This checklist is intended to support the health of adults with Down syndrome directly or through their caregivers. We encourage this checklist to be shared with your medical professionals. Statements in blue represent recommended, periodic health screenings/assessments that should begin at a specific age.
This guide is intended to provide tools and advice to self-advocates who are interested in becoming more involved in legislative advocacy to work on policies and laws.
NDSS resource for families, professionals, direct caregivers or anyone concerned with the general welfare of an adult with Down syndrome.
Alzheimer’s Tennessee, Inc. provides family support, offers community and professional education, advocates for the needs and rights of those with Alzheimer’s disease and related dementias, as well as research for its prevention, cure, and treatment.
The Tennessee Center for Decision-Making Support is a virtual resource center that provides decision-making information, resources, and tools to assist individuals with disabilities, their families and support providers when planning for their future.
The Conservatorship Association of Tennessee is a non-profit organization of people who are concerned about the quality of services for adults who may need assistance in decision-making. Membership is open to individuals interested in improving the lives of Tennesseans who may need conservatorship and other protective services. CAT promotes a nationally recognized standard of excellence in conservatorship and guardianship through networking, continuing education, training, and other programs and services. CAT is an affiliate of the National Guardianship Association.
Document outlining Alzheimer's disease, it's connection to Down syndrome, clinical features, diagnosis, assessments, treatment and supportive care from the Alzheimer's Association.
Dr. Brian Skotko created a new online course for caregivers who are looking to improve the brain health of their loved ones with Down syndrome. He is calling the course the Down Syndrome Brain Train and it gives practical ways to boost the brain health of people with Down syndrome.
DSC2U as a way for families to get up-to-date, personalized health and wellness information for their loved one with Down syndrome. Caregivers will be asked to identify current symptoms along with any past medical or behavioral diagnoses and any recent blood work or diagnostic testing. The responses will be analyzed by a computer, based on state-of-the-art guidelines designed by national Down syndrome experts. The caregiver will instantly receive two personalized documents: one for themselves and one to share with their primary healthcare provider. These documents contain customized suggestions that are designed to help their loved one get healthcare tailored to their own specific needs.
Created to help improve conversations and planning and enhance supports to individuals with I/DD and their families. The Charting the LifeCourse framework was developed by families to help individuals with disabilities and families at any age or stage of life develop a vision for a good life, think about what they need to know and do, identify how to find or develop supports, and discover what it takes to live the lives they want to live.