Down Syndrome Guild of Greater Kansas City
5960 Dearborn Street, Suite 100
Mission, KS 66202
The DSG partners with 22 area hospitals to provide the most current information, research and training to medical professionals and staff. Any presentation can be tailored to meet the needs and time commitments of the medical staff. Healthcare Provider Training is available in a 5-60 minute presentation called Changing Lives. The presentation includes Down syndrome health care guidelines, diagnosis do’s and don’ts, resource lists, growth charts and more.
The DSG advocates for people first language usage when speaking or writing about an individual with a disability. Read the following article to help answer any questions about People First Langugage
These recommendations are a thoughtful composite of the input of many experts involved in the care of people with Down syndrome. They reflect current standards and practices of health care in the United States of America. They have been designed for a wide audience: for health care professionals who are providing primary care, such as pediatricians, family physicians, internists and geneticists, as well as specialists, nursing personnel and other allied health professionals, such as physical and occupational therapists, speech-language pathologists and audiologists. In addition to educators and early intervention providers, these guidelines are designed for parents and other caregivers to use with the professionals who participate in the care of the individual with Down syndrome.
Consdier promoting Down syndrome awareness by "Banding Together" as a staff. Email the DSG for more information about how you can promote awareness, education and support individuals with Down syndrome.
Download a medical professional's information packet filled with information about awareness, incidence rates, National Down Syndrome Diagnosis Network resources, programs & services brochure for DSG and Facts about Down syndrome brochure.
Communication between patient and caregiver is vital and when that ability to communicate is lost or impaired by illness, trauma, medical process or language barriers, communication is more vital! Purchase communication boards and have the necessary tools to support all patients.
Consider purchasing a communication board for First Responders too!
Discussing Down Syndrome
A Physician's Guide - The National Down Syndrome Congress has created a guide to assist physicians facing the challenge of informing parents that a child has or may have Down syndrome. To learn more about providing information to parents.
Framing Down Syndrome is a video featuring people with Down syndrome and their families explaining common medical issues to healthcare professionals.
Down Syndrome and DEmentia
The Down Syndrome and Dementia Questionnaire is a tool which will assist families and caregivers in acquiring information on daily functioning skills for a person with Down syndrome. The questionnaire is useful for taking data across a number of years and date collected can be shared with medical professionals should a decline in functioning occur.
We recommend families begin taking baseline data at age 30 and keep the documents in an accessible place for various family members to review and refer to over the years. You may wish to consult your primary care physician or neurologist before using the questionnaire as they may have additional advice or measurement tools they recommend.