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New and expectant parent breakfasts or “Expectant Parent Support Meeting”
New family socials and support/play groups
Offer opportunities for new families to engage as they are ready! Lgroup needs to walk the walk in terms of life long supports for individuals. For the parents this is reassuring, for the medical professionals it is reassuring.
New parent socials and other support/play groups
Special invitations to Buddy Walk and conferences, with First Call table
Assisting with outreach to health care community (with training)
Ask parents for names of their OB/GYN’s, geneticists to reach out
Survey parents in your group to find out who advised them positively or negatively to determine where to start. This can be formal or informal through FB groups.
Ask your professional advisors or medical professionals involved with your organization where to being.
Approach medical professionals whom your volunteers know personally
Assign an intern to do online searches for different medical professionals in your area
Look at the website for the professional organizations for different medical specialties. Show the “Find a Genetic Counselor” tool at NSGC.org
Build relationships of trust and respect between medical providers and the Down syndrome community. Podcast with Katie Stoll about the value of relationships between advocates and providers
Convey professionalism and credibility of local organizations.
Provide presentations and distribute up-to-date information about Down syndrome.
To better support expectant parents, it’s important to understand what screening and testing options are currently available. Because the prenatal testing landscape is always changing, some confusion may surround different screening options. For example, when cell-free DNA was first released in 2011, some media reports gave the impression that the tests were diagnostic when they are actually better screening tests that can have false positives at times. Watch the video below to learn more about the tests so that you can have a better understanding when speaking to clinicians and expectant parents.
There are a number of reasons why prenatal medical outreach is an important priority for patient advocacy organizations and advocates who serve people with genetic conditions. Let’s explore them below:
Expansion of Prenatal Screening
Prenatal screening has been consistently expanding over the past decade as the technology has evolved since the release of cell-free DNA/NIPS/NIPT in 2011. Learn more about this technology from the ACOG Cell-free DNA Prenatal Screening Test (Infographic). In addition, screening has been adopted more into practice since the the American College of Obstetricians and Gynecologists (ACOG) recommended in 2007 that all women be offered screening regardless of age, and ACOG outlined in 2016 how cell-free DNA screening can be utilized. For a full discussion of the evolution of prenatal screening, see the Hastings Center Report. Fundamentally, we can anticipate that the majority of families in the future will learn that their child has Down syndrome during pregnancy.
Defining moment for families
Dr. Brian Skotko describes the moment of receiving a diagnosis as a “flashbulb memory,” a memory people can describe with near perfect clarity years later. This moment creates the emotional framework for how expectant parents receive the news. Unfortunately, research by Nelson-Goff showed that 35% of patients reported a negative experience when their clinician delivered a prenatal diagnosis of Down syndrome compared to only 11% reporting a positive experience (2013). So for every one parent having a positive experience, three are having a negative experience. One of our goals with the prenatal medical outreach program is to give clinicians the resources and support they need to help make sure families have a positive experience.
First point on the life course for families
For many families, a prenatal diagnosis is the first point on the life course, and providing them with access to supports and services from the start can help improve longterm health outcomes and emotional well-being.
Limited training for clinicians
Medical professionals must focus on a broad array of topics in medical school from best practices for performing a c-section to treating endometriosis. This means that they may not have gotten much time to focus on genetic conditions, particularly information about life outcomes beyond common medical issues. Research by Cleary-Goldman showed that 45% of practicing obstetricians rated their residency training regarding prenatal diagnosis as “barely adequate or nonexistent.” Therefore, they may likely value additional tools to discuss these conditions.
Access to resources for underserved populations
Until the past few years, people with Down syndrome who were black or Hispanic had much lower life expectancies than white people with Down syndrome. This disparity was not because of increased medical conditions but was largely because of disparities in access to supports, services, and healthcare. Therefore, it’s critical that families from all ethnicities and cultures have access to information about available services right from the start. Our Lettercase resources are translated into 10 different languages and are recommended in the NIH HealthReach database for immigrants.
Provide up-to-date, balanced, accurate, and medically reviewed resources
The medical community and expectant parents need information that addresses the concerns of patients, medical providers, and the advocacy community. Research by Sheets and Levis, show that expectant parents want to learn about medical issues and also supports and services like early intervention. They also want to see photographs of people living with the conditions and to get information about family outcomes, adult life, and recreation to provide a more balanced view of what life is like for people living with genetic conditions. In addition, clinicians want resources that are recommended in guidelines, resources that cover medical issues, and resources that cite peer-reviewed research when making claims about life outcomes. Meanwhile, disability advocates want materials that get beyond the medical model of disability to also cover life outcomes, and they want materials to use respectful language and imagery. Prenatal medical outreach efforts can ensure that clinicians have access to credible and balanced resources to give expectant parents the information they need.
Build trust, respect, credibility and professional relationships between medical provider and the patient advocacy community
Ultimately, medical providers can benefit from a closer relationship with the patient advocacy community so that because advocacy groups can provide reputable contact information and inform clinicians about the most helpful sources of information. In addition, advocacy organizations can benefit from closer relationships with the medical community so that they can learn from the medical expertise and share helpful resources for expectant parents with the medical providers. As these relationships of trust grow, they can start to offer presentations together, serve as trusted advisors, engage in community service together, and more.
The Lettercase National Center for Prenatal and Postnatal Resources at the University of Kentucky’s Human Development Institute is the nation’s clearinghouse and comprehensive training center for sharing accurate, balanced, and up-to-date information about genetic conditions. Lettercase builds bridges between the advocacy and medical communities and leads the effort to make sure all expectant parent and providers have the resources and support they need at the moment of diagnosis.
Watch this video and think about how this is a very common
experience for people with intellectual/developmental disabilities. How would you feel if this were your life?
Devaluation is not the same as one’s personal opinion of a
person or group of people
Social devaluation is
pervasive
– widespread, rampant
persistent
– sustained, incessant
potent
– mighty, influential
Universal devaluation
We
are hardwired to notice difference, to discriminate information
We
have been socialized to certain ideas and values
Even
kind, enlightened people devalue others!
Devaluation
is universal – ALL OF US devalue
Unconscious devaluation
Devaluation
can be conscious, but we often think poorly of people who overtly share
their devaluing ideas
Devaluation
is more often unconscious, buried
Devaluation matters
❌ Devaluation explains why people
don’t have equal access to the good
things in life that others do
✔️ Being devalued results in the likelihood
that bad things will happen to you, that you will be treated in ways
that wouldn’t be tolerated for/by valued citizens
There is sometimes the misconception that if a training is being offered online, then quality is sacrificed. Quality in a training comes from the planning, organization, and presentation of content, regardless of whether a training is in person or online. With an increase in the demand of, and the number of people taking online training, it is important as trainers to remember quality does not come from the platform used, but rather the training itself.
As a trainer there are many resources available to help you evaluate the quality of your courses ; co-workers, other experts, Training Coaches, etc. Utilize these resources to refine content, adjust assignments, and to ensure regulatory compliance.
The beginning of a quality training session starts with meeting and maintaining any and all regulatory requirements. Ensure you are familiar with and meeting all requirements.
Trainers should also take continuing education courses that introduce you to new topics, keep you up to date on changing trends, and deepen your knowledge base.
Don’t forget! Your Child Care Aware Training Coaches are available to observe and provide feedback on your online training! On your handout there is a place to indicate who your Training Coach is and their contact information.
Resources to Support the Trainer in Quality Assurance:
Before getting started it is important to understand various terms that are utilized by Division of Child Care (DCC), ECE-TRIS and early care and education professionals in Kentucky.
Most training sessions that are non-face-to-face get a general title of “online”. It is important to note that there are some distinctions and definitions between the various types of training sessions.
Asynchronous Learning
Forms of education, instruction, and learning that occur at different times and in different places, and may be accessed individually by trainees.
Some examples of asynchronous learning include:
Web-based Online Courses– An internet browser-based learning which is also available on the local intranet. Web-based courses may adopt technologies such as streaming audio/video, webinars, forums and instant messaging.
Independent Study– An instructor-led approach where the instructor and participant are separated by place or time. An instructor assigns lessons and exercises, and participants work independently yet have regular contact with the instructor by phone or email communication.
Synchronous Learning
Forms of education, instruction, and learning that occur at the same time in real time, but they may or may not be in the same place.
Some examples of synchronous learning include:
Face-to-face/Classroom– An interactive, instructor-led approach where the instructor and participant meet in a classroom for a specific duration of time in a common location.
Teleconference/Conference Call – A conference held among people in different locations by means of telecommunications equipment, such as telephone or closed-circuit television.
Webinar/Video Conference– Short for Web-based seminar, a presentation, lecture, workshop or seminar that is transmitted over the Web. A key feature of a Webinar is its interactive elements — the ability to give, receive and discuss information.
Hybrid Learning
The term “hybrid” is also used to refer to a training session that is a combination of two types of training.
For example an independent study where the participant watches a recorded webinar and then completes assignments.
Typically with a hybrid, there is a face to face or live webinar training session, along with a component participants access and complete independently.
922 KAR 2:240. Kentucky Early Care and Education Trainer’s Credential and training approval.
Section 1. Definitions. (2) “Asynchronous learning” means forms of education, instruction, and learning that occur at different times and in different places, and maybe accessed individually by trainees. (6) “Synchronous learning” means forms of education, instruction, and learning that occur at the same time in real time, but not in the same place.
