Study Finds Medical Procedures Violating the Civil Rights of People with Disabilities: Stunting Growth, Removing Body Parts with No Judicial Review

Study Finds Medical Procedures Violating the Civil Rights of People with Disabilities: Stunting Growth, Removing Body Parts with No Judicial Review

Washington, DC – In a first of its kind study, the National Disability Rights Network (NDRN) determined that performing certain medical procedures or withholding life sustaining treatment in non-terminal situations without judicial review violates the civil rights of people with disabilities.

The initial catalyst for the report is the so-called Ashley Treatment which received worldwide attention 5 years ago.  Ashley was a six-year-old child with developmental and physical disabilities whose growth was stopped through estrogen treatments and whose uterus and breast buds were removed. The intent of this treatment was to keep her permanently small and child-like.  NDRN believes this practice is spreading worldwide.

“The thought of doctors and guardians, together, deciding to remove the body parts and stunt the growth of a child based on assumptions about their awareness and quality of life is shocking and disgusting,” said NDRN’s executive director, Curt Decker.

Further investigations by the nation’s federally mandated Protection and Advocacy agencies, which NDRN represents in Washington, DC, have uncovered other cases in which medical treatment and even basic food and water are being denied to individuals with disabilities during minor illnesses with the intent of letting the illness progress until death.

“In one case, the parents of a 13-year-old boy with a developmental disability refused to allow him access to antibiotics so that the cold he had would progress to pneumonia. They got their wish and the boy died,” said Decker.

“Every person is born with civil and human rights and an inherent dignity,” continued Decker. “The reality that this is happening in the United States is anathema to the core values that we as Americans say we hold. That it is happening to those unable to use their own voice is even worse. This report is meant to start the conversation about how society can and should make medical decisions that uphold the constitutional rights of all people with disabilities.”

The report, “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights,” puts individuals with disabilities at the center of discourse.  It reviews the facts of Ashley X, as a case study and presents a continuum of similar experiences and treatment of individuals with disabilities within a context of medical decision making that devalues them as people and discriminates against them based on their disability.

The report explores the conflict of interest that medical decision making may present between a parent and their child.  It describes the vital role that the legal and judicial systems have in ensuring that the civil and human rights of individuals with disabilities are protected regardless of their severity and in contrast to opinions regularly expressed in the medical and ethics community.

Finally, the report presents a series of recommendations for how the legal and medical systems at a local, state and national level, including protection and advocacy agencies, ethics committees, institutional review boards, and the courts can perform critical “watch-dog” functions to ensure that the human and civil rights of persons with disabilities are protected.

Read the full report.

Download the executive summary and recommendations.

View the report webpage here http://www.ndrn.org/en/media/publications/483-devaluing-people-with-disabilities.html.

Additional References

Burkholder, Amy. “Disable girl’s parents defend growth-stunting decision.” CNN. com 13 March, 2008. http://www.cnn.com/2008/HEALTH/conditions/03/12/ pillow.angel/index.html.

Caplan, Arthur, Ph.D. “Commentary: Is ‘Peter Pan’ treatment right?” MSNBC. com 05 January, 2007. http://www.msnbc.com/id/16472931/.

Dahlstrom, Linda. “Doctor at crux of stunting debate kills self.” MSNBC.com 11 October, 2007. http://www.msnbc.com/id/21225569/.

Diekema, Doug, The Case of Ashley X, NWABR Ethics in Science Online Course, 2007.

Gibbs, Nancy. “Pillow Angel Ethics.” Time 07 January, 2007. http://www.time. com/time/nation/article/0,8599,1574851,00.html.

Gibbs, Nancy. “Pillow Angel Ethics, Part 2.” Time 09 January, 2007. http://www.time.com/time/nation/article/0,8599,1574851,00.html.

McDonald, Anne. “The other story from a ‘Pillow Angel’.” Seattle Post- Intelligencer 17 June, 2007. http://www.seattlepi.nwsource.com/ opinions/319702_noangel17.html.

Disability Employment Policy — What Are We Missing?

Disability Employment Policy — What Are We Missing?
by Guest Blogger Paul Hippolitus, Director, Disabled Students’ Program, Equity & Inclusion, University of California, Berkeley

Watch a YouTube video of Paul Hippolitus discussing UC Berkeley’s ”Professional Development and Disability” course.

As a longtime advocate and professional working in support of the employment of people with disabilities, I was very excited to recently report for work at the University of California, Berkeley — to have the privilege of assisting the University’s students with disabilities with both their education and career ambitions.  UC Berkeley has some of the “best and brightest” of our young people with disabilities, so helping them to achieve their career goals seemed to me to be the easiest assignment I would ever have.

During my first few weeks at Berkeley, I embarked on a quest to ask every student with a disability I met the question, “What’s your career goal?” I couldn’t wait to hear about their lofty goals, serious plans and impressive ambitions.

Much to my chagrin, the response I most often got (about 99 percent of the time) was the student casting their eyes to the ground and saying, ”I’m not sure, I guess I’ll go on to graduate schools; or, law school; or medical school.”

I was shocked. Our “best and brightest” were just as perplexed about their career potential as most people with disabilities.

It took several months before these students trusted me enough to tell me what they were really thinking when I had asked them my question. They candidly told me that they felt they had to stay in school as long as possible because they were afraid that when their school years ended, they would be forced to spend the rest of their lives at home, on disability benefits, watching TV, because they were sure no one would hire them.

Here I was among the highest achieving of our young people with disabilities, and they lacked a basic self-confidence about what they had to offer as productive workers. It was then I began to realize, if these students lacked self-confidence about their employment worth, surely most of our young people with disabilities must likewise doubt their employment potential.

Happily, it didn’t take much of an effort to begin to turn that lack of self-confidence around. All it took was me urging them to believe in themselves, to appreciate what they had to offer the world and to begin to teach them the knowledge they needed to get going.

Still, I wondered, why this was my experience, at this high level of academic achievement? Well, it starts with the parents, teachers, family and friends asking our young people with disabilities that empowering question, “What do you want to be when you grown-up?” While this vital question is regularly asked of our nondisabled youth, it’s too often avoided when talking with our young people with disabilities.

What kind of an impact or signal does this failure to ask such a question send to our youth with disabilities? I asked them and what they told me was it teaches them that parents, teachers, family and friends don’t expected them to work because of their disability.

So, nurturing these students’ self-confidence became my first task.  And it started by simply showing them there was at least one person who could see their employment potential.

Next, I began a paid work internship program for our students. After all, how can they compete for jobs upon graduation if they don’t keep-up with the nondisabled students who were participating in summer jobs and internships along the way?

Our new internship program was just the medicine they needed to feed their new found self-confidence. Working with the State of California Department of Rehabilitation, we were able to place many of our students with disabilities in internship or summer paid work experiences. This not only boosted the students’ self-confidence about their employment potential, it also gave them the added building blocks they needed to more successfully compete for jobs and careers upon graduation.

Our quest for summer jobs and internships created a new “sense of possibility” among our students and changed the whole campus climate. Our students began encouraging each other to seek internships. An excitement began to build around each student’s search. The students began to help each other with their internship possibilities by freely sharing internship placement information and experiences.

Still, as we move forward, one more step was clearly needed. And, it turned out to be the most important one.

After self-confidence and work experiences or paid internships, it was clear to me that there was a serious gap in the students’ knowledge about the world of work. Having never been there or educated about what the world of work expects of them, they were both unsure and ill prepared for the transition. So, this was one more piece of the puzzle needed before our program would become complete. This next component of our program was a response to the reality that the world of work is, quite literally, a new and unknown world to the uninitiated. So, if you have never experienced the workplace (internships help, but not completely) how can you expected to know the intricacies of work place culture, values and “rules of the road”, unless someone teaches you them?  If you’re not informed on these subjects, you’re more likely to make critical mistakes which can keep you from getting a job, much less sustaining a career. Since school is a great place to teach new knowledge, I started a course called, “Professional Development and Disability”. This course was designed to document and teach our students this important information.

There are numerous other school based efforts designed to teach students with disabilities information about the world of work. However, as valuable as they are, they’re rarely complete. Most often, they teach skills around “how to” look for work, prepare a resume and perform in that all important interview.  These are important skills; however, real success in getting and holding a job is knowing and understanding the deeper subtleties of the work place.

Our “Professional Development and Disability” course goes into depth on these additional considerations. It challenges the students to conceptualize how to best present themselves and their disabilities; it helps them to understand how to disarm and education employers and co-workers about their disabilities; to better understand workplace culture and values; to develop effective work place habits and practices; and to learn how to navigate disability employment considerations (accommodations, disincentives, laws and related emotional considerations).

The “Professional Development and Disability” course has helped our students; however, I am convinced that it can likewise help other young people with disabilities who are still in school, people who have recently acquired disabilities and those individuals with disabilities who have never worked before and are now considering entering the workforce.

Remember, such a course of instruction is but one of several important components needed to help make employment possible. Even so, it may be the most over looked one in our disability employment policy.

For the most part, over the years, disability employment policy has overlooked the idea of “product development”. We ask employers to hire, but we don’t spend enough time teaching applicants with disabilities how to “market” themselves effectively. One without the other is an incomplete equation.

In the words of our students in this course, “the best form of disability advocacy is your career”.

For more information:

Paul Hippolitus is the Director of the Disabled Students’ Program at the University of California, Berkeley, which was recently named one of the top five universities serving students with disabilities in the United States. The Disabled Students’ Program provides legally mandated classroom accommodations to over 1,200 students with disabilities and was one of the first of its kind in the country. Paul also serves as a member of the Board of Directors of the Berkeley Center for Independent Living and the World Institute for Disability.

New EEOC Publication Addresses Employment of Health Care Workers with Disabilities

New EEOC Publication Addresses Employment of Health Care Workers with Disabilities

Latest Q&A Fact Sheet Explains How Americans with Disabilities Act Applies to Employment in the Health Care Industry

WASHINGTON – Naomi C. Earp, Chair of the U.S. Equal Employment Opportunity Commission (EEOC), today announced the issuance of a new question-and-answer (Q&A) fact sheet on the application of the Americans with Disabilities Act (ADA) to job applicants and employees in the health care industry. The new publication, part of a series of Q&A documents about specific disabilities in the workplace and specific industries, is available on the EEOC’s web site at http://www.eeoc.gov/facts/health_care_workers.html.

Health care is the largest industry in the American economy. The health care industry provided more than 13 million jobs in 2004 and is expected to account for 19 percent of all new jobs created between 2004 and 2014 — more than any other industry. In addition, the health care industry has a high incidence of occupational injury and illness. Health care jobs may involve potential exposure to airborne and bloodborne infectious disease, injuries from syringes, and other dangers; many health care jobs can also be physically demanding and mentally stressful.

The new Q&A fact sheet provides practical information about applying ADA employment rules in health care jobs, in a variety of settings – from public and private hospitals and nursing care facilities to doctors’ and dentists’ offices and diagnostic laboratories. The occupations within the health care field are many and varied, including not only physicians, surgeons, dental hygienists and nurses, but social workers, physical therapists, medical records clerks, laboratory technicians, paramedics, home health aides, and custodial and food service workers in medical facilities.

“We should be mindful that disability does not mean inability, and that every individual deserves the freedom to compete on a fair and level playing field,” said Chair Earp in announcing the issuance of the new document. “People with disabilities represent a vast pool of untapped talent for employers, particularly in an industry that is growing as rapidly as the health care industry.”

Although the rules under Title I of the ADA are the same for employers and individuals with disabilities in all industries, this fact sheet explains how the ADA applies to some unique situations that may arise in the health care setting. Many of the real-life examples in the fact sheet are based on cases that have been decided by courts or settled by the EEOC.

Topics discussed in the new publication include:

  • When someone is an “employee” covered by the ADA (as opposed to an independent contractor);
  • When someone is an “individual with a disability” under the ADA;
  • How to determine if a health care applicant or employee with a disability is qualified for ADA purposes;
  • What types of reasonable accommodations health care workers with disabilities may need and the limitations on a health care employer’s obligation to provide reasonable accommodation;
  • When an employer may ask health care applicants or employees questions about their medical conditions or require medical examinations; and
  • How a health care employer should handle safety concerns about applicants and employees.

The EEOC’s latest ADA publication helps to advance the goals of the New Freedom Initiative, President Bush’s comprehensive strategy for the full integration of people with disabilities into all aspects of American life. The New Freedom Initiative seeks to promote greater access to technology, education, employment opportunities, and community life for people with disabilities. An important part of the New Freedom Initiative strategy for increasing employment opportunities involves providing employers with technical assistance on the ADA.

The EEOC enforces Title I of the ADA, which prohibits employment discrimination against people with disabilities in the private sector and state and local governments, and the Rehabilitation Act’s prohibitions against disability discrimination in the federal government. In addition, the EEOC enforces other federal laws prohibiting employment discrimination based on race, color, religion, national origin, sex, and age.

Further information about the EEOC is available on its web site at www.eeoc.gov.The new publication, part of a series of Q&A documents about specific disabilities in the workplace and specific industries, is available on the EEOC’s website at www.eeoc.gov/facts/health_care_workers.html.