Dear Governor Perry,

I am writing on behalf of Not Dead Yet, a national disability organization that
fights legalization of assisted suicide, euthanasia and other types of medical
killing. The Texas chapter of Not Dead Yet has been part of the effort to
overturn the current draconian "futility" statute in your state - an effort that
has been effectively stonewalled by the special interests of medical facilities,
medical professionals and bioethicists'.

Unfortunately, the latest implementation of this statute can't wait for a change
in the law. Emilio Gonzales, who is 16 months old, will die next week when
the Children's Hospital of Austin removes him from a ventilator.

According to news reports, Emilio's use of a ventilator lacks "dignity" and
merely "prolongs death," according to the ethics committee at Children's
Hospital.

As president of this national group, I can tell you that the nation has been
watching Texas for some time with increasing alarm.

On behalf of our allies in Texas and their concerned allies around the country,
I request you order a "stay of execution" for this young child.

If you need reasons other than simple humanity, here's one that might help:
Since Emilio is a Medicaid recipient, he falls under the protections afforded
by Section 504 of the Rehabilitation Act of 1973. Removal of his ventilator
- against the express wishes of his mother - violates his civil rights under
Section 504. In addition, the due process right to a hearing arises when
Medicaid benefits and services are reduced for an individual. If the recipient's
parent has even been duly notified of this right, no such hearing has taken place.
Any theory that the ethics committee procedure satisfies Medicaid hearing
requirements is ludicrous.

But right now, what's most important is a child whose brief life will be snuffed
out shortly - and with not even one of the protections that would be afforded
death row prisoners.

Please intervene. Now.

Sincerely,


Diane Coleman, J.D.
President
Not Dead Yet
7521 Madison St.
Forest Park, IL 60130
708-209-1500 ext. 11
www.notdeadyet.org

The following comments are from Steve Gold, a well-known and highly dedicated lawyer from ADAPT. Steve was the one who fought for the rights of person's in nursing homes to be able to live in the community. The case he won became the case which Olmstead vs. LC/EW was based primarily on.

What follows :1. the email Steve sent to NDY group earlier today and 2. why isn't this a 45 CFR 84.(b) violation?

Re #1: Someone wrote that the Texas 16 month old situation was "complicated.; that is not correct. In many ways, this is the clearest ADA/Section 504 violation - denying appropriate medical services and benefits based on severity of condition.

The baby has Leigh's Disease, a rare degenerative muscular and respiratory disease. Prospects are not good. But her life expectancy is NOT the issue.

The ADA issue is that she is on a vent and a feeding tube from which she receives her basic nutritional needs. With these, this baby could live for some time. Without these, she will die immediately. The Childrens' Hospital in Austin, TX, has told the mother that she must remove the baby from the hospital because the hospital contends it can do no more for her. [I am unclear if the hospital has threatened to remove the vent and feeding tube. ]

But it is not correct that the hospital cannot provide medially appropriate health services. No other facility will, apparently, take the child without a trach, so they could incubate the child .The hospital could medically insert a trach. The hospital apparently says this is a difficult procedure. But the option between fairly certain death without a trach and the dangers/difficulties of a trach seem like an easy decision.
Now the ADA issue: if her condition were less severe, the hospital would insert the trach and the course of the underlying disease would progress. Without question, this hospital and others have used a trach and feeding tube for other children. The hospital is discriminating against this 16 month old child under Section 504/ADA based on the severity of her condition. Other children, with less severe medical conditions who need a feeding tub and trach, are provided those health benefits. Undr 504, there is caselaw that a "recipient of federal financial assistance" discriminates when it denies servcies and benefits based on the severity of a condition.

We hope CMS/OCR has notified the hospital that under Section 504/ADA the hospital cannot discriminate against this child. Wouldn't it be nice if DOJ got involved.

Re # 2 : Look at the underlined portions of 45 CFR 84 that should apply.
Discriminatory actions prohibited. (1) A recipient, in providing any aid, benefit, or service, may not, directly or through contractual, licensing, or other arrangements, on the basis of handicap:

(i) Deny a qualified handicapped person the opportunity to participate in or benefit from the aid, benefit, or service;

(ii) Afford a qualified handicapped person an opportunity to participate in or benefit from the aid, benefit, or service that is not equal to that afforded others;

(iii) Provide a qualified handicapped person with an aid, benefit, or service that is not as effective as that provided to others;

(iv) Provide different or separate aid, benefits, or services to handicapped persons or to any class of handicapped persons unless such action is necessary to provide qualified handicapped persons with aid, benefits, or services that are as effective as those provided to others;

(v) Aid or perpetuate discrimination against a qualified handicapped person by providing significant assistance to an agency, organization, or person that discriminates on the basis of handicap in providing any aid, benefit, or service to beneficiaries of the recipients program or activity;

(vii) Otherwise limit a qualified handicapped person in the enjoyment of any right, privilege, advantage, or opportunity enjoyed by others receiving an aid, benefit, or service.