Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. This month’s question is: I am a new mother and my baby was diagnosed with Down syndrome. What resources and research are available to help me and my baby? This edition of Answered Questions includes items that discuss research that contributes to health and quality of life-related outcomes for adults with intellectual and developmental disabilities (IDD); research on augmentative and alternative communication (AAC); physical activity and sedentary behavior in children with Down syndrome; a peer to peer health messages program; an informational guide for parents and families of children with Down syndrome; an article for teachers of children with Down syndrome; COVID-19 and Down syndrome; and more. More about Answered Questions.
NIDILRR-Funded Projects:
The project, Can You Hear Me Now? Listening to People with Intellectual and Developmental Disabilities in Health Research (in English), conducts research that contributes to the improvement of the long-term health-related function and quality of life outcomes for adults with IDD, such as Down syndrome. Research and development activities from this project include adapting diagnostic, health, and health-related quality of life measures; determining the prevalence of mental health conditions among people with Down syndrome and other IDD; developing best practice guidelines for psychotherapy for adults with IDD; and more. This center engages people with Down syndrome or other IDD to ensure the quality and relevance of the work done at the center. The Center has produced consumer-friendly resources (in English), such as videos and factsheets, on self-advocacy, mental wellness, seeing the doctor, and setting health goals, along with resources for the professionals who support people with Down syndrome and other IDD.
Children and adults with Down syndrome may experience communication disabilities and may require assistive technology to communicate with the world around them. The Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (The RERC on AAC) (in English) conducts rigorous research for designing effective AAC technologies and interventions, develops and evaluates innovative AAC engineering solutions driven by consumer needs, and provides comprehensive training and dissemination to ensure that all individuals, including children and adults with developmental disabilities, such as Down syndrome, have access to effective AAC to enhance their communication. This Center works to enhance the communication of and increase the participation of people with communication disabilities, including Down syndrome, in education, employment, healthcare, and community living.
From the NARIC Collection:
The article, Physical activity and sedentary behavior among US children with and without Down syndrome: The national survey of children’s health (in English), discusses a study that investigated whether children with Down syndrome have differing physical activity and sedentary behavior levels in comparison to children without disabilities. The findings highlighted that children with Down syndrome were less likely to engage in regular physical activity in comparison to children without disabilities and were less likely to engage in regular physical activity among all children with developmental disabilities/special healthcare needs. The researchers concluded that children with Down syndrome are in urgent need for interventions/programs that promote physical activity.
Research In Focus:
People with intellectual and developmental disabilities (IDD), including Down syndrome, may require supports and services to live and work in their communities. The article, Peer to Peer: Training Peer Health Coaches to Lead a Health Messages Program for Their Peers with Intellectual and Developmental Disabilities, discusses a NIDILRR-funded study that tested a wellness program run by peer health coaches with IDD in collaboration with staff mentors from community-based organizations. The researchers found that the wellness program led to several positive results for the participants with IDD, including an increase in their physical activity and hydration knowledge, an increase in their social support for engaging in exercise and physical activity, and an improvement in their total health behaviors. This article is available in English.
For Families:
The guide, Down Syndrome Today from Down España, provides information for parents and other family members on Down syndrome, including its history, information for new parents, diagnosis, health information, and more. The guide also discusses what the future of a person with Down syndrome may be like and the life of people with Down syndrome in the 21st century, a life of independent living and autonomy, and the supports that make this possible. Finally, the guide discusses the life course of people with Down syndrome and includes information on active aging for people with Down syndrome.
Education:
A great deal is known about the effects of Down syndrome on growth and development, there is still a lot to be learned about the implications for teaching and learning. The article, Educating students with Down syndrome, is written with educators in mind and shares the latest knowledge of the main characteristics of learners with Down syndrome, inclusive practices, valid assessments to evaluate the learner’s progress, the importance of evidence-based practices, and the expectations for future educators.
COVID-19 and Down Syndrome:
The article, Q&A on COVID-19 and Down syndrome (in English), is presented to help families care for a loved one with Down syndrome during the coronavirus pandemic (COVID-19). The article answers questions such as what is unique about the virus in people with Down syndrome, how to help prevent the spread of the virus, what to think about when making decisions, and what are the virus’ symptoms.
Resources:
- Down España is a not-for-profit organization in Spain that provides information, news, publications, and more for people with Down syndrome, their families, and the professionals who support them. Down España supports people with Down syndrome from birth and throughout their life course by providing information on education, inclusion, employment, health, and more. The organization also raises awareness about Down syndrome to increase the community inclusion of people with Down syndrome.
- Book 2 of a 2-book set, Off to a good start: A behaviorally based model for teaching with Down Syndrome. Book 2: Teaching programs (in English) shows readers how to teach hundreds of essential skills and address challenging behaviors in children with Down syndrome. Each chapter includes sections that describe behavior that interferes with learning and offers advice on how to access community-based services.
- The RERC on AAC’s YouTube channel (in English) has a plethora of videos to help consumers, families, and professionals learn about AAC. Topics include an introduction to AAC, AAC for aphasia, employment for people who use AAC, education and AAC, perspectives of users of AAC, and more.
Further Research:
REHABDATA:
PubMed:
International:
About Answered Questions Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned above is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects, From the NARIC Collection, and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked.
