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From High School to Higher Ed: Shifting Roles and Rights for Parents of Students with Disabilities

For parents who have been deeply involved in their child's education and managing any disabilities or special needs, it can be a jarring transition when that child turns 18 and legally becomes an adult. This transition often raises questions for parents about their involvement and rights concerning their child's educational records and health information, particularly for students with disabilities attending college. Let's delve into how these rights shift and what it means for communication between college disabilities offices and parents.



What rights change when a student turns 18?

Under the Family Educational Rights and Privacy Act (FERPA), when a student turns 18 or attends a postsecondary institution at any age, they become an "eligible student," and all rights previously held by the parents under FERPA transfer to the student, preventing colleges and universities from sharing any information from a student's educational records with anyone - including parents - without the student's consent. This applies to grades, attendance records, class schedules, and any other protected information.


What does FERPA mean for communication with disability offices?

College disability offices ensure students with disabilities receive proper accommodations. However, FERPA restricts these offices from sharing any information about a student's disability, approved accommodations, or academic records with parents. This policy protects student privacy and promotes independence in managing their education.


How can I stay informed about my student's progress?

Since FERPA prevents parents from obtaining academic information directly from the school, the best way to learn about your student's grades and status is to ask them directly. Families should discuss expectations and decide how much the student wishes to share. Rather than a barrier, this can facilitate important discussions about responsibilities. Colleges and universities also have release forms students can sign, granting specific permissions for the disability office to share information with parents. The scope of this release is up to the student - they may allow general status updates, or a more comprehensive academic profile to be shared.


If a student signs a FERPA waiver, will their information automatically be shared with me?

No, a signed FERPA waiver simply allows the college to release information to parents if requested. Parents would still need to specifically request grades or other records - they won't automatically be sent. It is important to note that colleges have varying policies on actually releasing this information to parents when allowed, so parents and students need to speak directly with the learning disabilities office at the college to find out what their policy is.


What happens with HIPAA when my student turns 18?

Similar to FERPA's regulations on educational records, the Health Insurance Portability and Accountability Act (HIPAA) governs the privacy of health information. Once a child turns 18, parents do not have automatic access to their child's health records, including information related to disabilities unless the child provides consent or other specific circumstances apply. This regulation ensures the confidentiality of the student's health information, encouraging them to take responsibility for their healthcare decisions.


How can I stay involved and informed?

So what level of parental communication can you expect with the disability services office after your child turns 18? The bottom line is - very little, if any, direct communication without explicit approval from your student each semester. Once enrolled, the student becomes the sole owner of their disability information and accommodation plan. That said, colleges do encourage open conversations between students and parents. 


Discuss Consent

Before the student starts college, have a discussion about their preferences for parental involvement and what information they are comfortable sharing. Establish a mutual understanding and respect for boundaries. Parents and students can have a conversation about the benefits of sharing certain information, especially related to disabilities and accommodations, to ensure a supportive home environment.


Encourage Self-Advocacy

Parents can support their children in developing the ability to communicate their needs, understand their rights, and advocate for themselves effectively with the disability office and professors.


Release Forms

Utilize release forms judiciously. If the student wishes to share information with parents, have them complete the necessary release forms with the disability office and update them regularly. If the student signs a FERPA release form, you may be able to receive information about your student’s progress by contacting the learning disabilities office, but the policy of the schools vary and scope of this release is up to the student - they may allow general status updates, or a more comprehensive academic profile to be shared. With a digital or paper copy of a universal HIPAA release form, college students can designate a parent or both parents as trusted individuals who can access their medical information. It can be particularly helpful for parents to have access to medical records if a college student needs help managing a chronic condition or if they experience an acute flare-up at a university far from home. In such instances, having access to relevant medical information can enable parents to provide informed support and make informed decisions, ensuring their child receives the best possible care.


Understand the Boundaries

Recognizing the legal boundaries regarding privacy can help parents respect their child's autonomy while finding ways to be supportive.


Open Lines of Communication

Even without direct access to records, parents can continue to support their child by maintaining open lines of communication and encouraging them to share updates and concerns as appropriate.


Embracing the Transition

In summary, the changing laws and FERPA regulations can be frustrating for college parents who feel they need and should have access to their student's information. However, it's important to remember that college students are working towards increased independence and responsibility. Allowing them to determine who receives their academic information is a part of that growing independence. Open communication between parents and students is crucial during this transition to ensure a smooth experience for everyone.


Resources:

  1. U.S. Department of Education's FERPA guidance: https://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html

  2. U.S. Department of Health & Human Services' HIPAA guidance: https://www.hhs.gov/hipaa/index.html

  3. National Center for College Students with Disabilities: https://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html

  4. Learning Disability Association of America: https://ldaamerica.org/


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