Resources

PEDIATRICS

• AAP Guidelines

ADULTS

• Adult Guidelines
• Evaluating Challenging Behaviors in Adults with Down Syndrome
• Spanish Version
• Portuguese Version
• Primary Care Provider's Guide to Women's Health and Down Syndrome

HEALTH AND HEALTHCARE

• Regression
• Spanish Version
• Portuguese Version
• COVID-19
• SLP, OT, PT for Down Syndrome: Support Across the Lifespan

CURRENT CONSENSUS UPDATE FOR FAMILIES WHAT IS REGRESSION?

Regression is a term for the loss of previously acquired developmental skills in an individual. This can be in the areas of daily living, language, motor abilities/function, or social interaction. Regression can occur, over weeks to months, or more quickly and time course may help in determining the likely cause of the regression. Regression can be caused by many things and is associated with a marked decline in previously established function. Regression can also be referred to Down syndrome regression disorder (DSRD), Down syndrome disintegrative disorder (DSDD) or unexplained regression in Down syndrome (URDS) and these terms are sometimes used interchangeably.

DOWNLOAD DSMIG UPDATE

DSMIG-USA - INTELLECTUAL AND DEVELOPMENTAL DISABILITY COVID-19 VACCINATION POSITION STATEMENT

Updated -November, 2021

At this time, we recommend the COVID-19 vaccine and booster shots for all children and adults with Down syndrome or other intellectual disabilities who are eligible who do not have a specific contraindication to the vaccine.

SUMMARY

• We agree with the CDC recommendations that the COVID-19 vaccines are appropriate and recommended for most people. The vaccine may not be appropriate for people with severe allergies.
• Children and adults with Down syndrome, particularly those over 40 years of age and people less than 40 years of age with risk factors, are more susceptible to complications from COVID-19 infection.
• These vaccines specifically and messenger RNA vaccines in general have not been studied in large populations of people with Down syndrome or other intellectual disabilities. This is often the case for other vaccines, medications, and supplements. However, based on data from an international study, the vaccine appears to be safe and effective.
• Previous vaccines that also trigger the immune system (albeit with different technology than the messenger RNA COVID-19 vaccines) have not had significantly different side effects for people with Down syndrome or other intellectual disabilities.
• Studies indicate the vaccine is a safe path to reduce symptomatic COVID-19, save lives, and aid in a more rapid return to the many aspects of our lives that have been altered.

CONCLUSION

After considering the risks as well as other factors, including the effect of the pandemic on children and adults with Down syndrome and other intellectual disabilities, and the safety of the vaccines in the general population, and data available to date for people with Down syndrome, we recommend the COVID-19 vaccine for individuals with Down syndrome or other intellectual disabilities who do not have a specific contraindication to the vaccine (such as allergies as noted above).

UNTIL WE HAVE MORE DATA, HERE ARE SOME CONSIDERATIONS BASED ON THE CDC GUIDELINES:

• You can still wear a mask. It’s never wrong to be more cautious. While masks may not be required, ultimately, wearing masks is a personal decision based on factors such as your comfort with risk, the rate of infection in your community, and the risk of potentially bringing home the virus (especially if someone in the home is at increased risk for severe illness from COVID-19). We still recommend some caution. The data we have so far on COVID-19 infection in people with DS, indicate that those over age 40 and those with certain risk factors are at increased risk for severe illness from COVID-19.
• Small gatherings. Per the CDC guidelines, families who have all been fully vaccinated, can hold small outdoor or indoor family gatherings, without wearing masks. These gatherings can include families from multiple households if everyone is fully vaccinated. The risk of infection seems to be quite low in that situation. We recommend caution as those gatherings get larger and the knowledge of the behavior and vaccination status of the participants decreases, particularly for people with DS with risk factors that put them at increased risk for severe illness from COVID-19.
• Larger public places. Larger public places include concerts and sporting events as well as crowded stores and other congregate settings, especially those that are indoors. We recommend caution until we know more about the effectiveness of COVID-19 vaccines in people with DS. We recommend considering wearing a mask, performing hand hygiene, and practicing physical distancing as much as possible when in those settings. Others may decide that avoiding those settings altogether is prudent until we know more.
• Work, school and activities. Prior to the changes in the CDC’s mask guidelines but after receiving COVID-19 vaccines, quite a few individuals with DS safely went back to work, school, and/or activities. The physical and mental health benefits of returning to work, school, and activities are significant. Even though the CDC has made changes to the mask guidelines, you may want to continue wearing masks and practicing physical distancing depending on factors such as the type of job or activity and the vaccination status of others at the job or activity. Businesses, schools and organizations may also continue to enforce a mask requirement.

Download the full PDF of the statement in English here.

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