Understanding Educational and Health Care Privacy Laws: A guide for parents of
youth with special health care needs
Purpose: The purpose of this Fact Sheet is to provide parents with information on education and health care privacy laws that will change your role in your child’s education and health care management when your child legally becomes an adult. This is intended as brief introduction and only includes basic information about these laws. For more information, please see the resources listed at the end of this Fact Sheet.
Background: Parents play an important role in the education and medical care of their children with special health care needs. From helping to develop their child’s individualized education plan to making important medical decisions, parents are at the center ensuring their child’s education and medical needs are met. However, as children age and approach the age of majority (i.e., the age at which a person legally becomes an adult), certain laws may change how involved parents can be in their child’s and medical care. Before a child reaches the age of majority, parents legally have full access to their child’s educational and medical care. This includes having access to medical and educational records, communicating with educational and medical professionals regarding their child, and attending any relevant meetings/appointments. After a child reaches the age of majority, these legal rights shift from the parent to the child and the parent may not legally be involved in these issues without their child’s signed permission.
Two important Federal privacy laws apply to education and health care. The first, the Family Educational Rights and Privacy Act (1974), applies to education records. The second law, the Health Information Portability and Acceptability Act (1996), applies to health care. In addition, each state may also have privacy laws. Although there are separate laws for educational and medical records, their impact is the same in that education and medical legal rights shift from the parent to child when the child legally becomes an adult. In other words, parents who were once in charge may be excluded from important decisions and communications. While it is natural for this upcoming change to raise concerns, becoming aware of these changes and your rights will help you better prepare for the changes ahead. To help increase your awareness of privacy laws, this Fact Sheet contains frequently asked questions, a case example, and a listing of additional resources.
FREQUENTLY ASKED QUESTIONS
1. At what age will I no longer have legal access to my child’s education or medical records? It depends. Education rights under the Family Educational Rights and Privacy Act (1974) shift from the parent to the student when the student turns 18 years old or enters post-secondary education (at any age). Under the Individuals with Disabilities Education Act (1997), schools must inform parents of upcoming changes in student’s rights at least one year before the student with disabilities reaches the age of majority (i.e., legally becomes an adult). Medical rights shift from the parent to the child when the child individual reaches the age of majority (Health Information Portability and Privacy Act, 1996). In the United States, the age of majority varies by state. For most states, children are legally adults when they turn 18. In some states, children can legally become adults before age 18 if they get married, join the military, or graduate from high school. In other states, children do not legally become adults until age 21 (Grauschopf, 2012). Because children legally become adults at different ages in different states, it is important for parents find out the rules in their own state. After a child legally becomes an adult, a parent may not legally have access to postsecondary education information or housing records without the signed permission of their child.
- What if I still want to be involved in my child’s medical care? When your child legally becomes an adult, you no longer have the legal right to access their medical records or make health care decisions (US Department of Health and Human Services, 2006). However, this does not mean that you cannot be involved. Parents can continue to be involved as much as their child allows. While this can often be managed informally, certain types of involvement, such as talking with the medical team or having access to your child’s medical records, will require your child’s signed permission. For additional questions on how to remain involved in your child’s medical care, contact your child’s medical team.
- What if I my child is not able to manage their educational or medical care when they reach the age of majority? If have concerns that your child may not be able to manage their education or medical care due to mental or physical limitations, you may be able to keep legal rights on their behalf via Power of Attorney. A Power of Attorney gives someone the legal right to act on the behalf of another individual. To learn more about setting up a power of attorney, it is helpful to consult with a lawyer prior to your child reaching the age of majority (Legal Information Institute, 2014).
- How can we as a family prepare ourselves for this upcoming change in rights? Becoming aware of privacy laws and how they will apply to your family is an important first step in preparing for the change. Although each family’s approach for managing the change is different, it may be helpful to talk to your child’s medical team/school to find the best way to prepare yourself and your child for this change. In addition, gradually helping your child become more involved in their education and medical care will help prepare them for managing things on their own when they become adults.
Case Study: The Brown Family
Diana Brown is a 16 year-old White female with diabetes who will be reach the age of majority on her 18thbirthday. Mrs. Brown has been mostly in charge of Diana’s education plan and health care since Diana was diagnosed with diabetes at age 5. While at a recent diabetes clinic visit, Mrs. Brown and Diana met with the clinic’s social worker to talk about privacy laws that will affect how their family manages Diana’s health care and education when she turns 18.
The clinic social worker reviewed major points of the Health Information Portability and Accountability Act (1996) and the Family Educational Rights and Privacy Act (1974). She provided the Brown’s with a handout summarizing the changes that would occur as a result of Diana turning 18. During this discussion, Mrs. Brown worried about Diana’s ability to manage her diabetes on her own. Diana agreed that she was not ready to leave out her mother from her medical care. However, she also expressed interest in becoming more involved in her own care in order to prepare for turning 18 and moving away to college.
With the help of the clinic social worker, the Browns created a list of all of the things needed to manage Diana’s diabetes from a medical and educational standpoint. For each item on the list, the family said who was currently in charge of that task (i.e., Diana or Mrs. Brown). They also rated how hard it was to complete that task. Based on this exercise, the Brown’s developed a plan to help gradually transition responsibility for Diana’s care from Mrs. Brown to Diana. According to this plan, easier tasks would be the first transferred to Diana, with Mrs. Brown serving as a background support person. Mrs. Brown agreed to show Diana how to do more difficult tasks before asking her to try them on her own. Since Diana returns to clinic every 3 months, the family agreed to use part of each clinic visit to go over the transition plan and Diana’s progress managing her new responsibilities.
As Diana was over a year away from moving away to college, the family was provided with general resources on managing diabetes when at college. Once her college is known, she will be instructed on how to register herself with the office for disabilities and be provided with school-specific information including a list of endocrinologists in the area.
References
Grauschopf, S. (2012).Age of majority by state – What is age of majority in my state? Retrieved from:
Health Information Portability and Accountability Act (1996).Retrieved from:
Individuals with Disability Education Act Amendments of 1997 [IDEA]. (1997). Retrieved from:
Legal Information Institute. Power of Attorney. Retrieved from Cornell University Law School, Legal Information Institute website:
Nemours (2013). Becoming an adult: Legal and financial planning. Retrieved from:
Nemours (2013). Becoming an adult: Taking responsibility for your medical care. Retrieved from:
U.S. Department of Education (n.d.). Frequently asked questions about FERPA. Retrieved from:
U.S. Department of Health and Human Services (2006). Frequently Asked Questions: Personal Representatives and Minors. Retrieved from: 230.html