Is It Possible to End the Stigma of ID/DD?by H. E. James | October 27, 2015
Lazy, burdensome, violent. Dangerous. These are all words used to describe those with intellectual and/or developmental disabilities (ID/DD), especially adults.
Are they accurate? Perhaps among a small population of those with ID/DD, but if you Google “rate of violence perpetrated by adults with ID/DD,” the majority of results will detail abuse rate perpetrated against adults with ID/DD.
These results are telling in the context of the perceptions of adults and teenagers with ID/DD. Instead, it might be better to label these misconceptions. They are in fact, part of a larger epidemic which has been raging for decades, if not centuries: stigmatization of adults with ID/DD.
Stigma are defined as “marks of disgrace or infamy; a stain or reproach, as on one’s reputation.” In other words, stigma are a set of prejudices about one group help by another. The stigma of ID/DD can be felt by the person with the disability as well as her family, friends, and caregivers.
This still happens?
It’s 2015 and yet people with ID/DD are still saddled with labels which cause them pain. For Sam, a young man in California who worked with an educational program that empowered him to run his own Individualized Educational Plan meetings, the stigma started in school when he was labeled “mentally retarded.”
“I felt I was really being treated the wrong way when that word is used. It’s like, whenever it was used, it felt like I was not independent, learning bad, struggling with homework. I felt like my life was uncomfortable.” Sam’s words echo through the world of ID/DD, as the term “mental retardation” was only removed from the Federal Register in 2013.
In 2012, there were more than 115,000 people with ID/DD living in large-scale community facilities. More than 120,000 were waiting for receive funding for home- and community-based services such as those provided by Laura, a state social work contractor in Idaho.3
Laura’s own son, who is on the autism spectrum, is stigmatized by neighbors as being “dangerous,” though he is a sweet, gentle young man who loves swimming and his family. Laura has participants through her agency who live independently. Many also hold jobs and are ambassadors for the Special Olympics.
“They have the same desires and interests as anyone else,” stated Laura.
A lack of education
One of the main reasons these stigma still exist is the fact that people without ID/DD remain uneducated about those with the disabilities. Even those who are tasked with taking care of teens and adults with ID/DD are often not given the tools necessary to assist those with ID/DD.
This lack of education results in people being restrained by their caregivers, students being locked in rooms during classes, and adults stuck living in group homes when they are perfectly capable of living on their own.
Laura has asked many in her circle what would change the perceptions of those with ID/DD, and for her it does come down to education. “Unfortunately,” she says, “people take the education they are given and either use it or ignore it. Just because someone is provided the information regarding a population doesn’t mean their perception will change.”
Each fall, Laura teaches for an hour at her son’s school, educating his teachers and peers about ASD and the other conditions he has. Once she has shared her information with this group, “they treat my son with respect and patience,” says Laura. “It’s amazing what a little education can do.”
Does stigmatization lead to budget cuts?
A lack of education at the personal level leads to effects for individuals, which is harmful enough. However, a lack of education at a governmental or organizational level can affect the entire population of those with ID/DD.
Many of the services which allow Laura’s participants to hold jobs, live independently, and seek education are paid for through Medicaid. Medicaid is budgeted through the state, regardless of the state. These budgets are prepared by members of the legislature. Based on the law of averages, not every member of the legislature is going to be fully educated as to how the Medicaid budget will be used.
Even members of the state agency which advocates with the legislature might not be educated regarding all participants in their programs, especially adults with ID/DD. Laura surmises that because many of the participants are nameless and faceless, the stigmas persist and are reflected in budget cuts.
Laura’s agency once had 12 hours per participant budgeted for plan development. This has been whittled down to just 6 hours, yet the plans typically take 10 hours to complete. The state of Idaho has a Medicaid budget of $492 million. As Tom Mortell of the Idaho Business Review pointed out, many people don’t realize that much of this budget is used to fund healthcare for those who don’t have insurance, like many (if not all) adults with ID/DD.
Change on the horizon?
One can only speculate if education and inclusion, such as what Laura does with her own son, can help end the stigmatizing of those with ID/DD. Ignorance remains even in the 21st century. A woman in a wheelchair reported to Laura that people have used her wheelchair to lean on without asking. “My assistive devices are an extension of me and should not be violated,” she said. “Would you sit on someone’s lap at a store? Then don’t sit on parts of my wheelchair.”
Until education is thorough enough to force out such ignorance and stereotypes, it’s unlikely that the stigmatization of persons with disabilities will ever be eradicated.
Hurst, D. (2014, March 19). Medicaid in Idaho: More costly now than nearly the entire state budget from 10 years ago. IdahoReporter.com. Retrieved 13 July 2015.
James, H. E. (2015, July 9). Life as a State Social Work Contractor. CareersInGovernment.com. Retrieved 13 July 2015.
Mortell, T. (2015, July 14). Medicaid redesign is important for Idaho’s businesses. Idaho Business Review. Retrieved 14 July 2015.
Intellectual Disability and a Path to Overcoming Stigma: My Conversation with Sam | ACAT: Ala Costa Adult Transition Program on WordPress.com. (2014, May 5). Retrieved 9 July 2015.
Change in Terminology: ‘Mental Retardation’ to ‘Intellectual Disability’. (2013). Retrieved 10 July 2015.
From Awareness to Respect | Disability.Blog. (2012, March 26). Retrieved 9 July 2015.
Social Work and the Ideals of Social Justice | UNE Online. (n.d.). Retrieved 14 July 2015.
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