We read two stories this week that highlighted for us the positive messages of inclusion, good parenting, a caring community and supportive educational system.

The first article about a young lady with down syndrome from our neck of the woods, Allentown PA. The Morning Call web site ran an article about Briana Dunn who was the first child in the Council Rock School District with Down Syndrome to be main streamed. This is a great story to read about a successful young lady and a wonderfully supportive family.

The second article is about a young lady with Down Syndrome. She died in November of heart problems associated with Down syndrome. The article that appearred in the Commercialappealonline.com web site from Memphis highlights the remarkable life of this 25 year old self-advocate who accomplished so much in her short 25 years.

I read this bittersweet article today in the FresnoBee. It was a story of Keith Davis, a 45 year old man with down sysndrome who just recently passed away. Keith clearly lived a full life, was loved by many and reached out to establish freindships. I call that a happy full life. It’s a story worth reading. http://www.fresnobee.com/local/story/11938209p-12704284c.html

It’s been a busy week for us. One new page was posted to the site that is a work in progress. It is a links page for resources on information related to down syndrome. If you would like to suggest a link please feel free to add a comment to the page or email us.

Coming up soon we will be receiving an assistive communication device for our son. The manufacturers representative will be meeting with us and the staff at school to introduce the device and provide some training. We’ll be sure to post our experiences here and look forward to hearing from others on the subject of communication and speech therapy.

It’s easy to show adorable pictures of my beautiful son , and a little harder to talk about his education, socialization and health issues. But thinking about, talking about, writing about, what happens to him when we are no longer here to advocate for him is very hard. The purpose of this blog isn’t to just spread warm fuzzies.

An article appeared today on a newspapers web site reporting on the death of Rusty Scardina a 33 year old man with Down Syndrome in Florida. The article raises many points and questions about Rusty, his life and his care. One point that jumped out at me was that he was known to have obstructive sleep apnea (OSA). The article doesn’t mention what type of treatment he was receiving for it such as CPAP therapy, surgical intervention or dental mouthpiece. Persons with Down Syndrome are known to have a higher incidence of OSA. There is a good overview article at the Down Syndrome: Health Issues web site run by Len Leshin, MD on OSA and another at the Down Syndrome Information Network Information web site.

I don’t know Rusty or anything about the system that was responsible for his care during his lifetime. But I’ve read this story before… just different people, places and time. Something is broken in how our society decides how it wants to care for its disabled. I watch the news today and hear pundits opine, politicians pontificate and union members demonstrate about who is managing our eastern seaboard ports. I don’t hear voices being raised in the same way for Rusty and the issues surrounding the lives of how our society has chosen to provide for its disabled individuals. Maybe my analogy stinks but you get the drift. No doubt huge strides have occurred in the past 30 years in how we care for, educate and legislate for the disabled. But there is no point at which we can sit back and “maintain” the existing systems or say we’re satisfied with where we are at.

The policy statement from the The ARC of the United States frames the discussion this way;

“The primary goal for all persons with mental retardation and related developmental disabilities is to enjoy and maintain a good quality of life.”
“Quality of Life. People with mental retardation and related developmental disabilities must be able to live the lives they choose and have a good quality of life.”

(you can read all the the position papers from The ARC here)

“….live the lives they choose…” I don’t know that Rusty had a lot of choices during his life. As parents, family members and as a caring society we need to plan for the future and advocate;

• Advocate for quality services today that foster choice.

• Support medical research and care

• Make adoption an option

• Educate our neighbors and communities

• Engage our legislators in ongoing dialog and keep it going. Do you know who your legislators are?

• Stay involved in your school districts.Question authority!!

• Support better salaries, benefits and working conditions for caregivers, special educators and therapists.

• Join, support and participate in your local advocacy organizations.

We parents, family members, friends or just people that know, support and love a person(s) with developmental disabilities can NEVER sit back and relax. Unfortunately the system seems to be only as good as the “moment in time”. One moment everything seems to be going well and the next it’s a disaster waiting to happen. A support coordinator (case manager), teacher, direct care worker, supervisor, administrator, school superintendent, etc. can make or break the “system”. They can assist self-advocates so that they can live a life rich with choices, or they can continue to do what has happen to Rusty and countless others like him, see him as only an “case” that needs to be handled and not handled well.

There are many, many questions that need to be asked in what went wrong for Rusty. The question that continues to echo in my heart and head is how in a nation so, rich and powerful as the US can we continue to be getting this so wrong.

P.S. - A month for this man to be buried due to lack of funds? What’s up with that?! What a insult and tragedy.