Pacing a 'Hard News' Session: Key Concepts for Communicating a Mental Retardation Diagnosis
Diana Browning Wright & Nancy Gronroos
California Department of Education, Diagnostic Center, South
to Deliver the News
1. Prepare to embody the core meta-messages from the attached
checklist in all that you convey.
Under stress, people 'read' your intent underlying your words more
than the words themselves.
2. Don't speak fast, or convey your need to hurry up.'
Time spent now can reduce or eliminate future family/school discord.
This is likely to be a core 'peak experience' remembered by the family
all their lives.
3. Watch your body language: lean forward, sit side-by side or
within touch if sitting at a table. If possible, touch gently on the
shoulder, arm, knee if appropriate, at least once during the session
(bear in mind gender differences/similarities, cultural, ethnic and economic
disparities that influence comfort levels and formality/informality needs).
Remember to hug or use a firm, two-handed handshake for closure if at
Appropriate touch can convey connection and compassion, which allows
the listener to attend to the message more completely.
4. Use the parents' and child's names throughout the session
after soliciting input on how they would like to be called (do not assume
you know whether formality or informality is most comfortable).
Personalization leads to a sense of connection, making the message
easier to hear.
5. Try to get both parents at the conference if at all possible.
This will be very hard for one parent to convey to another at a later
6. Prepare yourself.
Be ready to be fully present, undistracted, empathic and compassionate.
Remember, you are in some way altering the family's hopes and dreams
for their child. Simultaneously, remember that 'mental retardation'
is only one feature of this child; other individual characteristics
and strengths also need to be discussed. The purpose of telling the
family this news is to prepare them for full participation in the ongoing
designing of supports for their child in a variety of environments.
You don't want to overdramatize this label, but you want to be sure
the family knows all that you know about this child and his or her
needs for supports.
7. Never deliver hard diagnostic news in IEP meetings with large
numbers of people, or in meetings in which the parent(s)
are expected to choose programs, attend to goals and objectives or
plan for the future of their child.
A lack of sensitivity conveyed by delivering hard news in large groups
will haunt you, the family and the district/family interactions for
years to come. Ongoing discord can often be traced to this meeting
if insensitivity characterized the encounter.
8. Remember what you are trying to do: Give parents information about
what we know about the child that is compassionately delivered, comprehensible
to them and respectful of current and future adult/child mutual attachment
It is important for parents to hear that their child will continue to
learn and acquire more skills, although their thinking will not be fully
mature. Point out the qualities their child has that support participation
in home and community life, e.g., being responsible, working carefully.
The term 'developmental disability' may be introduced, indicating that
mental retardation is one of several conditions that would be included
in that term. 'Developmental disability' is often preferred by families
and professionals alike and may be used in the future, once the parents
fully understand that their child has mental retardation requiring careful
planning of supports in a variety of current and future environments.
(See American Association on Mental Retardation, AAMR , for clarification
of environments and supports.)
Encourage parents to ask questions. Ask them whether the diagnosis is
surprising to them, but do not argue with parents who disagree with the
diagnosis. Point out that regardless of the diagnosis given, the child
they are taking home is the same one that they know and love. Mention
comments the parents have made or interactions observed that show their
current awareness and sensitivity to the needs of their child. Indicate
that the important thing is for their child to have the educational and
emotional support he or she needs, and that adults respect the pace of
their development. Parent support groups and Regional Centers,
in California, or other states' developmental disability service groups,
are usually mentioned. For parents who are ready for contact with them,
addresses can be given before they leave the session.
· Friendly greeting of the parent
Sample script: 'Come on in! I am so pleased you were
able to come to this meeting. May I get you a cup of coffee?'
· Tell something endearing about the child that
occurred during the assessment process. The family will be 'hearing'
your degree of connectedness to the child, and your degree of appreciation
of the child's unique and loveable characteristics. This message is hard
to receive if the family does not believe you know and care for this
· Briefly summarize the assessment process, reminding
the family of the information they gave for the adaptive behavior scales.
Compare and contrast adaptive behavior results with what you saw (behavioral
observations during assessment, in the classroom, in the home, etc.)
and results you obtained during testing or structured observation.
to the Hard News
Not all parents need to be prepared for the gravity of the diagnosis
you are about to discuss, having already raised the issue. Other families
benefit from a clear transition message before beginning the 'hard news.'
This decision is often based on the informant's sense of the parents'
awareness of their child's functional skills in comparison to age-mates.
The informant has likely gauged the degree of preparation to hear this
news from information given by the parents during the adaptive behavior
interview. If it appears that the parents have not yet realized
the implications of their child's skills in relation to their peers,
use of a transition messages before discussing the diagnosis can be helpful.
If you elect to use a transition message, some informants have found
it helpful to set the message clearly apart from the previous discussion
in order to prepare the family.
The key underlying message, however you begin a transition message,
is: Something of gravity is coming that I don't take
lightly and don't expect you to take lightly either. 'Mr
and Mrs. Owens, I have something to talk with you about now, that I have
not looked forward to saying, and I can imagine you are not looking forward
to hearing. But I don't feel it is 'ok' for me to know something about
Oliver that I do not share fully with you. We all need to have the same
information to be able to do our best future planning for Oliver's education.'
the Hard News Well
· Next, give the implications of the test results/adaptive
behavior/information you just finished talking about. (This step follows
the summary of the assessment process, or if you have elected to give
a transition message, immediately after that message.)
Sample script: 'So, Jane and Roger, we see that Tiffany has
some real strengths and some real weaknesses in her skills that she
demonstrates at home in your family, in the community, at school with
her classmates, and when she takes formal tests. Overall, you stated
that she seems like a child of about 5 to you when compared to other
children you know. The assessment team saw her as having approximately
4-year-old skills overall. We are all pretty close. We are in agreement
that she is progressing at a much slower rate than her classmates in
all areas. The implication of this is important for us to talk about
now, Jane. [lean forward with supportive eye contact] Tiffany is a
little girl who we can say has 'mental retardation.'
· Present the diagnosis as it contrasts with other
less exact terms.
Sample script: 'Sometimes we hear people using other words
to describe children with 'mental retardation.' You may have heard
some: developmentally disabled, developmentally delayed, cognitively
significantly below average, and so forth. I actually prefer the term
'developmentally disabled' because people don't have as many preconceived
thoughts about it as they do with the term 'mentally retarded.' The
term 'developmentally delayed' makes it seem like they will someday
catch up, which isn't accurate. I want to tell you all about what I
have discovered about the unique strengths Billy has as well as the
supports we think he needs. When we say Billy has a developmental
disability, or has mental retardation, we mean your delightful son
needs us to carefully consider the supports he will need in a variety
of current and future environments to best learn and be successful.
We want to help him have a high quality of life now and in the future,
ultimately becoming as independent as possible.'
· Ask for clarification- 'What does the term 'mentally
retarded' mean to you?' don't assume parents are aware of
the impact of the diagnosis, degree of needs or future issues. Answer
questions with clear conveyance that you know the limits of prediction.
Sample script: 'Mrs. Jones, when you hear the words,'mentally
retarded,' what does that mean to you?'
Sample clarifying script: 'Kiko, although we don't have a
crystal ball, here's what I know in my experience, and in all
that I have read or heard about: Yu-kun is 9 years old, yet has skills
similar to 5-year-olds. We have never seen children of his age, with
this rate of progression, catch up' to his classmates in the
way he problem solves and reasons about the world around him. I
would of course be thrilled if it ever occurred. But what we do know
is this: Yu-kun needs us to think very seriously about what goals we
have for him, and what the next steps are to teach him the skills he
needs to be as independent as possible in the future.'
· Clarify and contrast: what it does NOT mean with
what it DOES mean.
Sample script: 'Brendan can and will continue to learn and
add to his skills. But, from what we know about how children
develop, we believe Brendan will not understand the world and solve
problems in a fully adult way. He can love and be loved, and we do
expect he will be able to have a job and contribute to the world around
him. However, Brendan is likely to need additional support for certain
activities and in certain environments. In some environments, he may
need a lot of adult support, whereas for other environments and situations
he may need very little help. The supports that he needs will
depend on the demands placed on him in a specific environment. You
may wish to make use of community or public agencies that are out there
to help Brendan, in addition to resources in the school district. Our
goal is to help Brendan be as independent as possible as an adult.'
· Use person-first language throughout the session. This
entails always appending the term; for example, rather than saying 'mentally
retarded child,' say 'child with mental retardation.' This distinction
is important. Mental retardation is one of the descriptors of the person
and does not in any way summarize who this person is, nor does it define
them totally. Families are very sensitive to this issue, as well they
Script: 'Children with mental retardation often require
' 'Adults like Johnny who have mental retardation
· Reference causation and lay to rest any ideas
about 'who is to blame' if, in this case, it is possible.
Potential Script: 'Some parents I know tell me the first thing
they thought about when hearing about their child having mental retardation
is, 'I caused this.' ( WAIT FOR RESPONSE.) What we know from years
and years of research is that this can happen in any family, and most
often we cannot find any cause. Sometimes we can figure out what happened
to cause a child to not develop normally, but most often we can't.
It isn't something you did, or didn't do, Maria.'
Use 'active listening skills': WAIT, wait and WAIT. Allow the
parent to lead the discussion forward. Do not be defensive or undone
by the responses: grief, denial, shock, anger, guilt. Your job is not
to force acceptance, your job is to continue to use active listening,
conveying confidence, competence and compassion. Your job is to be honest
and compassionate, focusing on the unique characteristics of the child,
not over-emphasizing this label.
Sample Script for anger and denial: 'Mr and Mrs. Chen, I know
this is hard to take in. I have had quite a bit of experience working
with children like Philip [or if you are a beginning psychologist:
I have had quite a bit of training on how to make this determination],
but no one can deny you know your child better than anyone.
You can take this information I needed to tell you and put it away
for now. That's ok. For some families, that is the best next
step. If you find out later your child needs extra services, you'll
know about agencies and services that can help him. He is such a wonderful
little boy and we do so enjoy working with him. You have provided such
a warm and loving home for him.'
· Bring up the family context: 'Are there people
you want to tell about this: grandparents, family friends, aunts/uncles,
brothers/sisters? Can I help you in any way with this process?' Convey
understanding that telling, or not telling others is equally valid.
Sample script: 'Some families tell me that one of the hardest
parts of hearing this news is figuring out what, if anything, they
want to say to grandparents, aunts, uncles, neighbors, people in the
grocery store, and so forth.' WAIT FOR RESPONSE.
· Give some ideas of the future. Some families may
ask for even very distant future predictions, even in very young children
(employment, driving, where the child 'must' attend school, marriage,
independence, etc.). Remember, understanding of the impact may require
clarification. Do not make assumptions. Allow parents to lead, giving
them the information they seek. Do not offer more than they request.
Sample script: 'Does this mean an automatic special school
or class for Fletcher?'
"No it does not. We will all meet together at the IEP meeting
and decide what Fletcher is ready for next. He can stay with the group
he is with now, or we may all decide it's time for us to look around
for other services and places to meet the goals we all determine are
the next ones we want to focus on helping Fletcher achieve. You will
always maintain your role: helping us understand Fletcher better. We'll
work together, Alison. Just like we have in the past.'
· Allow the family to continue leading the discussion,
talking out their understanding of what they heard. Use your 'active
listening skills' to extend the conversation and promote the parent as
the acknowledged leader of this interaction.
to Conference Ending
· Tell what comes next:
1. Going home (It is critical at this step to refer to the fact
that the child is no different than before the message and to let the
parents know you are available by phone)
Sample script: "When you get home, Mrs. Jones, and you
think back on all we've talked about, there is something you may wish
to remember that I learned from another mother. She tells me she was
very overwhelmed later at home, her little boy came up and climbed
on her lap and said, 'Can you play yet, Mom?' At that moment she
says she realized something very important: her son was the same son
she had always known. He hadn't changed, she had just come to a new
understanding of what he might need in his life. If you think of something
you want to talk about, you've got my phone number. Please just give
me a call."
2. Coming back (Let the family know that the upcoming IEP meeting
is to collaborate and plan next steps, not to repeat this session)
Sample script: "At the IEP meeting in two weeks there
will be myself and...(state who and their positions) I will need to
tell them all briefly about Billy's assessment results. You will hear
me use the term 'mentally retarded range' once or twice as I share
what we know. But then, we will immediately start talking about next
learning steps we feel Billy is ready for. We will ask your advice
on what you would like to see next for Billy, and we will share with
you what we think should be next. Together we will make decisions about
our teaching goals for him. Please, Mrs. Wright, if you think of any
questions, jot them down, or anything you would like us to know. Remember,
you can bring anyone you would like with you. Some families choose
to bring a friend, a parent, a brother or sister. This is fine. Some
people choose to make an audio (or video) recording about the meeting
so they can share it with family members who weren't there. This is
fine as well. Just let us know in advance so we can plan room arrangement,
3. Give a general idea of what you will contribute (ideas on
next-step goals, agencies and information sources family may wish to
Sample script: "Arturo, by the time you come back
for the IEP meeting, I can have a list of resources you may wish to
keep in mind for Miguel. There are books, websites, parent groups and
agencies that can be of help to you and Miguel as he progresses. We
will also tell you about the Regional Centers. These are California
agencies for persons who have developmentally disabilities. They provide
a lifetime of support opportunities for children they determine to
be eligible. They can provide help getting a job, help finding living
arrangements, and in general helping the person be as independent as
possible..." (mention respite, in-home behavior management, funding
for diapers, estate planning or any other of the services you think
the family will want to know about ).
· Stand up, then contrast hearing these findings
unprepared, in a meeting with lots of people, with what has just transpired.
This can be very helpful in forming a good future working relationship
with the family, regardless of the reaction of the parents when they
heard the news. If you used a transition phase to delivering the hard
news, restate how hard this was to say, and to hear.
Sample script: "Mr. And Mrs. Sanchez, I'm glad
we had the opportunity to meet together before the upcoming IEP. I
wouldn't want you to hear this for the first time at that meeting.
Thank you so much for coming in today. (I know how hard this meeting
must have been for you. I know this was certainly hard for me to tell
· Physical closure: Offer a two-handed handshake,
hug, or very brief physical touch if appropriate to the relationship
you have established, recognizing the cultural, ethnic and other boundaries
that may need consideration
The above pacing guide is based on years of delivering this message
on a nearly weekly basis to families with different characteristics. Bear
in mind: no one script will work for all families; what would be appropriate
for some would not work well with others. The most important thing to
remember is the meta-messages. If you believe these tenets, you will
find the words and develop the pacing that works best for you.
This guide was developed to assist you, the reader, in finding
or clarifying your own 'best practice.' It cannot be
employed mechanistically, or by memorizing scripts. To do so would
violate the tenets that are the underpinnings of this process.
The authors wish to acknowledge Deborah Holt and Betty Bollier,
California Department of Education, Diagnostic Center Director and
former Assistant Director, who continue to generously support and encourage
all our efforts, and justly deserve commendation for their leadership
and emphasis on treating families with dignity, respect and sensitivity.
We are indebted to Dr. Bonnie Kraemer, University of New Mexico, for
her insightful comments and critique of the process described in this
paper. Additionally, we would like to acknowledge the following colleagues
at the California Department of Education, Diagnostic Center, South
who have generously shared their experiences: Harvey Gurman, Judi Burkhartsmeyer,