Greeting A Down Syndrome Diagnosis with Competence Roxane Romanick, Executive Director Designer Genes of ND 10.24.17 Altru Health System’s Annual Healthcare Conference

1. You will leave this session with effective strategies to deliver diagnostic news that is manageable and helpful for families. 2. You will leave this session with more knowledge about the importance of parent-to- parent support and how to make effective connections. 3. You will leave this session with additional strategies to create partnerships with parents who find themselves on a new journey 4. You will leave this session with up-to-date, accurate, and balanced materials and resources relating to a diagnosis of Down syndrome. Session objectives…

Disclosure Statement I serve as the Executive Director for Designer Genes of North Dakota, a non-profit dedicated to supporting individuals with Down syndrome and those that love and support them. I have worked in the North Dakota Early Intervention system for 15 years. I have been a volunteer editor for Lettercase materials. I currently provide support for new referrals to Project Carson on the western side of the state. I have a prenatal diagnosis experience and have a daughter with Down syndrome.

Down syndrome Triplicate Copy of the 21st Chromosome Three types: Nondisjunction Translocation Mosaic Additional genetic material (partial or full) alters the course of development and results in the characteristics associated with Down syndrome. Genetically, Down syndrome is present at the earliest stages of pregnancy. Down syndrome

North Dakota and down Syndrome United States North Dakota Total Population 322,762,018 (2016) Total Population 757,952 (2016) Estimated population with DS 250,000 Estimated population with DS 575 Number of Births 3,978,497 Number of Births 11,314 Number of Births with DS Diagnosis ~5000 Number of Births with DS Diagnosis ~11.3 https://www.cdc.gov/nchs/nvss/births.htm http://cdn.dsegroup.org/files/reports/research/births-prevalence/usa/down-syndrome-population-usa-factsheet.pdf

So many options….

What Parents said… “I said no to any prenatal testing. My husband and I didn’t feel the results would change anything that we would do.” “I didn’t understand what the tests meant, so I just agreed to them.” “I needed to have all of the information I could get about our baby to make sure I was prepared.” “I didn’t know if I could handle a child with a disability.”

gold-Standard Information…From The Start Complete Consistent Non-judgmental Noncoercive Up-to-date/Accurate Toward concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives June 17, 2009 https://www.acmg.net/StaticContent/Resources/Consensus%20 Conversation%20Statement.pdf gold-Standard Information…From The Start

Effective Strategies… Before Decision to Engage in Screening Before Decision to Pursue Diagnostic Test Decide with mother who should be present when information is discussed Assure understanding of screening versus diagnostic tests Use accurate and up-to-date information to describe diagnosis that could be revealed through testing. Screening test results should be “conveyed as risk assessments and never as positive or negative results” allowing the parent(s) to determine their own personal risk. Review differences between screening and diagnostic test Discuss with the parent(s) what support and information they will need if the diagnostic test reveals that a diagnosis is confirmed Make a plan for delivering the news of a confirmed diagnosis http://www.brianskotko.com/documents/ajmgprenatalguidelinesfinal.pdf

Effective Strategies After a Confirmed Diagnosis… Consider timing of conversation for parent(s) Preferably delivered in person with both parents, dependent on mother’s wishes A health care professional who can speak knowledgeably about Down syndrome should be available for the first conversation. Present information about Down syndrome that is up-to- date and accurate Recommend parent-to-parent support/support network Exploration of all options available to parent(s) Arrange for needed follow-up appointments and make plans to see the parent(s) soon. Referral could include specialities such as genetics, genetic counseling, maternal-fetal pediatrics, counseling, cardiology, social services, etc.

Effective Strategies…language makes a difference Avoid directive language (i.e. “you should”, “if I was you, I would…”) 1 Use up-to-date language (i.e. child with Down syndrome vs. a Down’s baby) 2 Consider the use of “and” instead of “but” (i.e. We know that your baby will be a girl and she will have Down syndrome) 3 Ask open-ended questions 4 Use partnership language (i.e. “We will figure this out together” vs “Good luck making a decision.”) 5 Include the partner (i.e. look and talk at both parties, ask both questions, etc.) 6 www.disabilityisnatural.com/people-first-language.html

Support for Clinicians… http://www.brighter-tomorrows.org/

Effective Strategies…Peer Support Chronic Health Conditions Addiction Behavioral Health Children with Disabilities/Special Health Care Needs Grief and Loss Business and Education Mentoring http://ipfcc.org/bestpractices/pee r-mentoring-research.html http://www.psresources.info/the- evidence

Quality Indicators for Peer Support… Maintaining frequent contact Maintaining strong knowledge of the content/system Promotion of healthy decision making Culturally competent Strong communication skills Ready and able to make referrals and connections Open to supervision http://peersforprogress.org/learn-about-peer- support/what-is-peer-support/

Parents of children with Down Syndrome can… Speak to the emotions that come with receiving a diagnosis Talk about the services and supports that have been helpful to them Point out what was the most helpful in the earliest of days with their new baby Cry with the parent(s) Model that there is life beyond the earliest days of the diagnosis Demonstrate tips and tricks that were helpful to them Share how they organize the new information that comes with a child with special health care needs

North Dakota and Minnesota Resources… Down Syndrome Resources Parent to Parent USA Alliance Members http://www.p2pusa.org/ Family Voices of North Dakota www.fvnd.org 1.701.493.2634 1.888.522.9654 Family Voices of Minnesota 1.866.334.8644 http://www.familyvoicesofminnesota.org/ Designer Genes of North Dakota www.designergenesnd.com 1.701.391.7421 Minnesota Down Syndrome Association www.dsamn.org 651-603-0720

Tips on Material Supports… Create with intent Throw out materials that are poorly copied and out-of-date Review materials for accuracy and balance once every 6 months with external consumer input Include something personal – a letter from a family, a small journal, a small token, etc. Include family stories Be aware of who has published materials Examine for cultural/religious bias

Resources… Lettercase – University of Kentucky https://lettercase.hdi.uky.edu/ Global Down Syndrome Foundation https://www.globaldownsyndrome.org/ prenatal-testing-pamphlet/ Down Syndrome Diagnosis Network http://www.dsdiagnosisnetwork.org/ Down Syndrome Pregnancy http://downsyndromepregnancy.org/ National Down Syndrome Congress www.ndsccenter.org

Roxane Romanick, MSW, LCSW 701.391.7421 info@designergenesnd.com www.designergenesnd.com