Student Health Issues And Special Education: Medically Fragile Students And IDEA

Student Health Issues and Special Education: MEDICALLY FRAGILE CHILDREN

I. INTRODUCTION

1) Definition. The term “Medically Fragile Children” first arose in health care

professions to refer to children with complex health care needs, whose maintenance

and well-being require treatments, medications, technology and ongoing trained

supervision. 1A medically fragile child may be a child with multiple disabilities. She

may be a child with a progressive degenerative disease, or a child with a chronic

disease like HIV or Hepatitis B. A medically fragile child’s essential life functions

may be supported by technological devices.

a) The obligations of the public schools toward the medically fragile are defined by

Section 504 of the Rehabilitation Act2, the ADA, and the Individuals with

Disabilities Education Act (IDEA).3

1 . Although Children and Youth Social Service Agency/DPW usage has expanded to term to include children with demanding non-health care related needs, within the context of education law, the term retains its medical connotation. See, generally, www.dpw.state.pa.us 2 15 Pa. Code Section 13 implements Section 504 of the Rehabilitation Act in Pennsylvania 3 20 U.S.C. 1400 et seq, implemented in Pennsylvania through 24 P.S. Section 13-1371 & 1372. Special Education and Medically Fragile Children Page 2 of 15

b) Provision of health services to medically fragile children in a public school setting

may involve additional issues related to the rights of individuals to control their

receipt of life saving treatments and interventions.4

II. ZERO REJECT REVISITED: IDEA and Medically Fragile Children.

1) STATUTE: The Individuals with Disabilities Education Act (IDEA), 20 U.S.C. §1400 et seq, requires that States receiving federal special education funds assure the identification and free appropriate public education (FAPE) of students with disabilities in the least restrictive environment. Provision of FAPE includes special education and any related services required to “assist a child with a disability to benefit from the instruction.”5

a) Zero Reject. One of the core principals of IDEA and its predecessor legislation, the Education for All Handicapped Children Act, is the “zero reject” policy: all children are entitled to FAPE “regardless of the severity of their disabilities.” 20 U.S.C. §1412(a)(3)(A). This is true despite the fact that the services necessary may not be strictly ‘educational’ in nature.

i) “Services … that permit a child to remain at school during the day are no less related to the effort to educate than are the services that enable the child to reach, enter, or exit the school.”6

ii) There is no threshold need for evidence that the child will ‘benefit’ from special education before the District’s responsibility to provide FAPE attaches. This principal was clearly established in Timothy W. v. Rochester N.H. School Dist., 875 F.2d 954, cert. denied, 493 U.S. 983 (1989).7

b) “[R]elated Services are defined to include supportive services that are required to assist a child with a disability to benefit from special education, but exclude “medical services” unless they are for diagnosis or evaluation. 8

4 Confidentiality rights and restrictions are also at issue in these cases, although they are not addressed within the scope of this article. 5 Ridgewood Board of Education v N.E., 172 F. 3d 238 (3rd Cir. 1999) 6 Irving Independent School District v Tatro, 468 U.S. 883 (1984), at 891. 7 Timothy W. was a child with spastic quadriplegia, cerebral palsy, cortical blindness, and a seizure disorder, as well as profound global developmental delay, whom the District sought to exclude on the stated basis that he would not receive any benefit from instruction. The First Circuit clarified that the act required that a school district must provide special education to a child, without requiring that the parents prove that the child could benefit from special education. 8 20 U.S.C.§1401(a)(17) Special Education and Medically Fragile Children Page 3 of 15

1. If a District requires a medical evaluation for purposes of diagnosis or programming, that evaluation must be provided at District expense. 9

2. “Medical Services” is defined as services provided by a physician and does not include services provided by a non-physician.

Statute: TITLE I / A / 602 / (26) Related services.--

(A) In general.--The term `related services' means transportation, and such developmental, corrective, and other supportive services (including speech- language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, social work services, school nurse services designed to enable a child with a disability to receive a free appropriate public education as described in the individualized education program of the child, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services, except that such medical services shall be for diagnostic and evaluation purposes only) as may be required to assist a child with a disability to benefit from special education, and includes the early identification and assessment of disabling conditions in children.

(B) Exception.--The term does not include a medical device that is surgically implanted, or the replacement of such device.10

i) The Regulations, at 300.34 provide a long list of specifically named supportive services.

(1) The term “related services” is not limited to this list, which is not intended to be exhaustive, as is plain from the fact that Congress introduced the list by use of the term ‘including’.11,12

9 Cedar Rapids Community School District v Garret F, 526 U.S. 66 at 71, 119 S. Ct 992 (1999), interpreting 20 U.S.C. §1401(a)(17) 10 The new regulations deal with the ongoing assessment of cochlear implants during the school day for functionality: Commentary on new regs: “We have reformatted Sec. 300.34(b) and added a new paragraph (2) to clarify that a child with a cochlear implant or other surgically implanted device is entitled to the related services that are determined by the child's IEP Team to be required for the child to benefit from special education. We have also added the phrase ``services that apply to children with surgically implanted devices, including cochlear implants' to the heading in Sec. 300.34(b).” 11 American Surety Co. v Marotta, 287 U.S. 513, 517 (1933). 12 “Section 300.34(a) and section 602(26) of the Act state that related services include other supportive services that are required to assist a child with a disability to benefit from special education. We believe this clearly conveys that the list of services in Sec. 300.34 is not exhaustive and may include other developmental, corrective, or supportive services if they are required to assist a child with a disability to benefit from special education. It would be impractical to list every service that could be a related service, and therefore, no additional language will be added to the regulations. Consistent with Sec. Sec. 300.320 through 300.328, each child's IEP Team, which includes the child's parent along with school officials, determines the instruction and services that are needed for an individual child to receive FAPE. In all cases Special Education and Medically Fragile Children Page 4 of 15

c) “School health services and school nurse services” means health services that are designed to enable a child with a disability to receive FAPE as described in the child's IEP. School nurse services are services provided by a qualified school nurse. School health services are services that may be provided by either a qualified school nurse or other qualified person.” Regulations: Part 300 / A / 300.34( c ) (13) i) Services vary depending upon the needs of the student receiving the services. 20 U.S.C. 1401(a)(17). ii) In practice, individualized school health services may include whatever IEP responsibilities the IEP team believes are best performed by school health staff or under the supervision of individuals trained for that purpose.

(1) Persons other than school health personnel may be needed to provide related services. “Congress plainly required schools to hire various specially trained personnel to help handicapped children..” 13

iii) There have been cases where teachers, and other non-health personnel, who have been required to provide health support services, refused, believing they were being asked to provide services for which they were not qualified. These issues emerge in union contract negotiations, and court. 14

2) CASELAW. Because of the cost and demanding nature of some services required by medically fragile children, the LEAs have long argued that some health related services are outside the scope of the IDEA. The issue has been decided not once, but twice, by the United States Supreme Court. A discussion of the development of the case law is illustrative of the arguments repeatedly raised in these factual situations. a) TATRO and the Bright Line Test. In Irving Independent School District v Tatro, 468 U.S. 883 (1984), the United States Supreme Court addressed the issue within the factual context of whether clean intermittent catheterization (CIC) would be considered a related service under IDEA.

Amber Tatro was a child with spina bifida, resulting in, among other disabilities, a neurogenic bladder. CIC was required to be performed every three to four hours to avoid kidney damage. It was described as a fairly simple procedure that a person could be trained to do in ‘less concerning related services, the IEP Team's determination about appropriate services must be reflected in the child's IEP, and those listed services must be provided in accordance with the IEP at public expense and at no cost to the parents. Nothing in the Act or in the definition of related services requires the provision of a related service to a child unless the child's IEP Team has determined that the related service is required in order for the child to benefit from special education and has included that service in the child's IEP.” PREAMBLE Part 300, Commentary and Discussion, Federal Register / Vol. 71, No. 156 / Monday, August 14, 2006 / Rules and Regulations 46569.

13 Irving Independent School District v Tatro, 468 U.S. 883 at 893, quoting S. Rep. No. 168, 94th Cong., 1st Sess.33 (1975) (1984), 14 Stamps v Jefferson County Bd of Ed, 21 IDELR 905 (Ala. 1994) Special Education and Medically Fragile Children Page 5 of 15

than an hour’. The LEA claimed it to be a medical service, and had offered an IEP for homebound or a short school day in order for the family to provide the service itself. The Parents believed the child should stay in school, and the LEA provide personnel trained to perform this CIC service during the school day.

The Parents lost at due process and, thereafter, at district court level, where it was held that CIC was a medical procedure, not a supportive service, and thus was excluded from the related services requirement.

The appellate court reversed the district holding, finding CIC a supportive service, not medical, and thus required under IDEA to be provided by the LEA. The District appealed to the U.S. Supreme Court.

The Supreme Court concluded that CIC was a supportive service, because it was necessary to enable Amber to attend school. Without CIC, Amber could not receive FAPE in the LRE. Additionally, the Court concluded that CIC was not a medical procedure because it did not need to be provided by a physician. The court established three criteria for determining whether a service is a supportive service or a medical service excluded from IDEA:

(1) the student must be IDEA eligible;

(2) the service must be necessary to assist the child to benefit from special education, 15and;

(3) the service must be performed by a nurse or other qualified person (services performed by a physician are excluded.) Tatro, 468 U.S. at 894.

b) Following Tatro. Although the Tatro decision created a clear, bright line test for determining when related services were excludable as “medical”, room for argument was found in the facts. The Court had noted that the procedure in question, CIC, was not burdensome on the District, due to its relative simplicity and ease of administration. Several circuits and commentators16 thereafter argued 15 This prong of the test was further interpreted by the Department of Education as follows: ”First, in order to be entitled to receive the service, the child must be handicapped… Second, the services must be necessary to aid a handicapped child to benefit from special education. If the treatment or medication could be given during non-school hours, then the school district is not required to provide the service, even if the burden would be minimal. Third, the service need only be provided if it can be provided by a nurse or other qualified person, not a physician.” Letter to Del Polito, Educ. Handicap. L Repl 211:392, 393 (June 24, 1986); Letter to Greer, 19 Ind. Disab. Educ. L. Rep. 348, 349 (July 14, 1992) (same). 16 Bevin H. V Wright, 666 F. Supp. 71 (W.D. Pa. 1987); for a 1993 argument in this vein, see also: Related Services for Students with Disabilities: What Educational Consultants Need to Know. Contributors: Perry A. Zirkel - author. Journal Title: Journal of Educational and Psychological Special Education and Medically Fragile Children Page 6 of 15

that Tatro’s three prong test should be viewed through the prism of the particular facts of the case, and that the degree to which the health related needs of a student burdened the LEA was a legitimate consideration in the determination of whether services were “medical” or not. This resulted in a division among circuits, several of which began to follow what became known as the “Nature-of Services Standard.”

i) Detsel v Auburn Enlarged City School District Bd of Ed, 820 F 2d 587 (2nd Cir. 1987). Melissa D, with severe disabilities, required constant respirator assistance by a trained aide. When she began school, social services refused to continue paying for a nurse during school hours. Melissa had an IEP which included “appropriate health services.” The District refused to pay for the nurse required to maintain her respirator. The court ruled that complex health services such as Melissa needed were not the responsibility of the school district. Other circuits followed suit, finding against students and in favor of Districts were “complex health services” were required. These courts did not use the bright line test developed in Tatro, but concluded that whether a school health service is a related service or an excludable medical service depended on the amount of care required, and the cost. 17

ii) Other circuits adopted the bright line test of Tatro and it was one of these decisions, Cedar Rapids Community School District v Garret F., 103 F. 3d 822 (8th Cir 1997), which ultimately resulted, on school district appeal, in the United States Supreme Court affirming Tatro.

c) Cedar Rapids Community School District v Garret F., 119 S. Ct 992 (1999) (attached) (hereinafter Garret F.)

Garret F. was a 12 year old medically fragile student who required constant nursing services. He had been paralyzed in a motorcycle accident at age 4, and was ventilator-dependent. He also required tracheotomy supervision and suctioning, repositioning in his wheelchair, assistance with eating and drinking, ventilator setting checks, observation for respiratory distress, catheterization, and observation for autonomic hyperreflexia. In prior school years, a parent or relative attended school with Garrett to see to his needs. They used their own money, funds from proceeds from a settlement, and their own insurance to fund these services. In middle school, the Parents requested that the District assume these costs. The District refused these services, arguing the services were medical and that the

Consultation. Volume: 4. Issue: 2. Publication Year: 1993. Page Number: 137. 17 Neely v Rutherford County School, 68 E 3d 965 (9th Cir. 1995); Bevin, supra,(W.D.PA); Granite School District v Shannon M.,787 F. Supp. 1020 (D.Utah 1992) Special Education and Medically Fragile Children Page 7 of 15

Parents had the means to afford to pay for the services themselves. Parents prevailed at due process, where the Tatro bright line test was applied. The District appealed to the circuit court, where the bright line test was applied, and Parents prevailed. The court clarified that the ongoing nursing services fell within the IDEA related services mandate because they could be provided without the services of a physician. The District appealed to the Eighth Circuit, where it lost, and thereafter to the U. S. Supreme Court, which reaffirmed the bright line test of Tatro.

The Court acknowledged that the District’s financial concerns were legitimate, but the proposed cost-based standard for entitlement to services put forth by the District would run afoul of zero reject.

3) CURRENT ISSUES.

a) Funding. Congress has provided the States with methods to ensure that LEAs are not the required to bear the fiscal burden of health care costs alone.18

i) Upon enactment of IDEA’s predecessor statute, although “Congress provided that the LEA is to be the final responsible authority for assuring that all handicapped children have available to them free appropriate public education, it does not intend that State and local educational agencies must be the sole providers of such services.” 19

ii) In 1997, IDEA strengthened the provisions for interagency coordination for funding, in 1997 Amendments §§612(a)(12)(A) and (C), and continued through IDEIA.

(1) The legislative history makes clear that the subsection was intended “to reinforce two important principles: (1) that the State agency or [LEA] responsible for developing a child’s IEP can look to non-educational agencies, such as Medicaid, to pay for or provide those services they (the non-educational agencies) are otherwise responsible for; and (2) that the State agency or [LEA] remains responsible for ensuring that children receive all the services described in their IEPs in a timely fashion, regardless of whether another agency will ultimately pay for the services.” 20

(a) Under IDEA’s funding scheme, the portion of the financial burden that is placed on the LEAs depends in large part on the State’s choice of a special education financing system.

18 See §300.154 et seq 19 S. Rep. No. 168, 94th Cong., 1st. Sess. 22 (1975). 20 H.R. Rep. No. 95, 105th Cong., 1st Sess. 92 (1997); S. Rep. No. 17, 105th Cong., 1st Sess. 12 (1997). Special Education and Medically Fragile Children Page 8 of 15

iii) Medicaid is the payor of first resort for health related services to medically fragile children. 21

(1) Parents are not required to obtain MA or await the District’s obtaining MA before receiving services required under Garret F and IDEA.

(2) “Despite written federal guidance, schools have difficulty meeting the complex reimbursement rules under Medicaid. According to federal investigations and congressional hearings, Medicaid payments to schools have sometimes been improper. P.L. 110-173 included a moratorium on any administrative action restricting Medicaid coverage or payments for school-based administration and transportation services until June 30, 2008. Other legislation would extend this moratorium.” CRS22

iv) Private Insurance: Districts may access parent’s private insurance if it is offered, but may not require it.23

(1) However, depletion of private insurance has been found to violate IDEA because it violated the requirement that special education be provided at no cost to the parent. 24

b) Liability and Risk. LEAs and/or the State must provide standards of care and training for individuals involved in the administration of health support services to individual students. Similarly, the qualifications and responsibilities, and legal liabilities, of staff must be clarified. i) See reference to school principal found to be practicing nursing without a license, this section (8) (d) (1). c) Training and licensing standards – related services personnel. i) Personnel Qualifications under IDEA are found at 20 U.S.C. 1412(a)(14) ii) State professional and paraprofessional licensing and practice standards may be applicable for personnel employed to deliver health related and other supplemental services. iii) The recent changes to the regulations concerning professionals and paraprofessionals in the schools (300.156(b) current/ former 300.136 provides

21 TITLE I / C / 640 Sec. 640 PAYOR OF LAST RESORT.; 20 U.S.C.1412(a)(12)(A)(i) (payor status of MA preceded financial responsibility of the local educational agency.) 22 Public Law 110-173 (12-29-07) Medicare, Medicaid, and SCHIP Extension Act of 2007 online at Open CRS: http://opencrs.com/document/RS22397/2008-05-28%2000:00:00, accessed September 1, 2008. 23 Letter to Durant, November, 2002, OSEP, attached. (predates IDEIA). Please note: 20 U.S.C. § 1406. Re: use of policy letters. However, Courts and others charged with enforcing the law must give considerable deference to an agency's interpretation of a statute that it administers, and may "not substitute its own reading unless the agency's interpretation is unreasonable." Skandalis v. Rowe, 14 F.3d 173, 178 (2nd Cir. 1994)(citing Chemical Mfrs. Ass'n v. Natural Resources Defense Council, Inc., 470 U.S. 116, 125 (1985); Chevron U.S.A., Inc. v. National Resources Defense Council, Inc., 467 U.S. 837, 844 (1984). 24 Shook v Gaston County Board of Education, 882 F. 2d 119( Ala. 1994) Special Education and Medically Fragile Children Page 9 of 15

more flexibility for LEAs in training and qualifications requirements for paraprofessionals and therapists. (1) Issue of whether these individuals will meet the necessary licensure requirements for M.A reimbursement must be addressed by the LEAs.

iv) When considering a service not previously provided, or with which District personnel are not familiar, the District is responsible for determining the appropriate professional qualifications for the provider. State laws will apply.25

(1) Case law Example: An untrained aide, assigned by the principal to perform CIC for a student, brought suit. The State Board of Nursing reported that the principal was practicing nursing without a license by presuming to know the health needs of the student. 26

d) Least Restrictive Environment and Third Party Providers. i) Least Restrictive Environment requirements of IDEA are fully applicable to students who may be classified as medically fragile. The fist tier of consideration for placement is the regular education classroom with supports.

ii) With medically fragile children needing residential or therapeutic placement, the District, through funding sources, may wish to provide the student with a placement which is dictated by the third party provider. IDEA has no authority over third party providers, and cannot enforce principals of LRE and FAPE against these parties. However, the inability or unwillingness of a third party provider to meet the standards of FAPE or LRE does not relieve the LEA of the responsibility to meet these standards. 27

e) Transportation.

25 Schwab, Nadine C. and Gelfman, Mary H. B., Legal Issues in School Health Services, New York/Authors Choice, 2005. 26 Mitts v Hillsboro Union HS Dist No.3, Wash Co Circuit Court, case no. 87-1142C(1990) 27 300.103 Preamble: Commentary and Discussion. §300.146, Fed. Reg. Vol 71, No. 156, P 46,599. (Discussion re: If 3rd party does not meet the std of FAPE.)

“The Act does not give the Department the authority to impose the standards of the Act on public benefits or insurance agencies, when paying for special education. If, however, a third party provider, such as a public benefits or insurance company, is unable to provide funding for services outside a clinical setting or other specific setting, the public agency cannot use the third party provider's inability to provide such funding as an appropriate justification for not providing a child with a disability FAPE in the LRE. “ Fed Reg/Vol 71, No 156/ August 14, 2006/ Rules and Regulations/ P. 46,608. Special Education and Medically Fragile Children Page 10 of 15

i) Receipt of a medical request for special transportation for a child should trigger either special transportation, or an evaluation and meeting, and amendment of the IEP. ii) For transportation, as for all special education and related services, if a medical evaluation or consult with a medical advisor is required by the District to assess transportation needs, the LEA must provide it at no cost to parents.

(1) Case law example: A District provided tracheostomy care for a student in school, but denied the support service during transport to and from school. The court required the District to hire and train an individual to perform this service during transport. 28

f) Medication delivered during school hours.

i) District may not require a waiver of liability as a condition of administration of medication in school. It is a support service that must be provided. 29

g) Identification. Other Health Impairment. Disability categories are listed in the Regulations at 300.8 (C) (9).

i) The list of impairments included within the regulations for OHI classification is not intended to be exhaustive or exclusive. Rather, the determination as to whether or not a child’s disability requires identification under IDEA is to be made by the IDEA mandated procedure of evaluation and team decision. 30

(1) During the development of the Regulations, it was requested, by some commentators, that OHI be limited to medical conditions “generally recognized by medical authorities.” This request was specifically refused as contrary to the intent of IDEA. 31

(2) The states may mandate a medical evaluation as part of their requirements for qualification, if they wish, at LEA expense. h) Supports for school personnel and parent training. Health care issues may involve a much greater than usual consideration of these provisions of the IDEA. i) Supports for School Personnel. The ‘Official Comments to the Federal Regulations under IDEA, published in the March 12, 1999 Federal Register, (Volume 64, No. 48, at p. 12,406 et seq.)’, are illuminating, particularly with reference to a medically fragile child: ii) Supports do not generally mean mere in service training. "Supports for school personnel could also include special training for a child's teacher. However, in

28 Macomb Int v Joshua S, 715 F.Supp. 824 (E.D.Mich 1989) 29 Berlin Brothers Valley School District (PA) 353:124 (OCR 1988) 30 Part 300 & 301 Regulations, Preamble Comments and Discussion, Fed Reg Vol. 71, pages 46551-46552. 31 at page 46552 Special Education and Medically Fragile Children Page 11 of 15

order for the training to meet the requirements of [former regulation] §300.347(a)(3) [now renumbered as 34 C.F.R.300.320], it would normally be targeted directly on assisting the teacher to meet a unique and specific need of the child, and not simply to participate in an inservice training program that is generally available within a public agency" (Fed. Reg Vol 64 at p. 12,593). i) Parent training: i) 34 C.F.R. 300.34, Subsection (c)(8) defines parent counseling and training as:

“(i)… assisting parents in understanding the special needs of their child; (ii) Providing parents with information about child development; and (iii) Helping parents to acquire the necessary skills that will allow them to support the implementation of their child’s IEP or IFSP.”

4) ASSISTIVE TECHNOLOGY. Assistive technology is frequently a crucial part of the necessary services under a medically fragile student’s IEP.

a) “The IEP Team's decision about any assistive technology needs is made on a case- by-case basis, taking into consideration the unique needs of each individual child. If the IEP Team determines that a student with disabilities requires assistive technology, such as a personal computer, in order to receive FAPE, and designates such assistive technology as either special education or related service, the IEP must include a specific statement describing such service, including the nature and amount of such service.” 32

i) As with all related services, cost is not a permissible determining factor.

Sec. 300.5 Assistive Technology Device. Assistive technology device means any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of a child with a disability. The term does not include a medical device that is surgically implanted, or the replacement of such device.

(Authority: 20 U.S.C. 1401(1))

Sec. 300.6 Assistive technology service.

Assistive technology service means any service that directly assists a child with a disability in the selection, acquisition, or use of an assistive technology device. The term includes--

32 OSEP Policy Letter to Anonymous, 29 IDELR 1089 (1/6/97) See OSEP Policy Letter to Hamilton, EHLR 213:269 (7/10/81) (Although computers and other technological equipment are not specifically included in the definition of related services, for some children they may be necessary to provide FAPE). Special Education and Medically Fragile Children Page 12 of 15

(a) The evaluation of the needs of a child with a disability, including a functional evaluation of the child in the child's customary environment;

(b) Purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by children with disabilities;

(c) Selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices;

(d) Coordinating and using other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs;

(e) Training or technical assistance for a child with a disability or, if appropriate, that child's family; and

(f) Training or technical assistance for professionals (including individuals providing education or rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of that child.

STATUTE

Statute: TITLE I / C / 640

b) Assistive Technology is provided, through the student’s IEP, in a manner specifically descriptive enough to make clear what service is being provided. If the assistive technology is necessary for the student to complete his education while at home, for homework, IDEA requires that it be provided in that setting. AT provision is specific to the individual student’s needs. 33

III. NON-DISCRIMINATION: SECTION 504 and ADA.

1) Students eligible under IDEA are a subset of students eligible under Section 504 and the ADA. Protections offered under Section 504 and the ADA are therefore equally applicable to students with IEPs. The following issues have frequently been addressed through Section 504 actions and complaints. a) Physical Access i) Separate but Unequal. Program accessibility does not require that School Districts make all of their existing buildings accessible. However, Districts have been found, by OCR, to be discriminatory against physically disabled students by not providing accessibility to various school related programs and

33 Cobb County (GA) Sch. Dist., 27 IDELR 229 (OCR 5/22/97). Newton (MA) Pub. Schs., 27 IDELR 233 (OCR 5/30/97). Chapel Hill-Carrboro (NC) City Schs., 27 IDELR 606 (OCR undated). Bacon County (GA) Sch. Dist., 29 IDELR 78 (OCR 3/13/98). Special Education and Medically Fragile Children Page 13 of 15

locations, or by separating students with physical disability from their peers. The following examples were found by OCR to violate section 504:

(1) providing portable classrooms for children with disabilities where non- disabled children were not assigned to portable classrooms, 34

(2) holding high school graduation ceremonies in inaccessible facilities, 35

(3) barring student from field trips due to “safety concerns” because of a student’s progressive neurological disorder. 36

b) Sports: The eligibility rules for interscholastic athletic teams may be a complex system of district, athletic association, conference and state restrictions. While these rules may not be prima facie discriminatory, they may be inappropriately used to exclude students with disabilities from participation.

(1) Medical requirements: The court found a violation of section 504 in a LEA’s refusal to allow a student with only one kidney to participate on the wrestling team. 37

(2) Academic requirements: The court found a violation of section 504 where a student with ADHD was denied eligibility for a team on academic grounds. 38

(3) Honors and awards. The court found a violation where a student was denied sole valedictorian status solely due to her accommodations as a student with a disability.39

c) Specific Chronic Disabilities under Section 504: i) HIV. Children with HIV are considered disabled under the Section 504 Definition and are entitled to confidentiality. (OCR Staff Memorandum, April 5, 1990) ii) Diabetes. Students with diabetes are eligible for protection under Section 504 because diabetes significantly interferes with normal functioning of the endocrine system. (Inquiry, 1996) iii) Asthma. Asthma is a chronic respiratory disease with a wide range of severity.

34 Saginaw (MI) School District of the City of, 16 EHLR 801 (OCR 1995) 35 West Warwick (RI) Public Schools (OCR 1993) 36 Quaker Valley(PA) School District (OCR 1986), OCR ordered a LEA to provide notice to parents that children with disabilities had equal access to field trips in another case with similar facts MT. Gilead (OH) Exempted Village School District (OCR 1993). 37 Poole v South Plainfield Board of Education,490 F. Supp 948 (D. N.J. 1980); see also Grube v Bethlehem Area S.D., 550 F. Supp. 418 (E.D. Pa. 1982), with similar facts re: exclusion from football team. 38 Hoot v Milan Area School, 853 F.Supp 243 (E.D.Mich.1994) 39 Hornstein v Twp of Moorestown, et al, 263 F. Supp. 2d 887 (D. NJ 2003) Special Education and Medically Fragile Children Page 14 of 15

d) Homebound Instruction. The limitation of homebound instruction to a set number of hours per week has been found to violate Section 504 because a student’s needs must be individually considered. 40

e) Evaluation. Under Section 504, as well as IDEA, any evaluation or consultation necessary to determine either whether a child requires services, or the nature of those services, must be provided, at no cost to the parent, by the LEA. 41

i) If the LEA believes evaluation or consultation with a physician is a necessary part of the development of an appropriate 504 or service plan, or as part of the initial evaluation of the student, it is the LEA’s responsibility to provide this consultation or evaluation itself.42

f) Specialized transportation. Under Section 504, as well as IDEA, students who require specialized transportation must receive it. 43

IV. DNR in the Public Schools

1) Constitutional law. Individuals with end stage medical conditions have the right to refuse medical treatment to prolong life. 44 This right exists within public institutions. 45

b) Caselaw: ABC School v. Minor M., 26 IDELR 1103 (Mass. Super. Ct. 1997). In ABC, Minor M was a four year old with severe medical and cognitive disabilities. She weighed twenty pounds. Her medical condition severely deteriorated. While at school, her breathing ceased. The school nurse administered CPR and the girl was transported to the hospital. Following this, the attending physician issued a DNR order limiting the kinds of intervention which should be performed on the girl should she suffer another apneic episode or cardiac arrest. The school, uncertain of its responsibilities or liabilities in this situation, sought court intervention to permit it to refuse to follow the order. Parents claimed that the school’s refusal violated Minor M’s constitutional rights. The court avoided addressing the validity of the order itself, in finding for parents, basing its decision upon the fact that the school was being asked to refrain from performing

40 Boston (MA) Public Schools (OCR), 1994); Tacoma WA) School District # 10 (OCR, 1996); Mobile (LA) County School District, (OCR 1995) 41 Letter to Veir, OCR 1994; Grafton (ND) Public Schools,(OCR 1993) 42 Chester County (SC) School District ,(OCR 1992) 43 Yorktown (NY) Central School District, (OCR 1989) 44 Cruzen v. Director, Mo.Department of Health, 497 U.S. 261, 110 S.Ct. 2841 (1990); Halderman v. Pennhurst State Sch. & Hosp., 1997 U.S. Dist. LEXIS 20504 (E.D. Pa 1997) 45 Halderman v. Pennhurst State Sch. & Hosp., 1997 U.S. Dist. LEXIS 20504 (E.D. Pa 1997) Special Education and Medically Fragile Children Page 15 of 15

services, not to take action, and parents, as guardians of a minor child, have a right to refuse medical treatment for their child. 2) Pennsylvania Statutory Law. On November 29, 2006, Pennsylvania enacted P.L. 1484, No. 169. It repealed the prior DNR Act and replaced it with the Out-of- Hospital Nonresuscitation Act (Act) (20 Pa.C.S. §§ 5481-5488).

a) “The Act empowers a person with an end-stage medical condition or an appropriate representative of that person to secure an out-of-hospital DNR order and, at the person’s option or the option of an authorized representative, an out- of-hospital DNR bracelet or necklace.”46

b) The Act applies to EMS providers.

Additional Sources:

Pennsylvania Department of Health, Public Information

Pennsylvania Department of Welfare, Public Information

Shwab, Nadine & Gelfman, Mary, editors: Legal Issues in School Health Services, Authors Choice Press New Your, New York, 2005

Zirkel, Perry A., Related Services for Students with Disabilities: What Educational Consultants Need to Know. Journal Title: Journal of Educational and Psychological Consultation. Volume: 4. Issue: 2. Publication Year: 1993. Page Number: 137, accessed August, 2008.

46 Pennsylvania Department of Health Bulletin: Questions and Answers about the Out-of-Hospital Nonresuscitation Act, available online at . http://www.dsf.health.state.pa.us/health/cwp/view.asp? a=170&q=236932