Monday, October 31, 2011

New post on Zeh Lezeh (For One Another)

From time to time, I am a guest blogger for the Ruderman Family Foundation. Here is my entry on today's blog.
Guest Blogger: Jo Ann Simons, CEO, Cardinal Cushing Centers

I’ve been asking myself this question each time I read about cloud computing in the pages of the business section and have no idea what it means. But I knew I needed to solve the mystery when I was asked to participate this fall in a conference at the Coleman Institute at the University of Colorado. With the title “Implications of Cloud Computing for Residential Support and Service for People with Disabilities,” the gathering will bring together service providers, consumers and advocates, technologists, law and policy specialists.

What have I learned? Enough to know that the cloud is going to be a game-changer – indeed a universe-changer -- for people with disabilities. If we think the IPad was revolutionary (and I do believe it was), we’ve seen nothing yet.

Imagine, the cloud will mean that each person with a disability will have a unique identifier (stored in the cloud) so that every time the person accesses their mobile phone, PDA, notebook, laptop, netbook, computer or any device with a screen (Metro card ticket machines, ATM machines, etc), the interface will look the same because the user will be identified and the font, size, colors and layout will look the way that works best for them.

A visually impaired person will see the size and color that best suits them and the volume will be set just for them. A person with a cognitive disability will see the same screen layout each time they access technology.

And the cloud is coming closer every day. There’s already an international initiative, the Global Public Inclusive Infrastructure (GPII) that’s planning to inform the public and work with government regulators, to shape cloud policy. For example, they’re already shaping how people with disabilities will access all forms of technology in a way that will make sense to each and every user.

All this is just the beginning. As budget pressures continue to mount and in-person supports may be cut back, we must all find less labor-intensive ways to provide services. The cloud will go a long way in helping people with disabilities become more independent as they stay connected to what’s an increasingly virtual support system.

-- Jo Ann Simons

Tuesday, October 25, 2011

Brian Skotko Remembers Allen Crocker

I miss him so much already. While October 23, 2011, marked the end of Dr. Allen Crocker’s profound life, it triggered the official beginning of his timeless legacy. He was a lover and a healer, a poet and a dreamer, a fighter and a defender. He was our buddy, whether we knew him personally or not.

When I arrived in Boston for medical school, I was determined to know him. I had heard him speak at national conferences before, but this was my chance to really meet the legend in our Down syndrome movement. After my parents had dropped me off—and before all of my bags were unpacked—I walked to his office at Children’s Hospital Boston, but what I didn’t realize was that Allen would quickly become my mentor, my colleague, and, most preciously, my friend.

He taught me you get when you give. No sooner had I begun medical school, Allen was driving me to Board meetings for the Massachusetts Down Syndrome Congress. Me, a Board member? Allen showed me that while my classes at Harvard Medical School were important, richer lessons were to be found in this non-profit, parent-driven organization. For the past ten years, I have learned more from the families of the MDSC than I will ever be able to repay. As I sat by his bedside during some of his final days, Allen still asked me how the “boys and girls of the MDSC” were doing. He never believed that doctors should be stuck in hospitals.

He taught me to be unsatisfied. Our friends with Down syndrome deserved to have their mysteries unlocked, so Allen would push me to find the answers. I would arrive at his office regularly at 7:30 a.m., prompt, to share my far-flung ideas about projects that I was considering. Allen told me that I was not crazy. In fact, I was not crazy enough. He prompted my research trip to Spain because he knew—before I did—that the journey would be formative. Allen remained my research mentor since that first project, and during my last visit to his bedside, I shared with him three papers that were six years in the making. He helped shape this project, and I told him that I would keep asking questions.

He reminded me to believe in myself. Life cannot be scripted. Allen knew that, and I think, preferred that. But, sometimes, I wish I could have avoided certain dramatic scenes in my own life. I remember that after sharing one tough day with Allen, he told me that I must meet him at a local Dunkin Donuts. Right there, on napkins, he sketched out for me his view of the situation. And, then, he looked me in the eye and told me that I was special. I needed that, no matter how much validation I might have found elsewhere. Allen taught me that our most graceful moments in life could be found during the most trying times.

He told me to seek unexpected cheer. Every so often, Allen would meet with me to review my career plans. I would write down some goals that I would hope to accomplish within the next year or so. Yet, after we got through those items quickly, he would ask me about more important life goals. He seemed more pleased when I told him that I was trying to learn Spanish, that I liked to make cold soups, and that my wife, Carrie, and I were taking dance lessons. And, he was right: my academic accomplishments will always pale in comparison to these private goals. Carrie and I still remember with great fondness when Allen, unannounced and unexpectedly, took to the podium at our wedding and reminded us all of the importance of “good cheer.”

And so, today, I have the remarkable privilege of working as a physician in the Down Syndrome Program at Children’s Hospital Boston, a program and a place where Allen shared his wisdom and his heart for decades. And, it is already here on a weekly basis that I see his legacy at work. They may not all know it, but children with Down syndrome have more opportunities today because of Allen. Parents have fewer battles to fight because Allen tore down walls. Grandparents play leading roles because Allen understood them to be central figures in family life. Brothers and sisters become advocates because Allen established precedents.

He would be the first to remind us that we all need to “carry on.” I will. We must. And, he will be right there with us.


Monday, October 3, 2011

Family Weekend

Our first ever Family Weekend was beyond expectation. The weather cooperated, the food was terrific as always ( who will forget the Italian block party on Friday night where we had dinner under the twinkling lights with music in the background), to the desert reception where the beta version of our new web site was revealed and the Transition workshop topped off our open houses, an assembly and demonstrations.

Saturday, the Shut up Sisters had us laughing until our stomachs hurt, the Harvest Festival delivered it's usual day of fun and food, our flag football and cheering teams had their qualifying event and the day was topped off by the student and alumni dance.

To end the weekend with a Confirmation Mass was a blessing to our community.

Many pictures were taken, here are the ones from my camera