Family Needs

Doctors Ann and Rud Turnbull have dedicated their lives to individuals with disabilities and their families.  From the time Rachel was born, I heard about the Beach Center.

Loving the Florida beach in 2001.
Loving the Florida beach in 2001.

I knew anytime I heard about something related to the Beach Center it was going to be good stuff.  Ann and Rud started the Beach Center on Disability at the University of Kansas in 1988.  You can learn more about the history of the Beach Center at their website, but I really like this blurb by Ann and Rud about the Beach Center’s slogans:

“We have some slogans at the Beach Center that underlines our research, so we take our research and we try to shape it in little capsulated ideas that people can use. One is great expectations; we should expect great things from people with disabilities and their families.  Unless we expect great things, we will never ask for them. Second, full citizenship, the notion that we belong just as everybody else belongs with all the rights and responsibilities pertinent thereto. Third, the notion of choice; we all want some choices around our lives.

Fourth, the notion of positive contribution.  Much research in the past only used instruments that enabled families to report the negative things about their experience, their extent of depression, their extent of stress, their extent of worry. There was very little written about the fact that yes there are many challenges associated with raising children with disabilities or children without disabilities also. But, also many positives that children with special needs contribute. One of the things about our Beach Center’s legacy is we were one of the first programs that developed instruments, research tools that people could use that enable families to report positives as well as negatives, and for many families to be able to really affirm the things that they especially appreciated about their children with disabilities. That is a message that we try to get out, that nothing is ever all terrible or all wonderful. Those things are many different shades of grey and some of those shades of grey are the many positives that people with disabilities bring to their families.”

Loving the ocean Florida 2009
Loving the ocean Florida 2009

Wow!  Does that reflect many of us and our thoughts and philosophy or what! One of the cool things about Ann and Rud is that not only are they educators, researchers and advocates, they raised a son with multiple disabilities. Their son passed a way a few years ago but certainly he shaped so much of their understanding and actions and therefore, shaped the face of services for many of us. Thank you Ann and Rud!

Since moving to Kansas it has been a great honor for me to be able to get to see the Beach Center at KU a little more up close and personal.  Research is important to our families for so many reasons. Research has provided the groundwork and the framework for early intervention, inclusive education and positive behavior supports. Often research provides us with an avenue to pursue funding.  A few months ago Dr. Ann Turnbull reached out to me and wanted to know if I might help her with outreach to the Down syndrome community. They are working on a very comprehensive international Family Needs Assessment (FNA) research project and need 400 participants. The study is cross disability and for families of children birth to 21.  Many of you immediately responded affirmatively and have distributed to families.  The Beach Center still needs more participants (it takes about 20 minutes) to be able to validate and complete the project.  So today I’m asking you to click on this link (FNA) and take the survey.

If your organization is interested in participating as a group and collecting information specifically about your family’s needs to assist you in programming decision, you can contact Dr. Ann Turnbull at turnbull@ku.edu. Thank you in advance for assisting with this important project!

Pluto and Rachel at Castaway Cay Disney Cruise 2012
Pluto and Rachel at Castaway Cay Disney Cruise 2012

Today’s pictures have nothing to do with this blog – except that they show Rachel having fun at the “beach”. I’ve learned that you guys are more apt to read the blog if I add cute pictures!

Rachel in Castaway Cay Disney Cruise 2012
Rachel in Castaway Cay Disney Cruise 2012
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