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.
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.
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.
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.
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.
Tennessee Department of Health website with current information about Down syndrome for both families and medical providers. Information, reources, and Links are available along with advocacy groups across the state of Tennessee.