Quality of Life – Global Down Syndrome Foundation

by Michael Bryant of Global Down Syndrome Foundation with a few notes by Mardra Sikora

“Learn from yesterday, live for today, hope for tomorrow.” – Albert Einstein

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As recently as 1983, a person with Down syndrome was barely expected to live into adulthood. Three decades later, most of the people living with Down syndrome are adults, and have the potential to live long lives, with many expected to live to 55, 60, and beyond.

These facts are a source of pride for the Down syndrome community, reflecting how far we’ve come in so short a time. The reasons behind the dramatic increase are many, and they each show a major step forward:


  • The end to widespread institutionalization of people with Down syndrome, which began with the Community Mental Health Act championed by President John F. Kennedy.
  • Improvements in medical care and treatments.
  • The human and civil rights movements, which made people with Down syndrome be seen as an increasingly important part of society.
  • Legislative efforts such as the Americans with Disabilities Act (ADA), and the Individuals with Disabilities Education Act (IDEA), which have enabled people who are differently-abled to be more easily seen in mainstream society.*

 

Although these advancements have set the stage for people with Down syndrome to live longer, happier lives and societal acceptance and government legislation are both moving in a positive direction, research and medical advances take significant investments of time and money and Down syndrome is the least funded genetic condition in the U.S. Therefore, we need to focus on accelerating these positive aspects. We need to focus on quality of life.

One of those people who have done so is Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation.  Whitten is the mother of Sophia, who was born with Down syndrome in 2003. Whitten helped start the Global Down Syndrome Foundation in 2009 to significantly improve the lives of people with Down syndrome through research, medical care, education and advocacy.  Whitten said, “Having a child who is differently-abled has really expanded our understanding of diversity in the world. I can now see people who are differently-abled as great contributors to our society on many different levels. I did not see that before.”

“I have met leaders of various organizations serving people who are differently-abled including people with Down syndrome and I have witnessed first-hand their life-transforming work,” she said. “To witness their work and to be part of a new Down syndrome movement is truly a privilege and rewarding beyond my expectations.”

People with Down syndrome are now mainstreamed in school, participate in religious groups and sports teams, perform on stage and screen, volunteer in their communities, and are important contributors to the workplace.

A growing number of them live independently or semi-independently. More are continuing their educations past high school, and people like Lauren Potter, Jamie Brewer, Chris Burke, Luke Zimmerman and DeOndra Dixon have become celebrities and shown the world how capable people with Down syndrome are.

But with all of the advances we’ve made, there is still more we can do.

It’s Time

It’s time to rally people for increased funding for research into Down syndrome and co-occurring conditions such as Alzheimer’s disease, cancer and autoimmune disorders. This research has the potential to dramatically improve the lives of people with Down syndrome.

It’s time to ensure adequate support for families and caregivers, by increasing transportation options, providing for financial security via legislation like the Achieving a Better Life Experience (ABLE) Act, and empowering self-advocates to pursue their dreams.

It’s time to provide the resources that adults with Down syndrome need to maintain active, healthy lives. Health and wellness programs, nutrition classes and meaningful employment opportunities should set the stage for a lifetime of good habits.

It’s time to demand education that includes the differently-abled and continues beyond the classroom and beyond the childhood years.

It’s time to make sure people with Down syndrome have access to quality medical care, no matter where they live, and to make sure that medical professionals are up to date on best practices.

It’s time to advocate for the rights of people with Down syndrome not only in the U.S. but around the world, where recent cases such as Baby Leo (and 5 year old Ahmed) show that discrimination is still a problem that we face.

It’s time to address the discrepancies in life expectancy by race and be sure that all people with Down syndrome are given a chance to enjoy the quality of life advances that continue to be made.**

We’ve come a long way in making sure people with Down syndrome are seen as an important part of society. Now we need to make sure they have the quality of life so they see themselves the same way. Support the Global Down Syndrome Foundation or other Down syndrome organizations and make sure quality of life is a priority. We want people with Down syndrome to not just meet their expectations; we want them to exceed their expectations.

* To learn more about the changing landscape for human rights and medical care, check out the Global Down Syndrome Foundation’s interactive timelines.

**Added by The Road, with appreciation that GDSF and other national organizations have begun discussions on this issue and we are hopeful that research and inclusive efforts will change the current disparity statistics.

We are also excited on The Road to watch for successes and news from the newly begun Global Down Syndrome Foundation Adults with Down Syndrome Task Force. Quality of Life for the entire life is a great goal to have.

Read more from the Q&A with Michelle Sie Whitten at http://www.globaldownsyndrome.org/our-story/history/qa-with-michelle-sie-whitten/