The Intellectual and Developmental Disability (IDD) Community is a socially underserved, often overlooked community of people well-deserving of human-connection. Persons with autism, Down syndrome, fragile X, fetal alcohol syndrome, epilepsy, cerebral palsy, and other disabling conditions comprise the IDD Community. They desire and deserve friendship, companionship, and camaraderie just as much as anyone.
From youth to adulthood, much of modern-day socialization is done online, however, the IDD community faces varied communicative, cognitive, and social deficits which impede them from picking up a smartphone and logging into a social networking site. Engaging in social media is fraught with data sharing safety issues. Despite being a legally protected community, they are profoundly vulnerable on the internet. Bullies and predators are lurking, waiting to prey on this emotionally, sexually, and financially assailable community.
For example, a study co-authored by Marisa Fisher, assistant professor of special education at Michigan State University in 2016, examined how social media negatively impacted persons with Williams Syndrome. Williams Syndrome is a moderately rare genetic condition characterized by “developmental delays, learning disabilities, excessively social personalities…” They are trusting and usually live at home with their parents.
Fisher says being socially inclined is “hard-wired” as a prevailing Williams Syndrome characteristic. Unfortunately, so is their unguarded naivety. She found that almost 86 percent of the adults use social media sites like Facebook on a day-to-day basis, sharing their pictures and self-identifying information freely, exposing themselves to possible identity theft or other types of abuse.
Approximately one-third of them even went so far as to agree to meet privately off-line at the home of a person whom they had met online. They agreed to do this without telling their parents or caregivers about these arrangements.
Three years prior to the Facebook study, Fisher led a real-world bullying study focused on those with Down syndrome, autism, and Williams syndrome. She reported that this community “experienced extremely high rates of real-world teasing and bullying, theft and abuse.”
Fisher has been implementing a social skills program developed for people with Williams syndrome that includes appropriate online behavior and safety.
However, predators are insidious, wily, and perpetually changing tactics. A study done in Nebraska of 55,000 children showed a child with any type of intellectual disability was four times more likely to be sexually abused than a child without disabilities (Sullivan & Knutson, 2000). Pragmatically, it may be beyond the IDD person’s acquired skill set to be able to navigate a given situation to stay safe, requiring a third-party facilitator to help.
In their position statement for Personal Safety and Abuse Prevention, the National Council On Severe Autism states that “The cognitive and communication impairments of individuals with severe autism place them at significantly elevated risk of physical, emotional, sexual and financial harm. The NCSA strongly advocates for policies to ensure safety across all settings.”
The NCSA is clear and consistent in their strategy for directing safety (or the best case scenario) of those living with severe autism, their families, and caregivers. They expand on the policy of safety across all scenarios by detailing the necessity of educating all levels of educational staff, medical and therapeutic providers, first responders, case managers, guardians, and anyone else who may come in contact with the person with severe autism.
The NCSA advocates for “persistent oversight” in using technological support to ensure safety for day-to-day life as is appropriate. This may include any and/or all of the following: “cameras, recording devices, door chimes, locks, and tracking devices.” These necessities must exist in the off-line world because roughly half of children with autism are prone to elope. Moreover, they have communication impairments and/or cognitive deficits, and are unable to ask for help to get home. Drowning is among the leading causes of death for persons with autism subsequent to wandering (91%).
Recording devices are imperative for all IDD classrooms, group homes, and other levels of care for physical and sexual abuse prevention. It’s estimated that over the last five years, more than 20 students, many with disabilities, have died due to excessive measures being taken in the form of seclusion and restraints in schools.
While advocates like Fisher are utilizing skills programs to better instruct appropriate online behavior for IDD persons to stay safe, it may not be enough. It would stand to reason that persistent online oversight is needed that is in equal measure to the NCSA’s all-encompassing strategy.
The online world has many dark corners and perilous spaces, but it also has many socially therapeutic and learning opportunities when engaged appropriately. e-buddies is one such appropriate social alternative that is safe and easy to use for ages 10 and up.
e-Buddies email program provides the kind of facilitator oversight to keep the IDD user safe from potential online threats and bullying while enabling the user to learn, develop meaningful relationships, and improve social confidence. It is always free for anyone in the IDD community, available throughout the U.S. as well as internationally for English-speaking participants.
What is e-Buddies?
e-Buddies is an e-mail pen pal program that arranges safe one-to-one e-mail friendships between people with and without IDD. The program serves as a filter between the pen pals, making sure no identifying information, profanity, personal pictures, or other inappropriate information is exchanged. Participants are matched based on age, gender, and similar interests. Adults are matched with adults and students with students.
Benefits of e-Buddies
Anyone over the age of 10 can join; there is no exclusion. e-Buddies requires and reciprocally guarantees a minimum of a weekly email from your pal. The IDD user is able to achieve multiple IEP benchmarks, become motivated to improve spelling and grammar, develop meaningful friendships, and acquire computer skills. Job opportunities and/or advancement in education become more achievable.
How It Works
The e-mail system hides personal e-mail addresses when you e-mail with your e-Buddy. E-mail messages are logged and archived and can be screened for inappropriate content. All e-Buddies are screened before they can participate. e-Buddies are never matched in the same state and agree never to meet in person. All communication is through e-mail only.
Your data is kept safe private, e-Buddies states on their site that they will not share or sell your personal information.