Health Care Partnership Information Health Care Satisfaction Survey
Improving Delivery of Postnatal Diagnoses of Down Syndrome
Improving Delivery of Prenatal Diagnoses of Down Syndrome
Publications

The MHDSA Health Care Partnership was developed in 2004 to address the concerns of parents that they had not received the information and support they needed at the time of their children's diagnosis. Many also indicated that their children's health care providers did not have the knowledge, skills and resources needed to provide the level of care they required. The Health Care Partnership is working to bridge this gap by providing education and materials to health care providers through meetings, inservices, presentations, guest lecturing at universities, and publishing articles.

The ultimate goals of the MHDSA Health Care Partnership are twofold.  First, that all parents and expectant parents being told of a possible or actual diagnosis of Down syndrome are given this news with accurate information, sensitivity and support including information about Mile High Down Syndrome Association.  Second, that individuals with Down syndrome will receive health care that addresses the specific developmental and medical needs of those with Down syndrome and the best practices to address them.

The unique feature to the Health Care Partnership is that the program Coordinator, Sarah Hartway, RN, MS,  is both a pediatric health care provider and a parent of a child with Down syndrome and is therefore able to apply both the parent and the provider perspectives, sharing real-life experiences as well as the most up-to-date research findings and clinical guidelines.

Adam Hartway, age 9

In just one eighteen month period, the Health Care Partnership provided:

• 21 presentations to students of health care professions at 7 different university programs reaching over 700 students – the health care professionals of the future.
  
• 4 large educational programs together with our community partners for parents of children with Down syndrome on subjects addressing health, development and learning for a total of over 600 parent contacts.
  
• Meetings, inservices and presentations offering education to over 700 health care providers.

But numbers can only tell part of the story. Here’s what some of the participants in the Health Care Partnership presentations have said:

• “Thank you so much – I feel better prepared as a nurse and future parent”
  
• “Enjoyed hearing the personal views and experiences, helping share how to speak with parents – helps me see from parents’ point of view.”
  
• “Your presentation was a beautiful example of how personal and professional, intellectual and emotional can combine to shift outlooks as well as teach information.”

The ultimate impact of the Health Care Partnership is on the families of children with Down syndrome. We have had the good fortune to have heard directly from families who shared that when their health care providers told them their babies have Down syndrome, they also told them of having received recent education updates from the MHDSA Health Care Partnership. Parents have reported of hearing their babies’ diagnoses in a balanced, supportive manner and being connected to community resources immediately.

Our Down Syndrome Information and Resources notebooks now have more tools and resources than ever.  They still are full of preventive medical guidelines, Down syndrome growth charts and other resources but now also have Tips for Presenting the Diagnosis of Down syndrome in a supportive manner, Language Guidelines and more.  And this resource is available to health care providers free of charge.

Publications:

"Ancient History or Current Practice??" Sarah Hartway, Spring 2003, Colorado Pediatrician

"A Parent’s Guide to the Genetics of Down Syndrome," Sarah Hartway, Oct. 2007, Down’s Update

"Physical Therapy in Children with Down Syndrome," Sarah Hartway, Dec. 2006, Down’s Update

Mile High Down Syndrome Association has unveiled Virtual Visits™, a unique way to provide information and support to family members and professionals from the comfort and privacy of their own computers.  Virtual Visits™ allows website visitors to stream videos of parents, siblings, grandparents and self-advocates answering questions and sharing their own experiences.  Additional videos feature the Health Care Partnership Coordinator speaking to health care providers, which allows this valuable education to reach providers regardless of geographic boundaries.