Perkins School for the Blind Transition Center

The Critical Role of a Caregiver in Navigating Systems of Care

No one knows your child better than you. When it comes to understanding their unique needs – you are the expert. This is critical for parents and caregivers of children with emotional, behavioral, and cognitive differences. Whether you are navigating systems of care, identifying areas of concern, or advocating for additional testing, services, or supports – you play a crucial role in your child’s life.

Mother and son with healthcare provider

For many families, navigating systems of care can be challenging. The systems are divided into the following categories:

  1. Medical
  2. Education
  3. Behavioral Health
  4. Intellectual Disabilities

Each system has a separate funding stream with distinct goals for your child. In addition, the systems are siloed, which means they typically do not communicate with each other or speak the same “language” (they use different words and acronyms).

While all of this can be overwhelming, especially if you are just beginning your journey into the world of disabilities, there are steps you can take to make these systems work for you.


Get to know your child’s doctors and ask a lot of questions. Bring your list of questions (and any other documentation that will help you tell your child’s story) to the appointment. This will set the tone for future appointments.

You should also acquaint yourself with the nurses and other staff when possible. Often, these individuals know the ins and outs of their practice or hospital and the best appointment times, and they can offer specialist recommendations. Once your child is a patient in a provider’s system, you may have easier access and shorter wait times to see specialists.

Also, if your child has a disability diagnosis, they may qualify for state and federal medical funding through various medical assistance programs. Check your state’s human services website for more information.

Behavioral Health

While you may believe medical and behavioral health are connected, these care systems are typically separate. As a parent or caregiver, it is your job to make the connection between your child’s physicians and clinical team members about how their roles intertwine.

Often, in-home therapeutic services and school-based behavioral services collect data which, when shared by you, can help the medical doctor understand what behaviors are of concern, and influence other areas, such as medication prescribing or treatment recommendations.

Once enrolled in the behavioral health care system, more doors open to support your child, typically through local or state resources. If you are not in the system, you will not be aware of them. You can learn more about the behavioral health system and your state’s benefits through their Medicaid website.

When receiving behavioral health services, your child will have a treatment team consisting of a child and adolescent psychiatrist, a psychologist, a social worker, and perhaps a psychiatric nurse. The treatment team will consider a variety of treatments and interventions as they evaluate your child. Ensure you participate in treatment team meetings and are forthcoming about your child’s challenges. It is well-documented that family engagement is essential to a child’s successful outcomes.


The education system is incredibly important to the well-being and success of all our children. The Individuals with Disabilities Education Act specifies that children with disabilities are entitled to a Free and Appropriate Public Education (FAPE), which may or may not look like the standard education program in your area.

FAPE requires schools to provide special education programming to meet the unique needs of each child. While you are not required to disclose medical information to your child’s school, it can be helpful when advocating for services or accommodations to be made and documented in your child’s individualized education program.

As a parent or caregiver, you are an equal partner with your child’s school team and should be an active participant. For more information on educational rights, vocabulary, and other specifics, visit

Intellectual Disabilities

If your loved one has an IQ test score of 70 or below and demonstrates difficulties in learning, problem-solving, memory, and speaking, they likely will qualify for your state’s intellectual disability system.

Many clinicians can diagnose intellectual disabilities, including, but not limited to, developmental pediatricians, psychologists (school and clinical), psychiatrists, neurologists, and trained pediatricians and nurse practitioners. The general rule of thumb is children under the age of 5 who show symptoms of an intellectual disability are diagnosed with “global developmental delay” until they can be tested with fidelity by a trained professional. Having an intellectual disability diagnosis allows your child access to special education services, home and community-based Medicaid waiver services, and Social Security Administration benefits, all of which can be crucial to their future and are not necessarily available unless you have an official diagnosis.

Remember, as a parent or caregiver, you are a primary player in navigating systems of care, and only you can provide the true expertise on your child.

Amy Kelly, MBA, MNM, is the mother to Danny, Annie and Ryan. Annie is diagnosed with moderate to severe autism, verbal apraxia, intellectual and developmental disabilities, and general anxiety disorder. Amy is the National Director of Family Engagement for Devereux Advanced Behavioral Health, one of the nation’s oldest and largest nonprofit providers of behavioral healthcare. She serves as a family representative on several special needs boards in the community, locally and nationally. In addition, she participates with other patients and families in efforts supported by the Autism Care Network and serves on an executive committee for the American Academy of Pediatrics to assist children and adolescents with special needs and the importance of quality care.

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