New Parent Resources
Parent's First Call Program
For new parents of babies with Down syndrome, an opportunity to speak with other parents who have experienced what you are experiencing can be invaluable. DSAW's Parents First Call Program is a statewide group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information. If you would like to speak with a First Call parent, please fill out our new/expectant parent form, call 1-866-327-DSAW (3729), or email firstcall@dsaw.org.
Check out the digital version of the DSAW Parent's First Call Magazine. This publication includes all resources new and expectant parents will need in the first days, along with testimonials from other parents. A hard-copy of this magazine is included with all Expectant Parent Packs and New Parent Welcome Baskets.
Aquí hay una versión digital de la revista DSAW Parent's First Call. Esta publicación incluye todos los recursos que los padres nuevos y futuros necesitarán en los primeros días, junto con testimonios de otros padres. Se incluye una copia de esta revista con todos los Paquetes para padres expectantes y las Canastas de bienvenida para nuevos padres.
Talk About Down syndrome - People First Language
How should I talk about Down syndrome? We must sometimes remind ourselves to communicate about individuals with Down syndrome (and other special needs) in a positive and accurate manner. All people are people first and foremost and people with special needs secondary. The diagnosis or medical condition of an individual does not define who they are or what they are capable of. Their personality, individual characteristics, gifts and talents define who they are. We must remember to focus on the possABILITIES and not the DISabilities of a person. This document is designed to provide suggestions to help talk about Down syndrome.
Baby Announcement
Let's face it... this part can be tough. But perhaps this sample can offer you some guidance.
Down Syndrome Clinic of Wisconsin - Children's Hospital
This organization is committed to improving the health and well-being of children and adults with Down syndrome, which may include complex issues. This requires a comprehesive, multidisciplinary health care approach. The DSCW is connected with a statewide network to assist families in need.
Health Care Guidelines for Individuals with Down Syndrome
The American Academy of Pediatrics has developed specialized health care information for families of children with Down syndrome that spans the prenatal period through age 21.
Katie Beckett Program - Supplemental Insurance
Children born with DS often experience medical complications at birth, many of which today are corrected with routine procedures. In addition, children with DS will benefit from physical, occupational and speech therapy in their first months and years. But all of this comes at a cost.
While your personal health insurance may provide coverage, the Katie Beckett (named after a young girl in Iowa when the program started under the Reagan Administration) Medicaid program can cover costs that insurance plans sometimes will not. Children who are not eligible for other Medicaid programs because the income or assets of their parents are too high may be eligible for Medicaid this way.
Our experience shows us that many DS children qualify for Katie Beckett benefits, so make sure to contact your local Katie Beckett representative to determine your own eligibility.
Birth to 3 - Wisconsin's Early Therapy Intervention Program
This is Wisconsin's early intervention program for infants and toddlers with developmental delays and disabilities. Through it, your child will receive (in most cases) in-home physical, occupational and speech therapy depending on his or her needs, often at little-to-no cost to your family.
A federal law, the Individuals with Disabilities Education Act (IDEA), provides a framework for a comprehensive program and coordinates developmental, health and social services within the community.
Wisconsin Department of Health and Family Services (DHFS)
Listing of services in Wisconsin for those with disabilities.
Well Badger Resource Center
Statewide information and referral service dedicated to helping families and professionals find resources for children birth to 21 years with special needs. Call their hotline at 1-800-642-7837 to find the closest regional center for CSHCN, Children with Special Health Care Needs, or for help finding other resources near you.
FACETS - Wisconsin Family Assistance Center for Education, Training & Support, Inc.
Informs and instructs parents how to obtain appropriate education
Works to improve education results
Helps resolve issues between families and schools or other agencies
Provides a critical resource to connect families to community resources
Finding Your Way Navigation Guide
The guide is published and maintained by the Southern Regional Center for Children and Youth with Special Health Care Needs (CYSHCN) through a collaboration with the Wisconsin State Department of Health Service Title V Maternal and Child Program and the Waisman Center University Center for Excellence in Developmental Disabilities.
This resource has been reviewed by content experts, information and referral specialists, and families. The guide includes brief descriptions of programs, services, systems of support, and contact information for these resources.
For more resources, check out our Resources by Subject page.
Recommended Books
Down Syndrome Parenting 101 by Natalie Hale
Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper
Common Threads: Celebrating Life with Down Syndrome by Cynthia Kidder and Brian Skotko
The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood by Jennifer Jacob and Mardra Sikora
What I Want You To Know: Messages of Hope and Joy from your Baby by RA Hudson
Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome by Nancy McCrea Iannone and Stephanie Hall Meredith
