Epilepsy Foundation

Epilepsy Advocates Stand Together for ADA Rights

The Stevens family--who garnered national media attention when their son's seizure dog was banned from accompanying him to school--testified tonight at a meeting of the Fairfax County school board. The board recently decided to allow Andrew to bring his dog to school for a 2-week trial period, but he must be accompanied by his father to make sure he is able to properly control the dog. The family was not confrontational or acrimonious, rather they came to stand up for their rights--and the rights of all Americans living with disabilities--under the Americans with Disabilities Act. 

 

Mission accomplished, for now.

 

Local D.C. media crews trailed the family, putting a spotlight on Andrew, a 12-year-old boy with a severe form of epilepsy, Lennox-Gastaut syndrome, and his faithful, trained companion Alaya, a 5-year-old German Shepherd. Andrew appeared delighted while Alaya appeared nonplussed--despite the lights, cameras and literally nonstop action. Schools are busy places after hours, it turns out. Musicians filed past lugging encased instruments while several basketball teams played on the indoor courts.

 

Then businesslike board members filed into the auditorium to hear about Fairfax County school budgets (bad news, good news). It's hard to stay rapt during a budget presentation and some battle fatigue was showing, however when Andrew's father, Army Sgt. Angelo Stevens, took to the podium with his son and Alaya by his side, all eyes were locked on him.

 

Angelo calmly and persuasively presented his case and reflected on his son's tenacity and ability to pick himself up and move on despite tremendous setbacks with medications and seizures. Angelo told the hushed crowd in the school auditorium that Andrew was his hero and, he added, "Now he's yours." 

 

Epilepsy Foundation national office staff was also on hand, along with the Epilepsy Foundation of Virginia's Dana Douglas, who has provided invaluable guidance and support to the family throughout their ordeal. Epilepsy Foundation legal counsel Patricia Dukes provided testimony on behalf of the Foundation. She clarified the role of service dogs, which is to stay with a person throughout a seizure to protect against injury and to also alert others so they can help the person having the seizure. She emphasized that the ADA provides protections that allow people with disabilities to enjoy full inclusion in society, including educational settings. 

 

Patricia said, "We praise the school for taking the initial step of allowing Andrew and his dog into the schools, and we understand their concerns, however the law is clear that the school system cannot deny Andrew's service dog."

 

The story was aired on at least one local TV station tonight. I have more quotes from tonight that I will add in subsequent posts.

 

I can tell you with confidence, epilepsy's cause was represented tonight with eloquence, heartfelt and inspiring testimonials and one family's unwavering commitment to securing rights for their son and--more importantly--to making life easier for anyone else living with a disability who wants to have a service dog. The family has also established The Andrew Gordon Stevens Foundation to help other military families obtain service dogs. 

 

Tonight was a great success. We raised awareness, educated the public about epilepsy and showed that with advocacy it is possible to make your voice heard. The Epilepsy Foundation is providing legal support for the Stevens family through its Jeanne A. Carpenter Epilepsy Legal Defense Fund.

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Comment by mroux on August 2, 2011 at 4:13am
I was brought up to pretend and hide behind the veil of being "normal" whatever that means. I got tired b/c I had accomplished a lot for someone with epilepsy. When they say, I cannot, I proceed. When they said, I cannot run b/c I am dehydrating, I did and to 18 miles. Yes, I have limitations, but I also educate. And my brain dysfunction sometimes comes across as someone who has jotty thoughts, but I learned to cope with it. It's great to know that there are so many people out there, and a voice is finally being heard. I dont' feel so along any more.
Comment by Lisa Boylan on May 3, 2011 at 12:34pm

Comment by tim on February 14, 2011 at 2:01pm

         i refuse to believe in any ada.

               gotta walk around today with teeth falling out due to how first responders did me n as a drunken fool durring seizures at an er.prison i got instead of treatment.although charges were dropped,hospital willnot even grant a dentist for what was damaged the most.

                    better off living in another country

Comment by dmom3005 on January 21, 2011 at 3:02pm

hopefully they will allow things to go back to normal.  After the two weeks.  But if not then they

need to inform the school system, that they will have to pay dad to come to school.


Donna

Comment by Mary Lou Connolly on January 14, 2011 at 3:05pm

Glad to see EFA is so involved and supportive!

Comment by Lisa Boylan on January 10, 2011 at 4:27pm

Donald--thanks so much for your insights and support! That means a lot. I know you've been following this closely and I appreciate your input--everyone's input, as it happens. I know we all want the best outcome from this case and the absolute best for Andrew Stevens and his family.

Comment by Lisa Boylan on January 10, 2011 at 2:02pm

Jon--thanks so much for writing. I regret that you feel the Epilepsy Foundation only recently got involved with the Stevens family. We’ve actually been in contact with them for several weeks and we are delighted this media coverage may affect change--both locally and nationally.

As I’m sure you will agree, the Stevens family’s advocacy is all about showing what a trained seizure dog can achieve. Their example will, we hope, encourage anyone who has experienced discrimination under the ADA to come forward and take a stand.

Also, the example of their trained seizure dog highlights the need for families interested in service dogs to do the necessary research and contact reputable organizations in order to get properly trained service dogs.

We are so fortunate to have families like the Stevens in our network; they are wonderful advocates and passionate about protecting their son’s rights.  

I want you to know it was never our intention to take any credit away from the Stevens family. In addition, it is our sincere hope that you—as a trainer of these service dogs—will work with us to educate the public about the benefits of seizure response dogs. 

 

Comment by Stephen Harris-Leach on January 7, 2011 at 10:03pm

still from my last post on the other story that Lisa post "Why did they get away with it so easy, i thought they get a fine or prision...it just makes me MAD!!!

Comment by Lisa Boylan on January 7, 2011 at 3:03pm

Hi--Just got your second comment. I know, it's hard for Angelo to be there since he works FT for the Army. I just hope that by example--excellent example--Andrew and Alaya will show they can manuever themselves in school. They did great last night and it could not have been more chaotic.

Comment by Lisa Boylan on January 7, 2011 at 3:01pm

Hi Donald--thanks for your comment. In this case, her behavior alerts others. She stands up and then licks his face if he is having a seizure. She remains with Andrew and has a magnet on her collar that swipes against his VNS to lessen or stop his seizures.

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