March: #DD Awareness Month

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March Awareness Month

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Why Exposure is Necessary: Attitudes towards People with ID

To change attitudes towards people with intellectual disabilities, we must promote exposure and diminish the culture of isolation faced by individuals with IDs and their loved ones.

This past July (2015), the Harris Poll conducted an online survey and published its comprehensive findings on Americans’ attitudes towards people with IDs in the “Shriver Report Snapshot: Insight into Intellectual Disabilities in the 21st Century.

As the younger sister of someone with Profound ID, the stories of parents feeling pressured by strangers and even family members to isolate their child from society is all too familiar. The uncomfortable glares and unwarranted comments on his/her behavior in public or at home. Fortunately, I grew up with loving parents who were never affected by the ignorance that looms over the nation.

My brother Doug loves public spaces like the grocery store. In fact, he loves going anywhere that is bustling with people. Why shouldn’t he?

“Exposure is a key indicator of Americans’ attitudes toward people with intellectual disabilities. Despite gains in visibility, the estimated 3 to 9 million people with ID living in the United States remain isolated from the rest of society.” -The Shriver Report Snapshot, 2015

Often, ignorance fuels negative attitudes towards any group of people. As revealed in the Shriver Report, millennials (young adults) in America tend to have more “progressive attitudes” towards people with ID due to their increased exposure and interaction (The Shriver Report Snapshot, 2015). For effective reform to occur for people with IDs, we need an informed public to drive the change we need in shaping future policy changes.

We need inclusion, not exclusion.

Reference: 

The Shriver Report Snapshot. Announcing ‘The Shriver Report Snapshot: Insight into Intellectual Disabilities in the 21st Century.’ [Press Release]. Retrieved from http://mariashriver.com/blog/2015/07/press-release-shriver-report-snapshot-insight-intellectual-disabilities-21st-century/

 

 

 

 

 

What is Jonathan’s Law? [Part I]

A Brief Look at New York State’s Jonathan’s Law 

I will be uploading a infographic later this week to provide a more comprehensive look at the law and life story of Jonathan Carey, the 13-year old boy with disabilities whose death at O.D. Heck (a state institution) prompted the advocacy leading to the creation of this law.

1. What is Jonathan’s Law?

Referring to the amendments made to the New York State Mental Hygiene Law, specifically sections 33.23 and 33.25. Under this law, the facility must:

  •  inform “qualified persons” of any accident or injury that affects the health or safety of a person receiving services, and
  • provide documents or records relating to any patient abuse or mistreatment to qualified person(s).

The law is named after Jonathan Carey who asphyxiated after being “slowly crushed to death in the back seat of a van by a state employee” at OD Heck on Feburary 15, 2007 (Hakim, 2011)

*OD Heck was a state facility operated by the OPWDD, the New York State Office for People With Developmental Disabilities and closed down this past March,2015).

2. Who falls under the “qualified person(s)” category? 

  • Parents or legal guardians of minor patients

  • Family members or adult children who are legally authorized to make health care decisions on behalf of adult patient

  • Adult patients who have been determined by a court to be legally incompetent.

References:


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Part II: Myths About Intellectual Disabilities

1. MYTH: Intellectual Disability is different from Mental Retardation

“Intellectual Disability” or IDDs (Intellectual and Developmental Disabilities) is the preferred term for the more outdated term, “Mental Retardation. ”[1]

In 2010, Rosa’s Law was passed. This required the federal government to replace the term “mental retardation” with “intellectual disability” from all federal health, education, and labor policy.[2]

However, some states still use the term “mental retardation” [3] and some programs, including the NY program my brother attends, continue to use the outdated terminology.[4]

Prior to my own research, I had no idea it was labelled outdated because it is still used by doctors and developmental disability center staff to this day.

It may take time for the appropriate term, Intellectual Disability, to catch on, but you can help by passing on this information. ←

2) MYTH: Intellectual Disabilities only affect minorities and impoverished countries.

Developmental Disabilities, which include intellectual disabilities, affect all racial, ethnic, and socioeconomic groups. The condition can be found anywhere in the world. [5]

3) MYTH: Intellectual disabilities are all caused by [__?__]:

In most cases, the cause of an intellectual disability is unknown.

According to the Center of Disease Control, “it can be caused by injury, disease,”[6] or trauma to the developing brain before, during, or after birth (i.e. anytime before the individual turns 18).

Doctors have found a specific cause in only 25% of cases, and some of the known causes include (but are not limited to)[7]:

Click here for  Cited Works .PDF Link Continue reading

3 Myths about Intellectual Disabilities (formerly known as “Mental Retardation”) Pt. 1

People with an intellectual disability, which is popularly known as “mental retardation,” are PEOPLE foremost. They are more than just the sum of their disabilities. They are capable of a lot and can live very satisfied lives, just like you.

1.  Intellectual Disabilities/Mental Retardation is a Mental Illness?

  • I.D. or Mental Retardation is a condition that means a person develops mentally at a slower rate than average in “learning, reasoning, problem solving, and so on.”
  • They are capable of learning and showing progress when given the necessary education, care, and intervention.

2. Everyone diagnosed with I.D./M.R. are violent and grow up to be criminals.

3. They do not have feelings or recognize emotions.

  • In fact, people with I.D./M.R. “have the same range of feelings and emotions as anyone else.”
  • Intellectual disability is a condition defined by limitations in intellectual functioning and adaptive functioning, which refer to mental capacity (i.e. learning) and behavioral skills (such as language and literacy skills, social skills, and basic personal care skills).
  • It does not stop a person from having the capacity to feel emotions such as sadness, anger, and fear.
  • People with disabilities, especially those who are nonverbal, are often targets of abuse because they cannot report the harm being done to them and are seen not as human beings.
    • In addition to the long list of abuses Twenty-year old K.C. endured at Oswald D. Heck Developmental Center prior to his death, the state-workers never called him by his name and instead referred to him as: “it,” “the thing, “the sparrow” and “the walking plague.”  Read more about K.C. in the NYT article and the closure of O.D. Heck at: <http://nyti.ms/1z6bG9f>
  • If you have any knowledge of abuse, neglect and mistreatment, please contact  the Justice Center for the Protection of People with Special Needs (http://www.justicecenter.ny.govor call 1-855-373-2122. 

 

Sources: Continue reading