New Parents

Welcome and congratulations on your new son or daughter with Down syndrome. We hope the materials in this section will answer some of your questions about Down syndrome and will assist you as you prepare for the particular joys and challenges of raising your new little one. Please contact DSI with ANY questions! We are here for you. We can set you up with other parents who have walked in the same shoes, more information and support groups. For more information please contact Rachel Lowe at: 317-925-7617 or click here to send her an email.

We welcome expectant parents to our organization and hope you will contact us to offer you support.  Receiving a prenatal diagnosis that your baby will have Down syndrome can be overwhelming.  We have compiled some resources to help you make an informed decision regarding your pregnancy. 

DSI New Parent Packets

Down Syndrome Indiana would like to congratulate you on the birth of your new baby. We have compiled a list of helpful resources for new parents that we can provide to you at no cost. To request a parent packet please contact Rachel Lowe by calling 317-925-7617 or by clicking here to send her an email. 

National Down Syndrome Congress

The NDSC provides many wonderful resources for new parents that can be downloaded at no cost by visiting them on the web here or by clicking on the links provided below. 

Items that are included in their new parent packet include:

Down Syndrome Brochure (PDF)
Facts about Down Syndrome
Baby is a Baby First
Language Guidelines
Bibiliography 2008
Your Baby and Down Syndrome (PDF)
New Parent / Early Intervention Resources (PDF)
Advice For New Parents (DOC)
Healthcare Guidelines (PDF)
Welcome to Holland
Expectant Parents Info

National Down Syndrome Society

The NDSS also provides many wonderful resources for new parents that can be downloaded at no cost by visiting them on the web here or by clicking on the links provided below.

  • Click Here to watch the NDSS new parent video, A Promising Future Together: A Guide for New Parents of Children with Down Syndrome. This video features families discussing different stages in their children’s lives, as well as developmental pediatricians and other professionals giving information about medical, social and educational issues for families of children with Down syndrome. The video covers early intervention, local and national resources and health care screenings that can help their children achieve their full potential.
  • Click Here to download a PDF version of the NDSS new parent package A Promising Future Together: A Guide for New Parents of Children with Down Syndrome, or call 1-800-221-4602 to order a complimentary copy of this publication in English or Spanish.
  • Click Here for Brighter Tomorrows, a web-based resource on receiving a diagnosis of Down syndrome prenatally or at birth. This cost-free site provides answers to questions that families and prospective parents may have at this critical moment in their lives. In both English and Spanish.
  • Or choose from one of the following sections of this website to learn more about how to help you, your family and your baby get off to the best start possible:

About Down Syndrome

Understanding a Diagnosis of Down Syndrome

A Healthy Start

Early Intervention

Finding Support

A Parent's Perspective

Promising Future Together Video

Parent & Family Resource List

Caring For Your Family

Additional Resources

The following resources are intended to help new or expectant parents learn more about Down syndrome. We hope these resources will help families understand how having a child with Down syndrome can enhance the family.

Diagnosis Down Syndrome: This Web site’s purpose is to inform you of the life realities that a person with Down syndrome can look forward to today which includes stories and photos from parents of children with Down syndrome.

New parents also find this "Welcome to Holland" story is very telling about their experiences.

The Journey Ahead: produced by the Down Syndrome Association of Greater Cincinnati. A 15-minute film with parents talking about their journey with a child with Down syndrome.

The Light at the End of the Tunnel brochure comprises stories from other prenatally diagnosed couples so you can learn what information was helpful to them.  Watch a video created by the Kansas City Down Syndrome Guilde.

You may also wish to visit the Brighter Tomorrows  or National Down Syndrome Congress expectant parent websites to learn more. You may also enjoy reading the National Down Syndrome Society's Promising Future Together Booklet or a new parent guide disseminated by the Down Syndrome Association of the UK.   

Local Down Syndrome Clinics

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Riley Hospital for Children

Ann Whitehall Down Syndrome Program

702 Barnhill Drive; Indianapolis, IN 46202

(317) 274-4846

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St. Vincents Hospital

Down Syndrome Clinic

2001 West 86th Street; Indianapolis, IN 46260

To schedule an appointment in the Down Syndrome Clinic call (317) 338-5288. For more information, please contact:

Deborah Lane, MS, CGC
Genetic Counselor
Coordinator, Down Syndrome Clinic
(317) 338-5288

or

Luis F. Escobar, MD
Director, Medical Genetics

(317) 338-5288

Indiana Children's Special Health Care Services

Indiana Children’s Special Health Care Services (CSHCS) provides supplemental medical coverage to help families of children who have serious, chronic medical conditions, age birth to 21 years of age, who meet the program’s financial and medical criteria, pay for treatment related to their child’s condition. Click here to learn more.

Indiana Home and Community Based Waiver Services

Indiana's Medicaid Home and Community-Based Waiver Program as well as a variety of other home and community services funded by various programs in Indiana. A guide for consumers can be found here.

Supplemental Security Income

Down syndrome is considered to be a presumptive condition by the Social Security Administration. This means that if your family meets a certain income guideline (low-income families) your child could receive cash assistance and Medicaid through Supplemental Security Income also known as SSI.

It is important that you apply as soon as your child is born if you feel you may qualify, if you are not sure if you qualify we encourage you to apply to find out. If your baby is still hospitalized most hospital social service departments will assist in completion of this application.

You can also apply in person by visiting:

SOCIAL SECURITY
RM 685
575 N PENNSYLVANIA ST
INDIANAPOLIS, IN 46204

1-800-772-1213

SSA offers a SSI Child Disability Starter Kit (for children under age 18) online. You can view her by clicking here.

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