Education Rights and Entitlements of Adolescents with HIV: A Legal Guide for Clinicians

1. Education Rights and Entitlements of Adolescents with HIV:A Legal Guide for Clinicians AETC Adolescent HIV/AIDS Workgroup

2. This presentation was developed by the Adolescent HIV/AIDS Workgroup, and its Legal Rights and Entitlements Subgroup, in collaboration with the AIDS Education and Training Centers National Resource Center (AETC NRC).

3. Subgroup Members • David Korman, JD — Subgroup Leader (Pennsylvania/MidAtlantic AETC) • Vera Holmes, LCSW (FXB Center) • Cathy Samples, MD, MPH (New England AETC) • Subgroup Members from AETC NRC • Megan Vanneman, MPH – Subgroup Coordinator • Supriya Modey, MPH, MBBS

4. An illness or condition does not define a person • Although HIV infection major concern for infected adolescent, desire for “normal a life as possible” universal quest. • Schooling—one element of that “normal life”.

5. Most frequent issues • For adolescents with HIV, the most recurrent education issues are: • Confidentiality (to mitigate stigma, bias, etc.). • Discrimination (and its loss of opportunities or failure to accommodate).

6. Laws affecting child’s right to education • Individual state laws pertaining to confidentiality, discrimination and education law issues. • At least 3 Federal laws likely to affect child’s right to education.

7. The big 3 Federal laws • Individuals with Disabilities Improvement Education Act (IDEA) • Rehabilitation Act of 1973 (Rehab Act) • Americans with Disabilities Act (ADA)

8. IDEA • Ironically, may be least applicable of laws for adolescent with HIV. • Why? • Provisions of Act apply only to persons with disability that adversely affects educational performance.

9. IDEA continued • Many otherwise healthy teens with HIV, no diminution of cognitive functions, per se. • However, if teen has co-morbidities (e.g., “psychopathology”, reactions to the medications) that diminish educational performance, IDEA may be applicable.

10. Under IDEA • Disabled child entitled to free, appropriate public education. • School’s program must be individualized to meet particular and specific needs of child.

11. Individualized education is crucial • School, adolescent/family are to collaborate in creating an “Individualized Education Plan” (IEP) that meets educational needs of the student. • If parties can not agree, administrative procedures for “Due Process” hearing.

12. Confidentiality requirements • Act provides for confidentiality of medical information. • Private medical information (including HIV information) is on “needs-to-know” basis and usually limited to nursing/medical staff at school. • In light of the applicability of “universal” or “basic” precautions, rarely reason for disclosure to teachers or coaches, etc.

13. Related services • Act also requires school to provide “related services” if appropriate: • “Related services” = supportive services, which may be required to assist child with disability to benefit from special education.

14. Related services include: • Speech-language pathology and audiology services • Psychological services • Physical and occupational therapy • Recreation, including therapeutic recreation • Social work services • Counseling services

15. Related services cont. • All such services and accommodations must be provided without cost to adolescent. • Accommodations and services that fundamentally alter nature of service, program, or activity may not be legally mandated.

16. Rehabilitation Act • Section 504 of the Rehabilitation Act of 1973 is national law that protects qualifiedindividuals from discrimination based on disability. • Nondiscrimination requirements of law apply to employers and organizations that receive financial assistance from any Federal department or agency.

17. Who is covered … • Section 504 protects qualified individuals with disabilities. • Individuals with disabilities= persons with physical or mental impairment that substantially limits one or more major life activities. • Persons with history of, or who are regarded as having a physical or mental impairment that substantially limits one or more major life activities, are also covered.

18. AIDS specifically included • Examples of impairments which may substantially limit major life activities, even with the help of medication or aids/devices: AIDS, alcoholism, blindness or visual impairment, cancer, deafness or hearing impairment, diabetes, drug addiction, heart disease, and mental illness.

19. HIV infection alone might not qualify as disability under Section 504 • Unless the HIV infection has resulted in the limiting of one or more “major life activities.” • Major life activities include caring for oneself, walking, seeing, hearing, speaking, breathing, working, performing manual tasks, and learning.

20. Many states have regulations to comply with Rehabilitation Act • Adolescent usually deemed “protected handicapped student.” • Protected handicapped student = student who meets the following conditions: • (i)   Is of age at which public education is offered in • school district. •     (ii)  Has physical or mental disability which substantially • limits or prohibits participation in or access to aspect • of the student’s school program. • (iii) Does not meet the requirements of “disabled” under • IDEA, or chooses not to claim IDEA.

21. Services to be reduced to writing • Similar to IEP under IDEA, should be a service agreement. • Service agreement = written agreement, executed by student’s parents and school official, setting forth specific related aids, services or accommodations to be provided to protected handicapped student.

22. Services to be provided • School district shall provide protected handicapped student enrolled in district, without cost to student or family, those related aids, services or accommodations needed to afford student equal opportunity to participate in and obtain the benefits of school program and extracurricular activities without discrimination and to the maximum extent appropriate to the student’s abilities.

23. Confidentiality must be maintained • As with IDEA, protected handicapped students, are to be provided confidentiality. • School district shall: • Protect confidentiality of personally identifiable information regarding protected handicapped student.

24. Americans with Disabilities Act (ADA) • Like Rehabilitation Act, broader than just education issues, and disability need not impede learning per se. • Most requirements of Rehabilitation Act duplicated in ADA. Primary difference - • ADA is applicable to schools that do not receive federal money.

25. Entitlement • School must assure programs it offers, including extracurricular activities, accessible to students with disabilities. • Postsecondary schools can do this in a number of ways: • Provide architectural access. • Provide aids and services necessary for effective communication. • Modify policies, practices and procedures.

26. Exception • Accommodation may not be legally mandated if poses “undue hardship” upon school district. • To date, courts very hesitant to find “undue hardship.”

27. Confidentiality • ADA specifically provides for confidentiality of private medical information. • Disclosure should be only to those who need to know information (e.g. school nurse who dispenses the medicine, but not the teacher).

28. Exclusions from activities • No justification for broad exclusion from school activities because of child being HIV-positive. • No high school athletic activity which warrants exclusion of child with HIV as “a danger to other children.”

29. Exclusions from activities cont. • Misperception that HIV positive children pose risk to others “on the sports field” can be addressed by assuring “universal/basic precautions” are practiced. • Non-disclosure of HIV status to coach, team members, etc. may be appropriate.

30. Legal remedies • Usually start with administrative complaints before Office of Civil Rights or Department of Education. • If not resolved at that level, litigation may be initiated with possible award of counsel fees.

31. Case study Parents had a child who was HIV positive, and with emotional and developmental disabilities. The parents had voluntarily disclosed their son’s HIV infection to the school’s educational staff as well as medical personnel. One of the other students in the class was violent and was biting other students and teachers with some regularity. The teacher and principal were concerned that the student who was “a biter” could be infected by biting the HIV positive student. Their initial response was to remove the HIV positive child from the classroom.

32. Questions • Is this a rational and legal response to a potential significant exposure? • Is it right for the HIV positive student to be denied services based on another student’s behavior? • Does this address the risky behavior of the biting student? • What about other persons who may be infected and bitten but are unidentified to the school? • What about other students being subjected to risk of getting bitten?

33. Questions (continued) • Were the parents of the HIV positive student required to disclose their son’s infection to the educational staff? Should they have? • Assuming that the emotional and developmental problems of the student were unrelated to the HIV infection, and that the HIV infection, per se, did not directly affect learning, which statutes were probably applicable: ADA, Rehabilitation Act, IDEA? Why?

34. Resources for these issues • Most states have public interest law firms that provide free assistance (e.g. Education Law Centers, Disabilities Law Centers) • The state or local Department of Education’s “Office of Special Education,” or “Office of Civil Rights.” • Local or state advocacy groups for “education rights” and “disability rights.”

35. While we try to teach our children all about life, it is our children who teach us what life is all about.