Helping Children and Youth With Bipolar Disorder: Systems of Care
This fact sheet provides basic information on bipolar disorder in children and describes an approach to getting services and supports, called “systems of care,” that helps children, youth, and families thrive at home, in school, in the community, and throughout life.
What Is Bipolar Disorder?
Bipolar disorder is a brain disorder that causes persistent, overwhelming, and uncontrollable changes in moods, activities, thoughts, and behaviors. A child has a much greater chance of having bipolar disorder if there is a family history of the disorder or depression. This means that parents cannot choose whether or not their children will have bipolar disorder.
Although bipolar disorder affects at least 750,000 children in the United States 1 , it is often difficult to recognize and diagnose in children. If left untreated, the disorder puts a child at risk for school failure, drug abuse, and suicide. That is why it is important that you seek the advice of a qualified professional when trying to find out if your child has bipolar disorder.
Symptoms of bipolar disorder can be mistaken for other medical/mental health conditions, and children with bipolar disorder can have other mental health needs at the same time. Other disorders that can occur at the same time as bipolar disorder include, but are not limited to, attention-deficit/hyperactivity disorder, conduct disorder, oppositional defiant disorder, anxiety disorders, autistic spectrum disorders, and drug abuse disorders. The roles that a family’s culture and language play in how causes and symptoms are perceived and then described to a mental health care provider are important, too. Misperceptions and misunderstandings can lead to delayed diagnoses, misdiagnoses, or no diagnoses—which are serious problems when a child needs help. That is why it is important that supports be in place to bridge differences in language and culture. Once bipolar disorder is properly diagnosed, treatment can begin to help children and adolescents with bipolar disorder live productive and fulfilling lives.
What Are the Signs of Bipolar Disorder?
Unlike some health problems where different people experience the same symptoms, children experience bipolar disorder differently. Often, children with the illness experience mood swings that alternate, or cycle, between periods of “highs” and “lows,” called “mania” and “depression,” with varying moods in between. These cycles can happen much more rapidly than in adults, sometimes occurring many times within a day. Mental health experts differ in their interpretation of what symptoms children experience. The following are commonly reported signs of bipolar disorder:
Excessively elevated moods alternating with periods of depressed or irritable moods;
Periods of high, goal-directed activity, and/or physical agitation;
Racing thoughts and speaking very fast;
Unusual/erratic sleep patterns and/or a decreased need for sleep;
Difficulty settling as babies;
Severe temper tantrums, sometimes called “rages”;
Excessive involvement in pleasurable activities, daredevil behavior, and/or grandiose, “super-confident” thinking and behaviors;
Impulsivity and/or distractibility;
Inappropriate sexual activity, even at very young ages;
Hallucinations and/or delusions;
Suicidal thoughts and/or talks of killing self; and
Inflexible, oppositional/defiant, and extremely irritable behavior.
What Happens After a Bipolar Disorder Diagnosis?
If a qualified mental health provider has diagnosed your child with bipolar disorder, the provider may suggest several different treatment options, including strategies for managing behaviors, medications, and/or talk therapy. Your child’s mental health care provider may also suggest enrolling in a system of care, if one is available.
What Is a System of Care?
A system of care is a coordinated network of community-based services and supports that are organized to meet the challenges of children and youth with serious mental health needs and their families. Families, children, and youth work in partnership with public and private organizations so services and supports are effective, build on the strengths of individuals, and address each person’s cultural and linguistic needs. Specifically, a system of care can help by:
Tailoring services to the unique needs of your child and family;
Making services and supports available in your language and connecting you with professionals who respect your values and beliefs;
Encouraging you and your child to play as much of a role in the design of a treatment plan as you want; and
Providing services from within your community, whenever possible.
How Can I Find a System of Care for My Child With Bipolar Disorder?
Contact the system of care community in the box on the back of this fact sheet. If none is listed or that system of care community is not in your area, visit mentalhealth.samhsa.gov/cmhs and click “Child, Adolescent & Family” and then “Systems of Care” to locate a system of care close to you. If you prefer to speak to someone in person to locate a system of care, or if there is not a system of care in your area, contact the National Mental Health Information Center by calling toll-free 1.800.789.2647 or visiting mentalhealth.samhsa.gov.
Are Systems of Care Effective?
National data collected for more than a decade support what families in systems of care have been saying: Systems of care work. Data from systems of care related to children and youth with bipolar disorder reflect the following:
Children and youth demonstrate improvement in emotional and behavioral functioning.
Caregivers report that children and youth have a reduction in conflicts with others in the family.
Caregivers experience an increased ability to do their jobs.
Caregivers report fewer missed days and a reduction in tardiness from work.
Children and youth with bipolar disorder improve in school-related tasks, such as paying attention in class, taking notes, and completing assignments on time.
Children and youth with bipolar disorder have fewer contacts with the juvenile justice system after enrolling in a system of care.
The Core Values of Systems of Care
Although systems of care may be different for each community, all share three core values. These values play an important role in ensuring that services and supports are effective and responsive to the needs of each child, youth, and family. These core values are:
Systems of care are family-driven and youth-guided.
Systems of care are culturally and linguistically competent.
Systems of care are community-based.
Austin’s Story
At age 12, Austin appears to be a typical sixth grader—he likes to play basketball and video games, and is enrolled in an after-school horseback riding program. He is an honor roll student, and his mother describes him as compassionate, loyal, and a champion for the “underdog.” Austin and his family also manage the challenges of bipolar disorder each day.
Austin was diagnosed in first grade with attention-deficit/hyperactivity disorder and separation anxiety disorder, but Austin’s mother, Kim, recalls a series of incidents that led her to question whether her son’s mental health needs were being met. At age 9, Austin set two fires within a week. The first time it happened, Kim thought it was an isolated incident that would not be repeated— Austin said he was lighting candles.
The second time Austin set a fire, however, the situation was very different. While bringing groceries into the house, Austin set a small fire in the car. When Kim discovered signs of the fire the next morning, she says, “I immediately got on the phone and started calling his physician. Thoughts were flashing through my mind about what could have happened.”
After Kim received a referral from Austin’s physician for diagnostic testing and other mental health services, she learned that her son had been experiencing hallucinations, which were causing him to set the fires. She also learned that his extreme mood swings, as well as his unusual sleep patterns, were signs of bipolar disorder. As a result, Austin was hospitalized for 20 days and diagnosed with bipolar disorder. During this time, Austin was accepted into a system of care through a referral from his school guidance counselor.
Kim says the system of care played an important role in helping Austin make the transition from the hospital to his home—even providing transportation, as Kim’s car was being repaired at the time. System of care staff helped Kim learn more about her son’s disorder. They also helped her locate services and supports tailored to Austin’s needs, including counseling, health care, specialized schooling, after-school programs, transportation, and child care.
The system of care also empowered Kim to be a more effective advocate for Austin’s needs. Before joining the system of care, she says, “I tried to fit the service to the need, rather than fit the need to the service. That was a mistake.”
Kim also assumed that professionals were best able to determine how to meet her child’s needs. After working in partnership with the system of care, Kim now knows that services and supports should be responsive to Austin’s needs and that her and her son’s input into the services and supports is crucial.
Despite the successes her family has had, Kim emphasizes that the journey to wellness is not over. In addition to coping with the symptoms of bipolar disorder, she and Austin also must overcome the stigma associated with mental illnesses. Together, Kim and Austin counter this stigma by educating others that he, and others with mental illnesses, should be known for who they are rather than the disorders they happen to have. Despite the ongoing challenges of stigma and bipolar disorder, Kim believes that the system of care has made a huge difference in terms of helping her family move forward.
What Steps Are Necessary To Enroll in a System of Care?
Although each community’s system of care is different, most children and youth in a system of care go through the following steps to be enrolled:
Step One: Diagnosis and Referral—To be considered for system of care enrollment, your child must have a diagnosed behavioral, emotional, or mental health disorder that severely affects his or her life. Additionally, most children and youth are referred to a system of care by mental health providers, educators, juvenile justice professionals, child welfare professionals, physicians, and others who might already be serving your child.
Step Two: Assessment and Intake—Once your child has been diagnosed and has been referred to the system of care, the system of care may ask you to answer some questions that will help you determine whether or not your child and family are eligible to receive services and supports. If your child and family are eligible, you may have to answer more questions so the system of care can begin to understand your needs. Throughout these steps, the system of care will work with you to fill out all of the necessary paperwork.
Step Three: Care Planning and Partnership Building—After your child and family are enrolled, the system of care will work with you to determine what services and supports best fit your child’s and family’s needs. Once the care planning is complete, the system of care will develop partnerships among you and all of those who are helping your child and family to ensure that services and supports are as effective as possible.
