Sometimes, as parents, we have to insist that our kids' rights be protected. Fear and ignorance on the part of some people can cause a trampling of an individual's rights. In an effort to help you help your kids, we've listed organizations, agencies, and other avenues of assistance for you. Please contact us if you know of an appropriate addition to our list, or if you'd like help in protecting your child's rights.
Judith E. Heumann
Dr. Thomas Hehir
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Medical legal issues
FERPA: Requires all educators to safeguard a student's confidentiality, similar to doctors or social workers. They are exempted only in emergency situations.
ADA: The Americans with Disabilities Act mandates that when school officials (schools are considered a public accommodation under ADA) have questions about a disability and they need to ascertain if it poses a health risk, they are to consult with an objective medical authority.
The Americans with Disabilities Act (ADA) is instrumental in ensuring that schools (public and private), day care centers and other institutions that children interact with do not discriminate based on a child's health status.
The following is an excerpt from the ADA that illustrates what schools and other "public accommodations" must do to determine if a child's infectious disease poses a "direct threat" to other children or staff. The public accommodation can exclude an individual if he/she is found to pose a health threat. But there are specific steps that a public accommodation must follow to ensure no stereotyping, generalization or ignorance combine to unfairly punish and discriminate against an individual. The public accommodation must take reasonable steps to prevent any exclusion or discrimination.
Following the ADA Title III regulation excerpt is ADA's own analysis and elaboration of this section.
36.208 Direct Threat
(b.) Direct threat means a significant risk to the health or safety of others that cannot be eliminate by a modification of policies, practices or procedures, or by the provision of auxiliary aids or services.
(c.) In determining whether an individual poses a direct threat to the health or safety of others, a public accommodation must make an individualized assessment, based on reasonable judgment that relies on current medical knowledge or on the best available objective evidence, to ascertain: the nature, duration and severity of the risk; the probability that the potential injury will actually occur; and whether reasonable modifications of policies, practices or procedures will mitigate the risk.
The determination that a person poses a direct threat to the health or safety of others may not be based on generalizations or stereotypes about the effects of a particular disability; it must be based on an individualized assessment that conforms to the requirements of paragraph (c) of this section.
Paragraph (c) establishes the test to use in determining whether an individual poses a direct threat to the health or safety of others. A public accommodation is required to make an individualized assessment, based on reasonable judgment that relies on current medical evidence or on the best available objective evidence to determine: the nature, duration and severity of the risk; the probability that the potential injury will actually occurs; and whether reasonable modifications of policies, practices or procedures will mitigate the risk.
This is the test established by the Supreme Court in (School Board of Nassau County v. Arline 480 U.S. 273 1987. Such an inquiry is essential if the law is to achieve its goal of protecting disabled individuals from discrimination based on prejudice, stereotypes or unfounded fear, while giving appropriate weight to legitimate concerns, such as the need to avoid exposing others to significant health and safety risks.
Making this assessment will not usually require the services of a physician. Sources for medical knowledge include guidance from public health authorities, such as the U.S. Public Health Service, the Centers for Disease control and Prevention and the National Institute of Health, including the National Institute of Mental Health.
(end of ADA laws and analysis)
Putting This Into Action
If you find yourself in a situation where you think or feel your child has been denied services or resources because of his/her infectious disease status, contact your state's human rights commission, or an advocacy service for the disabled or other non-profit, state and federal agencies that advocate for or regulate that organization.
Here are some scenarios where the ADA's protection is important:
A school or day care center cannot dismiss a child or discriminate in some other way on some vague belief that the child can spread the infectious disease if the child:
The school or day care center must first exhaust all "reasonable precautions" such as requiring immunizations among all staff and students (in private settings) if the state does not already require them.
A school or other public accommodation cannot discriminate against a child based on some rumor or stereotype. School districts and other centers must have a protocol in place to follow, which usually involves consulting with the school nurse and/or designated physician, in order to assess the true risk an infectious disease poses.
All Kids Count: Child Care and the Americans with Disabilities Act. This book informs child care providers on what they have to do to comply with the ADA. It's good information for a parent to have. To order a copy, contact:
Office for Civil Rights, Region V*
*= IL, IN, MI, MN, OH, WI only
Contact OSEP for copy of U.S. Family Educational Rights and Privacy Act of 1974.
Illinois State Bd. of Ed.
ISBE Special Education Services Publication List contains 69 publications available to the public. One is "The Illinois School Student Records Rules and Act" (23 Illinois Administrative Code, Part 375). To request publications, write to ISBE, Information and Reception Center 100 North First St, S-100, Springfield, IL 62777-0001
Family Resource Center on Disabilities
To obtain a copy of your child's school records:
Put request in writing, keep a copy of it, send it certified, return receipt requested. The school should provide a copy of her records within 15 days. There could be a copying charge, but if you can't afford it they have to give you the copy for free.
Sample letter they provided:
Dear (Principal, Superintendent, etc),
According to 23 Illinois Administrative Code Section 226, and the Student Records Act, I am requesting a copy of all of (child's name and birth date) records, both permanent and temporary. Please be certain that medical records are included as well. It is my understanding that my daughter's records should be available to me within 15 days. Your prompt attention to this matter is appreciated.
Important disclaimer: The information on pkids.org is for educational purposes only and should not be considered to be medical advice. It is not meant to replace the advice of the physician who cares for your child. All medical advice and information should be considered to be incomplete without a physical exam, which is not possible without a visit to your doctor.
In the final analysis, the question of why bad things happen to good people transmutes itself into some very different questions, no longer asking why something happened, but asking how we will respond, what we intend to do now that it happened.
Harold S. Kushner