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It started as an outing to Sesame Place. It ended in the heat-related death of a 20-year-old young man who suffered from severe autism. The temperature on July 24th soared to a record-breaking 97 degrees, but there is no way to know how hot it was inside the van in which 20 year old Bryan Nevins died. Bryan was found dead after being left in the locked van for approximately five hours. Prosecutors blame Bryan’s death on an employee of Woods Services in Langhorne, Bucks County, where Bryan had lived since he was 14. Woods Services is a residential treatment facility (RTF) for residents with special needs. According to Bucks County prosecutors, the Woods’ employee responsible for watching Bryan left him in the van, an act they described as “a criminal failure.”

The death of Bryan Nevins once again raises the question that has long tormented parents of children with special needs, “How can I protect my child?” And for parents of children who might need the services of a residential treatment facility, this question carries special weight, as children living in RTFs are especially vulnerable, and their needs are among the most complex.

While there are many laws on the books designed to protect the rights of these children, it can be a full time job to navigate the web of rules and regulations.

Among the most important laws to understand for parents of children at RTFs are the following:

The Individuals with Disabilities in Education Act (IDEA): Children in RTFs are entitled to a special education services. IDEA is a powerful and sweeping federal statute that sets forth the substantive and procedural rights of students with special needs and the school district’s obligations to provide eligible students with a Free and Appropriate Public Education (FAPE). IDEA specifically requires school districts to fund a placement in a residential treatment program, including non-medical care and room and board, at no cost to the parents, when that placement is necessary to provide special education and related services to a child with a disability. 34 C.F.R. § 300.104.

Chapter 14 of Title 22 of the Pennsylvania Code: In addition to the federal IDEA statute and regulations, Pennsylvania has enacted state laws to protect the rights of students with special needs in school, including those whose education is administered at an RTF.

Section 504 of the Rehabilitation Act of 1973: No recipient of federal funds may discriminate against an individual on the basis of that person’s disability. This federal anti-discrimination law protects all persons with disabilities, including those who reside in RTFs. Because RTFs are almost always recipients of federal funds, it is a violation of federal law for the staff and administration of these institutions to discriminate against their residents because of their disabilities.

Chapter 3800 of Title 55 of the Pennsylvania Code: This chapter of the Pennsylvania Code addresses the specific rights of children in residential treatment facilities and the responsibilities of those caring for them. Among the many issues covered by this chapter are: RTF licensure requirements, maximum capacity, health and sanitation procedures, consent to treatment, staff training and qualifications, and the complaint, grievance and appeals process for dispute resolution. This chapter can be found at:
http://www.pacode.com/secure/data/055/chapter3800/chap3800toc.html

The Pennsylvania Mental Health Procedures Act (Chapter 5100 of Title 55 of the Pa. Code): This chapter sets forth additional rights of patients who are being treated for mental health issues, and includes important procedural information pertaining to the development of treatment plans, confidentiality, and a patient Bill of Rights. This Chapter also addresses the very important issue of consent to treatment, which is particularly important in cases where the child who is residing at an RTF is 14 years or older. This chapter can be found at:
http://www.pacode.com/secure/data/055/chapter5100/chap5100toc.html

Of course, these are just a few of the laws that are relevant to parents of children with special needs in a residential treatment facility. As a parent, the best way to protect your child with special needs is by being informed – informed about the law and about the residential treatment facility caring for your child. Ask questions. Demand answers. And perhaps most important of all, trust your instincts. The old saying is true – parents really do know best.