE account people with disabilities can save up to $100,000 dollars total without losing their SSI or Medicaid benefits. We opened Troy’s ABLE account this past spring. You can read about it here. I soon realized this is not just a college savings account, and with looming threats to cut Medicaid it may end up supplementing needed government supports.

Troy and other ABLE account holders can use their savings at any age on ANYTHING that will improve their independence, health and wellness. This includes private therapies, medical equipment, assistive technology, school expenses, employment related costs, transportation, and housing just to name a few. 

“The list of eligible expenses is defined very broadly,” explains Sachs. This means Troy could use his ABLE account 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.

ABLE Accounts have a $14,000 a year contribution limit, and 48 states already have ABLE plans. You can compare state plans here. Shop around for the best plan, because most states allow non-residents to sign up.

We went with Tennessee’s ABLE plan (even though we have no connection to the state), because their is no initial or annual cost.

Even though roughly 10 million Americans could benefit from an ABLE account, only 10,000 accounts have been opened since the first program started in 2016. So, why aren’t more people taking advantage of this tax-advantage savings accounts? “In a few words: lack of information and skepticism,” says Sachs.

Now the ABLE National Resource Center (ANRC) wants to change that with an awareness campaign starting the month of August. You can sign up for weekly ABLE informational webinars (every Wednesday in August) here.

Check back next week, when we bust the myths surrounding ABLE accounts.

 

 

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NDSC Convention Advocates Fight to Save Medicaid

The 45th Annual National Down Syndrome Congress Convention was amazing. Advocates from all over the country and world came together for the biggest, happiest family reunion of the year.

This year in particular advocates were mobilized to fight to #SaveMedicaid. Dozens of advocates, including myself, shared our story in this short video clip. Please share widely!

https://vimeo.com/226929916

U.S. Senators on Tuesday voted on a motion to proceed to debate the healthcare bill. There’s still no clear understanding of what the bill would include.

“Senate Republicans narrowly prevailed on a key procedural vote on Obamacare repeal legislation, a big win for President Donald Trump and GOP leaders after their repeal effort was all but left for dead last week.

Vice President Mike Pence was expected to break a tie. Republicans will now start work on legislation, with a series of votes expected in the coming days and the outcome uncertain.”–Politico

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Inclusion is the Canary in the Coal Mine

We all want our child with Down Syndrome included with their typically developing peers in school and work. Federal law requires inclusion. The past 40 years of research proves inclusion is best practices. So why are people with cognitive disabilities still segregated?

Lack of full inclusion of people with cognitive disabilities is the canary in the coal mine! 

I recently read a fascinating parable by venture capitalist, Adam Quinton, describing why more women weren’t working in tech industries. The comparison can be used for inclusion of our community too.

Canaries were taken down mines as early detection of danger. The small, caged birds would die of dangerous gases before the miners, allowing them to get out before the gases effected them.

“But what happens when the little canaries died?” Quinton asked. “Did the miners blame the canaries for not being tough or well-trained enough? Or did the miners decide that really what they needed was more canaries?”

Quinton argues, they neither blamed the canaries or solved the problem by getting more of these birds. “Rather they reflected on the underlying problem facing the canaries. When they thought about it, this wasn’t the canaries themselves. They didn’t need “fixing,” rather it was the atmosphere,” he argues.

Students with cognitive disabilities aren’t the problem. They don’t need to be just like their typical peers to enjoy meaningful inclusion. Placing all the students with cognitive disabilities together in a separate room doesn’t fix the problem either.

I agree with Quinton when he argued that we must “Look at the context they operate in and work out what is wrong with your organisational culture and ask how you can make it more inclusive.”

Only when the “I” in Individual Education Plan (IEP) is focused on will students with disabilities get what they need, whether that’s in a full inclusion setting or some variation of inclusion. Only then will students with cognitive disabilities feel more valued and supported, as well as the teachers and typical peers that support these students.