ADVOCACY ALERT: Help pass the ABLE Act – contact your representatives!

Contact Your Senators and Representative Member Before August Recess and Ask Them to Co-Sponsor the ABLE Act

The Achieving a Better Life Experience Act (ABLE) (S. 313/H.R. 647) would create tax-free savings accounts for individuals with disabilities to cover disability related expenses such as education, housing, transportation, medical and dental expenses, speech and language therapy, community support services and assistive technology.  This account can be held by a person with a disability and not count as an asset for purposes of SSI, SSDI or Medicaid benefits.

Currently, we are asking that you e-mail your Representative and Senators and ask them to co-sponsor this bill. Information at the end of this message will tell you how to find your Congressional Representatives and who is already co-sponsoring (and therefore do not need to be contacted). Congress will begin its August recess this Friday, so please make contact before then.

Sample Letter

My name is (insert your name)_______ from _________ (insert home town) _________.

I would like to ask you to co-sponsor an important bill, the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647). This bipartisan, bicameral legislation was introduced by Sens. Robert Casey, Jr., (D-PA) and Richard Burr (R-NC), and Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX).  

The legislation encourages persons with disabilities to save in order to live an independent and meaningful life while reducing their dependency on public benefits.  This legislation allows for the establishment of tax-exempt financial security accounts for individuals with disabilities to pay certain expenses, including: medical and dental care, education, community based supports, employment training, housing and transportation.  

I hope you will consider co-sponsoring this important legislation for the Down syndrome community.

To see if your Senator has co-sponsored this legislation, go to, key in S. 313 under bill number and click “co-sponsors”.

To see if your House member has co-sponsored the legislation, go to, key in H.R. 647 under bill number and click “co-sponsors”.

To find out the name of your Senator or House of Representative member, go to:

You may also call your member and speak to a staff person who handles disability-related issues.The number at the U.S. Capitol is (202) 224-3121.  Ask for the office of the Member you wish to speak to.

An Ode to the [NDSC] Convention

In addition to DSAGSL staff making the trip to Denver for NDSC‘s Annual Conference, several parents from our area traveled out west. One of them, a second-time conference goer, put her experience in words for our blog this week:

My daughter was diagnosed with Down syndrome in utero, right after they found a massive hole in her heart.  I spent the last few months of my pregnancy reading everything I could find but I was never much one for groups so I stayed quiet on the message boards, never left any comments on the blogs I stumbled across, and was still blissfully Facebook free.  I was also distracted by the fact that several months hence someone was going to slice my child’s chest open – “community” isn’t on the radar when you’re busy studying survival statistics.

I was also a little alarmed by the vast spectrum of people out there – angry, religious, atheist, grieving, perky, happy, sad, you name it.  It was overwhelming and I doubted whether a little chromosome was reason enough to wade into that mess.  It took years before I started blogging myself and then another couple before I finally conceded to the lovely monstrosity that is Facebook.  Along the way I did latch on to a few like-minded moms but I didn’t attend the NDSC convention, the mother of all groups, until last year.  And I – an admitted introvert – was sold.  Hard.  And now I want to sell you:

First, there is a ton of information.  They do an awesome job of offering something for every age range and interest – from babies, to school, to independent living.  There are talks about finances, science and research, computer apps, and pretty much anything else you’d fancy.  Even if you can’t go every year, you should go just once to listen to Dr. Skotko talk about siblings and Libby Kumin on speech.  This isn’t information you can pick up in an internet article or a textbook, this is why and how, at its best.

This year, for example, after a surprising decision to send my girl to kindergarten early, I attended a talk on inclusion by Patti McVay and it was revelatory.  I understood it to be the preferred practice, understood the theory of peer modeling, and have cheered and consoled friends as they wrangled with their schools, but it wasn’t a reality for us yet and I remained a bit fuzzy on the logistics.  I worried about bullies and my girl ending up in the corner, ignored.  But I left that workshop weeping, full of hope, and I am NOT a crier.  This alone was worth the trip.

Second, it’s euphoric.  Just imagine a weekend surrounded by people who get it.  Who won’t accidently let slip the “R” word, who intuitively understand that kids come in all packages, and who only express pity when you tell them about that crazy shuttle ride, not when chatting about your child’s latest ups and, um, downs.  Plus, you can meet your computer friends in real life, turn them real friends, and it becomes much less weird to explain your social circle to the in laws.  And did I mention I’m not a people person?  If you normally like people, it might be even better.

Third, it’s a great opportunity for the kids.  We actually left mine with the grandparents this year because the kids’ camps fill up faster than I can plan, but ignore the hypocrisy.  Yes, inclusion is awesome – the other 362 days of the year. My daughter will learn to live in, navigate, and find happiness in this world just like her typical brother.  But I’m not naive enough to think it will always be easy for her.  I want to offer my daughter a fun weekend where she can relax and compare notes with her peers, complain about her over-protective parents, and cut loose on the dance floor, free of high school prom politics.  (Did I mention there was dancing?  There’s dancing!)  There’s an entirely separate track for self advocates over 15 – a space just for my girl and her friends.

There’s also a sibling track for 6th graders and up.  As great as my two kids are together now, and as open as we try to be about it, I’m also not so naïve as to think my son might not want to touch base with other kids who have to sit in SLP waiting rooms.  He might even want to let off a little steam about his goofy parents or atypical sister, without it turning into A Thing.

Even if classes make you yawn and your kids never complain, last year I was waiting in the lobby for my husband when I saw a teenage boy do what teenage boys do the world over – he walked past a girl dressed to the nines for the dance, did an abrupt about face, walked up and introduced himself.  My husband arrived and we left to the sound of the girl giggling.  Both had Down syndrome.  My heart melted.

I know it can be expensive.  My husband works for an airline, we fly for free, and it’s still expensive.  But after the first year I swore I’d go even if meant three days of top ramen and park benches (happily for my back, we were able to avoid that this year).  And lucky for YOU, next year’s conference is in Indianapolis, a mere 4 hour drive from St. Louis.  If the budget looks daunting, don’t despair:

  1. Skip the meal plan.  We’ve never done it.  Most hotels have mini-fridges now.  Swing by a grocery store and pick up a couple staples before you check in – yogurt, cereal, PB&J, top ramen, whatever floats your boat.
  2. Skip the big award dinner.  We had a pizza party in our room that night instead.  Just as awesome, no crowds, no rubbery convention chicken.  The dance after is always free and there’s no dress code.  You see everything from shorts to prom dresses.
  3. You don’t HAVE to stay in the designated hotel.  If you can find a cheaper hotel nearby, book it.  Someone else will invite you to their room for pizza and nobody will notice or care where you slept.
  4. If you’re still skeptical, come the first year kidless, even spouseless, to check it out before you multiply your costs by a few mouths.  You’ll get the presenter’s power points as part of your fee and can report back.  Some of the presentations are even available by video later.
  5. Split a room – there are always others traveling solo.  FB is great for cost sharing hotels, cabs, etc.

Community, information, and dancing – what’s not to love?  It’s a short drive next year, and who knows?  If you come, I may even invite you over for pizza.

As told by Kate – who wrangles kids, dogs & a job over at Trial Run

Self Advocate Resolution, via National Down Syndrome Congress

A couple members of our staff were able to make it to Denver this past month for the NDSC Annual Conference. The experience was hard to explain: it was awesome, exhilirating, inspiring, thought-provoking, fun, informative – the list goes on. One of the many things we brought back is the Self Advocate Resolution, as put forth by the NDSC and adopted at the conference this year in Denver. We have so much we want to share and put into action from the weekend’s workshops, and this is just one of those things:

Following the Ethan Saylor case (updated July 18, 2013)

September 17, 2013

From the NDSS: “Governor O’Malley of Maryland issued an executive order establishing a commission for effective community inclusion of individuals with intellectual and developmental disabilities in Maryland. This important Commission will be chaired by Dr. Tim Shriver, Chairman and CEO of Special Olympics. NDSS and the National Down Syndrome Congress (NDSC) see this as an important step to ensure what happened to Ethan Saylor never happens to another person from the Down syndrome community, however, we still call on the Governor to open an independent investigation into Saylor’s tragic death.”

Read the joint statement on the NDSS website.

July 21, 2013 – Department of Justice announces investigation into Ethan Saylor’s death

Months after the initial story broke, the Department of Justice has announced they will be investigating Ethan’s death and whether his civil rights were violated in the January 12 incident.

Read the AP report here, and the report from Ethan’s hometown news here.

July 18, 2013 – New details from the scene of Ethan’s death, via the Associated Press

According to a report by the Associated Press (read by DSAGSL via the Huffington Post), a new file release on Monday outlines the statement from Ethan’s caretaker and shedding more light on the case from her perspective. The file, which spans 98 pages, also includes statements from 22 different witnesses of the event. Here is an excerpt from the caretaker’s statement, as told by the AP:

The 18-year-old caretaker, whose name is redacted from the documents, wrote that she had been Saylor’s caretaker for three months before he died.


She said Saylor, known to his family as Ethan, had a history of angry outbursts, including one earlier that night. They had already seen the movie once and were outside the Frederick theater when she asked Saylor if he was ready to go home. Saylor began cursing and punched a storefront window, she told police.


Somewhat frightened, the caretaker called Saylor’s mother, Patti Saylor, of New Market.


“Patti told her to just wait him out and his attitude will change,” an investigator wrote in a follow-up interview report.


The caretaker then spoke by phone with another of Saylor’s caretakers. He advised her to leave Saylor in front of the theater while she got the car, giving him a few minutes alone to calm himself. But by the time she returned, Saylor had gone back into the theater and seated himself. As she walked in, a manager was telling Saylor he had to leave the auditorium.

The report goes on to walk through the events of the night that led to Ethan’s death, with the caretaker adding that she asked to officers again to be patient and wait for Ethan to calm himself before speaking with him, but that before she knew what was happening the struggle between Ethan and the officers ensued.

To read the full story from the Associated Press (via the Huffington Post), click here.

Please continue to contact Governor O’Malley of Maryland to stress the need for an investigation into Ethan’s death. Details on how to contact the Governor’s office are listed here.

June 21, 2013 Update (from the NDSS):
Dear Down Syndrome Advocates,

NDSS and NDSC continue to demand answers from the Frederick County Sheriff’s Department (FCSD) about the death of Ethan Saylor, a member of the Down syndrome community. We feel strongly that Governor O’Malley has the authority, under the Maryland Constitution, to conduct an independent investigation into the tragic death of Ethan. We also have more troubling details about the FCSD pertaining to another incident that resulted in death.

Please take a few minutes to TAKE ACTION to call and/or email Governor O’Malley and tell him that he has the authority to open an investigation into the death of Ethan Saylor.

(Find info on how to contact the governor, click here)

May 17, 2013 Update (from The NDSC):

The NDSC is continuing to advocate for an independent investigation into the death ofEthan Saylor, a 26-year-old man with Down syndrome, who died while being restrained by off duty law enforcement officers. If you’re not familiar with this case, Ethan was attending a movie at a local theater in Frederick County, MD — a place he visited quite often. When he refused to leave the theater after the movie ended, and while his caregiver had gone to get their car, mall security was called, and Ethan was restrained face-down. The medical examiner ruled his death a homicide, but in March, a grand jury failed to indict anyone inEthan’s death.


NDSC’s Governmental Affairs Director, Susan Goodman, recently met again with representatives from the Department of Justice, as well as with Ethan’s mother, Patti Saylor, and other Maryland advocates.

We’d like to encourage you to sign on to a new petition, which asks Maryland’s Attorney General to launch an independent investigation. You can read and sign the online petition here.


We will continue to work with fellow advocates in the Down syndrome community to develop and distribute a best practices training program for law enforcement and other first responders.

May 7, 2013 Update:
Newly released details from Saylor’s autopsy report have come to light in the past week. According to the medical examiner, there was also a fracture to cartilage in Saylor’s throat, something experts say is an unusual injury to see in a choking case. A forensic pathologist not familiar with case says the injury happens from some kind of force and added that bruising from that fracture was present, making it likely Saylor still had a heartbeat when the injury occured. However, a complete investigation remains the best way to confirm how and when this particular inury, and others, happened in the timeline of events leading to Saylor’s death. You can help push the FBI and Department of Justice to investigate by taking a few minutes of your time to sign the petitions happening at and

In addition to the above updates, NDSS and NDSC recently released an action update outlining efforts from their end – read it here.

As of April 26, 2013
In the past month, you may have heard about the incident that happened in Maryland in January of this year. Ethan Saylor, a man with Down syndrome, had finished viewing a movie at a local theatre wanted to stay and watch the movie again. At the time, his aide had gone to the car and wasn’t there to pay for another ticket. Off-duty officers were called into the situation and restrained Saylor, who sadly passed away in the process.

Although an autopsy report determined Saylor’s death to be a homicide, there have been no charges filed per a decision from a grand jury. The medical examiner cited that Down syndrome, physique and heart disease made Saylor more susceptible to sudden death in stressful conditions that would compromise his breathing.

Advocates across the country are left wondering: Are reports putting Saylor’s death on the fact that he had Down syndrome and not because of the actions of the officers? Petitions and campaigns calling for a private investigation from the Department of Justice have been circulating, and gaining national attention as of late. Advocates, including the DSAGSL, have been taking to Twitter to bring the story to light, using #justiceforEthan to connect their words.

Ethan Saylor

We’ve compiled some of the most comprehensive coverage of the case, from local and national advocates to the Associated Press and Washington Post, and provided links to the current petitions calling for a private investigation in the links below. To see some of the Twitter chatter around #justiceforEthan, see our Storify coverage here.  We also ask you to please take a few minutes of your time to sign the petitions happening at and

Our hearts and thoughts are with the Saylor family during this time, and we will continue to stay up to date with Ethan’s story.

Media coverage of Saylor case:
NDSS & NDSC update 4/23
Washington Post (opinion piece)
Washington Post (as reported by the AP)
Huffington Post
NY Times (opinion piece)

A day in the life of Lizzie

Introducing Lizzie! Lizzie is a local self-advocate and a volunteer in our office every Thursday morning. Take a read to find out more about Lizzie’s other job outside the DSAGSL office in this exclusive interview.

1. Where do you work, Lizzie?

I work at Tillman Elementary School in Kirkwood during the school hours. I got my job from Chartwells. I had to fill out paper work to apply. I had to do an interview. My boss, Terri called me after the interview to tell me I got the job. I was very excited. I work in the cafeteria at the salad bar. My favorite part is the salad bar. I prep salad and sometimes cheese and sometimes bean salad, carrots, broccoli, celery, green and red peppers, fruit, and dressing. Then I do the snack cart for my boss. I put chips on it and fruit roll- ups and fruit snacks. I also set up the tables. After lunch, I sweep and clean the kitchen. I love working at Tillman elementary. I’ve worked there for five and a half years. I’ve made really cool friends.

2. What would be your perfect salad?

The perfect salad has lettuce, cheese or veggies, cucumbers, tomatoes. You can have dressing on the salad or you can put it on the side. I prefer dressing on the side.

3.  What other things do you do?

When some people don’t have a job, they don’t have any money or homes. Sometimes they call us to do can good drives. I help out with this.

4. What is your advice for others looking for jobs?

It’s hard to look for jobs. You can go to the internet to find jobs to get more information and interviews.

Ask Megan – Tour of St. Louis Life Part I

This week, Megan gives us a look into her life at St. Louis Life. She shows us a few of the activities she participates in, and gives us a tour of her apartment. St. Louis Life is residential program for young adults with developmental disabilities. Tune in next week for Part II when Megan gives us a complete tour of the facility and we learn why Megan loves calling it her home.