Miller v. HCA brief

STEPHEN F. GOLD

125 S. 9^th Street

Suite 700

Philadelphia, Pa. 19107

215-627-7100

215-627-3183 (Telecopier)

Of Counsel

Diane Coleman

COUNSEL FOR AMICI CURIAE

BRIEF OF AMICI CURIAE IN
SUPPORT OF RESPONDENTS

I. INTERESTS OF THE AMICI CURIAE [1]

Amici curiae, Not Dead Yet, ADAPT, The ARC of the United States, United Cerebral Palsy Associations, The ARC of Texas, TASH, the American Association of People with Disabilities, World Institute on Disability, United Cerebral Palsy Association of Texas, Coalition of Texans with Disabilities, Texas Advocates Supporting Kids with Disabilities, Austin Resource Center for Independent Living, Texas Association of Centers for Independent Living, the Texas Civil Rights Project, the Center for Housing and New Community Economics, the ABLE Center for Independent Living, the Houston Center for Independent Living, the Brazoria County Center for Independent Living, VOLAR, the Center for Self-Determination, and Advancing Independence: Modernizing Medicare and Medicaid, request that this Court affirm the decision below and not support this wrongful life lawsuit. [2]

Your amici curiae approach this case from a disability discrimination viewpoint. This Courtπs decision will affect thousands of newborns each year who have, who are regarded to have, or who are believed may have disabilities. It also affects how society values the millions of people who are alive today and who have severe disabilities similar to those of Sidney Miller.

This case is about disability. It is not about medical malpractice, or the common law of negligence, or about advance directives, or about the validity of consent. This case is about an assessment of an unborn or newbornπs potential quality of life as viewed through a societal prism in common use by a substantial portion of the medical community and many potential parents and which at its fundamental core devalues the worth of children and adults with severe disabilities.

This case is about whether medical treatment can be withheld from a premature infant at birth solely because the infant may be or become disabled. It is about whether a hospitalπs accepted medical protocol - to treat equally all newborns over a minimum weight, to not discriminate against premature infants who may develop disabilities, to provide all newborns the appropriate medical care and treatment - will be upheld. This case is about discrimination based on disability.

This case, despite all the emotional issues, is about whether Sidney Miller as a child with possible disabilities had the right to live and should be living today. It is about whether this Court will sanction the discrimination that would have occurred if Respondents had withheld appropriate medical care and treatment just because Sidney Miller, before she was born and right when she was born, had actual and potential disabilities.

B. HISTORICALLY, THERE HAS BEEN WIDESPREAD MEDICAL TREATMENT DISCRIMINATION AGAINST CHILDREN WITH DISABILITIES

The instant case presents the issue of protecting newborn children with actual or potential disabilities from the medical discrimination that pervades our country, historically and still today. Such discrimination has been and is committed by governmental entities, health providers and sometimes parents. [6] Medical discrimination against children with disabilities occurs when children with disabilities do not receive the same medical treatment that nondisabled children receive. It occurs by omission when available and appropriate medical treatment is not provided because the child is disabled or, in the case of a newborn, is regarded as likely to become disabled. It also occurs by commission when medical treatment is used to hasten death, again, because the child is disabled.

The United States Commission on Civil Rights issued the report entitled Medical Discrimination Against Children with Disabilities (1989)(hereinafter Commission of Civil Rights Report). Among the information considered by the Commission was an experiment conducted from 1977 to 1982 at the Childrenπs Hospital of Oklahoma. Doctors there developed a quality of life formula for babies with spina bifida which took into account the socioeconomic status of the babyπs family to determine what to advise parents about a simple but life-saving procedure. Better-off families were provided a realistic and optimistic picture of the childπs potential, while poor families were provided a pessimistic picture. Four out of five poor families accepted the doctorsπ advice and 24 babies lost their lives.

The Commission on Civil Rights Report deals with many of the issues involved in the present litigation, including the relationship between physician and parents with newborns who are or may become disabled, how physicians devalue persons with disabilities, the role quality-of-life assessments play in decisions regarding withholding medically indicated and appropriate treatment from disabled newborns and infants, and the universal acceptance of state intervention in medical treatment decision-making if the children do not have disabilities but the frequent failure of the state to intervene if the children are disabled.

The report pointed out that a significantly high incidence of medical discrimination against children with disabilities exists that is part of a much larger pattern of medical care discrimination against people with disabilities. (At 8). The Commission on Civil Rights Report pointed out that the incidence persisted even though Congress had enacted the Child Abuse Prevention and Treatment Act, see infra., three years earlier. The Commissionπs conclusions were based on a variety of sources, including the repeatedly declared views of physicians set forth in professional journal [and] surveys of health care professionals. (At 8 and 103-110).

The irony is that the incidence of discrimination is normally manifested in the denial of appropriate medical treatment to children because they are disabled, whereas in the instant case the Respondentsπ policy and actions were to affirmatively provide the appropriate medical treatment, not to discriminate based on disability.

Your amici believe this Honorable Court must be aware of the historical context of the instant action.

1. The role of health providers.

In the instant case, the record is not clear regarding the role that the physicians played or what influence they had in Petitionersπ alleged decision to deny medical treatment. [7] As the Commission of Civil Rights Report noted

physicians with a bent toward denial of treatment for persons with disabilities can be quite insistent in conveying negative information... [T]he manner and content of the medical providerπs presentation of the issue will be decisive in the parental decision whether to authorize treatment. Unfortunately, there also exists misinformation among many health care personnel and bioethicists advising parents on the advances and alternatives available to children with disabilities. (Id at 2, see also 26 -31).

Many parents, like the Petitioners, know very little about disability at the time they first learn that their child may have or does have a severe disability. They might be terribly guilty that they are the cause of their childπs disability and probably are very confused when they are told by a doctor that their newborn will be or will likely become disabled. Naturally they rely on the doctorπs opinion and judgment, and at least unconsciously they rely on their own stereotypes of and prejudices toward people who have disabilities. They may never have met or spoken with children who have disabilities or their parents.

Most obstetricians are no different than the Petitioners in their lack of experience with and knowledge of disability, other than the general stereotypes society presents. They may not have friends who have disabilities, have never gone to watch a professional basketball game with a disabled teenager, or talked to severely disabled adults about whether they perceive their lives have quality. Their medical treatment of newborns ends at the delivery, without any on-going experience with how the newborn grows into an infant, adolescent and young adult. Consequently many treating health providers give medical opinions based primarily on non≠medical experiences, but on the same societal stereotypes that non-medical persons have.

This is confirmed by so-called medical judgments regarding the effectiveness of medical procedures for disabled and nondisabled. The former Surgeon General C. Everett Koopås observations on the famous Baby Doe case show the extent to which medical judgments are imbued with such discrimination. Baby Doe was a child who was born with an obstruction in the esophagus, whose blood was not properly oxygenated, and who also had Down syndrome. Baby Doeπs obstetrician said he

would be severely retarded, something no one could possibly have known at that stage of the childπs development. He referred to the newborn as a blob and he said that the mortality for surgical procedure to correct the esophagus was 50%. To indicate how wrong that prediction was, I have repaired 475 such defects and in the last eight years of my practice, I never lost a full term baby and my survival for prematures was 88%. Koop at 109.

2. Medical discrimination against children with disabilities.

It is discrimination and a violation of human rights, basic civil rights and Section 504 of the Rehabilitation Act of 1973, 29 U.S.C. ß 794a, only when [medical treatment] decision making is influenced by factors extraneous to the science and art of medicine: when color, race, age, handicap, or national origin lead to a difference in treatment despite being irrelevant to the bona fide medical judgment. Commission on Civil Rights Report at 3 (emphases added), see also 61 -78. In the instant case, the hospital had a policy to resuscitate all newborns who weighed more than 500 grams, as Sidney Miller did. If the hospital had not provided the same medical treatment and conducted the same medically appropriate procedures for Sidney that they provided to other children who were not severely disabled, the respondents would have participated in medical discrimination based solely on the potential disability.

3. Denial of treatment to newborn children with disabilities.

The Commission wrote that there was

no doubt that newborn children have been denied food, water, and medical treatment solely because they are, or are perceived to be, disabled.... [T]he discriminatory denial of treatment was [frequently] based on ignorance and false stereotypes about the åquality of lifeπ of persons with disabilities and ... misconceptions about the nature of the particular disability the child would have if he or she were permitted to survive.

Commission on Civil Rights Report at 2, see also 103-110. Respondents did not deny Sidney Miller treatment but, just the opposite, provided her with the same treatment as nondisabled children.

4. Quality of life assumptions in the denial of medical treatment.

Certainly the Petitioners in the instant case after consultation with their doctor must have believed that it was in the childπs best interest not to have a life that Petitioners believed would be of unacceptable poor quality. Most adults with disabilities, including those who have been disabled since birth, choose life and have quality in their lives. Your amici curiae are living evidence of this. The Commission on Civil Rights concluded that the

bases typically advanced to support the denial of lifesaving medical treatment ... based on disability - that the quality of life of a person with a disability will be unacceptably poor, or that such a personπs continued existence will impose an unacceptable burden on his family ... - are often grounded in misinformation, inaccurate stereotypes, and negative attitudes about people with disabilities. A county committed to the civil rights of all should address the very real problems people with disabilities and their families face ... - not by eliminating those with disabilities. At 47.

Koop suggests that the person to ask is an individual who has a disabling birth defect. Koop at 105. He asked his patients who had severe disabilities and pointed out that there was no doubt about how such young people feel about the joy of living, despite the time-consuming and usually painful medical and surgical procedures they have endured to correct birth defects or those discovered in early childhood. Id. Your amiciπs lives are full of quality and joy.

The Commission warned that

[t]o accept a projected negative quality of life for a child with a disability based on the difficulties society will cause the child, rather than tackling the difficulties themselves, is unacceptable. The Commission emphatically rejects the view that an acceptable answer to discrimination and prejudice is to grant the åright to dieπ to those against whom the discrimination and prejudice exists. It is not tolerable to choose death for children with disabilities as the societal response to unjust treatment of people with disabilities. Id at 33.

Your amici urge this Court to reject the negative historical stereotypes regarding the quality of life that persons with severe disabilities have. With appropriate community supports, a good educational system, and personal attendant care services, such as the type that Sidney Miller needs, people with disabilities live quality-lives and are happy to be alive.

B. RESPONDENTS WOULD HAVE CONTRAVENED THE CHILD ABUSE PREVENTION AND TREATMENT ACT IF THEY HAD WITHHELD APPROPRIATE MEDICAL TREATMENT

Pursuant to the Child Abuse Prevention and Treatment Act, 42 U.S.C. ß 5101 et seq., participating States receive federal financial assistance for their child abuse and neglect services as long as the State complies with the federal minimum requirements. [8] The statute is intended both to prevent abuse and to treat children so that child abuse does not occur. While federal implementing regulations do not require States to adopt the federal definition of Child Abuse and Neglect, they do require that the definition used in the State is the same in substance as the term is used in the federal statute and regulations. 45 CFR ß 1340.14(b).

Most relevant to the instant action is the definition of medical neglect, which includes, but is not limited to, the withholding of medically indicated treatment from a disabled infant with a life-threatening condition. 45 CFR ß 1340.15 (b)(1). Both the federal statute, 42 U.S.C. ß 5106g(6), and the federal regulations, 45 CFR ß 1340.15, mandate compliance with federal minimum standards for withholding of medically indicated treatment. The standards are quite clear: the failure to respond to the infantπs life-threatening conditions by providing treatment (including appropriate nutrition, hydration, and medication) which, in the treating physicianπs (or physiciansπ) reasonable medical judgment, will be most likely to be effective in ameliorating or correcting all such conditions.... 45 CFR ß 1340.15 (b)(2).

The federal statute and federal regulations provide for exceptions to withholding of medically indicated treatment. They are quite explicit and narrow, and they are not disability-based. It is not a failure to provide medically indicated treatment if:

(i) The infant is chronically and irreversibly comatose;

(ii) The provision of such treatment would merely prolong dying, not be effective in ameliorating or correcting all of the infantπs life-threatening conditions, or otherwise be futile in terms of survival of the infant; or

(iii) The provision of such treatment would be virtually futile in terms of the survival of the infant and the treatment itself under such circumstances would be inhumane.

45 CFR ß 1340(b)(2). See 42 U.S.C. ß 5106g(6). If the infant does not meet these standards, a hospital cannot refuse on its own and cannot agree at the request of parents to withhold medically indicated treatment.

It is clear that the basic principle is that all disabled infants with life-threatening conditions must be given medically indicated treatment, defined in terms of action to respond to the infantπs life-threatening conditions by providing treatment.... 45 CFR Part 1340 App. at 355 (emphasis added). Only for those children whose conditions fall in the exceptions, whether or not they are disabled, can medical treatment be withheld.

These exceptions present standards that are not disability based; all children are treated equally.

Sidney Miller did not fall within any of the permitted regulatory exceptions of the Child Abuse Prevention and Treatment Act. [9] She was not chronically or irreversibly comatose, the standard neonatal services and treatments for newborns were not administered merely to prolong dying, nor were they futile in terms of survival. And the treatment was not inhumane. In the instant case, the request not to provide medical treatment to Sidney Miller came immediately before she was born and virtually at the instant when the medical services had to be provided to prevent her death. [10] Had Respondent hospital withheld medical treatment to save her life when the baby did not fall within any of the exceptions and a clear emergency existed, Respondent would have violated the Child Abuse Prevention and Treatment Act. [11] Respondents had to comply with Sidney Millerπs life-threatening situation and not withhold medically indicated treatment.

C. RESPONDENTS WOULD HAVE CONTRAVENED THE AMERICAN MEDICAL ASSOCIATIONπS ETHICAL REQUIREMENTS IF THEY HAD WITHHELD APPROPRIATE MEDICAL TREATMENT

The American Medical Associationπs policy position was written by its Council on Ethical and Judicial Affairs, CEJA Opinion 2.215, and is reported in Treatment Decisions for Seriously Ill Newborns (I-A-92). The AMA points out the ethical factors that should be considered before withholding medical treatment in newborns.

The AMA writes when a patient has never been competent, decisions regarding life-sustaining treatment should be guided by the best interest standard, i.e., what course of action best promotes the patientπs well-being. (Emphasis added). The AMA spells out five criteria.

The best interest standard requires a weighing of the benefits and burdens of treatment options including nontreatment as objectively as possible. Factors ... include: 1) the chance the therapy will succeed, 2) the risks involved with treatment and nontreatment, 3) the degree to which the therapy if successful will extend life, 4) the pain and discomfort associated with the therapy and 5) the anticipated quality of life for the newborn with and without treatment.

Recognizing the controversy that surrounds quality of life considerations in the context of treatment decisions such as with Sidney Miller, the AMA emphasizes that quality of life [considerations] do not include any form of assessment of the patientπs social worth or value to others, such as the infantπs parents. An infantπs quality of life must be evaluated from the infantπs perspective. The AMA asks that [c]ompetent, generally healthy, adults must try to imagine what quality of life would be valuable to a seriously ill newborn. Though difficult, this approach is ethically required. The AMA does not take the position that all life must be preserved. Rather, in a very limited number of situations, for example, a newborn with Tay-Sachs disease and whose life expectancy is only a few years, the balance would tip to nontreatment.

However, the AMA warns that [t]here are often situations when the prognosis of a seriously ill newborn is largely uncertain.... There is frequently no way of knowing whether a particular low birth weight will survive to leave the hospital.... In situations when an infantπs prognosis is largely uncertain, treatment to keep the infant alive should be provided. That was the situation in the present case and is what Respondents did. At birth, Sidney Miller was like other premature babies. There was an emergency situation immediately postpartum that required treatment to keep the child alive. Respondents provided that treatment and now eleven years later Sidney Miller is alive.

In answering the question who should decide, the AMA Council states that there are a number of factors that can impinge upon the ability of parents to make treatment decisions for their seriously ill newborns. Parents may be so emotionally distressed and overwhelmed by the condition of their child that their judgment is clouded.

The New York State Commission on Quality of Care pointed out that the interests of parents might conflict with the best interests of the child.... Often families become unduly frightened about dealing with a handicapping condition because of a lack of knowledge of the condition itself and of the support groups available to help the family. P.F. Stavis, Newborns with Significant Handicaps: What is their right to be medically treated or to have treatment refused? And, who oversees it? COMMISSION ON QUALITY CARE, 43:4 (1990).

In the instant case, the AMAπs ethical considerations overwhelmingly weigh in favor of the Respondents. The hospital acted ethically in resuscitating and keeping Sidney Miller alive.

D. RESPONDENTS WOULD HAVE VIOLATED SECTION 504 OF THE REHABILITATION ACT IF THEY HAD WITHHELD APPROPRIATE MEDICAL TREATMENT

Section 504 of the Rehabilitation Act of 1973 mandates a broad government policy that programs receiving Federal financial assistance shall be operated without discrimination on the basis of handicap. S.Rep.93-1297, 93 Cong. 2. Sess 39 (1974). It was enacted to prevent discrimination against all handicapped individuals under any federally assisted program, specifically including those providing for the delivery of health services (id. at 38). Consistent with this congressional intent, the comprehensive regulations promulgated by the Secretary in 1977 made clear that Section 504 applies to federally assisted health care programs and that it prohibits a provider from refusing to treat a handicapped person solely because of his handicap.

Section 504 provides in relevant part:

No otherwise qualified handicapped individual in the United States ... shall, solely by reason of her or his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance....

A provider who withholds medically beneficial treatment or related assistance from a handicapped infant or subjects an infant to discrimination solely because of her/his handicap falls squarely within the scope of Section 504. This language should be given its plain meaning, consistent with the national commitment to eliminate the åglaring neglectπ of the handicapped (Alexander v. Choate, 105 S. Cr. 712, 717 (1985)(quoting 118 Cong. Rec. 526 (1972)(remarks of Sen. Percy, one of the cosponsors)).

The statute has four elements that apply to the present action.

First, there cannot be a question that Respondents correctly recognized that Sidney Miller was a handicapped individual for purposes of Section 504. The fact that she was a newborn is not relevant; the clear intent of the statute is all-inclusive coverage without regard to an individualπs age. Moreover, the term handicapped individual is defined in broad terms to mean any person who (i) has a physical or mental impairment which substantially limits one or more of such personπs major life activities ... or (iii) is regarded as having such an impairment. 29 U.S.C. ß 706 (7)(B). Certainly, respondent knew that infant Sidney had such substantially limits. It would be inconceivable that respondent had not at the least regarded her as disabled.

When Section 504 was first introduced, Senator Humphrey described the bill broadly. (118 Cong. 525-26 (1972)(emphases added):

I am insisting that the civil rights of 40 million Americans now affirmed and effectively guaranteed by Congress - - our several million disabled war veterans, the 22 million people with a severe physically disabling condition, the one in every 10 Americans who has a mental condition requiring psychiatric treatment, the 6 million persons who are mentally retarded, the hundreds of thousands of crippled by accidents and the destructive forces of poverty, and the 100,000 babies born with defects each year.

These people have the right to live, to work to the best of their ability - - to know the dignity to which every human being is entitled....

Representative Vanik explained the bill in terms that likewise manifest a concern for the treatment of handicapped children.

I am today introducing legislation to provide equal treatment of the handicapped in all programs which receive Federal assistance.... The number of handicapped is growing daily. Every year 100,000 babies are born with defects that will force them to use crutches, braces, or wheelchairs for all of their lives. 11 Cong. Rec. 45972 (1971)

He touched on the underlying and fundamental question that the instant appeal raises when he stated:

In ancient Greece, in the city-state of Sparta, the people would take the handicapped newborn, and leave them to die of exposure on the mountainside. Are we guilty of the same type of gross neglect in this county? 119 Cong. Rec.18137 (1973).

Second, respondent was a program or activity receiving Federal financial assistance. Nothing in the language of Section 504 suggests any exception that would permit discrimination against handicapped persons under those federally assisted programs that furnish medical treatment. At the time Sidney was born, it was irrelevant whether or not she was a beneficiary of a specific program that received federal financial assistance. So long as the hospital received it, then its entire program and activities were covered.

Consistent with Congressπ intent, then HEW published regulations to implement Section 504. See 42 Fed. Reg. 22677 (1977). Those regulations contain a subpart that specifically applies to federally assisted health services programs, along with social services and welfare programs. See 45 CFR Pt 84, Subpt. F.[12] They state, inter alia, that in providing health services or benefits under a program, the recipient may not, solely on the basis of handicap, deny a qualified handicapped person these benefits or services, or afford a qualified handicapped person an opportunity to receive benefits or services that is not equal to that offered nonhandicapped persons. 45 CFR ß 84.52(a)(1)&(2). However, the regulations like Section 504 itself, do not require that the benefits or services afforded handicapped persons produce the identical result or level of achievement as they do for a nonhandicapped person. 45 CFR ß 84.4(b)(2). See Alexander v. Choate , supra at 722 . They require only evenhanded treatment. Ibid.; Southeastern Community College v. Davis, 99 S.Ct. 2361, 2369 (1979).

With regard to medical treatment decisions, an explanatory note states (45 CFR Pt.84, App. A para. 36):

[A] burn treatment center need not provide other types of medical treatment to handicapped persons unless it provides such medical services to nonhandicapped persons. It could not, however, refuse to treat the burns of a deaf person because of his or her deafness.

These provisions of the 1977 regulations, which were in effect when Sidney was born, thus make clear that Section 504 prohibits the denial of medically needed treatment based solely on the individualπs handicap. [13] There is no basis for excluding handicapped infants from their coverage. Respondentπs policy of providing medical treatment for premature babies who weighed 500 grams or more had to be applied evenhanded, regardless of whether the newborn baby was visibly disabled or whether the baby could become disabled or even if it were likely or probable that the newborn would become disabled.

Third, Sidney Miller was an otherwise qualified person. There is no basis for excluding the category of handicapped infants from the coverage of Section 504 on the ground that she was not otherwise qualified to receive the same medically indicated treatment that every other premature baby over 500 grams received. For the hospital to not treat Sidney Miller with the same medical treatment that other premature babies received would be to subject [her] to discrimination solely because she was disabled or because she was regarded as likely to become disabled.

Respondentπs hospital is not a special purpose hospital that did not treat certain categories of patients or types of conditions. Section 504 does not require a provider to treat an infant, simply because she is handicapped, for a condition that the provider otherwise would not treat under a bona fide policy of this kind. But that limited rationale plainly has no application to a hospital or other provider that delivers all babies and treats all newborns.

An additional requirement is that the treatment must be medically indicated in the particular circumstances. A hospital ordinarily does not perform surgery or afford other treatment to any patient, handicapped or not, if the person would not benefit medically from it. Nothing in Section 504 requires a hospital to abandon that neutral principle in the case of handicapped infants. But if the limitations stemming from the infantπs handicapping condition would not prevent her from benefitting from a particular course of treatment (e.g., receiving resuscitation), the infant meets this requirement and must be deemed otherwise qualified.

While, most frequently, the situation arises that it is the hospital that does not want to perform the medical treatment because this child is disabled, the instant case presents the flip side. For the hospital not to have required the emergency operation when it had a written policy to resuscitate newborns weighing more than 500 grams would have subjected it to a potential Section 504 violation and sanctions by HCFA. To have withheld appropriate medical treatment because Sidney was disabled would have been a direct violation of the federal interpretive guidelines for the Section 504 regulation in effect. Specifically, those guidelines state that with respect to programs or activities receiving federal financial assistance, health care providers may not, solely on the basis of present or anticipated physical or mental impairments of an infant, withhold treatment or nourishment from the infant who, in spite of such impairments, will medically benefit from the treatment or nourishment. 45 CFR Pt. 84, App. C. para. (a)(1). A denial of treatment in those circumstances would be based precisely on the existence of the infantπs handicap, standing alone, not on the fact that the handicapping condition results in limitations or has other manifestations which in turn use the individual to fail to meet bona fide qualifications established by respondents.

The mere possession of handicaps ≠ as distinguished from any consequences of the handicapping condition that render medical treatment contraindicated ≠ is not a permissible ground for assuming that an infant is unable to benefit medically from treatment. That rationale would relegitimize the very social neglect of handicapped persons that Congress sought to eliminate through the passage of Section 504. See Alexander v. Choate , supra at 717 (quoting 119 Cong. Rec. 5883 (1973)(remarks of Sen Cranston).

Fourth, defendant hospital could not have denied benefits or subjected to discrimination Sidney Miller on the basis of her handicap. The final element of the prohibition in Section 504, the element of discrimination, requires little discussion. If, in a federally assisted program, a hospital has refused to furnish an infant who has handicap with treatment that would be medically beneficial (e.g., the resuscitation) and that would be performed for a child who is not handicapped or who did not have the same handicaps as Sidney Miller, the hospital would have solely by reason of [her] handicap been den[ying] the benefits of and been subject[ing] to discrimination under the federally assisted program.

Where an emergency situation exists, as occurred during the infamous eleven hours before Sidney was born, and the hospital had to commence the resuscitation immediately after birth to keep the child alive, the medical treatment furnished Sidney Miller must be viewed the same whether or not she was disabled. That is, if the hospital would have acted the same way vis-a-vis the Petitioners in the present action if their child was not disabled (but premature and weighing above 500 grams), then to not treat Sidney as they did would have been a violation of Section 504.

A hospital is required to take actions to override a parental withholding of consent to life-saving treatment for a handicapped child if the hospital would do so for a nonhandicapped child. Thus, Section 504, as applied to handicapped infants in this context, requires a hospital to follow, not to modify, its existing policies. To treat handicapped and nonhandicapped infants the same imposes no new affirmative action obligation on a hospital within the meaning of Davis, supra at 2369.

Hospitals commonly take steps to assure treatment when, for example, religious convictions prohibit the parents from consenting to medical treatment or a necessary blood transfusion. See, e.g., Jehovahπs Witnesses in the State of Washington v. King County Hospital, 278 F. Supp. 488 (W.D. Wash. 1967), affπd, 390 U.S. 598 (1968); Raleigh Fitkin-Paul Morgan Memorial Hospital v. Anderson, 42 N.J. 421. 201 A.2d 537, cert. denied, 377 U.S. 985 (1964). Section 504 requires nothing less for newborns who are disabled or are perceived to become disabled.

III. CONCLUSION

Your amici strongly urge this Court affirm the appellate court decision and signal, as forcefully and clearly as possible, that disabled children's lives are as valuable as nondisabled children's lives. This Court must hold that all appropriate and necessary medical treatment available to nondisabled children must also be provided on an equal basis to children born with potential or actual disabilities.

For children without disabilities, the rights of parental consent are not absolute. Your amici ask for equal protection of newborns and infants with disabilities under the Child Abuse Prevention Act and Section 504 of the Rehabilitation Act of 1973.

Your amici represent hundreds of thousands of individuals with disabilities and parents of children with disabilities who have direct personal experience with the complex relationship and tensions that exist between physicians and parents when newborns have or may have a disability. Societyπs stigma of persons with disabilities frequently results in physicians making low quality-of-life predictions that are erroneous and assessments that often result in decisions to withhold medically indicated and appropriate treatment.

Most adults with disabilities, including those who have had a disability since birth, choose life and have quality in their lives. Most parents of children with disabilities value and believe their childrenπs lives have quality.

Your amici want this Court to hear from children and adults with disabilities who received the medical treatment they needed to survive. In fact, it should be obvious that a more authoritative source could not be found. We offer our perspective as people with disabilities and family members to this Honorable Court.

Your amici are living evidence that disability has value in our society. We wish to assert in the strongest possible terms our disagreement with a wrongful life rule of law and our rejection of society's prevalent judgment of our lives, "better dead than disabled."

We represent people with disabilities of all ages and families of children with disabilities, throughout Texas and across the nation, and we call upon this Court to unequivocally affirm the equal value of our lives under the law.

Respectively submitted,

COUNSEL FOR AMICI CURIAE

_______________________________

STEPHEN F. GOLD

125 S. 9^th Street

Suite 700

Philadelphia, Pa. 19107

215-627-7100

215-627-3183 (Telecopier)

Of Counsel

Diane Coleman

Robert J. Provan

State Bar No. 16355500

Provan & Associates, P.C.

401 West 15th Street, Suite 850

Austin, Texas 78701

512- 469‑9383

Date: March 21, 2002

ATTACHMENT A: INTERESTS OF AMICI CURIAE

A. NOT DEAD YET

Not Dead Yet is a national grassroots organization of people with disabilities formed in response to the increasing popularity of, and laws permitting, physician assisted suicide and euthanasia in the United States and around the world. Not Dead Yetπs mission is to protect the civil rights of people with disabilities by advocating against discriminatory legalization of physician assisted suicide and euthanasia, and to bring a disability-rights perspective and awareness of the effects of discrimination to the legal and sociological debate around euthanasia and physician assisted suicide. Formed in 1996, Not Dead Yet has worked to educate, support, coordinate and lead the disability community's effort to stop the "right to die" from becoming a duty to die or a right to kill. Not Dead Yet members have undertaken specific activities in the name of the organization and in support of its mission in at least 30 states. Not Dead Yet's amicus brief, with co-amici ADAPT, filed in the U.S. Supreme Court in the case of Vacco v. Quill, 117 S.Ct. 2293 (1997), was among a handful, out of over 60 such briefs, cited by the high Court in its final opinion. Not Dead Yet has given invited testimony before the U.S. Congress three times, once before the U.S. Senate Judiciary Committee and twice before the Constitution Subcommittee of the U.S. House of Representatives. B. ADAPT

ADAPT is a national organization with a large and active Texas chapter, most of whose members have severe disabilities and many of whom have been institutionalized in nursing facilities and other public institutions solely because they have disabilities. ADAPT members include persons with spina bifida, cerebral palsy, muscular dystrophy, spinal cord injuries, multiple sclerosis, quadriplegia, paraplegia, head and brain injuries, polio, amyotrophic lateral sclerosis, as well as many other disabilities. Most of these persons use assistive devices, including motorized and manual wheelchairs, ventilators, and personal assistance services for meeting their personal needs.

Many of ADAPTπs members cannot sit up on their own but require assistance. Many cannot walk or feed themselves. Some use communication devices to talk. Some are incontinent and legally blind. Some have severe cognitive disabilities and other developmental disabilities. Many have seizures and spastic quadri paresis in their limbs. Many use personal assistance services. Thus, they share many of the disabilities that Sidney Miller has.

ADAPT's national mission is to establish the civil rights of all individuals to choose to live in their homes and communities, rather than be forced into nursing homes and other institutional settings. ADAPT has a long history and record of enforcing the civil rights of people with disabilities and was one of the key organizations that participated in the political and legislative process that resulted in the passage in 1990 of the Americans with Disabilities Act, 42 U.S.C. ß 12101 et seq. ("ADA"). See ADAPT v. Skinner, U.S. Dep't of Transp., 867 F.2d 1471, 881 F.2d 1184 (3d Cir. 1989).

C. THE ARC OF THE UNITED STATES

The Arc of the United States (The Arc), through its nearly 1,000 state and local chapters, is the largest national voluntary organization in the United States devoted solely to the welfare of the more than seven million children and adults with mental retardation and their families. Since its inception, The Arc has vigorously challenged attitudes and public policy, based on false stereotypes, which have authorized or encouraged discrimination against people with mental retardation in virtually all areas of life. The Arc was instrumental in development of the so-called Baby Doe amendments to the Child Abuse Amendments of 1984, which protect newborns with disabilities from discrimination. In addition, in 1983, in collaboration with other national organizations, The Arc developed the Principles of Treatment of Disabled Infants. The Arc was one of the leaders in framing and supporting passage of the Americans with Disabilities Act (ADA).

The Arc has extensive experience in addressing issues regarding withholding of medical treatment and has found that people with mental retardation sometimes die because doctors, parents and other decision-makers impose do-not-resuscitate orders or refuse to authorize medical treatment or provide food and/or water. These decisions are often based on the disability itself, on the perceived "poor quality of life" of the individual, or for economic reasons, rather than on the individual's medical condition. The Arcπs position statement on medical and dental treatment states, in part, that a person's mental retardation or degree of disability must not be a factor in the decision to provide or withhold medical or dental treatment. Withholding or withdrawing treatment based on disability alone is illegal and can never be condoned. The individual's medical condition and welfare must be the basis of the decision.

H. WORLD INSTITUTE ON DISABILITY

The World Institute on Disability (WID) is a center for the study of public policy and independent living. It was founded in 1983 by internally recognized leaders of the disability rights movement to support full inclusion and participation in society of persons with disabilities, as opposed to the isolation and shelter provided by traditional disability services. WID's work addresses the vast range of issues that shape the lives of people with disabilities, from in‑home support services to access to information technology and many other subjects. WID engages in research, policy analysis, model‑program development, technical assistance and public education to supply a broad foundation for the enterprise of gaining social inclusion for people with disabilities.

I. UNITED CEREBRAL PALSY ASSOCIATION OF TEXAS

United Cerebral Palsy Association of Texas, Inc. was started 1954. UCP Texas was founded by parents of children with disabilities who sought to develop and provide disability services and is a part of a national network of over 120 affiliates. The UCP Texas board of Directors is comprised of a majority of individuals with disabilities and parents or other family members of a child with a disability. Its mission is to positively impact the lives of people of with cerebral palsy and other similar disabilities, and their families.

UCP Texas provides services and advocacy on behalf of individuals with disabilities throughout the state of Texas. UCP Texas promotes and provides services, advocacy and other supports that enable the full inclusion of people with disabilities in all life areas: work, play, recreation, housing, learning, worship, and meaningful relationships.

UCP Texas works to ensure positive futures for children with disabilities through legislative and systemic advocacy, provision of an inclusive camp for children with and without disabilities, and school‑based enrichment programs and summer internships for teens transitioning to adulthood.

J. COALITION OF TEXANS WITH DISABILITIES

Founded in 1978, the Coalition of Texans with Disabilities is a statewide coalition of individuals and organizations working together to eliminate barriers to equal and full participation in life. Its mission is to ensure that people with disabilities may live, work, learn, play and participate fully in the community of their choice.

K. TEXAS ADVOCATES SUPPORTING KIDS WITH DISABILITIES

TASK is a statewide, non‑profit organization of parents and families caring for children with disabilities. Its goals are to empower families by providing current information on issues affecting children with disabilities; enable families through advocacy training to effectively use this information to promote positive public policy for children with disabilities; educate policymakers on the support needs of children with disabilities and their families; and promoting culturally diverse and inclusive communities for all children with disabilities.

L. AUSTIN RESOURCE CENTER FOR INDPENDENT LIVING

The Austin Resource Center for Independent Living (ARCIL) is a consumer‑driven, community‑based not‑for profit corporation dedicated to the empowerment of persons with disabilities to achieve maximum independence and equal community access. Services are developed, directed and delivered primarily by persons with disabilities. In addition to providing these core services, ARCIL actively engages in system‑wide efforts to reduce the physical and attitudinal barriers that prevent individuals with disabilities from participating in all aspects of everyday life.

M. TEXAS ASSOCIATION OF CENTERS FOR INDEPENDENT LIVING

The Texas Association of Centers for Independent Living (TACIL) represents twelve Centers for Independent Living operating in eighteen locations across the state. Each Center is a private, nonprofit, consumer‑directed, cross‑disability, non‑residential, community‑based corporation that is operated by and for people with disabilities. Centers for Independent Living in Texas provide direct services that promote independence and community integration of people with all types of disabilities. The Centers, consumers, and their families engage in local, state, and national advocacy efforts on independent living issues. TACIL represents a coordinated effort to implement systems change on issues that impact the lives of Texans with disabilities.

N. THE TEXAS CIVIL RIGHTS PROJECT

The Texas Civil Rights Project ("TCRP") is a non‑profit public interest law organization that promotes racial, economic, and social justice, as well as civil liberty under the Bill of Rights of the Texas and United States Constitutions. TCRP, with membership base of approximately 800 Texans, works toward these goals primarily through education and litigation involving civil rights violations. TCRP maintains a vigorous litigation and education campaign on behalf of members of the State's disability community and disability rights organizations, utilizing the Americans with Disabilities Act and Section 504 (Rehabilitation Act of 1973), as well as comparable Texas laws. Commendations on this important task.

O. THE CENTER FOR HOUSING AND NEW COMMUNITYECONOMICS The Center works to develop integrated housing opportunities for people with disabilities, including children, young adults and older people with disabilities. The Center provides technical assistance to families with children with disabilities and families with disabilities on options to live, work, play and recreate integrated in the community.

R. VOLAR

VOLAR is a community-based organization that promotes the independence of children and adults in the El Paso area. VOLAR works to assure that people with disabilities have the rights and support services to live, work and play in the community.

S. THE CENTER FOR SELF-DETERMINATION

The Center for Self‑Determination is a national organization comprised of individuals with disabilities, family members and professionals committed to the principles of self‑determination: freedom to choose where one wants to live and with whom, as well as what important things one will do with one's life; authority and control over the dollars necessary for long term supports; support to craft the supports needed in ways that are unique to the individual with a disability; and responsibility for both the wise use of public dollars and for contributing to one's community.

T. ADVANCING INDEPENDENCE: MODERNIZING MEDICARE AND MEDICAID

Advancing Independence: Modernizing Medicare and Medicaid (AIMMM), a program of HalfthePlanet Foundation, is a policy forum that seeks, identifies and advances responsible reforms in Medicare and Medicaid needed to increase the health, independence, and self-sufficiency of persons with disabilities. It brings people with disabilities, families, Federal and State officials, the media and others around a common table to identify effective ways to advance needed change in policy and real people's lives. In doing this, it seeks to forge greater clarity among all interests on what types of changes are necessary, viable and mutually agreeable to pursue. Toward this end, AIMMM is committed to working to identify, better understand and highlight effective reforms and best practices.

CERTIFICATE OF SERVICE

I, Stephen F. Gold, hereby certify that this 21^st day of March, 2002 I caused a true and correct copy of the foregoing brief to be served by prepaid, first-class mail upon the following persons:

VIA FIRST CLASS MAIL

David E. Keltner Michael D. Sydow

Jose, Henry, Brantley & Keltner, L.L.P. Verner, Liipfert, Bernhard,

675 N. Henderson McPherson & Hand

Fort Worth, Texas 76107 1111 Bagby, Suite 4700

Houston, Texas 77002

Murray Fogler Shannon H. Ratliff

McDade, Fogler, Maines L.L.P. Akin, Gump, Strauss, Hauer

Two Houston Center & Field, L.L.P.

909 Fannin, Suite 1200 Suite 1900

Houston, Texas 77010 816 Congress Avenue

Austin, Texas 78701

Marc O. Knisely Michael A Hatchell

McGinnis, Lochridge & Molly H. Hatchell

Kilgore, L.L.P. Hatchell PC

1300 Capitol Center PO Box 2006

919 Congress Avenue Tyler, Texas 75710

Austin, Texas 78701

Richard L. Rothfelder Mr. Richard Bianchi

Rothfelder & Falick, L.L.P. Bianchi & Lagarde, P.C.

1201 Louisiana, Suite 550 440 Louisiana, Suite 1200

Houston, Texas 77002 Houston, Texas 77002

Richard A. Sheehy

Sheehy, Serpe & Ware, P.C.

2500 Two Houston Center

909 Fannin Street

Houston, Texas 77010-1003

________________________

Stephen F. Gold, Esquire

125 S. 9^th Street, Suite 700

Philadelphia, PA 19107

215-627-7100

Dated: March 21, 2002

[1] Pursuant to Rule11 (c), Texas Rules of Appellate Procedure, amici and their counsel have not been paid and will not be paid for preparing the brief or for appearing in this action.

[2] The description and interests of each amici are at Attachment A.

[3] Resuscitation is a medical term of art that includes, if necessary and appropriate, medication, cardiac care, oxygen, and assistive breathing devices. It is frequently provided to premature babies and is not what the general public might consider heroic measures. No heroic measures were done in the instant case.

[4] Normal fetal weight for a comparable premature baby was 563 grams. Sidney Millerπs estimated weight put her in the 56^th percentile, meaning the baby was a little bigger than average size for a baby as that stage.

[5] At birth, the attending neonatologist noted that Sidney gasped for air, cried spontaneously, had acceptable color, weight and heart beat. She was a viable baby. Her Apgar scores were 3 at one minute and 6 at five minutes, demonstrating that Sidney responded well to the treatment. While most premature babies have lower Apgar scores than term babies, Sidneyπs Apgar scores were good for a baby of her birth size. Three hours after birth the records stated that Sidney was pink, active premature female infant with no dysmorphic features, i.e., she appeared like other premature infants.

[6] Your amici wish this Court to know that the Petitioners are the exception to the rule. Most parents of children with severe disabilities recognize the value, joy, and importance their children have and give. These parents, many of whom are members of the amici organizations, struggle daily with the societal discrimination that devalues their children and denies them their equal rights of citizenship. These parents are raising children to become adults with disabilities who will be alive to achieve these rights.

[7] Hospital Progress Notes refers to babyπs poor prognosis because of biologic immaturity. There are other references to prognosis ... horrible.

[8] Texas receives federal financial assistance from this program. It has been reported that virtually every state has enacted rules to comply. S.A. Newman, Baby Doe, AM. J. LAW& MED. 1989;15:1-60.

[9] These regulations were effective October 9, 1985. Each health care facility must have a person who coordinates these child protective services. 45 CFR ß 1340.15(c)(3).

[10] They occurred several weeks before she had a brain hemorrhage, at a time when only the fears of disability were present.

[11] Emergency services are authorized under the regulations. 45 CFR ß 1340.14(f).

[12] The Section 504 regulations cited herein were promulgated in 1977, were in effect when Sidney Miller was born and remain fully in effect today.

[13] The 1984 Baby Jane Doe amendments that the Supreme Court invalidated in Bowen v. American Hospital Assn, 106 S.Ct 2101 (1986) are not relevant in the instant case.