Adults with Down Syndrome
Guess what? Adults with Down syndrome are adults! Having an intellectual disability does not affect a person’s rights as an adult upon turning 18 years of age. And…parents are not “automatically” the guardian of their son or daughter at age 18 because they have an intellectual disability. Guardianship is one alternative on a pyramid of legal ways of protecting rights for individuals who may be vulnerable in some or many areas. Alternatives come with various levels of restriction on an individual’s rights. We like this publication called Lighting the Way, published by the Florida Developmental Disabilities Council, that helps to explain guardianship. The publication can be viewed online or mail ordered. There is also an online training. Further information about Guardianship can be found at these website links:
North Florida Office of the Public Guardian
Tuberous Sclerosis Alliance
Gold Coast Down Syndrome Organization often receives phone calls from families (when sons and daughters have finished school at age 22 and older) asking “What happens next?” Faced with the realization that their child’s education did not lead to choices for accessing their community (further education, employment, independent living, leisure) as an adult, they are sometimes stunned to find out that without Medicaid Waiver funding, their son or daughter will be sitting at home on the couch. Here’s a new publication from the Florida Developmental Disabilities Council called Connections: Tools and Resources for Adult Life.
Here is a list of local resources that provide adult services for individuals who have disabilities from the least restrictive competitive employment to the most restrictive sheltered workshop, from adult day programs to leisure opportunities in the community:
Agency for Persons with Disabilities
Palm Beach Habilitation Center
Boca Raton Habilitation Center
The Arc of Palm Beach County
Jewish Family and Children’s Services
Please contact us for further information at firstname.lastname@example.org or by phone 561-752-3383.
Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality
– A healthy, proactive approach to educating children with Down syndrome about their bodies and sexuality is a book that is available through our resource lending library.
Sexuality Across the Lifespan – An instructional guide for parents and caregivers of individuals with developmental disabilities.
Sexuality & Down Syndrome – information on the NDSS website
Interesting blog articles about important adult advocacy issues related to employment.
The idea that Down syndrome and Alzheimer’s Disease are connected is very concerning to families. This link will take you to an archived webinar called Dementia Among Adults with Down Syndrome: Individual Differences in Risk and Progression. It was originally presented on January 20, 2010 by the Association of University Centers on Disabilities. Other health information can be found on the national organization websites:
The publication Aging and Down Syndrome is available for download or we are happy to provide a hard copy at the Gold Coast Down Syndrome Organization Resource Center.
These books are available for members in our Lending Library:
The Guide to Good Health for Teens and Adults with Down Syndrome, 2010
Mental Wellness in Adults with Down Syndrome – A Guide to Emotional and Behavioral Strengths and Challenges, 2006
Bienestar mental en los adultos con síndrome de Down – Una guía para comprender y evaluar sus cualidades y problemas emocionales y conductuales