Sidelining Parents of the Disabled

What’s Behind US Rejection of a UN Treaty That Seems to Promote Compassion?

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By Denise Hunnell, MD

WASHINGTON, D.C., DEC. 12, 2012 ( The title of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) suggests compassion and respect for the dignity of the disabled. Yet the specifics of this treaty with the felicitous sounding name carry the potential for sinister consequences. The most worrisome aspect of the CRPD is its failure to protect the rights of parents and guardians to make decisions for their disabled children. Article 7 (2) of the CRPD makes the state the final arbiter of what is “in the best interest” of the child. Article 7(3) excludes parents and guardians completely from the decision making process:

States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.

Article 25 of the Convention compels the state to provide abortion and sterilization services for the disabled. Because the state is now the authority on what is best for the disabled, governments will be free to cite this treaty and override the decisions of parents and guardians with regards to contraception, abortion, and sterilization for their disabled children.

A recent case in Nevada makes clear that government agents have no qualms about exercising such power. Elisa Bauer, a 32-year-old disabled woman who suffers from severe fetal alcohol syndrome and a seizure disorder, was living in a group home at the time she became pregnant. Her pregnancy prompted an investigation by adult protective services. Government representatives then began court proceedings to force Elisa to have an abortion and undergo a tubal ligation in order to prevent future pregnancies. Her adoptive parents and legal guardians, William and Amy Bauer, vigorously objected to this plan due to their moral convictions against abortion. Additionally, Elisa Bauer’s neurologist who has managed her care for the last 12 years stated that Elisa had not had a seizure for at least five years and there was no evidence to suggest that her neurological condition could not be managed during pregnancy. 

Cognizant that Elisa’s decreased mental capacity made it impossible for her to raise a child, her parents found multiple couples willing to adopt and raise the baby. Clearly, Elisa’s parents were seeking a reasonable and prudent course of care for their adopted daughter and her unborn child. They did not seek to harm their daughter’s life and in fact sought to preserve the life of her unborn child. Yet their legitimate legal decision to have their daughter continue her pregnancy was challenged in court. The Nevada judicial system usurped the Bauers’ rights to determine what was in the best interest of Elisa, enabling the pro-abortion ideology of a judge, social worker, and medical professional to trump the rights of her adoptive parents to administer their guardianship.

Fortunately, the judge in this case decided to allow Elisa to continue her pregnancy. He also told the Bauers, however, that their religious convictions had no place in his courtroom and were “irrelevant.” The favorable outcome in this case offers no protection for future cases when the state assumes the right to determine what is in the best interest of a disabled person who is a minor or who is mentally incapacitated. Parents and guardians of the disabled have no assurances that their decisions for the care of their children will be respected. Instead of the state shouldering the burden of proof as to why they should overrule the will of parents, the parents must prove why their alternative to the state proposal for care is acceptable. 

It is also concerning that state bureaucrats who have many competing interests would be, under the CRPD treaty, trusted with life and death decisions for the disabled. We already have one troubling example of what this looks like in practice: the British National Health Service instituted the Liverpool Care Pathway to provide “dignified and appropriate care” to the dying. However, it has devolved into a euthanasia pathway to decrease health care costs and free up needed hospital beds. Hospitals are actually paid cash incentives to ensure as many as two thirds of the patients who die on their wards were placed on this controversial protocol prior to their death. Under this system nutrition and hydration are withheld from heavily sedated patients until they die. There have been several documented cases of elderly patients who were not dying, yet were killed under this protocol. A recent report in the British Medical Journal offers the account of a physician who confesses that disabled newborns are similarly deprived of nutrition and hydration until they succumb to an agonizing death. The doctor writes:

Like other parents in this predicament, they are now plagued with a terrible type of wishful thinking that they could never have imagined. They wish for their child to die quickly once the feeding and fluids are stopped. They wish for pneumonia. They wish for no suffering. They wish for no visible changes to their precious baby. Their wishes, however, are not consistent with my experience. Survival is often much longer than most physicians think; reflecting on my previous patients, the median time from withdrawal of hydration to death was 10 days.

Was this really the course of care that was “in the best interest” of this disabled child? Or was it more accurately in the best interest of the National Health Service to avoid costly interventions and possibly long-term commitments to a severely disabled person? Bernadette Lloyd, a hospice pediatric nurse was quoted in the Daily Mail criticizing the use of death pathways for children:

The parents feel coerced, at a very traumatic time, into agreeing that this is correct for their child whom they are told by doctors has only has a few days to live. It is very difficult to predict death. I have seen a “reasonable” number of children recover after being taken off the pathway. I have also seen children die in terrible thirst because fluids are withdrawn from them until they die.

Clearly the government’s determination of the best interests of disabled individual patients can be significantly influenced by economic pressures. Placing government agencies above parents as arbiters of medical decisions for children with physical and mental disabilities risks turning the disabled into casualties of health care spending cuts.

The Convention for the Rights of Persons with Disabilities offers many salutary statements about the dignity and rights of the disabled. All those good intentions, however, are negated when the CRPD rejects the principle of subsidiarity and undermines the rights and authority of parents and guardians. Proponents of this treaty dismiss concerns about state intrusion into parental decisions as pure speculation and unfounded. 

Yet, the experiences of the Bauer family and the numerous families affected by the Liverpool Care Pathway belie such assurances. The CRPD enshrines in international law the elevation of the state over the family in care decisions for the disabled. It was this flaw that prompted the United States Senate to reject this treaty.  Yet 65 countries have ratified the CRPD and are now legally bound by its anti-family statutes. No state agency or government bure
aucrat can love a disabled individual the way his family can. And no decision that is truly in the best interest of a disabled person can be made without that love.

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Denise Hunnell, MD, is a Fellow of Human Life International, the world’s largest international pro-life organization. She writes for HLI’s Truth and Charity Forum.

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