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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Inquest Scheduled Into Baby Luke's Death
By Dave Reynolds, Inclusion Daily Express
April 28, 2005

LIVERPOOL, ENGLAND--May 9 has been set as the date for a formal inquest into the death of Luke Winston-Jones, the Trinity Mirror reported Wednesday. The inquest is expected to last just one day.

The 10-month-old boy died on November 12, 2004, just three weeks after the High Court Family Division ruled that doctors could refuse to resuscitate him when he stopped breathing.

Doctors at two hospitals said Luke had three holes in his heart and was diagnosed with Edwards syndrome, also known as "trisomy 18". Many experts say that most babies with the rare genetic condition usually die before reaching their first birthday.

His mother, Ruth Winston-Jones, insisted that her son was "a fighter who had defied the odds" and should have been given the chance to continue his fight.

The High Court Judge, Dame Elizabeth Butler-Sloss said she used as guidance another court's October 5 decision allowing doctors to refuse a ventilator for Charlotte Wyatt if she stops breathing. Charlotte was born three months premature. If she stops breathing she will only be kept alive long enough for her parents to come and be with her when she dies.

As life-sustaining technology has improved over recent decades, the debate over how long to provide such treatment has intensified. Hospitals, doctors, and medical attorneys have argued that keeping people with severe disabilities or chronic medical conditions on ventilators for long periods of time is costly and seriously impacts their "quality of life".

Many disability rights groups, and other advocates, have argued that medical professionals should not be the ones to judge the value of patients' "quality of life".

Related:
"Judge: Doctors Can Refuse 'Aggressive Treatment' For Baby Luke" -- October 22, 2004 (Inclusion Daily Express)

http://www.inclusiondaily.com/archives/04/10/22/102204ukbabyluke.htm

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