Monday, February 21, 2011

ABLE Act

  • 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
Resources:

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.