Emergency Preparedness for Individuals with Hearing Loss: A Family Guide

Why is emergency preparedness for individuals with hearing loss important? From a natural disaster to unexpected emergencies in the home, the need to plan, practice, and store away information and materials specific for someone with hearing loss is important. During an emergency, planning for the communication needs of someone with a hearing loss might help… Read more Emergency Preparedness for Individuals with Hearing Loss: A Family Guide

Helping People With Intellectual Disabilities Cope With Loss

Individuals with intellectual disabilities experience grief when they lose a loved one just like everyone else. Common misconceptions People with intellectual disabilities don’t understand or can’t comprehend death. People with intellectual disabilities don’t show grief, therefore experience no grief. Talking about it would be too upsetting for him/her. We now understand People with intellectual disabilities… Read more Helping People With Intellectual Disabilities Cope With Loss

Williams Syndrome

What causes Williams syndrome? Individuals with Williams syndrome usually are missing a small piece of chromosome 7. This rare genetic disorder occurs spontaneously in 1 out of every 7, 500 births. It is not a result of an inherited characteristic from the parents. First recognized in 1961, Williams syndrome affects males and females at equal… Read more Williams Syndrome

CHARGE Syndrome

CHARGE syndrome is thought to be caused by a mutation in the gene CHD7on chromosome #8. It occurs in 1 out of every 10,000 births and is not thought to be inherited. CHARGE syndrome affects males and females at equal rates and has been diagnosed in all ethnicities and socioeconomic backgrounds. What are the effects… Read more CHARGE Syndrome

Adult Siblings of Individuals with Disabilities

Sibling relationships are often the longest-lasting relationships that children form. Like all siblings, they may or may not develop close emotional relationships depending on individual differences and circumstances. Regardless, a child’s reaction to a sibling with a disability will have a lasting effect on siblings’ self-esteem and emotional development.  General Well-Being of Siblings According to… Read more Adult Siblings of Individuals with Disabilities

Adolescent & Young Adult Siblings of Individuals with Disabilities

Growing up with a sibling with a disability Sibling relationships often are the longest-lasting relationships that children form. Relationships vary greatly, based on the ages, gender and age span of the children, their shared interests and their family’s lifestyle. Variations in closeness, time spent together, and warmth in sibling relationships are expected in families where… Read more Adolescent & Young Adult Siblings of Individuals with Disabilities

Accompanying an Individual to the Doctor

What is the reason for today’s visit? Adults with intellectual or other developmental disabilities may have difficulties explaining their symptoms or expressing pain, so the health care provider may have trouble determining the presence of an illness or injury. Having a direct support professional who knows the patient, knows how the patient communicates, and knows… Read more Accompanying an Individual to the Doctor

Confidentiality in Research

Confidentiality in Research at the Vanderbilt Kennedy Center (VKC) The people who make up the VKC interact with individuals and families through research, clinical services, information and referral, and community involvement activities. Throughout these many forms of interaction, sharing of personal and private information is inevitable. In recognition of the many disciplines within the VKC… Read more Confidentiality in Research