Diagnostic Centers California Department Of Education Delivering the Hard News Well: Your Child Has Mental Retardation A symposium for the Manhattan Beach.

DiagnosticCenters

CaliforniaDepartment

OfEducation

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

DiagnosticCenters


OfEducation Presented by:

Judi Burkhartsmeyer, Assistant Director

Diana Browning Wright, School Psychologist

Nancy Gronroos, School Psychologist

Ron Russell, School Psychologist

Diagnostic Center South

DiagnosticCenters


OfEducation

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

DiagnosticCenters


OfEducation

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

DiagnosticCenters


OfEducation

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


DiagnosticCenters


OfEducation

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


DiagnosticCenters


OfEducation

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


DiagnosticCenters


OfEducation

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


DiagnosticCenters


OfEducation

I can handle your reaction and will not break

my compassionate stance no matter how you

respond.

dbw


DiagnosticCenters


OfEducation

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


DiagnosticCenters


OfEducation

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


DiagnosticCenters


OfEducation

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


DiagnosticCenters


OfEducation

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


DiagnosticCenters


OfEducation


NOT in a large meeting (IEP)

NOT time to discuss goals and objectives

NOT time to determine placement

DiagnosticCenters


OfEducation

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

DiagnosticCenters


OfEducation


Being “fully present” Determine how to address parents Present information as “team” findings Watch your body language Don’t speak too fast

DiagnosticCenters


OfEducation


Remember what you are trying to do.

Give parents difficult information in a

compassionate, comprehensible manner

and respectful of their reaction.

DiagnosticCenters


OfEducation

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.

DiagnosticCenters


OfEducation

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.

DiagnosticCenters


OfEducation

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?

DiagnosticCenters


OfEducation


Clarify and contrast: what it does NOT

mean contrasted with what it DOES mean

People first language

Reference causation

DiagnosticCenters


OfEducation


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

DiagnosticCenters


OfEducation


Clarify and contrast: what it does NOT mean

contrasted with what it DOES mean

People first language

Reference causation

DiagnosticCenters


OfEducation

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

DiagnosticCenters


OfEducation

Ending the Session

Non-verbal ending cues (standing, deep

breath, hands clap on lap)

Restate how hard it was to say

Physical closure

DiagnosticCenters


OfEducation

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.

DiagnosticCenters


OfEducation

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.

DiagnosticCenters


OfEducation

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

DiagnosticCenters


OfEducation

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.

DiagnosticCenters


OfEducation

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

DiagnosticCenters


OfEducation


Sattler’s Pillars of Assessment Norm-referenced tests Interviews Observations across settings Informal assessment procedures

DiagnosticCenters


OfEducation


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

DiagnosticCenters


OfEducation

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

Diagnostic Centers California Department Of Education Delivering the Hard News Well: Your Child Has Mental Retardation A symposium for the Manhattan Beach.

Documents

hard news

metamessage checklist

dbw slide

news comprehensible

message transitioning

special education director

meeting end

compassionate stance