Sharing a diagnosis with a family

For professionals: Sharing a diagnosis with a family
By Julie Smith, Karen Fisher, and Tamara Le

Receiving a diagnosis of a child’s disability can be an incredibly emotional and stressful time for families.  As parents of children who have disabilities we would recommend that professionals adopt the following best practices when talking with parents about their child’s diagnosis.

Clearly state the diagnosis and pause to allow time for parents to process this information.  Remember how life changing this diagnosis may be for a family.

In plain language give a clear description of the diagnosis and provide specific information about what characteristics their child has that led to the diagnosis.

Be Clear. Be Positive. Be Hopeful.  Identify the child’s strengths and recommend appropriate therapies and approaches that build on these strengths.

Ask parents what aspect of the diagnosis they would like to discuss first.  If they are unsure, suggest options such as reviewing the assessments, learning more about the prognosis, or determining next steps.

Pause frequently during the discussion to give the family the opportunity to ask questions and process information.  Provide a note taker to assist the family.

Support the parents to take immediate action by recommending and prioritizing concise Next Steps. For example:

Refer to Early Supports and Services or to the Local School District and Area Agency. Provide contact information and explain the process for applying for services and/or determining eligibility for special education.

Refer to therapists and specialists who will best fit the needs of the child and the family (taking into consideration the family’s insurance, where the family lives, and their preferred approach for supports.)

Recommend a few well-regarded resources that parents can go to for additional information about the diagnosis.

Offer information about organizations that provide quality family support.

Give parents information about the approaches and therapies that are most likely to match the needs of their child, both at home and at school.

Be realistic with parents about the long journey that lies ahead. Explain that families cannot be expected to do it all alone and a supportive, collaborative team will be needed to help their child realize his or her full potential.

Emphasize the importance of maintaining high expectations for their child. Let families know that as their child progresses through therapy and individualized programs, the long-term picture will become clearer. Having a diagnosis is not intended to limit opportunities, but rather is an important first step in getting the supports and services that will enable their child to participate fully in all aspects of life.

 Make a follow up phone call to ask how the family is doing.  Allow time to answer parents’ questions and clarify information.  Ask the family if they need any support in taking the first steps discussed at the diagnostic visit.

Schedule a follow up visit to assess how the family is doing, review the progress of the first steps taken, and address any concerns.  At this appointment provide more specific information about resources and approaches.