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

Prepare 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 all possible.

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 date.

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 issues.

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.

Beginning 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 child.

· 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.

Transition 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.'

Now:  Deliver 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 should be.

Script: 'Children with mental retardation often require supports when…' 'Adults like Johnny who have mental retardation have successfully....'

· 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.

Transition 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, etc."

3. Give a general idea of what you will contribute (ideas on next-step goals, agencies and information sources family may wish to pursue)

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 ).

Ending the Session

· 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 you.)"

· 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

Final Note

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, Brenda Steele.