As a new parent to a child with Down syndrome, we are here to provide friendship, support, resources and information.
Please call us at (414) 327-3729, toll free at (866) 327-DSAW or fill out our membership form. Our membership dues help defray the cost of our office expenses, web site operation, newsletter printing and member activities.
Through our Hospitals Program, you can expect to receive our New Parent Packet, full of information that will answer questions and provide valuable contact information for your child's ongoing developmental and healthcare needs. Didn't receive one? Please let us know.
For your convenience, we've placed a New Parent Packet online:
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!
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.
You mean there is no Guarantee?
An inspirational DSAW newsletter article written in 2004 by our Newsletter Editor and board member, Carole Shafer. Her son Alec, born in 1994, has 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. Also check http://www.dhfs.state.wi.us/ for all services DHFS offers.
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.
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
Count your blessings on Indy tax day
Today is tax day, and in case you just finished adding up all the medical expenses you've faced for your child with special needs, or are wondering how you can work a job and get your child to all those therapies and doctor appointments, I thought you could use some cheering up, and a reminder of why all that is worth it, and how somehow, God takes care of it all, in the times we think it can't possibly work out.