6 months old, and left to die.

Dear DRI Supporters,

6 month old boy whose head recently burst due to untreated hydrocephalus. Doctors expect the boy to die "anytime."

Several weeks ago, I visited a baby house in Eastern Europe. It houses about 130 infants and small children, a third of whom are children with disabilities. Most babies are eventually returned to their birth parents, put into foster care or are adopted. But not the babies with disabilities. They have nowhere to go. Among children with disabilities, almost 30% died last year.

I walked with trepidation into each dark room. In the middle of the day, not a sound. Not one child crying. They learn quickly that no one comes. One room after another, children with disabilities lay dying. Hydrocephalus and spina bifida are left untreated, despite the fact that the country has the means to care for these conditions. I was told that doctors will not perform surgery on children with disabilities who “have no future.” And many die from lack of touch and love, despite adequate food and heat.

One six month old baby with hydrocephalus still haunts my dreams. The condition (caused by a buildup of spinal fluid in the head) can easily be corrected by the insertion of a shunt. But instead, this little boy had a “burst” -his head blew a hole from the pressure. He lay in his crib dying an agonizing death.

Millions of babies and children around the world are suffering the same fate-left to grow up in institutions without the hope of having a family. Many are denied medical care and left to die. We need to stop this. Segregation from society – or leaving children to die – is a fundamental violation of international human rights law and must not be tolerated in any society. That is why DRI is working towards the end of the institutionalization of children with disabilities worldwide.

This can change: doctors and societies need to understand the value and human rights of every human being’s life; governments need to support families to keep their children with disabilities at home by providing financial support, inclusive education and respite care; and international donors, including the US government and the European Union, need to stop funding segregated services and more institutions to shut away children with disabilities. Children with disabilities have the right to grow up with a family and live as part of society – just like other children.

It’s that simple.

DRI is training disability activists, educating international donors, getting the word out to the media, and holding governments accountable for human rights abuses worldwide. Please click here to make a contribution to support our work. We need your help. We really do.

Warmest regards and much love.

Laurie Ahern,
President

JRC Banned from Shocking New Admissions

November 7, 2011– Washington, DC – This week we can celebrate a major victory against torture of people with disabilities in the United States.   The Massachusetts Department of Developmental Services (DDS) adopted new regulations last week that greatly restrict the intentional use of pain as a form of treatment – including the use of electric shock, seclusion, and restraints on young children and adults with disabilities. As documented by a recent report by Disability Rights International (DRI), Torture Not Treatment, The Judge Rotenberg Center (JRC), based in Canton, Massachusetts, has used these practices, called “aversive treatment” for decades.

Facilities licensed by the DDS in Massachusetts can no longer subject new admissions to severe behavioral interventions including electric shock, long-term restraint, or aversives that pose risk for psychological harm – in other words, mainstays of JRC’s “treatment” program.

No other institution in the country – or the world, as far as we can tell – uses such barbaric practices. DRI’s investigation found that the pain caused by this is so severe and outside accepted professional norms, that these practices constitute nothing less than torture. By permitting such treatment, the United States violates its obligations under international law, as defined by the UN Convention Against Torture. DRI filed our report, Torture Not Treatment, in 2010 as an urgent appeal to the United Nations. The top official on torture at the United Nations agreed with DRI, and when asked by ABC Nightline if the practices were torture, he

Child at JRC tied to 4-point restraint board and wired to shock device

declared, “Yes…I have no doubts about it. It is inflicted in a situation where a victim is powerless…a child in the restraint chair, being then subjected to electric shocks, how more powerless can you be?”

We applaud Massachusetts Governor Deval Patrick on taking a courageous stand by issuing an executive order for the Massachusetts DDS to review their policies regarding electric shock and other severe aversives.

The resulting new policy puts an end to the use of JRC’s electric shocks on new admissions.But we can’t declare success yet. While hundreds of children will be spared from JRC’s behavioral experiments in the future, the new policies do not stop JRC from shocking and causing psychological damage to children already placed in the center. These children and young adults remain prisoners in a very dangerous environment. The center has been repeatedly investigated for suspicious deaths and physical abuse. JRC has been fined for identifying some clinicians hired by the school as psychologists, when in fact, they were not licensed psychologists. And as a result of an investigation into a case of abuse at the facility, JRC’s director was forced to resign earlier this year after being charged with misleading a grand jury about the investigation.

DRI is encouraged by the bold statement by the US National Council on Disabilities, a federal advisory body, which cited DRI’s report, as well as the international definition of torture, to call for the use of painful shock aversives to be brought to an end.

DRI urges the Department of Justice and the Obama Administration to fullfil its obgligations under the UN Convention Against Torture. DRI calls for a blanket ban on the use of electric shock as aversive treatment for children or adults with disabilities across the nation. There is nothing stopping JRC from shocking kids already in their center — or moving their facility to a different state to avoid the new Massachusetts regulations. The Department of Justice has an open investigation into the treatment of children at JRC. We ask you to  write a personal appeal to the investigators to help ensure that this torture is put to an end once and for all, and is never allowed to be duplicated anywhere else in the United States.