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
DSIA’s one page reference guide for Healthcare Professionals
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.
How physicians should approach the conversation in which they explain DS for the first time to new parents.
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”.
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.
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.
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.
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.
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.
Timely Referral Information
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 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 firstname.lastname@example.org.
DSIA’s 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 email@example.com.
A comprehensive list of evidence-based resources from physicians, certified lactation consultants, etc.
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.
Online information and support for parents who receive a prenatal Down syndrome diagnosis
A health and well-being guidebook
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 and Down syndrome share a genetic connection, leading to the increased risk of dementia at an earlier age.