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BY Valerie

Families and the Future of Disabilities

In April, I wrote a blog for Friendship Circle entitled, Hope for the future: Our Children, The Siblings.

This blog reflected on the role siblings of people with disabilities play and their potential impact in our communities.  I found great joy in writing this as I wasn’t simply typing words on a keyboard for a deadline, but was truly embracing the idea that these siblings would change the world for our loved ones with different abilities.

So imagine my excitement when I bumped into a brother of a young man with Down syndrome on-line from Oak Park, Illinois, who along with his three brothers is changing a community and the potential for young adults with disabilities there.

It is no secret that Illinois, from a budget perspective, is struggling.  As far back as I can remember, Illinois had insufficient funds to meet the needs of their disabled population and were already cutting back services long before the rest of the states followed suit.

Out of this unfortunate reality, Opportunity Knocks was birthed and the Carmody Family’s journey began in making a difference for their brother John, who has Down syndrome, and other young adults who were facing limited opportunities once graduating from high school.

One of the Carmody brothers, Mike, works in the special education departments at Oak Park and River Forest High Schools and knew what was coming down the pipe for his brother John, as he got closer to graduating. In Illinois, you cannot utilize public school resources after age 22 and options outside of the school were limited or nonexistent.

Now mind you, no one understands more than I the importance of having your voice heard by government leaders and politicians; I did this for several years and it works.  But, as I often tell my readers, we cannot stop there.  As the Carmody’s own state government began to fail in their support of John and others like him, Mike and his brothers refused to give up on finding solutions of their own.

Where did they start?  With their greatest asset – their community.  The Carmody boys, as well as their father’s family, were all born and raised in Oak Park. They had roots.  John was very much a part of the community – with many friendships and ties to the people.  According to Phil Carmody, who I interviewed for this post, Oak Park is a tight knit community and is very generous and supportive of organizations like Opportunity Knocks (OK).

So in February 2010, OK opened their doors after raising the necessary funds to get a building and skeleton staff in place. Today, a little over a year later, OK  is making inroads into its community and providing great opportunities for young adults who may have been stuck in front of a television if not for the programs OK provides throughout the week.

Phil also stressed that these young people are not sitting on the sidelines watching things happen – they are Opportunity Knocks – 100%.  They are creating OK’s future and involved in all planning.  They are participating in recreational activities, forming meaningful relationships and have a sense of autonomy over their lives. My goodness, isn’t that what we all want?

The planning and insight this group of brothers has brought to the success of OK is so different from what was created several decades ago by industry experts.  The Carmody brothers know first hand what John’s needs are and what he is missing most in his life, something no government report will ever tell us.  They also understand that in order to be successful in life – our loved ones need to actually participate in the process, not just sit on the sidelines and watch.

This simple idea of being contributors, instead of bystanders, in finding solutions to a meaningful life, is what I  feel differentiates organizations like OK from the others.  It took siblings, with their unique perspective into the lives of their brothers and sisters, to show us what was missing from all our hard work of the past – our loved ones collaboration in planning their future.

Oak Park and its surrounding communities are supporting OK with countless resources and welcoming the Warriors (a wonderful name for the young people who utilize this organization) into their community.  In exchange, the Warriors are showing this community what they need.  Genius!

As Phil told me, when the youngest of the Carmody boys was born with Down syndrome, it changed not only his family, but his neighbors, his block and their friend’s lives.  And what they have received through John cannot be found just anywhere – it’s special.  So in the end, our communities need our special family members as much as we need our communities.

Phil and I both talked a little while longer about how much we appreciated having a Warrior in our lives, and as Phil said in his final words, “If you’re lucky enough to have seen it, well, you’re lucky.”  That pretty much sums it up.

How about we let the rest of the world see it too?


Written on June 22, 2011 by:

Valerie represented tens of thousands of families of children with disabilities in Indiana as the Chairperson of the Interagency Coordinating Council for Infants and Toddler under three Indiana Governors from 2001-2006 . This experience, along with raising a young daughter with Down syndrome, has provided her with a unique view and understanding of the issues facing the disability community. You can read her blog at

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