Monday, February 28, 2011

People First Language

"A person with Down syndrome." It seems like an easy thing to say, but many times the person in that sentence is forgotten and the diagnosis becomes the label.

Here are some basic guidelines for using People First Language from the NDSC:

Put people first, not their disability
  • A "person with a disability", not a "disabled person"
  • A "child with autism", not an "autistic child"

Use emotionally neutral expressions
  • A person "with" cerebral palsy, not "afflicted with" cerebral palsy
  • An individual who had a stroke, not a stroke "victim"
  • A person "has" Down syndrome, not "suffers from" Down syndrome

Emphasize abilities, not limitations
  • A person "uses a wheelchair", not "wheelchair-bound"
  • A child "receives special education services", not "in special ed"

Adopt preferred language
  • A "cognitive disability" or "intellectual disability" is preferred over "mentally retarded"
  • "Typically developing" or "typical" is preferred over "normal"
  • "Accessible" parking space or hotel room is preferred over "handicapped"

Sunday, February 27, 2011

Actors with Down syndrome

Since it is Oscar night, let's take a moment to look at Movies that feature an actor with Down syndrome.

Television Movies

2008 - The Memory Keeper' s Daughter- Lifetime Krystal Nausbaum
2001 - Jewel- CBS Ashley Wolfe
2000 - Flowers for Algernon- CBS David McFarlane
1997 - Smudge- TNT Andrea Friedman
1995 - My Antonia- USA Blair Williamson
1992 - Jonathan: The Boy Nobody Wanted- NBC Chris Burke, K.C. Clarizo
1987 - The Kid Who Wouldn' t Quit- ABC Brad Silverman
1987 - Kids Like These- (11-08-87) CBS Ted Polito
1987 - Celebration Family- ABC Mindy Zazanis
1982 - The Kid from Nowhere- NBC Ricky Wittman
1977 - This is My Son- NBC

Feature Films

2006 - Unknown- The Weinstein Co. Blair Williamson
2005 - The Ringer- Fox Eddie Barbanell, John Taylor
2003 - Afterlife- Soda Pictures (UK) Paula Sage
2001 - I Am Sam- Alliance Atlantis Brad Silverman
1996 - The Eighth Day- Gramercy Pictures Pascal Duquenne
1988 - The Seventh Sign" Columbia TriStar John Taylor

Other's can be found on Down Syndrome in Arts & Media.

Saturday, February 26, 2011

AAPD Honors Glee and Others

Tuesday, March 15, 2011
6:15 p.m. Reception
7 p.m. Dinner
The Ronald Reagan Building & International Trade Center Atrium
1300 Pennsylvania Avenue, NW – Washington, DC


Congressman Jim Sensenbrenner, Jr. & Mrs. Cheryl Sensenbrenner


Jessica Lehman Community Resources for Independent Living
Catharine McNally Keen Guides, Inc.


To the Cast and Creative Team behind the Fox Television show “Glee

All proceeds benefit American Association of People with Disabilities, a 501(c)(3) non profit organization.

The American Association of People with Disabilities (AAPD), the country's largest cross-disability membership organization, organizes the disability community to be a powerful voice for change – politically, economically, and socially. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA).

I attended an AAPD Awards Gala in the past and it was a special experience that I will remember forever. This organization goes to great lengths to champion causes for all people with disabilities.

Friday, February 25, 2011


Spread the word to end the word.

Spread the Word to End the Word is an on-going effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word. The campaign is intended to get schools, communities and organizations to rally and pledge their support.

Why does it hurt? The R-word hurts because it is exclusive. It’s offensive. It’s derogatory. The R-word is hate speech.

On October 5, 2010, U.S. President Barack Obama officially signed bill S. 2781 into federal law. Rosa’s Law, which takes its name and inspiration for 9-year-old Rosa Marcellino, removes the terms “mental retardation” and "mentally retarded" from federal health, education and labor policy and replaces them with people first language “individual with an intellectual disability” and “intellectual disability.”

This word is used way too often in casual conversations and it has to stop.
Fore example the r-word was used over 38,000 times on 2/25 on the internet

Thursday, February 24, 2011

Tonight On Private Practice

Tonight’s episode of ABC’s PRIVATE PRACTICE, “Two Steps Back” will feature an actress with Down syndrome.  M.E. Powell will be featured as an unwed expectant teen.  Her boyfriend is played by a typical actor, but his character has a developmental disability.  M.E. was also featured on an episode of TOUCHED BY AN ANGEL in 2001. 

Wednesday, February 23, 2011

NIH Funding

National Institute of Heatlh funding for Down Syndrome
  1. Because Congress does not earmark funds for specific diseases or conditions in its annual appropriations for NIH, efforts must be made to encourage NIH to fully fund the goals of the report, through research grant applications, public advocacy, and encouragement from Congress.
  2. Down Syndrome receives the lowest research funding per capita at $42/person ($17MM per year). Compare it to Autism $211/person ($118MM per year) or MS $422/person ($169MM per year).
  3. The full research plan is available on the National Institutes of Child Health and Development (NICHD) website.
  4. Program funding would provide research tools to scientists – including a repository for mouse models, and creating a brain and tissue bank – as well as training and mentoring of new investigators.
  5. NDSS believes that NIH must triple the amount of resources currently dedicated to Down syndrome research to effectively accomplish the goals set in the plan.
With sufficient resources, the plan has the potential to advance the translation and development of effective new treatments, particularly for cognition in Down syndrome. It will also encourage new therapeutic strategies involving secondary disorders affecting a significant numbers of individuals without Down syndrome, including Alzheimer's disease, atherosclerosis, cancer, and developmentally-associated cognitive impairment.

This is another crucial topic to mention to your state's Congressmen, and we will keep you updated as additional support is needed and developments come about.

Tuesday, February 22, 2011

Pathways to Potential!

If you live in Philadelphia or the surrounding area, you will not want to miss this “One of a Kind Event” brought to you by the Karen Gaffney Foundation and The Brad Hennefer Golf For Life Foundation!

Come to Citizens Bank Park, home of the Word Class Baseball Team, the Philadelphia Phillies, to hear from another World Class Team - Self Advocates Brad Hennefer, Karen Gaffney, Sujeet Desai and David Egan on Saturday, February 26, 2011.

They have shared their stories all around the country in a variety of settings, but they have never before joined forces to give their audiences a concentrated dose of Inspiration and Information.

It is going to be an amazing day!

Monday, February 21, 2011


  • a self advocate asks "Can I begin a career and still keep my benefits?"
  • a parent asks "Can my child have birthday/holiday gifts in an account and still keep their benefits?"
If they don't have an expensive special needs trust the answer to those questions is no, but that may not be the answer in the near future. An ABLE (Achieving A Better Life Experience) account will allow a person who receives Medicaid benefits to save on their own without losing the services Medicaid provides. It levels the playing field by providing a tax exempt way to save similar to plans like 401K, 529, Medical savings, and IRAs. Money in an ABLE account can be used for expenses like education, medical, and housing to name a few.

Achieving A Better Life Experience (ABLE) Act

A bill to establish ABLE accounts was introduced in the last session of Congress, but it did not pass despite growing congressional support. It will be reintroduced in this session of the 112th Congress and we expect to see it approved with your help. Please contact your state's congressman and let them know you want their support for the ABLE Act and we will keep you updated with the bill's progression.

Sunday, February 20, 2011

Oh Behave!

Notes from a recent workshop on behavior:

Our children are who they are and they are influenced by those around them.

  • personality, family, environmental, biologically driven

Disruptive behaviors arise from a mismatch between expectation and level of cognition understanding

At any point in time anyone can become overwhelmed by too many commands in a sequence, too long an interval to focus, lack of reinforcement to continue good behavior. They are so overwhelmed that they don't understand their level of anxiety.

Behavior is influenced by developmental level of the child, not necessarily predicted by chronologic age

Health factors can influence behavior including but not limited to:

  • anemia, ENT related illness, ear infections, sleep apnea, vision, reflux, celiac, thyroid, cardiac status, constipation, seizures, sensory processing, attention deficit 

6% of people with Down syndrome have an autism dual diagnosis.

No matter what cognitive level most children want to communicate. When childern understand but have difficulty pronouncing it makes kids get frustrated and use less language.

Active listening means taking the heat of the moment and turn it into words. For example say "I know you are upset because something happened" and talk about how they feel more than asking them what happened.

Catch the child in the act of being good. Reinforce 6-10 positive behaviors to every 1 negative. 

  • Time outs shouldn't be in the child's room and especially not in their bed. 
  • Give a warning prior to placement in timeout unless it is an aggressive behavior. 
  • Give a brief statement of the offense 
  • Find a neutral area for timeout
  • Use timeouts for 2-3 behaviors at a time max 
  • 1 minute per age or developmental age
  • No eye contact. 

Calming techniques may be needed to diffuse a situation. Quiet hands is a method where the child sits down with hands folded and hugs or hold techniques can also work either have the child face you or facing away then use appropriate hugs and holds to release energy.

ABC's of behavioral modification. What's the behavior and what's the consequence?
  • Antecedent - what occurred before the behavior
  • Behavior - precise description of problem behaviors
  • Consequences - what occurred after the behavior

The behavior that gets the most attention is the behavior that stays.

Practice when you are not in the moment to prepare a child for different situations.

Use stickers or check marks for praise. What ever the reward the child will want to attain it.

Set the expectation on the day before you begin.

  1. If/then statements - explain what the activity is and what result is 
  2. distractions - move their attention to another topic
  3. warm up tasks - things they can do easily that lead in to the new task

Saturday, February 19, 2011

IDEA Funding Restored

Historically speaking IDEA has always been an underfunded program. Only 16% of the funding needed was provided by the government. Until yesterday there was a risk of losing that funding in the current round of congressional budget cuts. 

The House passed a bill yesterday which funds government through September and restores $557 million in planned cuts to the Part B program of the Individuals with Disabilities Education Act(IDEA) which provides grants to states.

Congresswoman Cathy McMorris Rodgers floor speech supporting the amendment to restore IDEA funding:

Friday, February 18, 2011

A Love Story

The story of Niki and Mark. A woman leaving a bad relationship and a man looking for something he though he would never find. Its a story of fate and love at first sight, but most of all it is an example for everyone. Your dream can come true if you want it bad enough. Their dream was to meet someone special and spend the rest of their lives together. Now they are happily married and achieving their dreams together.

  • "She gave me my first kiss on the lips," he said. "It was good."
  • "When Niki came down the aisle, she looked so gorgeous. My, oh my," he said. "She's the love of my life."
  • "He's a gentleman,'' she said. "He's caring and polite. He cooks for me."

And their next dream is to go to a Chris Burke concert!

Thursday, February 17, 2011

My Great Story

People with Down syndrome have inspiring stories and life experiences. Here is an opportunity to share those stories on a national level. The NDSS is launching an amazing campaign called My Great Story to showcase the unique experiences that make an individual's life special. The inspiring stories of Sara Wolff, The Public Speaker and Sujeet Desai, The Traveler are included in the overview. Instructions on how to share your story or the story of a person who has touched your life provided on the site.

Join the National Down Syndrome Society's campaign to celebrate and honor the great stories of the 400,000 Americans living with Down syndrome.

Submit your story or the story of a friend/family member here.