Helping Children and Youth With Attention-Deficit/Hyperactivity Disorder: Systems of Care

Helping Children and Youth With Attention-Deficit/Hyperactivity Disorder: Systems of Care

This fact sheet provides basic information on attention-deficit/hyperactivity disorder (ADHD) 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.

In a classroom of 30 children or youth, it is likely that at least two students are affected by ADHD. This surprisingly common condition makes it hard for children and youth to control their behavior (sit still, think before speaking or acting, etc.) and/or to pay attention. If left untreated, it can lead to school or job difficulties, depression, relationship problems, and substance abuse.

What Is ADHD?
There are three types of ADHD: the hyperactive-impulsive type, the inattentive type, and a type that is a combination of both. The severity of ADHD varies among children, even siblings, so no two children will have exactly the same symptoms. Also, you may hear that girls have lower rates and less severe cases of the disorder than boys. More research is needed on this subject, but girls may have lower rates of the hyperactive type.

Signs of the hyperactive and inattentive types are as follows:

Hyperactive-Impulsive

Feeling restless, often fidgeting with hands or feet, or squirming while seated;
Running, climbing, or getting up in situations where sitting or quiet behavior is expected;
Blurting out answers before hearing the whole question; and
Having difficulty waiting in line or taking turns.
Inattentive

May appear to not be listening or seems easily distracted by irrelevant sights and sounds;
Often failing to pay attention to details, and making careless mistakes;
Rarely following instructions carefully, and often losing or forgetting things like toys, pencils, books, or other tools needed for a task; and
Often skipping from one uncompleted activity to another.
Experts believe that in some cases, heredity plays a role in whether or not a child has ADHD. Symptoms of ADHD are first seen in children before age 6 and may cause problems at home, at school, or in relationships. Sometimes, it is hard to tell if a child has ADHD because symptoms can be mistaken for typical childhood behaviors or other mental health issues, and ADHD often occurs at the same time that other conditions are present. Equally important are 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. Misperceptions and misunderstandings can lead to delayed diagnoses, misdiagnoses, or no diagnoses—which are serious problems when a child needs help. That is why only qualified health care or mental health care providers can diagnose ADHD, and why it is important that supports be in place to bridge differences in language and culture.

What Happens After an ADHD Diagnosis?
If a qualified health care or mental health care provider has diagnosed your child with ADHD, he or she may suggest several different treatment options, including a combination of strategies for managing behaviors, medications, and talk therapy. Your child’s health care or mental health care provider may also suggest enrolling in a system of care, if one is available.

More information about ADHD, including common treatments, is available from your health care or mental health care providers. A list of resources on ADHD is on the back of this fact sheet.

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—as well as 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.
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 ADHD reflect the following:

Children and youth demonstrate improvement in emotional and behavioral functioning.
Children and youth with ADHD have fewer contacts with the juvenile justice system after enrolling in a system of care.
Children and youth with ADHD improve in school-related tasks, such as paying attention in class, taking notes, and completing assignments on time.
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.
Timothy’s Story

Timothy is a 19-year-old college student studying to be an auto technician. Like other young men his age, he enjoys cars, sports, and video games. His mother, Alice, described him as caring, family-oriented, a loyal friend, and a hard worker. She added that Timothy copes with attention-deficit/hyperactivity disorder (ADHD), depression, learning disabilities, and alcoholism.

Timothy was diagnosed with ADHD at age 15 while he was being treated in a residential facility for alcohol use. Before then, he had a history of school difficulties and other kinds of trouble. Alice said that, in retrospect, the ADHD diagnosis explains a lot of past behaviors that she once thought were part of being a typical teenager. She also recognized similarities with things she experienced in her own life—Timothy’s ADHD diagnosis led Alice to be screened, and she learned that she has ADHD, too.

Alice first learned about her system of care at Timothy’s high school back-to-school fair. After reading through some of the system of care’s informational materials, she contacted them to enroll Timothy. Once he was enrolled in the system of care, Timothy started to receive a wide range of services to give him the tools needed to cope with his challenges.

The system of care’s care coordinator worked closely with Timothy and Alice to identify services and supports that could help Timothy in the short and long term. For instance, they worked closely with his psychiatrist, other therapists, and his school, while connecting Timothy with supports that would help him develop life skills for the future.

One support was a program for youth considered to be “at-risk” that Timothy attended twice a week. In addition to helping him with homework, the program helped him learn how to manage his behaviors and live more productively. For instance, through the program, Timothy participated in community service activities, which helped him build pride in his achievements while showing him the value in helping others. The families of youth in the program also met once a month to provide feedback to program leaders on what was and was not working. In addition to this program, Timothy was involved in a youth mentorship program. A youth mentor regularly visited Timothy to offer advice, to serve as a role model, and to just be there for him.

In reference to Timothy’s individualized care plan developed through the system of care, Alice said that “each piece did its part because when you are talking about the big picture, no one service could treat the whole situation.”

Alice also said that while Timothy has made great strides, he still faces challenges, such as the stigma associated with mental health needs. When Timothy enrolled in college, he did not seek out all of the supports and programs he could have.

“I guess because he is a young adult now,” she said, “he’s tired of being associated with being the kid who is always being put in alternative programs—being the kid with mental health issues.”

By working with the system of care, Alice has learned that coping with these disorders is a process, and she remains optimistic even when Timothy experiences setbacks. Alice said, “If school doesn’t work out, then we will come up with something else.”

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.

For More Information
Federal Government Resources

National Mental Health Information Center
Substance Abuse and Mental Health Services Administration
mentalhealth.samhsa.gov
Tel: 1.800.789.2647 (toll-free; English/Spanish)
TDD: 1.866.889.2647

National Institute of Mental Health
National Institutes of Health
www.nimh.nih.gov
Tel: 1.866.615.6464 (toll-free; English/Spanish)
TTY: 301.443.8431

Additional Resources

Following are some other resources that may be helpful. This list is not exhaustive, and inclusion does not imply endorsement by the Substance Abuse and Mental Health Services Administration or the U.S. Department of Health and Human Services.

Children and Adults With Attention-Deficit/Hyperactivity Disorder
www.chadd.org
Tel: 301.306.7070

Federation of Families for Children’s Mental Health
www.ffcmh.org
Tel: 703.684.7710

NAMI (National Alliance on Mental Illness)
www.nami.org
Tel: 1.800.950.6264 (toll-free)

National Mental Health Association
www.nmha.org
Tel: 1.800.969.6642 (toll-free)

National Resource Center on AD/HD
www.help4adhd.org
Tel: 1.800.233.4050 (toll-free)

For information about children’s mental health contact the National Mental Health Information Center toll-free: 1.800.789.2647 (English/Spanish)1.866.889.2647 (TDD)