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.
The American Academy of Pediatrics (AAP) has developed a special guide to help parents and families of children with Down syndrome. It focuses on medical topics that affect physical health. This is easy to understand, parent-friendly information for what testing is necessary and why.
Adult Protective Services staff investigate reports of abuse, neglect (including self-neglect) or financial exploitation of adults who are unable to protect themselves due to a physical or mental limitation. APS staff assess the need for protective services and provide services to reduce the identified risk to the adult.
The Abuse Registry for the State of Tennessee is maintained by the Tennessee Department of Health. The Abuse Registry includes names of persons who have abused, neglected, exploited or misappropriated the property of vulnerable persons. The names on the Abuse Registry are submitted for placement by Tennessee departments and agencies which oversee the protection and welfare of vulnerable persons. Names may also be submitted by law enforcement agencies.
The Adult Down Syndrome Center is a primary and specialty healthcare clinic that has served the medical and psychosocial needs of over 6,000 teens and adults with Down syndrome since 1992. As a comprehensive medical resource they provide patients everything from holistic care and support to education and resources in a compassionate, welcoming environment. They also hold events, participate in community outreach and conduct research.
NDSS resource for families, professionals, direct caregivers or anyone concerned with the general welfare of an adult with Down syndrome.
Autism Tennessee exists to enrich the lives and experiences of individuals on the autism spectrum, their families, and their surrounding community through support, advocacy, and education.
Workshops for parents, siblings, physicians, and educators developed by Brian Skotko MD, MPP medical geneticist, director of the Down Syndrome Program at Massachusetts General Hospital, and sibling of an individual with Down Syndrome.
The Department of Children's Services investigates allegations of child abuse and neglect. They also administer the state’s foster-care system and work to find permanency for the children and youth who come into the care of the state. DCS has a goal to provide prevention and support services to children and families that promote safety, permanency, and well-being.
Medicaid waivers for children are unfortunately quite confusing. Not only that, but it is impossible to find information about them. This project, coordinated by Complex Child Magazine, is intended to simplify the process as much as possible. Our first goal was to create a full list of current Medicaid waivers for children. We then created individual state pages that provide additional information and links for each program. We hope to provide a comprehensive resource of all Medicaid waivers for children, including 1915(c) HCBS waivers, 1115 demonstration waivers, TEFRA/Katie Beckett programs, and state-based programs.
The clinic provides comprehensive care and professional services to children and teens with Down syndrome. The clinic staff assists patients in finding therapeutic services and educational/behavioral support and providing a multidisciplinary approach to treatment.
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.
Information on medical, behavioral, social, and mental health issues for people with Down Syndrome, including practical how-to guidelines for improved understanding, management, and treatment planning.
Parents often ask lots of questions about their very first visit to the Vanderbilt Children’s Down Syndrome Clinic. Thanks to some extraordinary parents, DSAMT has compiled this list of Q&As.
Sometimes it can seem impossible to find funding for a piece of adaptive equipment you know will vastly enrich and enhance your child or client’s life. Includes Online funding resource guides and a list of funds and foundations set up to help with funding for disabilities.
PetScreening supports the Down syndrome community and advocates for the adoption of foster, rescue, and shelter animals. PS4Ds is a philanthropic grant program that gives financial support to individuals with Down syndrome whose quality of life could be made better by adopting an animal. This includes obtaining an animal for the primary purpose of owning a companion animal.
All young people need access to and can benefit from sexual health information. Young people with disabilities have the same right to this education as their peers, however considerations must be made in order to modify the program to allow for information to be understood and learned in a way that is meaningful to them.
A non-profit organization with a goal to purchase light tech AAC devices for families to use to provide access to communication. They act as a bridge for families to provide access to communication devices recommended by their treating speech language pathologist and serve as a resource for families to assist in obtaining the appropriate communication system for their child.
The Tennessee Yellow DOT Program is designed to provide first responders with an individual’s medical information in the event of an emergency on Tennessee’s roadways. The information can mean the difference between life and death in the “Golden Hour” immediately following a serious incident.
Trauma is understood as experiences or situations that are emotionally painful and distressing. Trauma can overwhelm an individual’s ability to cope, leaving him or her to feel powerless. Individuals with IDD experience a variety of trauma-based responses similar to those who do not have an IDD. This guide gives information and tips to help those with IDD who have experienced trauma.