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A Guide for Assessment > Communicating and Collaborating with Families

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This is Kristie Lofland.  I'm an Educational Consultant for the Indiana Resource Center for Autism and today we are going to talk about how to communicate to  the family when a disability is suspected and an assessment process needs to occur.

Having a child is a wondrous and exciting event.   Each birth is a unique and special time for every parent.  A new child brings joy, excitement and a sense of hope.   All parents have great hopes, dreams and expectations for their child.  It's natural to wonder what kind of person your child will turn out to be and hope for the best.  What's not expected, however, is to consider that your child is not growing or developing typically.   According to the American Academy of Pediatrics,  one out of every six children is diagnosed with a developmental or behavioral problem.

It can be very difficult to tell a parent that their child has a disability.  No one wants to have to tell a parent that and no parent wants to have to hear that.  However, there are ways to approach this in a professional manner with compassion and caring.  There are ways to be really helpful in sharing this information and to make sure that parents leave a meeting knowledgeable, informed and prepared to help their child.   We want to make sure that we approach the family in a professional manner with both compassion and caring.  Often the questions will arise as to when do we approach families when we suspect that there may be a disability or a developmental delay.   There is no hard and fast timeline.  However, you want to have a conversation within a reasonable time period. You certainly don't want to approach the parents with difficulties the child has been having after an entire semester or school year has passed.  Likewise, you would not want to approach parents based on a one-time occurrence unless, of course, it is an emergency or harmful situation.  Parents should be approached with concerns of  behaviors that are observable across settings by more than one person, that can be well-defined and that can be substantiated by well-kept data over a reasonable time period. In order for families to have a good reference point for comparison, make sure that you include typical developmental milestones when describing the child.  Express your concerns in common language that is easy to understand.  Avoid using professional jargon acronyms, abbreviations, etc.  Always describe the child's strengths first.   Give the family time to contribute to your conversation.  After all, parents know their child better than anyone else.  It is the parents who knew the child first and who knows the child best.  Follow the child's strengths with an honest description of the child's challenges.  Do not refer to the challenges as weaknesses and again avoid any professional or technical language in your description that could be confusing to a parent.   You may also want to discuss with the parent any academic or behavioral interventions within the general education environment that had been implemented with their child and what has been the response to those interventions.

Make sure that you speak clearly about the issues and listen carefully.  Allow the parent to be a full participant in information gathering, information sharing and decision-making.  This will strengthen the collaborative partnership with the family.  Focus on the reason for why you are having this conversation and that is to help their child.

The information may be overwhelming to the family.  You will need to give the family time to process the information.  They may or may not be ready or able to make a decision at this first meeting to proceed with getting permission for an evaluation.  They may need to go home and think and discuss the results of this meeting and then return for more discussion at a later time.  Parents may feel overwhelmed, alone and isolated.  They need to know that they are not alone.  There are many resources and people to help the parent determine what is best for their child and their family.  Therefore, it would be helpful to have printed information available for the family at the meeting.  Treat the families with respect, trust and extend an openness to the family that you are there to answer any questions, to guide in any direction they need to go and what you want to do is to help them with their child and to answer their questions.

As a disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening and consuming task.  They must raise the child they have while letting go of the child they dreamed of.  We need to remember that this is a frightening time for parents and that we must help them every step of the way.

Just a thought of having their child evaluated can cause families a great deal of anxiety.  A multidisciplinary evaluation is more useful when the parents understand the purpose, strengths and limitations of the various procedures, and if they have realistic expectations for the value of those results, then it can help them understand the process better.  Parents who understand the nature of the evaluations will be less apprehensive and better able to effectively participate in both the evaluation and any resulting services for their child.

The purpose of the evaluation is to obtain information about a child's learning, a child's behavior or about the child's mental health.  In school settings evaluation can be requested either by parents, by school personnel or by older students who are of majority age, 18 or older.  Most often evaluations are conducted to determine if the child is eligible for special services.  An evaluation can also be conducted to help develop teaching or behavior plans if there are significant mental health concerns or to determine eligibility for gifted programs or for school readiness.

When school teams consider special education services, evaluations must be conducted according to due process procedures.  Four steps that we need to remember: 1) parents of minor students must be notified of the need for evaluation, 2) parents need to be invited to a planning meeting,  3) parents must give their written consent for the evaluation, and 4) students who have reached the age of majority must be included in the planning meeting and give consent.

Parents must always be invited to a conference to discuss the need for the evaluation.  They should be given ample notice of a time and a date of the meeting.  Parents should be encouraged to ask any questions about the reason for the evaluation and how the results will help their child.  Remind parents that it's sometimes helpful to bring a trusted friend or family member to the meeting for moral support or to help clarify questions.  If parents do not understand all the issues or need more time to think about the evaluation, give them that time before asking them to make a decision.

When we look at evaluation, sometimes those evaluations could be school-based or they could be community-based.  With school-based evaluations and community-based evaluations, some of the same considerations apply whether the evaluation is conducted in the community or in the school.  Parents need to understand why and how that evaluation will help their child regardless of where the evaluation is conducted.  Parents may want to set up an appointment with the person who's going to conduct the evaluation before the actual evaluation is conducted in order to ask questions and to feel comfortable with the whole process.  We want to make sure that parents understand who's going to receive those evaluation results once that evaluation is conducted.  If the evaluation is going to be conducted in a community-based program such as the psychologist's office or a doctor's office, the parents will want to make sure that they check with their health care coverage to see what cost may be incurred.  A school-based evaluation, there is no cost.   Also, a parent should be encouraged to check for services that are free particularly if the evaluation addresses school-related issues.

When we're looking at a comprehensive evaluation, typically we look at these things: there may be standardized tests given; there could be rating scales; there could be self-report scales; there could be observations conducted; or there could be interviews conducted.  Standardized tests are often used to compare an individual's performance to an appropriate peer group.  These tests are normed using standard conditions, meaning that they use prescribed instructions, materials and scoring to ensure that there are consistent and accurate measures. Rating scales are most often used to determine if certain behaviors or skills are present or typical of a student.  Ratings depend upon the perceptions and opinions of the rater.  Self-report scales are used with older students who are asked to provide ratings of their own behavior or skills and are often used in conjunction with teacher or parent rating scales.  Observations are usually conducted by designated school personnel who can gather information about student's learning and behavior by directly observing the student in natural settings, such as the classroom or with social interactions in a school environment.  With interviews, typically it's a direct interview with the student that enables the students to provide information about their histories, their relationships, there concerns or their goals.  Other relevant information can be gathered by interviewing parents or teachers. A comprehensive evaluation is when the psychologist selects those procedures and tools that will answer the referral concerns.  For example, if the referral was concerning poor reading skills, low self-esteem, etc.  The information gathered should include a review of what is already known, new information about the areas of concern and verification of life factors that may affect the evaluation.  The comprehensive evaluation could include one or several of the evaluations that I just described.

Also, the professionals involved in the evaluation process typically will provide the family with both the verbal and written report.  They should be available to answer any questions that a family may have.  Questions that families may frequently ask and that professionals should be prepared to answer are: How will the school use this information to help my child?  How can I use this information to help my child?  Who else, if anyone, will receive this information?  How long will the report of this evaluation remain in my child's school records? How can we be sure that this information is accurate and fairly represents my child's ability or personality?  Are these results surprising or consistent with my observations of my child? and How do these results help address my concerns about my child?

When presenting information to the family always have a written report to provide to the family at the time.  Refrain from using any professional jargon or abbreviations that families would not understand.  Always describe the strength of the child first.  Discuss the child's profile of strength and challenges before we give any type of a label.  And, always, always describe the child first and the disability second.

Professionals face a challenging task when discussing a suspected disability with families.  The message is challenging for the professional to deliver, and also challenging for families to receive.  As families and professionals work through this, it is important that they establish an effective and collaborative relationship with open lines of communication.  Communication should be frequent and ongoing. Families should be invited and encouraged to ask questions, provide input, and participate throughout the process.  The webcasts, links, and documents in this section provide information and resources that support open communication and collaboration between professionals and families. 


Links

The Easter Seals Ages and Stages Project
Offers families an online developmental assessment tool to use in their homes to identify potential concerns. The tool is easy to use and is customized to your child's age. Great for kids 0-5.
http://www.easterseals.com/site/PageNavigator/ntlc10_mffc_homepageasq.html

Talking to Parents about Autism - Autism Speaks 
A video that provides educators with information on how to approach the topic of a potential development delay with parents.
http://www.youtube.com/watch?v=xaWUsXk4nD8

Illinois Early Learning Project: Communicating with Parents during Sensitive and Difficult Situations
A website that provides professionals with various resources that highlight the importance of parents and teachers working as partners and how to communicate effectively with one another.
http://illinoisearlylearning.org/chat/stephens/sup.htm#addres


Documents

Sharing Concerns - If You Suspect a Developmental Delay or Autism, Speak Up!
A document that covers the do's and don'ts when addressing concerns with parents regarding their child's development.
Download Document (PDF)