On-line version ISSN 1466-3597
De Jure (Pretoria) vol.45 n.1 Pretoria 2012
Regsvraagstukke verbonde aan geenbybringopdragte in VSA skole
Ralph D Mawdsley
JD PhD Professor of Law, Cleveland-Marshall College of Law and Roslyn Z Wolf Professor of Education, Cleveland State University College of Education and Human Services
Geenbybringopdragte (GBO) in die Verenigde State is in die algemeen aanwysings wat voorberei word deur geneeshere op versoek van ouers om lewensondersteuningsdienste te beëindig of af te skaal op grond van 'n mediese diagnose dat 'n kind 'n terminale toestand bereik het waar hy of sy nie meer self besluite kan neem nie en geen mediese vooruitsig op herstel van 'n komateuse of vegetatiewe toestand het nie. Sulke GBOs bring egter belangrike vraagstukke na vore aangaande die gesag van ouers en mediese praktisyns om besluite namens kinders te neem wat dikwels nie in 'n geestes- of liggaamstoestand is om die aard van 'n GBO te verstaan nie, die reg op lewe van 'n kind ten spyte van sy of haar aftakelende of terminale toestand en die verantwoordelikhede van skoolpersoneel om 'n GBO uit te voer wat tot groter gestremdheid of die dood van 'n leerling kan lei. Regsgedinge rakende GBOs het hoofsaaklik gefokus op minderjarige kinders binne hospitaalverband, hoewel mediese en verpleegkundige publikasies heelwat advies aangaande noodhulp by skole bevat. Meeste van hierdie publikasies spreek egter lewensgevaarlike noodgevalle vir leerlinge in die algemene milieu van beperking van aanspreeklikheid aan, met beperkte klem op die voortdurende en deurlopende behoeftes van gestremde leerlinge. Regsgedinge rakende GBOs en minderjaringes het nie vraagstukke rondom leerlinge met afsonderlike onderrigplanne ingevolge die
INDIVIDUALS WITH DISABILITIES EDUCATION ACT(IDEA): aangespreek nie. Die gesag van ouers om besluite aangaande GBOs in hospitale te neem word afgestomp en ontlont in die skoolomgewing waar ouers met gestremde kinders slegs een deel van die besluitnemingsproses rakende hulle kinders is. Die belangrike onderskeid is die mate waartoe 'n versoek vir nuwe verwante dienste of plasings ingevolge
IDEA: om 'n kind se onderrig te verbeter, gelykstel kan word met 'n GBO wat in wese kan neerkom op 'n versoek om 'n kind te laat sterf. Kan 'n GBO vir 'n leerling wat gestrem is geregverdig word wanneer die doel van
IDEA: en die afsonderlike onderrigplanne daarop gerig is om toe te sien dat gestremde leerlinge doelwitte en mikpunte ingevolge
IDEA: het wat sinvolle prestasievergelyking met leerlinge sonder gestremdhede moontlik maak, maar steeds die aard van hulle gestremdhede in aanmerking neem? Die doel van hierdie artikel is om sommige beleidsoorwegings rakende die gepastheid van GBOs in skoolverband te ondersoek, veral in soverre dit gestremde kinders raak.
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1 DNR "is the usual acronym for a physician's directive that cardiopulmonary resuscitation not be used in the event of a cardiac or respiratory event." Constante "DNR in the School Setting: Determining Policy and Procedures" in Legal Issues in School Health Services (eds Schwab & Gelfman) (2001) 417. DNR orders are sometimes, perhaps more accurately, referred to as Do Not Attempt Resuscitation (DNAR) orders, but DNR will be used in this paper since it is more widely recognised. See Hazinski et al "AHA Scientific Statement, Response to Cardiac Arrest and Selected Life-Threatening Medical Emergencies" 2004 Circulation 278 280.
2 See DK v Cabinet for Health and Family Services 221 SW 3d 382 (holding that, while the Cabinet was authorised to act as a child's health decision maker where temporary custody had been granted to social services for the neglected and abused child, a DNR Order was not appropriate where the parents' rights had not been terminated).
3 See Belcher v Charleston Area Medical Center 422 SE 2d 827 (holding that 17-year-old with muscular dystrophy who suffered breathing failure and for whom a physician had issued a DNR Order, at direction of his parents, to not reintubate or resuscitate their son and who died following a cardiac failure where no resuscitation or intubation occurred, the parents were entitled to go to trial on wrongful death and medical malpractice claims as to whether their son was a "mature minor" whose opinion should have been sought prior to issuance of the DNR Order).
4 See Pohlman & Schwab "Managing Risks in Professional and Clinical Performance Dilemmas: Part I" 2000 J of School Nursing46 (commenting that a school district policy may "dictate a nursing action (or omission of an action) that appears to conflict with legal or ethical standards of practice or, [ Links ] more specifically, may bring harm to a student.").
5 See JN v Superior Ct67 Cal Rptr 3d 384 (court refused to issue a DNR order for 11-month-old child with severe head trauma even though supported by child's attorney and hospital bioethics consultation team where child had not been adjudged dependent; however, the court held that hospital doctors could remove intubation tube for breathing where a petition for dependency had been filed and the court in approving the order to remove the tube had balanced the interests of the child with those of the parents who opposed both removal of the intubation tube and the issuance of a DNR order ).
6 See eg AHA Scientific Statement 284 where the recommendations for risk reduction focus on safe equipment, instruction, and supervision, factors that are important in assessing tort liability for students in general, with limited attention to the role of parent input as to the disabling conditions of students with allergies or asthma that qualify them as students with disabilities.
7 See Hammond v Board of Education of Carroll County 639 A 2d 223 (finding no negligence liability as a result of internal injuries to female student who had sued successfully to participate on football team where the combination of her knowledge of the sport and the safety instructions of the coach were sufficient to amount to assumption of risk).
8 The risk of certain kinds of injuries, such as concussion, has resulted in state statutes specifying the terms under which students suspected of having a concussion can continue to participate. See Revised Code of Washington §28A.600.485 (3) & (4) where a student "suspected of sustaining a concussion or head injury in a practice or game shall be removed from competition at that time" and cannot return until after having been "evaluated by a licensed health care provider trained in the evaluation and management of concussion and receives written clearance to return to play from that health care provider".
9 See Bellinger v Ballston Spa Central School District 871 NYS 2d 432 (where plaintiff's daughter, a fifth grader at Wood Road Intermediate School in the Village of Ballston Spa, Saratoga County, was playing one-hand touch football at recess when she and a fellow teammate, both running toward the same opponent, collided on the field, resulting in the teammate's head hitting plaintiff's daughter in the mouth, knocking out three of her teeth and fracturing a fourth, the school had no liability for negligence where, even if playground supervision was inadequate at the time a fifth grade, female student was injured while playing one-hand touch football at recess, such negligent supervision was not a proximate cause of the student's injuries, there was no history of disciplinary problems or rough play among any of the children involved, and the collision at issue was spontaneous and accidental.
10 See Hilts v Board of Education of Gloversville Enlarged School District 857 NYS 2d 292 (triable issue existed as to whether school nurse, who had helped student injured on playground from nurse's office to school door, had released her hold on the girl too soon so she could walk from the school door to her mother's car, resulting in the girl falling and injuring her ankle; the issue for the court was properly phrased as whether the nurse had assumed a duty to hold on to the girl until in the car).
11 National Association of School Nurses (NASN) School Nursing Services Role in Health Care (2009) 1.
12 NASN School Nursing Management of Students with Chronic Health Conditions (2006) 1, quoting from Newacheck et al An Epidemiological Profile of Children with Special Health Care Needs," 1998 Pediatrics 117 11 7.
13 See Ohio Revised Code §4723.01 (defining the "practice of nursing as a registered nurse and the nursing regimen").
14 See Ohio Revised Code §4723.151 (practices prohibited for licensed nurses), §4723.17 (permitted practices and prohibitions for licensed practical nurses).
15 See Ohio Administrative Code §§4723-13-02 & 4723-13-039 (setting limits on delegation of nursing functions). See also Moye v SpecialSch Dist No 6 South St Paul23 IDELE 229 (where parents did not want their child removed from the classroom so the school nurse could suction their child's tracheotomy tube and wanted a UAP to perform the function in the classroom so their child would not miss the class, a federal district court held that under the state's nurse practice act the nurse delegate [UAP] could not be required to perform the function).
16 Schwab & Gelfman (eds) Legal Issues in School Health Services: A Resource for School Administrators, School Attorneys, School Nurses (2001) 55-79.
17 NASN Position Statement: Individualised Healthcare Plans (IHP (2008) "The IHP is a written document that outlines the provision of student healthcare services intended to achieve specific student outcomes. ... The need for an IHP is based on required nursing care, not educational entitlement such as special education or Section 504 of the Rehabilitation Act of 1973."
18 NASN (2006) 3. The ECP is the outcome of the IHP and is a step-by-step set or procedures directed to non-nursing personnel who may have to respond to emergency situations in schools or at school activities.
19 IEPs are discussed later in this article but, basically they are "a written statement for each child with a disability that is developed, reviewed, and revised in accordance with section 1414(d) of [IDEA]." 20 USC §1401(a)(14).
20 IDEA is the federal statute, first enacted in 1975 as the Education for All Children Handicapped Act (EHA) and identifying the public school district's responsibilities to find, evaluate, and provide appropriate services and placements for children with disabilities. See 20 USC §1400 et seq.
21 A nondiscrimination act, section 504 requires accommodations for students who are prevented from achieving a major life activity because of their disability, even if the child does not qualify for special education under the IDEA. See 29 USC §794.
22 NASN Issue Brief: School Health Services Role in Health Care-Section 504 of the Rehabilitation Act of 1973 (2005).
23 NASN Do Not Resuscitate (2004).
24 American Academy of Pediatrics Committee on School Health and Committee on Bioethics Do Not Resuscitate Orders2000 Pediatrics878-879 (hereinafter referred to as AAP.
25 Idem 878.
27 Idem see Mitchell v Special Joint Agreement School District No 208 897 NE 2d 352 (finding no liability as to a mentally impaired special education student who, even though the classroom teacher and classroom aide knew that the student had, in the past, stuffed food into his mouth and swallowed it without chewing, grabbed a nearby cupcake, while the aide was watching him and backing up to a nearby sink and choked on it suffering serious brain damage; despite the history of past occurrences, the court found in this case that "school staff [had] maintained close supervision over [the student], evincing concern for his safety").
28 Ibid 879
29 Ibid NASN (2008).
30 See Parham v JR 442 US 584 (in a challenge by children sent to mental health facilities with parent permission, the Supreme Court observed that "parents retain a substantial, if not the dominant, role in the decision ... [t]he traditional assumption that parents act in the best interest of their children should apply"). For a broad based, international discussion of the best interests of children and their parents, see Mawdsley & Visser "The Best Interest of the Child and the Right of Parents to Make Decisions for Their Children: Comparing the United States and South Africa" 2007 Int J of Ed Reform 344; Cumming, Mawdsley & De Waal "The 'Best Interests of the Child, Parents' Rights and Educational Decision-making for Children: A Comparative Analysis of Interpretation in the United States of America, South Africa and Australia" 2006 Australia and New Zealand J of Law and Ed 43.
31 In re Fiori 673 A 2d 905 913 (upholding removing life support treatment for an adult patient in a vegetative state).
32 1997 WL 34594167.
33 Idem *1.
34 Idem *3.
36 Idem *2.
37 This is the title of the highest court in the State of Massachusetts, usually referred to as a Supreme Court in other states.
38 497 NE 2d 626 (holding that court could not compel physicians to act contrary to their ethical views and remove or clamp the G-tube of a patient in a vegetative state, but the patient's wife could remove the patient to another hospital where the physicians were willing to perform that function).
39 Idem 639 (emphasis in original).
40 ABC School 1997 WL 34594167 *3.
41 Mass Gen Laws Annot §55A. This statute grants exemption from civil liability for school personnel's contact with "sick, injured or incapacitated pupils" in areas of "emergency first aid or transportation" as long as the personnel have acted in "good faith".
42 ABC School 1997 WL 34594167 *3.
43 See Mitchell 897 NE 2d 354-55 (while failure of school to have a behavioral intervention plan [BIP] constituted a violation of the IDEA by not providing FAPE, it did not constitute negligence where the school personnel's monitoring the student satisfied the tort liability standard for supervision).
44 An IEP "means a written statement for each child with a disability that is developed, reviewed, and revised in accordance with section 1414(d) of [IDEA]." 20 USC §1401(a)(14). An IEP is a comprehensive document prepared by specified school personnel plus a parent or guardian that contains the following: "a statement of the child's present levels of academic achievement and functional performance;" "a statement of measurable annual goals, including academic and functional goals"; "a description of how the child's progress toward meeting the annual goals ... will be measured and when periodic reports on the progress the child is making toward meeting the annual goals (such as through the use of quarterly or other periodic reports, concurrent with the issuance of report cards) will be provided;" "a statement of the special education and related services and supplementary aids and services, based on peer-reviewed research to the extent practicable, to be provided to the child, or on behalf of the child, and a statement of the program modifications or supports for school personnel that will be provided;" "an explanation of the extent, if any, to which the child will not participate with nondisabled children in the regular class and in [described] activities;" "a statement of any individual appropriate accommodations that are necessary to measure the academic achievement and functional performance of the child on State and districtwide assessments;" and, "beginning not later than the first IEP to be in effect when the child is 16, and updated annually thereafter, . appropriate measurable postsecondary goals [and] . transition services (including courses of study) needed to assist the child in reaching those goals". 20 USC §§1414(d)(1)(A)(i)(I),(II),(III),(IV),(V),(VI),(VII),VIII).
45 The IDEA is a comprehensive federal statute identifying the rights and remedies for students determined to be in need of special education. 20 USC §1400 et seq.
46 29 USC §794.
47 Board of Educ v Rowley 458 US 1 76 200 (sets floor for compliance with the IDEA that a child is to receive "some educational benefit"). See Timothy W Rochester Sch Dist N 5 875 F 2d 954 (holding that a severely disabled child did not have to demonstrate that he could benefit educationally from special education in order to be eligible for that education).
48 NASN (2004).
49 468 US 883 (holding that requiring school to provide eight-year-old child born with spina bifida with clean intermittent catheterisation [CIC] so that she could attend special education classes did not violate the state's Nurse Practices Act since the CIC could be done by a trained lay person).
50 526 US 66 (holding that school providing one-on-one nursing services for severely disabled student constituted related services and did not fall within IDEA's medical exemption).
51 The IDEA exempts from the definition of "related services" those "medical services" that are other than for "diagnostic and evaluation purposes" and "a medical device that is surgically implanted, or the replacement of such device." 20 USC §1401(26) (A), (B).
52 20 USC 1401(26)(A).
53 Garrett F526 US 68 n 2.
54 Idemn 3.
54 been alleviated by catheterisation. He [had] not ever experienced autonomic hyperreflexia at school. Garret is capable of communicating his needs orally or in another fashion so long as he has not been rendered unable to do so by an extended lack of oxygen.
55 See Tex Atty Gen Opinion H-1295 (1978-12-19) ("Professional nurses may also administer medications and treatments on a physician's prescription ... without any statutory requirement of direct supervision by the physician.")
56 Tatro v State of Tex 516 F Supp 968 976 (observing that "with only minimal additional training a professional nurse should be more than capable of performing CIC").
57 Garrett FUnited States Supreme Court Petitioner's Brief. Appellate Brief *7.
58 In Garrett Fthe school district had been expending 00 of its own funds annually to pay for an educational assistant to aid the student with his computer and academic courses, but the hiring of a nurse to address the medical needs would require an additional expenditure of ,000 to ,000 per year.
59 See Garrett F526 US 71 (while not addressing the issue of cost on its merits, the Supreme Court, nonetheless, appeared to cite with approval the Administrative Law Judge's (ALJ) determination on the merits that "[he had]found no legal authority for establishing a cost-based test for determining what related services are required by the statute").
60 US Const art VI Cl 2 ("This Constitution, and the Laws of the United States which shall be made in Pursuance thereof; and all Treaties made, or which shall be made, under the Authority of the United States, shall be the supreme Law of the Land; and the Judges in every State shall be bound thereby, any Thing in the Constitution or Laws of any State to the Contrary notwithstanding").
61 The Supremacy Clause has been interpreted as declaring that "[a] state statute is void to the extent that it actually conflicts with a valid federal statute". Edgar v Mite Corporation 457 US 624 631. In effect, this means that a state law will be found to violate the supremacy clause when either of two conditions exists: (1) Compliance with both federal and state law is impossible, or ( 2) "... state law stands as an obstacle to the accomplishment and execution of the full purposes and objectives of Congress ..." Dow Chemical Co v Exxon Corp 139 F 3d 1470 1473.
62 See Shaw v Leatherberry 706 NW 2d 299. For a discussion of the Supremacy Clause as it applies to education see Fung "Pushing the Envelope on Higher Education: How States Have Coped with Federal Legislation Limiting Postsecondary Education Benefits to Undocumented Students" 2007 Whiter J of Child & Family Advocacy 415 (lamenting that while states are required under the Equal Protection Clause to provide elementary and secondary education to most illegal aliens, post-secondary institutions are preempted under the Supremacy Clause from providing such education because of federal prohibitions); Nappen "The Privacy Advantages of Homeschooling" 2005 Chapman LR73 (discussing how the US Patriot Act [Pub L No 107-56, 115 Stat 272 (2001)] preempts library privacy by allowing government access to library circulation records listing books checked out by patrons, or records of internet use and prohibits the library from disclosing the existence of a warrant or the fact that records were produced, not even to the patron).
63 Lewiston (Me) Public Schools 21 IDELR 83.
64 355 A 2d 647, cert denied; Garger v NJ429 US 922 (finding that the right to refuse medical treatment is a constitutional right based on a person's right to privacy and a person who is incompetent does not lose this right to privacy, and, moreover "the individual's right to privacy grows as the degree of bodily invasion increases and the prognosis dims").
65 The US Constitution contains no express right to privacy, but exists "in the penumbra of specific guarantees of the Bill of Rights 'formed by emanations from those guarantees that help give them life and substance'" Griswold v Conn 381 US 479 484. However, state constitutions frequently have provisions that are broad enough to include privacy. See eg NJ Const Art I par 1("All persons are by nature free and independent, and have certain natural and unalienable rights, among which are those of enjoying and defending life and liberty, of acquiring, possessing, and protecting property, and of pursuing and obtaining safety and happiness").
66 321 SE 2d 716.
67 418 SE 2d 3.
68 Idem 5.
69 Idem 6.
71 Idem 6-7.
72 903 A 2d 333.
74 Ibidciting Troxel v Granville 530 US 57 66 (where the US Supreme Court invalidated a state statute granting visitation rights to grandchildren even where the visitation occurred over the objections of parents who had lawful custody, reasoning that "the Due Process Clause of the Fourteenth Amendment protects the fundamental right of parents to make decisions concerning the care, custody, and control of their children." The US Supreme Court has had a long tradition of protecting, under the liberty clause of the Fourteenth Amendment, the right of parents to make decisions for their children). See Meyer v Nebraska 262 US 390 399 (invalidating criminal conviction of religious school teacher instructing in other than the English language, finding that the state statute requiring instruction only in English violated "the right of parents to 'establish a home and bring up children' and 'to control the education of their own'"); Pierce v Society of Sisters268 US 510 534-535 (invalidating state statute requiring all children to be taught in public schools, holding that the "liberty of parents and guardians" includes the right "to direct the upbringing and education of children under their control"); Wisconsin v Yoder 406 US 205 232 (in reversing truancy convictions of two Amish parents for refusing to send their children to school until age 16, the Supreme Court observed that "[t]he history and culture of Western civilisation reflect a strong tradition of parental concern for the nurture and upbringing of their children [and] [t]his primary role of the parents in the upbringing of their children is now established beyond debate as an enduring American tradition").
75 In re Matthew 903 A 2d 337.
76 See Ohio Rev Code §§2133.02-2135.12.
77 Ohio Rev Code §2133.01 (defining "hydration", "incompetent", "life-sustaining treatment", "permanently unconscious state" and "terminal condition").
78 Ohio Rev Code § 2133.03.
79 Ohio Rev Code §§2133.21 (DNR identification, DNR order, DNR protocol, CPR); 2133.08 (descending order of priority for withholding or withdrawing life sustaining treatment).
80 Ohio Rev Code § 2133.12 (DNR is not a suicide).
81 Ohio Rev Code § 2133.14.
82 See Ohio Rev Code § 2133.08.
83 Constante, DNR in the School Setting at 422.
84 See eg in a non-DNR case, Davis v Carter555 F 3d 979 (where, while coaches had acted with deliberate indifference by not permitting football players sufficient water during a summer practice, the conduct was not so conscience shocking so as to generate liability under intentional infliction of emotional distress or the constitutional tort of violating a student's bodily integrity). But see Neal v Fulton County Board of Education 229 F 3d 1069 (where a coach hitting a player with a weight lock that caused the student's eye to pop out of its socket met the conscience shocking standard); Patrick v Great Valley School District 296 Fed Appx 258 (coach permitting two wrestlers to practice where weight difference exceeded 90 pounds might constitute conscience shocking conduct as to the coach but not as to the school board that had no custom or practice of allowing such conduct).
85 Constante DNR in the School Setting 429. The author suggests that a student might suffer "extreme emotional harm" resulting from witnessing a student receiving emergency treatment against that student's wishes, but such an approach assumes that a DNR Order can be treated simply as a zero-sum game that views emergency treatment as equal to no emergency treatment, without having to consider student responses. One can argue, though, that because schools deal with populations of students, the decisions to treat or not treat are not equal and the attempt to consider them as such affects significantly our perspective of the value of human life.
86 AHA Scientific Statement 288.
87 Emergency cases where a DNR Order might be in place for a student without an IEP, or section 504 plan, are difficult to construct, but see Knapp v Northwestern University101 F 3d 473 (where the Seventh Circuit rejected the disability discrimination claim of a university student whom Northwestern refused to permit to practice or play with the team, although the student continued to receive an athletic scholarship, because the student had experienced sudden cardiac death while playing high school basketball. Even assuming that the student could have secured injunctive relief requiring that the university permit him to practice with the team and a DNR Order prohibiting the university from using life-saving treatment were he to experience sudden cardiac stoppage during a game or practice, one is hard pressed not to think that the university personnel would have not have attempted some form of emergency treatment. Worth noting is that the university's decision was not altered even though doctors, while plaintiff was still in high school, had inserted an internal cardioverter-defibrillator in his abdomen, a device that detects heart arrhythmia and delivers a shock to convert the abnormal heart rhythm back to normal).