New Parent Resources
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.
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.
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.
Wisconsin First Step
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.
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!
- 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