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The discrimination that led to Rowan’s death exists.

A letter from the chairman of the Special Olympics:

http://www.ghdnews.com/index.php/global-health-challenges/feature/56-left-behind-health-care-and-people-with-intellectual-disabilities

I’m also going to make a very clear point. Nearly all of the studies over the last decade that tackle the endemic healthcare discrimination that clearly exists against people with intellectual disabilities DO NOT come from the USA. No one is even looking at this as a problem here, and they certainly don’t pay attention to the rest of the world. My son would still be alive if we were in Canada, Australia or the UK. I am furious and utterly broken.

Below are the relevant references from a detailed search of PUBMED (the definitive database of medical and biomedical literature) over the last 20 years (Keywords: Intellectual disability, discrimination, healthcare). Of the 35 search results, 11 dealt directly with healthcare discrimination against individuals with intellectual disabilities. Fundamentally, they all describe profound and systematic discrimination against people with intellectual disabilities. Not one report came from the US.  They conclude that this systematic discrimination begins very early in life for those who differ from the norm, and prevents access to adequate healthcare, as well as dramatically reducing the quality of care that they do receive. Children and adults with intellectual disabilities were also identified by these studies as one of the MOST at-risk populations for suffering the serious negative consequences of discrimination, not just in healthcare but in all areas. More so than groups discriminated against on the basis of race, age, sex and gender.

Even in the countries that have taken steps to investigate this discrimination and propose solutions, the conclusion is that medical and social discrimination against people with intellectual disabilities is still a major problem that needs much more effort to even begin to correct. Countries like the UK, Canada, Mexico, Australia and Singapore have at least taken the first small steps by studying and acknowledging that discrimination against such a vulnerable group exists. Our US healthcare system, government and scientific community is failing even that basic responsibility.

REFERENCES

Discrimination and other barriers to accessing health care: perspectives of patients with mild and moderate intellectual disability and their carers.

Ali A, Scior K, Ratti V, Strydom A, King M, Hassiotis A.

PLoS One. 2013 Aug 12;8(8):e70855. doi: 10.1371/journal.pone.0070855. eCollection 2013.

Stigma and restriction on the social life of families of children with intellectual disabilities in Vietnam.

Ngo H, Shin JY, Nhan NV, Yang LH.

Singapore Med J. 2012 Jul;53(7):451-7.

Validation of the attitudes toward intellectual disability: ATTID questionnaire.

Morin D, Crocker AG, Beaulieu-Bergeron R, Caron J.

J Intellect Disabil Res. 2013 Mar;57(3):268-78. doi: 10.1111/j.1365-2788.2012.01559.x. Epub 2012 Apr 25.

Care adjustments for people with learning disabilities in hospitals.

Blair J.

Nurs Manag (Harrow). 2011 Dec;18(8):21-4.

Overcoming ignorance and stigma relating to intellectual disability in healthcare: a potential solution.

While AE, Clark LL.

J Nurs Manag. 2010 Mar;18(2):166-72. doi: 10.1111/j.1365-2834.2009.01039.x.

Problems, problems: you are such a problem!

Shaw S.

J Intellect Disabil. 2009 Jun;13(2):99-112. doi: 10.1177/1744629509336484.

The balance of power in therapeutic interactions with individuals who have intellectual disabilities.

Jahoda A, Selkirk M, Trower P, Pert C, Stenfert Kroese B, Dagnan D, Burford B.

Br J Clin Psychol. 2009 Mar;48(Pt 1):63-77. doi: 10.1348/014466508X360746. Epub 2008 Oct 10.

Attending to the health needs of people with intellectual disability: quality standards.

O’Hara J.

Salud Publica Mex. 2008;50 Suppl 2:s154-9. Review.

The experiences of adults with intellectual disabilities and their carers in general hospitals: a focus group study.

Gibbs SM, Brown MJ, Muir WJ.

J Intellect Disabil Res. 2008 Dec;52(12):1061-77. doi: 10.1111/j.1365-2788.2008.01057.x. Epub 2008 May 5.

[Canadian mental health rights in an international perspective].

Weisstub DN, Arboleda-Flórez J.

Sante Ment Que. 2006 Spring;31(1):19-46. French.

And some hopeful steps:

MacArthur, J et al (2015)  “Making reasonable and achievable adjustments: the contributions of learning disability liaison nurses in ‘Getting it right’ for people with learning disabilities receiving general hospitals care

http://onlinelibrary.wiley.com/doi/10.1111/jan.12629/full

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Dear Rowan,
I’m sorry that I was so naive. I’m sorry I didn’t know to do this research, to be more aware.
I knew that you would meet discrimination someday, but I didn’t know that I needed to be so aware at the age of only two. I thought that was a hurdle to be faced well into the future, after I no longer held you in my loving arms.
You were so wonderful, and embraced the world around you. I thought that they saw you, how could they not?
I never suspected, even in those first few months after they took you from me.
I’m sorry, and I promise.
As long as I live, I will work to make sure that the world sees the Rowan that I know, and that I hold in my heart forever.
Love, Mom

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Reference section was compiled by Rowan’s father, Daniel, a medical researcher at UCSD.  To view Daniel’s profile, please click here.