Every year, we have the same debate: Awareness vs Acceptance. There is a firmly held belief within some corners of the Down syndrome community that it is way past time for awareness.  While I understand where they’re coming from, and occasionally agree with some of the reactions to specific stories, I think it’s a more complicated issue than we like to admit.

I came across an article today in the Shreveport Times that explained: 

Originally posted on 3/30/14 by Stephanie Holland

For those of us on The Road, WDSD was...  hectic to say the least.   Hectic in a GOOD way!  I didn't want the month to end without talking a little bit about the UN panel discussion on health.  

If you missed the presentation, you can watch it via download.  It's four hours of great speakers talking about - as you would expect, health care and access around the world.  

I was personally excited to see that one of Josh's doctors from when we lived in Maryland was speaking.  Dr. George Capone from the Kennedy Kreiger Institute Down syndrome Clinic in Baltimore, MD is one of my personal heroes.


He talked about guidelines that exist for newborns, and for children.   These guidelines are published by the American Academy of Pediatrics.  Dr. Capone mentioned that they were developed in 1994 and revised in 2001 and 2011.  They apparently try to update them regularly.


The only thing is - they stop at age 21.

Stephanie Holland - Walkersvillemom

The latest song from one of my favorite bands reminds me of #JusticeForEthan.  

"Hey, hey, just obey"

That's the cult of compliance in a nutshell.


"We won't give up, we won't go away. 
'Cause we're not about to live in this mass delusion."

This week, Ethan's mom, Patti Saylor, held a press conference in Frederick, Maryland where she came out in support of Sheriff Chuck Jenkin's opponent - Karl Bickel. 

Not only has she, and many others, made great strides toward the goal of meaningful training for law enforcement and other public servants, now she's working on systemic CHANGE in leadership.

Patti won't give up, and neither will we!

Like many services that families of people with disabilities depend on, regulations regarding background checks are set by the individual states.  Unsuspecting families may be told that all workers must pass a "background check" but depending on where you live, that could mean a host of different things.  The figure below from a recent government study shows the variety of state policies.

These questions sound absurd and they would never be asked by strangers, yet parents of adult children who have intellectual or developmental disabilities (ID/DD) get asked similar questions all the time.   I can’t tell you how many times someone has asked me “Is your son high functioning?”   The question is, to me, irrational.  First of all what IS high functioning?  There is no clinical definition.  As a social construct, most people use it to indicate a higher IQ than what is typical for a certain population.   If we accept the premise of high functioning then think about what that says about the rest of the population in contrast.  

Originally posted 1/31/14 - Updated 7/24/14 by Stephanie Holland

*Our first radio show was a 2 hour conversation about "Guardianship."

I know not everyone can listen to two hours of interview - so if you want to hear just the intro's for the team - here they are!  

The Road is proud to share a guest post by Susan Goodman Esq., National Down Syndrome Congress, Director, Governmental Affairs. This is the first of our series on the National Down Syndrome Organizations. Follow up with the NDSC here.

This is my first written communication since the wonderful NDSC conference.  What can I say?  After a lifetime of advocacy (and conferences) I’m still wowed about what an amazing conference this is.  I was also wowed by one particular family that I will tell you about and illustrates what we have and have not done, what my goals are and what we can all accomplish together.

A husband and wife who live in New Jersey approached me after my workshop on federal policy and what it means for your child.  They had a 16 year old son and this was their first conference. They said they knew virtually nothing about services beyond education.  They were amazed at my presentation and, it seemed to me, what they did not know.  We talked for a while and I told them to e-mail me and I would find out as much as I could about services in their area.

My goal is to keep this family and all families informed on important federal policy and legislation that affects their child’s entire future and to give families the information they need to advocate for themselves.  To enable them to form relationships with groups that are advocating for services that will make a difference in what kind of education and training our children have, where they live, who they live with, what kind of job they have, what there recreational opportunities will be – anything that will allow them to have the same opportunities as non-disabled individuals.  

But I would also say -- Advocacy is a long haul.  It’s a lifetime commitment.  It isn’t one “quick fix law” that can change everything.  It is input we have on laws that are being written, implementation of those laws, changing attitudes about and acceptance of all people as individuals.  It is, as I say in my presentation, a lifelong journey.  Unfortunately, in the present political climate we have to fight to keep what services we have.  We are faced with constant threats of cuts to Medicaid (which pays for long-term support services), our children’s life line as adults, Supplemental Security Income (SSI), special education services, housing, transportation and the list goes on.