Delivering the Hard News Well: Your Child Has Mental Retardation

1
Delivering the Hard News Well Your Child Has
Mental Retardation
A symposium for the Manhattan Beach Unified
School District Ellyn Schneider, Special
Education Director and invited staff January 7,
2005
2
Presented by
Judi Burkhartsmeyer, Assistant Director Diana
Browning Wright, School Psychologist Nancy
Gronroos, School Psychologist Ron Russell, School
Psychologist Diagnostic Center South
3
Symposium Agenda

• Review belief systems
• Prepare to deliver the hard news
• Beginning the session
• Transitioning to the hard news
• Delivering the message
• Transitioning to the meeting end
• Ending the meeting
• Cultural considerations
• Discussion

4
Delivering the Hard News Meta-Message Checklist

• I respect your right to hear this news in
  private, not in a large impersonal meeting, and
  to express however you feel about this openly
  with me.
• I care about your child - this is hard for me to
  say and, I know, hard for you to hear.
• rr, dbw

5
Delivering the Hard News Meta-Message Checklist

• I know the delightful human being your child is,
  and can give you examples from my experience.
• I know the limits of prediction and will neither
  over nor under-play what I know.
• I respect your right for a second opinion and
  will not alter my compassionate stance because
  you ask for one.
• ng

6
Delivering the Hard News Meta-Message Checklist

• I will make the news comprehensible to you and
  your family, with concrete examples of why I
  believe the diagnosis is correct, and I will not
  bury the news in jargon or euphemisms or
  metaphors to pretend the significance is less
  than it really is.
• jb

7
Delivering the Hard News Meta-Message Checklist

• I will make myself aware of cultural, ethnic,
  racial and social and economic differences
  between myself and your family and will seek to
  communicate in was that bridge those differences
  with sensitivity and compassion.
• rr

8
Delivering the Hard News Meta-Message Checklist

• I honor your right to be overwhelmed by this
  message, and to express grief, anger, denial and
  even despair without being overwhelmed myself by
  your feelings.
• dbw

9
Delivering the Hard News Meta-Message Checklist

• I can handle your reaction and will not break my
  compassionate stance no matter how you respond.
• dbw

10
Delivering the Hard News Meta-Message Checklist

• I know you may have questions, and I have time or
  will make time, to answer them non-defensively.
• I know you exist in a context and I am available,
  if you ask me to help you problem solve how, or
  if, you tell others in your life about this.
• jb

11
Delivering the Hard News Meta-Message Checklist

• Your child can learn, make you proud of
  accomplishments and bring you happiness.
• Your child can be a great teacher for you and all
  who meet you and your child.
• rr

12
Delivering the Hard News Meta-Message Checklist

• This is the same child before this news as well
  as after this news and I promise to remind us of
  this fact before the session is over.
• We can work together, hand in hand, to help your
  child achieve maximum independence and quality of
  life.
• dbw, ng, jb, rr

13
Delivering the Hard News Meta-Message Checklist

• Prepare to Deliver the Hard News
• Beginning the Session
• Transition to the Hard News
• Now Deliver the Hard News Well
• Transition to Conference Ending
• Ending the Session

14
Prepare to Deliver the Hard News

• NOT in a large meeting (IEP)
• NOT time to discuss goals and objectives
• NOT time to determine placement

15
Prepare to Deliver the Hard News

• Finding the time and place
• Include both parents if possible
• Come prepared
• Mentally (Meta-message checklist)
• Time to be supportive
• Resources
• Include a colleague

16
Prepare to Deliver the Hard News

• Being fully present
• Determine how to address parents
• Present information as team findings
• Watch your body language
• Dont speak too fast

17
Prepare to Deliver the Hard News

• Remember what you are trying to do.
• Give parents difficult information in a
  compassionate, comprehensible manner and
  respectful of their reaction.

18
Beginning the Session

• Friendly greeting of parent.
• Tell something new and endearing about the child
  (establishing you know and care about this
  child).
• Briefly summarize the assessment process. Compare
  and contrast information.

19
Transition to the Hard News

• Convey something of gravity is coming that I
  dont take lightly and dont expect you to take
  lightly either.

20
Now Deliver the Hard News

• Give the implications of the test results,
  adaptive behavior, information you have given.
• Present the dx in contrast to other terms.
• Ask for clarification - What does Mental
  Retardation mean to you?

21
Now Deliver the Hard News

• Clarify and contrast what it does NOT mean
  contrasted with what it DOES mean
• People first language
• Reference causation

22
Now Deliver the Hard News

• Use active listening skills WAIT WAIT WAIT
• Handling anger, denial and grief
• Bring up family context
• Give ideas of the future
• Allow the family to continue leading the
  discussion

23
Now Deliver the Hard News

• Clarify and contrast what it does NOT mean
  contrasted with what it DOES mean
• People first language
• Reference causation

24
Transition to the Session Ending

• Tell what comes next
• Going home same child will be there
• Coming back IEP meeting
• General idea of your contribution for next meeting

25
Ending the Session

• Non-verbal ending cues (standing, deep breath,
  hands clap on lap)
• Restate how hard it was to say
• Physical closure

26
Cultural Considerations

• Translator When parents do not expect a
  diagnosis of MR, important to use impartial
  translator hired by district, to avoid
  humiliation in presence of parents translator.
• Home Visit Demonstrates evaluators desire to
  elicit childs best performance by observing
  him/her in comfortable, familiar setting. Also
  allows assessment of degree to which child meets
  familys expectations.

27
Cultural Considerations

• Cultural Differences Consider familys comfort
  with informality, eye-contact, showing emotion,
  personal questions, joint versus professional
  decision-making, and the point at which diagnosis
  should be broached.

28
Cultural Considerations

• Outcomes Cultural factors influence outcomes
  that are not under the control of the assessment
  team, including a) attribution of cause
  according to belief system b) belief in uncommon
  interventions or ones that are not
  research-based and c) belief that disability
  will impact future marriage or familys standing
  in community.
• Makes it especially important to address services
  and supports the student needs to maximize his or
  her future independence

29
Cultural Considerations

• 2002 AAMR defines MR in terms of impact on
  independent functioning, in addition to IQ range.
  The level of functioning model emphasizes the
  type and degree of individualized supports
  required, and takes into account cultural and
  linguistic differences in addition to
  communication, sensory, motor and behavioral
  factors and that individual limitations coexist
  with strengths.

30
Assessment Process Considerations

• Consider MR when
• Child presents with deficits in adaptive skills
  as well as academic
• Child has a medical diagnosis that often
  co-occurs with mental retardation
• Child has a history of developmental delay
• Child has failed to respond to SPED

31
Assessment Process Considerations

• Sattlers Pillars of Assessment
• Norm-referenced tests
• Interviews
• Observations across settings
• Informal assessment procedures

32
Assessment Process Considerations

• Involve the family from the beginning
• Team for assessment
• Assess all areas
• Take time to reach the finding

33
Discussion

• Compare and contrast what you currently are doing
  with our recommendations
• How does what we presented compare with your
  initial concerns
• Other discussion points