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.

July 25, 2017July 26, 2017

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

July 16, 2017

How One Retired Police Officer is Changing Perceptions of Down Syndrome

Ethan Saylor

The name alone brings instant sadness to the minds of special needs parents everywhere. A life taken too soon. A senseless death.

The 26-year-old man with Down syndrome died after police restrained him in a movie theater that he refused to leave. Ethan stayed for a second viewing of a movie, without having paid for it. The aide that was with him at the time begged the off-duty police to not aggravate Ethan; that his mom would soon arrive and make him leave. The death was ruled a homicide as a result of asphyxia, and the off-duty police officers involved are now being tried in a civil law suit.

GTO Cadet, Tyler Caldwell (left) and GTO Founder, Travis Atkins (right)

21-year law enforcement veteran, Travis Atkins, says the Ethan Saylor death was a travesty that should have never happened. Now he’s started a non-profit to help change perceptions of people with intellectual disabilities within the law enforcement community.

Growth Through Opportunity (GTO Cadets) is a program designed to provide adults of all ages with Autism Spectrum Disorder, Down Syndrome, Cerebral Palsy, and other unique challenges an opportunity to gain valuable job skills and social experience.

“First responders and GTO Cadets grow immensely in their respective levels of understanding by being partnered together over a 16-week period. This drastically decreases negative encounters during future, real-life situations,” Officer Atkins explains.

I got a chance to hear Officer Atkins talk at the 1st Annual NDSS #DSWorks conference. He brought along one of GTO’s first cadet graduates, Tyler Caldwell, who happens to have Down syndrome.

“I got to wear a uniform just like all the other officers. When I was at State Special Olympic Games, I got to wear it and march in the torch lighting ceremonies with officers from other cities. People would recognize me when I was out as one of the GTO Cadets. That really made me happy. All my friends wanted to be in the program, too. Police officers are really nice people and are my friends,” Caldwell describes.

After spending 16 weeks as a volunteer cadet, Caldwell got a job at Kroger. “People recognized me from Police Department,” Caldwell says. And Officer Atkins says that’s the end goal. “Our goal is to enhance confidence, employability, and quality of life for participants. From a law enforcement officer’s perspective, there’s no better way to learn than by first-hand experiences in a controlled environment,” Atkins explains.

With the assistance of a first responder, cadets are taught specific tasks inside the department, as well as in the community.

“They assist our police department with crime prevention presentations, role playing at the police academy (which helps mold the minds of young recruits), and playing the role of the National Crime Prevention Council’s McGruff the Crime Dog®,” Atkins says. The City of Roanoke even has a sheriff’s vehicle and ambulance with the GTO logo, which helps break down barriers within the community.

Atkins says it’s community inclusion that will help prevent another tragedy like the death of Ethan Saylor. “GTO challenges other agencies across the nation to be pioneers and trend setters in the field. Be creative. Be innovative. Consider incorporating these fine individuals into your agency.”

To learn more about Growth Through Opportunity check out their website here or their FB page here.

July 13, 2017July 12, 2017

‘Seeing the Forest For the Trees’ in my Son’s Future with Down Syndrome

My son, Troy, is almost 5-years-old. When he was born I knew no one and nothing about Down syndrome.

I was hungry for any information I could find about Down syndrome. I spent the first month of his life on Google (bad idea, by the way). I quickly graduated to national conventions, advocacy groups, and now specialized training in special education law.

Secret Facebook groups and specialized books taught me all I need to know…Or so I thought.

Nothing can replace trial by fire. Living life with someone who rocks an extra chromosome gives you a front row seat to the docudrama that is Trisomy 21. Troy has taught me so much about how outdated stereotypes and low expectations can warp your perception of disability.

But living with a preschooler with Down syndrome often reminds me of the saying “It’s hard to see the forest for the trees.”

For a while now, I’ve been searching for ways to steal a glimpse into Troy’s possible future. I really want to see “the forest.” One way I’ve done this is through a communications workshop with adult self-advocates. Simply talking and interacting with adults with Down syndrome on a regular basis has taught me so much about what our future may hold and how to plan for the best.

This led to an opportunity, from our local Down syndrome group’s Executive Director, to talk about the impact of our communications workshop on a local radio show.

Walter (bottom left) with MVDSA Executive Director, Willie Cox, and I at iHeart Radio

The natural pick for my co-interviewee was Walter, a 45-year-old iHeart Radio lover!

When we showed up to the radio conglomerate, Walter already had long-time friendships with every disc jockey, knew which of the 7 radio stations they were assigned to, and the exact times they each went live. Everyone hearts Walter!

I worked in radio for some time during college, and I came to appreciate the intimacy of the medium. You have to capture that emotion and authenticity the first go round, because your listeners can’t rewind or reread your story.

A common rally cry in the disability community is “Nothing about us, without us!”

Without Walter our story of advocacy would be flawed. We spoke with DJ, Kim Faris, about needed services and jobs for individuals with Down syndrome. Walter nailed the interview. He gave our radio interview the authenticity and emotion the audience will remember.

He was direct: “Hi, I’m Walter. I have Down syndrome and I’m proud of who I am.”

Not to mention, funny: “107.7’s DJ, Chris Davis, promised to pay me if I mentioned him today.”

I like to imagine an expecting or new parent with what seems like a scary diagnosis randomly tuning in just as Walter is proudly talking about his job. I know I would have loved to hear Walter when I was in the throes of Troy’s first few months.

At 45-years-old, Walter did not get all the great services Troy receives through early intervention and inclusive education. Still, Walter thrives! It’s so important to remember what you’re actually advocating for sometimes. Just like Troy, Walter deserves a life of self-determination and choice. We really have to listen to our self-advocates at all stages of life to understand their needs and how to pave a better path forward.

You can listen to our radio interview live in the Dayton area on July 9th starting at 7 a.m. on any iHeart Radio Station: 107.7, 103.9, 94.5, 99.9, 104.7, and 106.5.

Or you can listen online here.

From Left: DJ Kim Faris, MVDSA Executive Director Willie Cox, Self-Advocate Walter, and I

July 3, 2017June 27, 2018

This Land is Made For My Son with Down Syndrome, Too

The Fourth of July is a time of reflection of our nation’s past and present. As a special needs mom 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, Troy, 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, Troy, was born life expectancy more than doubled to 60-years-old. Many laws contributed to this amazing feat, and one of the most important was Medicaid. The social program was a bipartisan solution to healthcare for the poor, and was signed into law by President Lyndon Johnson in 1965.

In 1981, Ronald Reagan approved the Community and Home Based Waiver Provision within Medicaid. The waivers are rooted in the idea that individuals with disabilities are happier, safer, and more free in their home and community. Not to mention, it’s a cheaper alternative to institutionalizing individuals with disabilities.

The healthcare proposal that recently passed the House of Representatives and is currently in the Senate would cut Medicaid by $834 billion dollars over the next decade. Half of those cuts would come from “per capita based caps.” This means, instead of a federal and state partnership, the federal government would cap the amount of money they give to states to a fixed amount. Cash strapped states would likely cut Community and Home Based programs first.

Troy playing baseball with his typical peers

In a time of growing distrust of government, you need to know that the federal government has made a huge positive impact on the lives of our nation’s most vulnerable citizens. My son is proof of this progress. At almost 5-years-old, Troy, can do everything his neuro-typical twin brother can do. He’s potty trained just like his typical twin, can read and sound out simple sentences like most kids his age, and plays on the same tee ball team as his typical peers.

What you may not realize is the supports he receives during early intervention and in his inclusive preschool (like PT, OT, and speech) are partially funded through Medicaid. When my son reaches adulthood Medicaid provides job training, transportation, and independent living supports through local and state run programs like Project Search. At birth we put our son on Ohio’s Medicaid waiver waitlist for these adult supports and services. As Medicaid stands right now, that waitlist is 18-25 years long. What will happen if these cuts are approved? Likely we’ll never see the end of the waitlist; if we do, the services will likely not be what they are today.

Ohio Governor John Kasich opposes the Senate bill and in a letter with three other GOP governors stated: “It calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.” Over 700,000 Ohioans would be impacted by Medicaid cuts if approved.

Troy and I met with Senator Rob Portman’s staff in June. We shared our Medicaid story, but staffers gave us no indication of how Senator Portman felt about the disability community. After the Senate delayed the bill, Senator Portman came out in opposition to it, citing the opioid crisis here in Ohio. For sure, drug treatment and mental health will also be negatively impacted, but the disability community must not be ignored. Call Senator Portman or your own Senators today at (202) 224-3121 , remind them how far we’ve come as a nation in the treatment of our most vunerable citizens. Tell them to save Medicaid, and vote NO to any cuts or caps on the program.