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. The 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 1-866-327-3729, or email firstname.lastname@example.org.
Parent's First Call Magazine
Check out the digital version of the 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.
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.
Let's face it... this part can be tough. But perhaps this sample can offer you some guidance.
Waisman Center Down Syndrome Clinic
Children and their families are seen for initial and follow-up visits to address concerns related to Down syndrome in the areas of: feeding, growth, development, communication, behavior, hearing, therapy and support services. Genetic counseling is also provided in the clinic. Individualized care is provided according to the needs of the child identified in collaboration with their parent or guardian. The guidelines will be followed from the American Academy of Pediatrics Standards in the Care of Children with Down Syndrome.
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.
Family Support Program
In-home support for families with children who have severe disabilities. Offers information and help in finding service programs and community resources, some funding to purchase necessary goods and services unavailable elsewhere and links to other families to build a support network.
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
Welcome to Holland
Start off with some great perspective in a story written by Emily Perl Kingsley. And trust us, Holland offers you vistas that Italy NEVER could!
For more resources, check out our Resources by Subject page.
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