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Healthcare Professionals

Below are links to resources that physicians, nurses, therapists, or any other healthcare/intervention provider might find helpful in their practices. Also, please refer parents to the Parent Resources page for information and resources that are useful for families.

Diagnosis and Healthcare Guidelines

Delivering a Diagnosis of Down Syndrome

DSIA’s one page reference guide for Healthcare Professionals

Discussing Down Syndrome: A Physician’s Guide

This guide, prepared by the National Down Syndrome Congress, assists physicians facing the challenge of informing parents that a child has or might have Down syndrome.

Postnatal Diagnosis of Down Syndrome: Synthesis of the Evidence on How Best to Deliver the News

How physicians should approach the conversation in which they explain DS for the first time to new parents.

Having a Brother or Sister With Down Syndrome: Perspectives From Siblings

This study asks brothers and sisters about their feelings and perceptions toward their sibling with Down syndrome.

Physicians Need to Offer Up-to-date Information about Down Syndrome to Expectant Couples to Inform Decision-Making

A physician should “offer parent-to-parent contact and information about local and national support organizations”.

Self-Persecpetions From People with Down Syndrome

This study asks people with Down syndrome (Ds), ages 12 and older, about their self-perception so that their information could be shared with new and expectant parents of children with Ds.

Having a Son or Daughter With Down Syndrome: Perspectives From Mothers and Fathers

This study asks parents who have children with Down syndrome how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions.

People First Language

The importance of using People First Language – putting the person before the disability – and eliminating old descriptors (that can be hurtful) to help move us in a new direction.

Health Supervision for Children with Down Syndrome

These guidelines from the American Academy of Pediatrics are designed to assist (a) pediatricians in caring for a child with Down syndrome throughout the life span, and (b) genetic counseling for prenatal diagnoses.

Children with Down Syndrome: Health Care Information for Families

The medical issues for a child with Down syndrome change with age. For this reason, the document is divided into several age groups (available as PDF). Each age group includes a list of issues that may be important to your child at that age.

The Oral-Motor Myths of Down Syndrome
Explanation of speech and oral-motor issues in children with Down syndrome, and how they might be prevented from infancy.

Timely Referral Information

Alta California Regional Center

Alta coordinates – and in many cases provides – Early Intervention services for children with developmental disabilities, including Down syndrome. The principle of early intervention is to provide appropriate therapies for children to minimize delays, and maximize their development. Please be sure to inform families about Alta and encourage them to self-refer their child for assessment and initiation of services as soon as possible after the baby is born (Alta intake in English: 916.978.6249; Spanish: 916.978.6647). You may also refer the child by calling the same phone numbers.

DSIA’s Parent-to-Parent Program

DSIA matches new parents who receive a diagnosis of Down syndrome with trained Parent Mentors who share similar experiences and circumstances. We accept referrals from hospitals, physicians, nurses, therapists, friends, family, and self-referrals from the parents. Contact DSIA’s 24-hour Support Line 916.842.7175 or support@downsyndromeinfo.org.

DSIA’s New Parent Support Group

New Parent Support Group

DSIA offers a safe and comfortable space to discuss all aspects of being a parent to a baby with Down syndrome  – joys and challenges alike! Parents are encouraged to bring questions – everything is welcome – or come to listen and share with others. Parents will make friends and develop a support system for the days and years ahead. A DSIA Parent to Parent Mentor will guide each meeting, answer any questions and offer support to new families. Contact DSIA’s 24-hour Support Line 916.842.7175 or support@downsyndromeinfo.org.

Other Resources

Down Syndrome and Breastfeeding Resources

A comprehensive list of evidence-based resources from physicians, certified lactation consultants, etc.

Down Syndrome: Health Issues

News and information compiled by Dr. Len Leshin, a pediatrician and father to a son who has Down syndrome. Topics include medical information, health concerns, development, resource lists, and more.

Down Syndrome Pregnancy

Online information and support for parents who receive a prenatal Down syndrome diagnosis

Aging and Down Syndrome

A health and well-being guidebook

Down Syndrome and Alzheimer’s Disease

As they age, those affected by Down syndrome have a greatly increased risk of developing a type of dementia that’s either the same as or very similar to Alzheimer’s disease.

Alzheimer’s Disease & Down Syndrome

Alzheimer’s disease and Down syndrome share a genetic connection, leading to the increased risk of dementia at an earlier age.

Our Sponsors

Thank you to all of our sponsors and donors whose generosity makes everything we do possible. Check out our current sponsors and let them know how much you appreciate their support!

Tax ID

DSIA is a 501(c)(3) non-profit organization Tax I.D. 20-1702399

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