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

2. 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…

3. 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.

4. 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

5. 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
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

6. So many options….

7. 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.”

8. 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, Conversation%20Statement.pdf
gold-Standard Information…From The Start

9. 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

10. 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.

11. 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

12. Support for Clinicians…

13. Effective Strategies…Peer Support
Chronic Health Conditions
Addiction
Behavioral Health
Children with Disabilities/Special Health Care Needs
Grief and Loss
Business and Education Mentoring
r-mentoring-research.html
evidence

14. 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
support/what-is-peer-support/

15. 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

16. North Dakota and Minnesota Resources…
Down Syndrome Resources
Parent to Parent USA Alliance Members
Family Voices of North Dakota
Family Voices of Minnesota
Designer Genes of North Dakota
Minnesota Down Syndrome Association

17. 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

18. Resources…
Lettercase – University of Kentucky Global Down Syndrome Foundation prenatal-testing-pamphlet/ Down Syndrome Diagnosis Network Down Syndrome Pregnancy National Down Syndrome Congress

19. Roxane Romanick, MSW, LCSW