The Health of People with Disabilities

I have long been aware of the health disparities that exist for people with disabilities ever since the 2001 literature reviews done by Yale University for Special Olympics. A new report from the Institute on Disability at the University of New Hampshire, examines the health status of working-age (18-64) people with disabilities, as reported to the Behavioral Risk Factor Surveillance System, the nation’s premier public health survey. According to their website:


Among the key findings in the report:

• If people with disabilities were a formally recognized minority group, at 19% of the population, they would be the largest minority group in the United States.

• The highest proportion of people who say their health is fair or poor is found in people with disabilities (40 percent, compared to 23 percent of Hispanics, 22 percent of American Indian/Alaska Natives, 18 percent of blacks, and 8 percent of Asians).

• People with disabilities have the least desirable prevalence rates for ten of the fourteen selected health indicators including cardiovascular disease and diabetes.

If the nation received this report on the health status of any of the above minority groups, there would be public outrage and calls for increased funding. But, because it involves people with disabilities, it falls upon us to demand that the health people with disabilities, be as high a priority as any other minority group.


For more information on the Health Disparities Chart Book and to download a copy, visit http://iod.unh.edu/Projects/health_disparities/chartbook.aspx

What Is This Cloud Computing?

I have been asking myself this question each time I have read about cloud computing in the pages of the business section and having no idea what it meant. The need to learn more became acute when I was asked to participate in a conversation at the Coleman Institute at the University of Colorado, titled:”Implications of Cloud Computing for Residential Support and Service for People with Disabilities” in October. .This conversation is going to include service providers, consumers and advocates, technologists, law and policy specialists.


I have learned that the cloud is going to be a game changer for people with disabilities. If you thought the IPad was revolutionary, we have seen nothing (and I believe the IPad is a game changer for people with disabilities). The cloud is going to be universe changing.

There is already an international initiative, the Global Public Inclusive Infrastructure (GPII) initiative that is already thinking and planning and we need to be informed and get involved so we can shape the thinking and policy that will come out of this initiative. For example, they are already shaping how people with disabilities will access all forms of technology in a way that will make sense to each user. Imagine, each person with a disability (or me) will have a unique identifier (stored in the cloud). Every time the person accesses their mobile phone, PDA. notebook, laptop, net book, computer, or any devise 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, font size, color, background color, layout, will look the way they want. A visually impaired person will see the size and color that best suits them, the voice commands will be at the right volume; a person with a cognitive disability will see the same screen layout each time they access technology.


All this is just the beginning and important because as budget pressures increase, we must find less labor intensive ways to provide services and as in-person supports become less common, people will need to become more independent in their use of the web because their service providers may be at a remote location, monitoring supports for lots of people..

What is "Typical" ?

We use the word so often, that most of us hardly give notice to what "typical" means. This week, however, I have been thinking about it ever since a former student contacted me.  Greg shared with me that he was living in Texas, working , had gone to college and was collaborating with a filmaker about a film about his successful life.. It got me thinking about a question that I am frequently asked, "What is a typical Cushing student?". Greg says that part of his his success are the  opportunities he received at Cushing and for the staff who encouraged him to pursue his dreams.Since few of our students go to 4 year colleges, did that mean that Greg was not typical?  While I was pondering that thought, yesterday I was preparing to do a live call in with the local radio station, WATD. I called into the number I was given and the man who answered the phone and gave me my instructions, also shared this with me.  He was  a Cushing graduate, had a car, lived in his own apartment and worked his dream job at the radio station. He also said he owed his success to Cushing. Is he typical?

The answer is that there is no typical Cushing student. What is typical is the belief that we hold for every student and person we serve-to provide them with opoprtunities to learn, grow and to be an independent as possible.

A Picture is Worth a Thousand Words

Or so they say. In this case, it is worth 6 words. That is the length of our tag line. All Ages. All Abilities. All Together. Last week, we had a fun filled field day and Jovanny Gomes, one of our staff, found a new way to show his committment to what we do.

Special Event-Expect Delays at Exit 17

This morning, as I was driving to work, the above sign greeted me as I drove to work.  It was meant for those entering the Mass Pike from the Ted Williams tunnel. In spite of the fact, that I was heading down Rt. 93, the sign gave me pause.  The special event was really not a special event, but a funeral that was going to be held a few hours later in Newton.  There was good reason to expect delays because when a good person or a young person is buried, their funeral attracts many mourners. Today a very good person was buried and she was taken from us too young.

Many wonderful things have been said about Myra Hiatt Kraft and as many of us have learned, they were all true. She was a woman devoted to her family and to philanthropy. Many of of her causes were born out of her own experiences. Her father's parents, sisters and brother were exterminated in Nazi concentration camps and she grew up with a devotion to Israel and to Brandeis, from which she later graduated. Her commitment to philanthropy was not limited to Jewish causes, in fact, Boston College, Holy Cross and Catholic Charities received major support from her generosity. And then there were the countless secular causes, most notable the Boys and Girls Club of Boston.
I never met Myra, but I felt her presence. While I loved seeing her cheer loudly for our New England Patriots, it was the knowledge of her many acts of selfless kindness, that made me proud she lived among us. I was not among the mourners at Temple Emannuel in Newton this morning but I join the millions across the globe who will miss her.

From Children's Hospital's Blog

The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.





Brian Skotko and his sister, Kristin

On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation. Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”

Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.



My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.

Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.

People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.

All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities. So, why do people underestimate their abilities? It must be because they do not know someone with Down syndrome. Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.

If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.

Lifechangers: Sharon Stone Raises $100K for Down Syndrome

Lifechangers: Sharon Stone Raises $100K for Down Syndrome