New Parents

Congratulations on your new baby!  We hope that you will find the information on this site helpful as you begin on this exciting, and sometimes uncertain journey.  It is our hope that we can provide you as much information as you need, and all of the support that you seek.  In addition to the resources found here, we would like to send you a packet of information and resources to help you along the way.  We can also put you in touch with other families who are, or have been, in a similar situation to yours, if you wish.  We are fortunate to have trained parents who will visit you either in the hospital, or in your home, at your request.  Please email us at info@dsmaine.org to begin this process.

Online Resources

If you’ve received a prenatal diagnosis, please see our Expectant Parents page.

Our national affiliates, the National Down Syndrome Society and the National Down Syndrome Congress both provide a wealth of information for new parents.

Brighter Tomorrows provides families with balanced information about receiving a diagnosis of Down syndrome, either during pregnancy or at birth.

Welcoming a Newborn with Down Syndrome:  A Parent’s Guide to the First Month   This book offers support and accurate, reliable information to the new parents of a baby with Down syndrome. The book covers topics like breastfeeding, adjusting to a diagnosis, preparing siblings, understanding medical issues, preparing for the future, and, most importantly, it shares diverse stories about the daily lives of families whose children have Down syndrome at different ages.

 

Early Intervention/Child Development Services

In Maine, early intervention services are administered through Child Development Services (CDS).  Each county has it’s own CDS site.  To find information about the site in your county, click here.

 

Pediatric Geneticist

We are fortunate to have excellent Pediatric Geneticists in Portland.  Dr. Wendy Smith and Dr. Rosemarie Smith practice at Maine Pediatric Specialty Group, 1577 Congress Street, Portland.  You can contact them at (207)662-5522.

 

Maine Care/Katie Beckett Waiver

MaineCare (formerly Medicaid and CubCare) is a “Federal/State” program which provides health and denta insurance assistance to people with limited resources.  Eligibility for a variety of MaineCre funded programs is determined by the Office of Integrated Access and Support.  You can contact them at 1-877-KIDS NOW (1-877-543-7669)(from Maine.gov).  MaineCare may also be available to children with serious health conditions regardless of parental income through the Katie Beckett Waiver or Option.  To find out more about the Katie Beckett Option, please click here.

 

SSI

Children with Down syndrome can qualify for cash assistance for basic needs through Supplemental Security Income (SSI) if your family meets income guidelines.  If you think you may qualify, we encourage you to apply as soon as possible.  If your child is in the hospital, hospital social workers should be able to help you complete the application.  You may also find out more by contaction your local SSA field office.  The toll free number for all Social Security offices is 1-800-772-1213.

The Social Security Administration has a SSI Child Disability Starter Kit (for children under age 18) which is accessible here.