addressing independence website
TRANSCRIPT
Addressing Independence
A Life Course Model for Spina Bifida
Judy Thibadeau RN, MNHealth Scientist
Centers for Disease Control and Prevention
Amanda DarnleyDirector of Communications and Marketing
Spina Bifida Association
SBA National ConferenceJune 28, 2011
Anaheim, California
National Center on Birth Defects and Developmental Disabilities
Division of Human Development and Disability
Addressing Independence
A Life Course Model for Spina Bifida
This session Judy
• CDC’s life course model
• CDC Spina Bifida web pages
• Independence vignettes, CDC Spina Bifida web pages
Amanda• SBA “Preparations” interactive website
The Life Course Model
Need for life course personal development strategies for children affected by spina bifida
Clinical experts, CDC, SBA identified developmental milestones and goals, focusing on independence and participation: Life Course Model
CDC updated Spina Bifida web pages to include Living with Spina Bifida information with focus on life course and the development of independence, the Life Course Message
SBA developed interactive website, “Preparations” using the Life Course Model
THE LIFE COURSE MESSAGE
A MODEL FOR GROWING UP
The Life Course MessageA Model for Growing Up
Content
Health Self Management Personal and Social Relationships Education, Learning, Employment
The Life Course MessageA Model for Growing Up
Health Self Management
Developmental Goal and Indicators of Achievement Moves to explore the home/daycare environment
• Plays independently
• Plays with others
• Involvement in mobility development programs and therapies
Tips for Achievement• Encourage cruising, pulling to stand, standing and walking as
appropriate
Resources and Information• Papers/websites
The Life Course MessageA Model for Growing Up
Personal and Social Relationships
Developmental Goal and Indicators of Achievement Early sharing of responsibilities between child and parent
• The child has been assigned age-appropriate household chores.• The child receives rewards/consequences for completing the chores
he/she has been assigned.
Tips for Achievement• Set goals with your child - expanding independence in household
tasks.• Provide small rewards (e.g., verbal praise, stickers) each time the
chore is completed.• Chores can involve complete tasks (e.g., emptying the whole
dishwasher) or portions of tasks (e.g., putting clean forks and spoons away), depending upon the abilities of the child.
The Life Course MessageA Model for Growing UpEducation, Learning, Employment
Developmental Goal and Indicators of Achievement Child is experiencing school success with individualized
programming as needed• Child is performing well academically in reading, math, and other
subjects.
• Child participates in class discussions, raises hand, and when appropriate, interacts without prompting.
Tips for Achievement• Use digital clocks when using a face dial is not successful.
• Set a specific time for homework and allow for frequent, structured breaks.
• Provide organizational tools.
SPINA BIFIDA WEB PAGES
CENTERS FOR DISEASE CONTROL AND
PREVENTION
HTTP://WWW.CDC.GOV/NCBDDD/SPINABIFID
A
Spina Bifida Web PagesContent
Facts
Health Issues and Treatments
Living with Spina Bifida and The Spina Bifida Experience
Research
References and Information
Spina Bifida Web PagesContent
Living with Spina Bifida and The Spina Bifida Experience
Newborn and Infant Toddler and Preschool School Age Adolescent and Teen Young Adult
Spina Bifida Web PagesShort videos
Independence emphasized “Managing Medical Care”
• Keeping a notebook
• Planning what questions to ask
• Understanding spina bifida
“Developing Independence”• From an early age
• Same goals as those who don’t have spina bifida
• Equalize the playing field with assistive devices
“Physical Activity”• Important for all• From an early age
Spina Bifida Web PagesShort Videos
“Managing Medical Care”
http://www.cdc.gov/NCBDDD/video/SpinaBifidaMedical/index.html
“Developing Independence”
http://www.cdc.gov/NCBDDD/video/SpinaBifidaIndependence/index.html
“Physical Activity”
http://www.cdc.gov/NCBDDD/video/SpinaBifidaPhysicalActivity/index.html
Preparations
Amanda DarnleyDirector of Communications and Marketing
Spina Bifida Association
National Center on Birth Defects and Developmental Disabilities
Division of Human Development and Disability
Preparations Web Site Goals
Develop a website tool which parents of children with spina bifida and clinicians can use to gauge a child ‘s development and identify interventions to improve success in the development of adult independence.
Develop a young adult component.
Site Information
CDC Transition Working Group Spina bifida experts from across the country
Methodology
Life course model development
Testing of information Sessions during the 2009 and 2010 National
Conferences
Life Course Logic Model
Website Features
Can be navigated by either age or topic (determined by the user)
User is able to save previous entries and access at a later date
Features success stories and other intervention ideas from users
Content does not vary by end user (clinicians and families receive the same information)
Feedback
Site averages over 530 visitors per month
Almost 850 people have saved reports
On average, visitors complete one module per visit
Young adult modules are the most popular
Judy Thibadeau R.N. M.N. [email protected]
Division of Human Development and DisabilityNational Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
Amanda [email protected]
Spina Bifida Association
National Center on Birth Defects and Developmental Disabilities