Health
Care Partnership Information
What
is the MHDSA Health Care Partnership?
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.
What are the Health Care Partnership's
goals?
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.
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| Adam
Hartway, age 9 |
What makes the MHDSA Health Care
Partnership special?
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.
We are proud of our progress!
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.
What's new for the Health Care Partnership?
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
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