School Age Onset
Find information to support a young person experiencing SMI before graduating from high school.
What resources can help families whose loved ones develop SMI while still in school?
The onset of severe mental illness (SMI), usually marked by a first psychotic break, most commonly happens when a person is in their late teens or early twenties. From a treatment perspective, the importance of early intervention is the same whether a person is a minor or an adult. However, a family’s options for intervention may depend on whether the young person has reached their state’s legal age of consent, which could be 13-18, and whether they are still in school, including college.
Tip: Type the name of your state and “age of medical consent” into your browser to research your state’s legal threshold.
TAC’s advocacy work is focused on adults with SMI. However, given the importance of early and robust intervention, this resource offers helpful information and direction for families of impacted youth.
Some initial places to go for information, training, and services include:
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- SAMHSA Early Serious Mental Illness Treatment Locator: These evidence-based programs provide medication, therapy, family and peer support, assistance with education and employment and other services.
- Johnny’s Ambassadors: This parent-run website offers a list of treatment options for youth and young adults in facilities and programs that focus on early intervention for conditions that include psychosis, particularly when psychosis may be linked to cannabis use.
- NAMI Basics: The National Alliance on Mental illness provides an online version of this training for parents of children and youth and supports a list of local affiliates for in-person trainings.
- Child Mind Institute: This website offers evidence-based information about specific diagnoses and recommendations for care and support at home, in the community, and at school.
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When to seek intervention
Early signs that a young person may be shifting into psychosis can be alarming. A first psychotic break can include hallucinations, delusions, or behaviors that indicate a disconnect from reality. An experience of psychosis may indicate that the person is developing SMI — but not always. A medical evaluation is critical for figuring out what may be happening and how to help.
School services may be available
A young person still working their way toward a high-school diploma may receive support through the special education system if their mental illness is disabling. Disability related educational services can continue through age 21 for “transition age” students who need additional time and support to prepare for adulthood. By seeking a free educational evaluation from the school, families may be able to pursue school-based services.
In the provider world, serious emotional disturbance (SED) is sometimes used instead of SMI when talking about someone younger than 18 with a severe psychiatric condition. This may be due to a reluctance to label a person with a psychiatric diagnosis before adulthood. The important thing to know as a parent or loved one is that when you hear “severe emotional disturbance” or “SED” it’s a term that has significance under the law. Federal law specifically lists schizophrenia within its definitions for the special education eligibility category of Emotional Disturbance (ED). The ED category also might apply for a diagnosis of bipolar disorder, severe depression, an unspecified psychotic disorder, or something else that is serious and disabling.
Note that a medical diagnosis is only part of the information schools use to make determinations about eligibility and services. Families can seek help navigating school-based evaluations and services from the Center for Parent Information and Resources, which provides a list of parent centers across the United States.
Navigating treatment and HIPAA barriers
Families may encounter surprising barriers – even for minor children – if the young person is unable to understand that they are ill because of a common neurological symptom called anosognosia. If the young person’s unwillingness to engage in treatment is because of this brain-based condition, family may need to advocate strongly to help them access treatment against their objection. TAC’s guidance on seeking commitment may be useful if adapted to apply to state-specific laws about involuntary treatment for minors.
If the child is at the age of medical consent, ask the provider about requirements related to releasing information and request a release of information form if one is needed for you to participate in care planning. Information sharing may vary depending on the treatment needs as well as the age of the child. For example, some providers will talk more openly about mental health care than substance use disorder treatment.
If a provider shuts you out because of concerns related to confidentiality, look for ways to learn and collaborate that don’t require them to share the full medical record or disclose specific medical details. For example, parents can ask for general information about a diagnosis or tips for managing a certain range of symptoms in the home. You can request general information about how certain substances might worsen psychiatric symptoms or interfere with medications.
If there are concerns related to safety, including because of risks for self-harm and/or suicide, providers may use professional discretion when sharing information with caregivers. The U.S. Department of Health and Human Services (HHS) provides a 13-page question-and-answer handout with specific information about permitted disclosures related to mental health. Included is this statement: “In recognition of the integral role that family and friends play in a patient’s health care, the HIPAA Privacy Rule allows these routine – and often critical – communications between health care providers and these persons.”
Note that you can—and should—share mental health history and your observations with a provider. TAC provides a resource to help you write a concise mental health history. TAC also provides additional information to help caregivers navigate HIPAA.
Finding ways to partner with the young person you care for will be helpful. In general, learn to ask questions to gain trust and build a partnership. TAC provides additional communication tips and places to seek further training.
Plan ahead for a young person who may be eligible for disability benefits
If a severe and persistent psychiatric condition affects a person’s ability to learn or work, they may be eligible for Social Security disability benefits and public health insurance. Note that there is a special designation for individuals whose disability begins before the age of 22. A disabled adult child (DAC) may be eligible for benefits if their parent is deceased or starts to receive retirement or disability benefits. The benefit for the DAC is tied to the parent’s Social Security earnings record. To qualify the DAC must be unmarried, 18 years of age or older, have a qualified disability that started before age 22, and meet the definition of disability for adults.
What support does my loved one have a right to?
A mental illness can make a person eligible for federal disability protections if it is shown to substantially limit any major life activity (learning, working, managing self-care, etc.). Disability rights apply regardless of the nature or severity of a condition.
Disability rights are upheld by the federal Office for Civil Rights (OCR) and the U.S. Department of Justice. Those protections support a person’s right to be accommodated and supported in order to access what is publicly available (school or vocational rehabilitation, for example).
Two laws support the civil rights of a person with any significant disability condition:
These laws include protections for people who use coping strategies, medication, or other “mitigating measures” to function as best they can despite their disability-related conditions. Mitigating measures may not be used as a reason to deny a request for evaluation. More information is searchable on a U.S. Department of Education website page of questions and answers about the ADA Amendments Act of 2008.
A public-school student is evaluated to determine eligibility for these protections and to collect data about what accommodations they need to access their right to a free appropriate public education (FAPE). A Section 504 Plan is written to provide FAPE with accommodations. An Individualized Education Program (IEP) provides additional service and placement options to ensure FAPE.
What is the school-to-prison pipeline?
Schools are responsible to protect student civil rights in the ways they manage absences and administer discipline. In July 2022, the Office for Civil Rights published guidance about non-discriminatory use of student discipline to clarify that schools have a responsibility to prioritize help over discipline for students who struggle with behavior related to their disability. Stopping disciplinary practices that feed the school-to-prison pipeline is a step toward ending criminalization of illness.
A student with an IEP is protected by the Individuals with Disabilities Education Act (IDEA)—the law that governs the IEP process. Schools are responsible to serve students in the least restrictive environment (LRE) that meets their needs. For example, a student with schizophrenia would need to be individually evaluated and an IEP team would make placement decisions.
After a student graduates or leaves the public school system, their school paperwork can support conversations about accommodations in higher education or at work. How and whether to disclose information about a mental illness condition is personal. Consulting staff at a public office of vocational rehabilitation or within a special services office at a college or trade school is a place to begin.
Families can reach out to a parent center in their state for individualized guidance about navigating special education services and upholding their student’s rights. The Center for Parent Information and Resources maintains a website, parentcenterhub.org, that provides a list of parent centers across the country.