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 • Don’t 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 don’t take lightly and don’t 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 evaluator’s desire to elicit child’s best performance by observing him/her in comfortable, familiar setting. Also allows assessment of degree to which child meets family’s expectations.

27. Cultural Considerations • Cultural Differences – Consider family’s 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 family’s 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 • Sattler’s 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