Category Archives: Disability Services

The Yin and Yang of Disability Services

The Yin and Yang of Disability Services on The Road We've Shared
Usually the private and public sector operate on extremely different levels with different agendas.  Private companies are guided by the bottom line (for profit) or their mission and board (non-profit). Government entities function within a larger bureaucracy, bound by rules and red tape.
We can debate which one is “better,” but the truth is, when it comes to providing the best care for our loved ones, we need all the help we can get.

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O for Organizing  – The Arc US

by Kristen McKiernan of The Arc

O for Organizing  - The Arc US

The Arc is the largest organization in the country advocating for and serving people with intellectual and developmental disabilities (I/DD), including Down syndrome. We have a rich 60 year history of advocacy and grassroots organizing that continues today through our nearly 700 state and local chapters nationwide. Our mission has always been to promote and protect the human rights of people with I/DD and actively support their full inclusion and participation in the community throughout their lifetimes.

At the national headquarters in Washington, DC, we currently maintain 9 national programs that are actively changing lives in our community. We also host annual events that bring together families, self-advocates, and professionals to share ideas, inspiration and resources, and we work to support our chapters to advocate at the federal and state level and provide services to their communities at the local level.

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Justice for All

By: Eliana Peck and Stephanie Holland 

Justice on The Road We've SharedJustice is something of a hot topic lately.  News reports of another person with a disability being mistreated or lost in the system seem to appear daily. One organization that focuses solely on finding justice for our loved ones is the National Center on Criminal Justice & Disability (NCCJD).

Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers. 
~ David Perry – The Atlantic

Why do police keep seeing a person’s disability as a provocation? Cops keep wrongfully killing the intellectually or psychiatrically impaired. ~  Harold Braswell – Washington Post

We asked the The Arc NCCJD to tell us a bit about what they do, and how it relates to a cause near and dear to us here on The Road – #JusticeForEthan.  Our thanks goes to Eliana Peck and the rest of the staff at NCCJD for what they do and for taking the time to write this post!

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C is for connected Ds-Connected that is!

By: Stephanie Holland  ***Update by Sujata Bardhan, Ph.D., Scientific Program Manager, DS-Connect Registry Coordinator
C - A to Z Blogging Challenge - The Road We've SharedOne great example of how the community comes together for the greater good is the collaboration that has happened to create the Down syndrome registry.  The funding comes from NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), but ongoing input comes from parents, families, and representatives from every corner of the Ds world.

The Down syndrome Consortium members

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Tailored to special body shapes and needs

In business there is a mantra among entrepreneurs: “Find a need and fill it.” 


Karen Bowersox didn’t realize there was such a need as special clothes for people with Down syndrome, or even know that she was an entrepreneur until she tried to find clothes for her granddaughter, Maggie. After a nudge from her daughter, she hired a designer and they began their journey of supplying clothes for people with Down syndrome via Downs Designs.

The Downs Designs mission includes the goal of providing, Persons
with Down syndrome proper fitting clothes made for their unique body shapes
. They also aim for comfort, ease of use, and no tags. 
Marcus’ Downs Design jeans arrived in May just before our trip to Denver for the Global Down Syndrome Foundation model auditions. We used the Try on Service option and HOLY COW Karen and her team made it easy. (Check out my full Downs Designs review here – and also fun notes about the audition.) 


With summer’s arrival I asked Marcus, “Would you like a pair of denim
shorts too?”


 So, continuing the keep it easy methodology, I emailed Karen and said simply, “We’d like to order a pair of shorts.” 
She replied to measure the inseam of Marcus’ favorite shorts for length, then she’d make it happen. Even I could do that. So I did.
And about a week later ->

The options include women’s, men’s, kids, teens, pants, shorts, capris and more.  The pants are zipperless and the taioring keeps in mind the unique body shapes of those with Down syndrome. In short, I recommend checking them out.

 - Mardra Grown Ups and Downs

down syndrome conference + ship full of fun = buddy cruise inc.

*Today’s post is by our Guest, Pamela Arnoldson


HI! My name is Pamela Arnoldson, I am a director for Buddy Cruise Inc. I was asked by a member of your community, Mardra, to compose a blog this month. I am honored and I have to admit a bit nervous…I’ve never blogged! But I will give it my best shot as this month’s theme is about Down
syndrome & vacations two things I am passionate about
. Which is actually how Buddy Cruise came to be. My son Joseph has Down syndrome and is the inspiration for this unique non-profit that hosts its annual conference on board a cruise ship!

As many of you may know it is often hard for families to find a
vacation scenario to meet all family member’s interests and needs. A Buddy Cruise does just that. There is something for all ages AND abilities! 

When you first step foot on a cruise ship you are given a guide to that day’s activities.

Then, each evening you will receive one that details the events
of the following day.  The cruiseline plans days and nights full of fun and excitement. On a Buddy Cruise you can take advantage of all the ship has to offer PLUS there is an entire schedule of interactive workshops, events and activities exclusively designed for our attendees!

My son really loved an excursion we did with our group to interact
with dolphins. He also LOVES to dance… And there is no shortage of music! Between all that the ship has planned and all that a Buddy Cruise offers…you will not have a dull moment!

I’m sure that many of you over the years have taken part
in, helped plan or organize a local Buddy Walk. At our event we host the
BuddyWalk at Sea! It is held above the pool deck and has absolutely breathtaking 360° views of the ocean. It is an awareness walk and it is a wonderful feeling to have guests – non Buddy Cruisers, come up and walk with us, tell us their story of the “kid down the street” or their “Uncle” or “Niece” with Down syndrome. Last year there was even a crowd that formed along the track to cheer us on with each lap. 

Its not just the BuddyWalk that generates such excitement…it’s the group itself. We have received many emails form passengers who were onboard during a Buddy Cruise who have said their life is better after spending it with our families. Several have even started reserving their yearly vacations with Buddy Cruise just to be a part of the joy. 
Thank you for this opportunity and I hope to meet each of you on board one day soon; not just for a vacation…for a life changing  experience.

 I’ve asked a few of the parents of adult children with  Down syndrome to share their thoughts on how a Buddy Cruise vacation has touched
  their lives.  For more  testimonials and info on our next event visit 

“Buddy Cruise is an AWESOME experience that my son and I
look forward to all year long! It provides a wonderful setting and opportunity to connect with families in similar situations.”
– Dawn and Myron Sawyer

“Jason, Yaniv and Raymond (all in their 30’s) are so excited, looking forward to the Buddy Cruise in October! I think Yaniv is already packed! 
They talk a lot about which activities they are going to enjoy the most
  (I think the Karaoke nights win out each time!). They love that I leave them to their own devices to make their own decisions about where to go on the ship.  They feel very independent and grown up (but totally safe). 
That’s why this Cruise is so perfect for our young adults! 
I can relax knowing they can be off around the ship – having good safe
fun.  I am nearby if they need me but it’s so nice that they usually DON’T need me very much at all!  So I can have some fun of my own!!
- Emily Perl Kingsley

“Going on the Buddy Cruise with a group of like-minded parents of children with DS is a total blast–both for my now 21 year old son
  and me!  He has a great time with the kids his own age and I get to visit with other parents and their children. He can be himself and we’ve found that he is totally accepted by the other guests on the ship.  We make lots
of friend and we get lots of smiles! There are always fun activities to
participate in on the ship and off. What a blessing! 
We love it! We sailed on the first Buddy Cruise on 2008 and are eagerly
anticipating our 7th Buddy Cruise this October!!
 -  Alan Otto

“My son Mike, who has Down Syndrome & autistic behaviors, and is now 24 years old.  We first heard about Buddy Cruise about 5 years ago & decided to try it – we got hooked.  He absolutely loves it!  He is very shy, but  comes out of his shell during these cruises.  The people are so warm and caring & he picks up on it and connects – and has so much fun. 
The BC workshop “Down Right Funny” gets him out of his seat & telling
a joke into a mic on a stage! Never thought I would see that happen. 
The ice cream social and dances are just a couple of the social
  activities he loves.  There are workshops to choose from that are informative & fun. Buddy Cruise 2014 will be our 5th year on the cruise. 
It has become an important part of our lives and we look forward this
year to seeing old friends and to meet new ones!”
 -  Sandra Gifford

“We think one of the neat things about the Buddy Cruise is that other people on the cruise ship get to see our adult children and their  families sharing time and having fun together, acting appropriately -  the rest of the ship is a captive audience of thousands who have the opportunity to view Down syndrome in a positive light!”
 - Mike and Nancy Moody

About the Buddy Cruise… from a cruiser

This post is supplied by written by  HOLLY CAULFIELD a Cruiser from Buddy Cruises

A special vacation at sea


Shortly after I retired from 30 years as a
special education teacher in the public school system in 2007, I heard about the
Buddy Cruise. I was at loose ends looking for something to keep me busy and involved with the special needs community that had been a part of my life for so long.  I was on the inaugural cruise in 2008 and have been onboard 5 of the 6 sailings to date (and have my cabin booked for cruise number seven, BC 2014)!

So what keeps me coming back?
I could go on and on about the phenomenal ships and crews, the delicious food and the amazing ports of call but it’s more than that.  It’s the families and the children especially the adults with Down syndrome that is the draw for me. 
When I started teaching in the 70s we still had state institutions, families were still being told not to take their children home from the hospital.  The winds of change were blowing but expectations were still low or nonexistent for individuals with Down syndrome. 

Listening to self-advocates share their stories, their trials and successes inspires me, making me a better person and more understanding professional.  Every minute of every day on board my friends with DS are shattering myths and raising the bar.  Whether surfing the flow rider, climbing the rock wall or singing Karaoke they are proving they are just like everybody else.   And no, not all of us will climb that rock wall, myself included, but we will face challenges and grow stronger as a result. 

I’m reminded of one young man who, on board after seeing a video  modeling app on self care  that was presented in a workshop, went back to his cabin and initiated and independently took a shower for the first time in his life (he was in his early 20s).

An inclusive cruise gives us all a wonderful chance to spend a week living and playing together 24/7 sharing and learning from each other.  It gives all of us a chance to experience new things, face new challenges and make friendships and memories that will last a lifetime. Take it from me there are so many pluses to a vacation at sea!

More Choices – Special Olympics


If you’ve been following our recent posts about sheltered workshops and jobs you’ll know that the stars have aligned in such a way that all three of the team members here actually agree on something – that the bottom line when it comes to what we want for our children and community is MORE CHOICES.  
Tweet: When it comes to what we want for our children & community is MORE CHOICES. #DsRoad

We may have different visions of how that plays out, but on this basic premise we agree: when the public at large makes unilateral decisions based on theory, there is considerable potential to limit individual choices that should be made based on need and experience.
The other day I posted on my personal blog about the recent Special Olympics competition and the various schools of thought surrounding these large, mostly segregated sporting  events.  My point there, and here, is that we need to continue to support all services and supports, regardless of the “inclusion theory” that attempts to shame us into having a different opinion.  

There are so many ways in which personal choice is affected in situations that involve decisions to use services that are designed specifically for children and adults with intellectual / developmental disabilities.  It is a very personal choice and one that (I dare say) most parents don’t take lightly.  I know that I have struggled with this ever since my son was born.  The decision to fight for what amounted to forced inclusion in school, whether to use respite care providers rather than general daycare, segregated overnight / summer camps, and yes, Special Olympics were each cause for heated debates with myself (as a single parent).  

In later years, Josh made his own preferences clear.  We tried a segregated overnight camp when he was around 20 years old.  When I asked if he had fun he said “Yes!”  When I asked if he wanted to go back the next summer he said, “Next time I want to go with the regular kids.”  It’s heartbreaking for me to think my son has an ounce of prejudice in him, but in this case, I believe what he was trying to communicate was not really discrimination against his peers but a realization that it was a “special” camp.  He had a similar reaction to Special Olympics.  Even though he enjoyed the activity (soccer) and that he was participating with one of his friends, he didn’t like that all the other athletes had trouble communicating or understanding him.  

He didn’t feel comfortable.  That is what drives my decision not to participate in some segregated activities – not my personal feelings about the theory of inclusion.  I know many families who love and enjoy their experiences with Special Olympics, and depend on the availability of ‘sheltered’ work experiences for their loved ones.  I would NEVER even think of passing judgment on the choices they make for their family.  All I have to do is browse Facebook and Twitter to see the smiles of adults that I’ve come to love (and total strangers) to understand and appreciate the benefits of programs designed for our children.  

Special Olympics Logo

WWE and Special Olympics

All that being said – if Josh knew that there was a chance he’d get to meet a WWE superstar – or Stephanie McMahon at a competition, I think he might get over his discomfort!  Ha ha.

Share your Thoughts

So, I’ve set up a poll to give everyone a chance to anonymously give their opinion on Special Olympics.  I’d also love to hear your thoughts on our campaign for MORE CHOICES in general.   Please share, comment, and post your pictures!  All opinions, experiences, and perspectives are valued here on The Road!

Remembering Willowbrook

By Stephanie Holland 
A recent article, Forgetting not an option: Horrors at Willowbrook State School remembered at annual CSI lecture caught my eye for two reasons:

  1. It brought back memories from when I first heard about the beginnings of deinstitutionalization, and
  2. I’ve recently been writing about how I see the similarities between deinstitutionalization and the affect that the Rhode Island decision will have on sheltered workshops.

I feel physically ill

I first heard the name Willobrook as a graduate student in the Disability Studies program at Syracuse University.  During a course taught by Steven J. Taylor, we looked at disability in different media.  It was a tremendous course, taught by a very skilled professor, researcher, and community advocate.   Thinking back on it, I remember my own poor performance as a student.  It was one of my worst.  Watching this video makes the emotional and physical reactions I had to the content come rushing back.  I’m completely aware of WHY I couldn’t bring my A game to this course.  (Trigger warning: This video is painful to watch for anyone, but parents of children with an intellectual disability will find it almost unbearable.)

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