According to the Centers for Disease Control and Prevention (CDC), Down syndrome is a condition in which a person has an extra chromosome 21 and “this extra copy changes how the baby’s body and brain develop”, which may cause mental and physical disabilities. There are three types of Down syndrome:
- Trisomy 21, which is the most common type of Down syndrome – each cell in the body has 3 separate copies of chromosome 21 instead of the usual 2 copies.
- Translocation Down syndrome, which accounts for about 3% of people with Down Syndrome – occurs when an extra part of whole extra chromosome 21 is present and is attached to a different chromosome rather than being a separate chromosome 21.
- Mosaic Down syndrome, which affects about 2% of people with Down syndrome – Some of the cells of people with this type of Down syndrome have 3 copies of chromosome 21 while other cells have the typical two copies of chromosome 21.
Down syndrome affects each person differently. Some people with Down syndrome may have one or more major medical conditions such as hearing loss, obstructive sleep apnea, and heart defects present at birth, among others. Just like their peers without disabilities, people with Down syndrome may live well and independently into their 80s or longer in the communities of their choice. They may require support to participate in their communities, live independently, or take advantage of the same opportunities as their peers. These supports may include supported competitive employment, family support, accommodations, financial resources, and supported housing, among others.
NARIC’s information specialists are often asked for information and resources about these supports for people with Down syndrome. This month, we are highlighting evidence-based consumer products from the NIDILRR community for people with Down syndrome, their families, and service providers, which may include guides, calendars, factsheets, and more.
Below, you will find just a few examples of evidence-based consumer products produced by the NIDILRR community:
- The Rehabilitation Research and Training Center (RRTC) on Employment of People with Intellectual and Developmental Disabilities (VCU-RRTC-IDD) provides needed information in employer practices that are associated with better employment outcomes for people with intellectual and developmental disabilities (IDD), including people with Down syndrome. The cornerstone of this research is a series of studies to examine the critical variables that can improve competitive integrated employment (CIE) outcomes for people with Down syndrome or other IDD. This RRTC produces factsheets and plain language summaries for people with IDD or Down syndrome and the employers who wish to hire them. Throughout the year, researchers from the RRTC host webcasts on topics related to CIE for people with Down syndrome and other types of IDD, employers, researchers, and service providers.
- Can You Hear Me Now? Listening to People with Intellectual and Developmental Disabilities in Health Research conducts systematic research that contributes to improving the long-term health-related function and quality of life outcomes for adults with intellectual and developmental disabilities (IDD). The research objectives are to: (1) adapt diagnostic, health, and health-related quality of life measures to increase self-report in adults with IDD; (2) determine the prevalence of mental health conditions and health outcomes among adults with IDD; and (3) develop best practice guidelines for psychotherapy for adults with IDD. This center creates clear language information products on a variety of health topics including mental health and helping people with IDD understand and participate in research.
- The National Center for Disability and Pregnancy Research (NCDPR) is a cross-disability initiative to address gaps in knowledge about pregnancy and disability, enhance the experience of pregnancy in women with disabilities, and promote optimal pregnancy-related outcomes for pregnant people with disabilities, including people with Down syndrome. As part of their work, researchers at NCDPR share their research results related to pregnancy among women with Down syndrome and other intellectual and developmental disabilities, including Advice and Facts for Mothers and Expecting Mothers with Intellectual Disabilities (PDF). NCDPR also shares evidence-based information for consumers, families, service providers, and other researchers through their webinars, including How Prospective Parents with Disabilities Can Prepare for Parenthood.
- NARIC’s Research In Focus series features reader-friendly summaries of the latest research from NIDILRR-funded projects. Each article presents an overview of a recently published NIDILRR-funded study, highlights important findings, and discusses implications or directions for future research. The articles below are just an example of Research In Focus articles related to Down syndrome:
- The article, The COVID-19 Pandemic Has Taken a Toll on Latinx Families with Children with IDD, but There Are Some Positives as Well, discusses a NIDILRR-funded study that explored the effects of the pandemic on Latinx caregivers’ perceived general health, mental health, and wellbeing and what factors, such as social and financial supports, were related to their wellbeing. This article is also available in Spanish.
- The article, People with Childhood Disabilities May Be at Higher Risk for Chronic Diseases as Young Adults, discusses a NIDILRR-funded study that looked at the prevalence of noncommunicable diseases for adults under the age of 40 with and without pediatric onset disabilities (PODs), such as Down syndrome, cerebral palsy, and other IDD, to find out which types of noncommunicable diseases were more common for these younger adults with PODs than those without PODs. This article is also available in Spanish.
To learn more about these and other products from the NIDILRR community, contact NARIC’s information specialists.