Use this space to continue our conversation on Let’s Talk Marketing, so that we support each other in this work. Ask/answer questions, share successes and challenges, and respond to each other!
(If you have any trouble posting, email your questions to julie.halitzka@uky.edu, and we will post for you.)
Studies show that there are specific research questions and information that are valued more by Black and Hispanic parents and those that are universally valued by all parents of children with Down Syndrome. The table below highlights these questions.
| Research Priorities for All Parents of Children with DS | Research Priorities for Black and Hispanic Parents of Children with DS | |
| Benefits and drawbacks of different prenatal testing/screening options | Yes1 | Yes: Black parents raised concerns about possibly receiving less information about prenatal screening options than White counterparts. |
| Benefits and drawbacks of different treatments for common medical issues experienced by people with DS (such as heart defects, gastrointestinal defects, etc.) | Yes1 | Yes |
| Impact of prenatal care and insurance coverage options on miscarriage and stillbirth rate | Yes: Black mothers noted specific concerns about higher rates of maternal morbidity and mortality during pregnancy, and Hispanic mothers who were recent immigrants noted concerns about insurance coverage. | |
| Benefits and drawbacks of different feeding strategies, like breastfeeding, pumping, formula-feeding, and supplementing, and methods to optimize feeding and weight gain in children with DS | Yes2 | Yes: Black mothers noted specific concerns about historic discrimination in breastfeeding. |
| Impacts of different social determinants of health on short and long-term outcomes for people with DS. | Yes3 | Yes: Hispanic parents, particularly among those of lower socioeconomic status, raised concerns about health insurance options. Black parents raised specific concerns about the impact of marital status. |
| Impact of early connection to parent support and advocacy groups on all members of the family (including mother, father, siblings) | Yes4,5 | Yes: Black and Hispanic parents wanted additional information about the long-term impact of racially and ethnically concordant sub-groups within local DS organization |
| Outcomes and potential benefits of peer mentors and DS organizations and available supports at the moment of diagnosis | Yes1 | Yes: Black and Hispanic parents added specific focus on peer mentors with racial and ethnic concordancy. |
| Best treatment options for psychological support and counseling for parents following a DS diagnosis | Yes5 | Yes |
| Impacts of different early intervention strategies on meeting developmental milestones and long-term outcomes | Yes1 | Yes |
| Benefits and drawbacks of raising a child with DS to be bilingual, including sign language | Yes3 Parents of children generally express they want this information about sign language instruction. | Yes: Hispanic parents who are bilingual or Spanish-speaking specifically expressed an interest in this information. |
The Lucky Few Podcast focusing on “More Than A Moment,” w/Kelli Caughman: https://www.theluckyfewpodcast.com/episodes/ep102-kellicaughman
This course is designed to share recommendations and strategies for advocacy organizations to better support Black and Hispanic new and expectant parents by sharing the research findings they care the most about.
In this course, we will:
This training/learning course contains 10 recommendations. Each recommendation includes overall findings, implementation strategies/solutions for improvement, additional resources, knowledge checks, etc. It should take you approximately 1 hour to complete. You can pause at any time and go back to finish the module where you left off.
When referring to Black parents of children with Down syndrome in this course, we are describing parents who identify as Black, African-American, of African descent. When we refer to Hispanic parents of children with Down syndrome, we are referring to parents with ancestry from Spanish-speaking countries.
Research shows significant health disparities exist when comparing Black and Hispanic children with Down syndrome to White children with Down syndrome and more limited access to services and support.1–3
One problem is the extent to which families of color learning about a diagnosis receive the latest accessible and research-based information about Down syndrome from their medical providers. The moment of diagnosis is the first point on the life course, often described as a flashbulb memory that is remembered with vivid clarity for decades.4 That moment frames the whole experience and establishes a trajectory for understanding the condition and accessing services and healthcare.
Research shows that families of children with Down syndrome are able to cope better when they receive information about the condition in that moment; however, new and expectant parents often experience trauma when they receive limited or no additional resources or support systems during that vulnerable time.4 Parents also experience trauma when the information is exclusively negative, so they also need positive information to be included.
Therefore, it is essential that all new and expectant parents of children with DS receive accessible, understandable patient-centered outcomes research (PCOR) to make informed decisions about healthcare and to access support and services.
Take a deeper dive by listening to the results of research presented by Dr. Skotko and Albert Pless.
1. Ansong EO, Jones K, Santoro SL. Timing of Referrals to a Down Syndrome Parent Group by Race. Pediatr Qual Saf. 2023;8(1):e632. doi:10.1097/pq9.0000000000000632
2. Chung J, Krell K, Pless A, et al. Healthcare experiences of patients with Down syndrome from primarily Spanish‐speaking households. Am J Med Genet A. 2023;191(8):2132-2141. doi:10.1002/ajmg.a.63250
3. Krell K, Pless A, Michael C, et al. Healthcare experiences of patients with Down syndrome who are Black, African American, of African descent, or of mixed race. Am J Med Genet A. 2023;191(3):742-752. doi:10.1002/ajmg.a.63069
4. May CP, Dein A, Ford J. New insights into the formation and duration of flashbulb memories: Evidence from medical diagnosis memories. Appl Cogn Psychol. 2020;34(5):1154-1165. doi:10.1002/acp.3704
The Program of All-Inclusive Care for the Elderly (PACE) is a partnership with the Department for Medicaid Services (DMS) and the Department for Aging and Independent Living (DAIL).
PACE is a fully-capitated health program that provides integrated care to eligible older and disabled adults who need nursing facility level of care but prefer to remain at home. The PACE organization is paid a fixed amount per enrollee to provide all the individual’s care needs.
The Program of All-Inclusive Care for the Elderly (PACE) is a partnership with the Department for Medicaid Services (DMS) and the Department for Aging and Independent Living (DAIL).
PACE is a fully-capitated health program that provides integrated care to eligible older and disabled adults who need nursing facility level of care but prefer to remain at home. The PACE organization is paid a fixed amount per enrollee to provide all the individual’s care needs.
Welcome to module three of our Assessment Training. We are excited to hear what you learned about the child you observed, yourself, and the process of observing. In this module, we will build upon the knowledge you gained in the first two modules and identify ways to work with families during the assessment process.
Reach out to the Course Facilitator or use the Contact Us button at the bottom of each page.
This course is the second in a series of courses on assessment. Take a moment to gather your notes and assignment from Authentic Assessment for Early Childhood: An Introduction and Authentic Assessment for Early Childhood: Planning Learning Experiences. You will use the application activities from both courses to complete your application activity.
“Observation…the process of observing, recording, and otherwise documenting the work children do and how they do it, as a basis for a variety of educational decisions that affect the child, including planning for groups and individual children and communication with parents…requires teachers to observe and analyze regularly what the children are doing in light of the content goals and the learning processes.” NAEYC (1992)
In the previous module, we asked you to create a lesson plan that focused on the needs of a child you work with.
Please take a few moments to reflect on how that lesson plan worked for you and the students identified in the lesson plan.
Add your responses to your handout.
Reference:
Bredekamp, S. & Rosegrant, T. (Eds.). (1992) Reaching Potentials: Appropriate Curriculum and Assessment for Young Children, Volume 1. NAEYC.
We have talked about the process of assessment over the last two modules of this course. The process of authentic assessment is: observe, analyze(reflect), plan, implement, reflect, and so on. You are constantly observing. Then you must reflect/analyze what you see, plan to meet the needs of each child, implement your plans, reflect on what you see then, and do this process over and over again.
You may think all these steps would make it difficult, but you are probably doing most of them already and weren’t thinking about it in this way.
Many of us may work with children who have difficulty transitioning from free play to group time. Watch as Draco transitions and answer the questions as you continue through the content.
Video must be watched entirely in order to progress through the course. You do not need to watch any related videos at the end.
What did this teacher do that worked well to help Draco transition?
What could she have done differently?
If Draco was a child in your class, how would you help with this transition?
Are there children in your class who have difficulties transitioning, how can you help them? Write a short list of things you could do.
Implement some of the transition plans you listed above. Give these ideas a chance to work before you discard them. Encourage parents or other caregivers to try some of these ideas at home or in other settings if they see the same difficulties.
Did any of your transition ideas work well? What else can I try if they didn’t?
Authentic assessment is tied to children’s daily activities, supported by professional development, and is inclusive of families; it should be purposefully used to make sound decisions about teaching and learning, identify significant concerns that may require focused intervention for individual children, and help programs improve their educational and developmental interventions.
Involving families in early childhood programs is important to support positive development. Watch this short video about the importance of involving families in your child care program. Video must be watched entirely to progress through the course.
As you can see from the objectives, in this assessment training we will focus on obtaining and sharing information with parents.
Families should be involved in the assessment cycle, before, during, and after children attend a program.
Gathering information from families will allow teachers to learn more about a child’s strength’s and needs as well as what might work best for the family and child to help them succeed. Families who feel comfortable interacting with teachers are more likely to share when they have concerns and be more receptive to a teacher’s concerns.
References:
Colorado Department of Education. (2022, February 7). Results Matter video Library. Retrieved March 18, 2023 from https://www.cde.state.co.us/resultsmatter/rmvideoseries
Check out this video about Finley’s Parent Teacher Conference.
References:
Raisingchildren.net (2021 July, 26). Effective Communication with parents and Carers: For Professionals. https://raisingchildren.net.au/for-professionals/working-with-parents/communicating-with-parents/communication-with-parents
