7/5/2017. Beth Gard, M.S., Medical Outreach Chairperson Leah Janke, DSA Executive Director. Balanced, up-to-date information!

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1 Beth Gard, M.S., Medical Outreach Chairperson Leah Janke, DSA Executive Director Promoting Down syndrome advocacy by partnering with the medical community to provide new and expectant parents accurate information and support. Presentations at area hospitals and OB and MFM offices Online resources for healthcare professionals Patient and staff education materials Outreach expanding into NICUs and pediatrics Balanced, up-to-date information! Became law in April 2016 States that parents and expectant parents are to be given accurate, up-to-date information including local support groups at the time of diagnosis Includes a fact sheet that can be found on and printed from the DHHS website ome.aspx 1

2 Down Syndrome Alliance of the Midlands (DSA) Omaha metro Down Syndrome Association for Families Lincoln National Down Syndrome Society (NDSS) National Down Syndrome Congress (NDSC) Down Syndrome Diagnosis Network (DSDN) Overview of DSA Website Support groups Social events Programs Buddy Walk Advocacy Mission: DSA is committed to connecting those touched by Down syndrome through education, advocacy and support. 2

3 Mothers Connected by Down syndrome Moms meet monthly for coffee Private Facebook page Moms night out G.R.A.N.D.S. Host events Easter Egg Hunt Holiday Party with Santa Summer Picnic Trunk-or-Treat D.A.D.S. of Omaha National organization Meet monthly DSA and D.A.D.S. collaborate on many events for dads and their families Aging and Developmental Disabilities Information Group New! For family members needing information and support on the changing needs of their older children or siblings with Ds Events for expectant parents, parents of infants and parents new to the Omaha area Meet others at the same stage of their Ds journey Meet DSA leaders to learn more about our mission Events offered throughout the year Foster relationships between members Events to help those families struggling with the financial burden of caring for a child with special needs Parents night out Events for siblings Family events 3

4 A speaker in the field of Down syndrome education, health care, or advocacy presents information to DSA families, educators, and medical professionals Unconventionally-formatted conference Examples of speakers Jennifer Bekins, SLP Brian Skotko, M.D., Geneticist William Mobley, Ph.D., Neuroscientist, Alzheimer s and Ds Meets monthly throughout the school year Parents receive small group instruction on how to enhance their child s educational outcomes both at home and at school Special ed teachers and therapists work with children focusing on literacy, numeracy, fine motor skills and speech/language development The program is open to children ages 4 7 4

5 New! Starting in fall 2017 DSA will partner with Ollie Webb to offer workshops for siblings of children with special needs Conducted at the same time as our Down Syndrome Education Series DSA is committed to advocating to protect the rights of those with Ds at both the national and local level of government In March DSA leaders and 2 self-advocates attended Buddy Walk on Washington In June, members and leaders of DSA met with staff members at NE senators Deb Fisher and Ben Sasse s offices advocating against drastic cuts proposed for Medicaid in the new Healthcare bill 5

6 Present at local schools Promote inclusion Self-advocates Down syndrome awareness month What is Down syndrome? Raise awareness People first language The R word Approximately, 3,000 people come together to celebrate our loved ones and friends with Down syndrome As a community, we are committed to support, advocacy, inclusion, and the programs of the Down Syndrome Alliance of the Midlands Largest fundraiser This year s walk is on September 30 th at Stinson Park! 6

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