Family Guide to Systems of Care for Children With Mental Health Needs

Caring for Every Child’s Mental Health Campaign is a national public education initiative emphasizing attention to children’s and adolescents’ mental health. It supports the Comprehensive Community Mental Health Services for Children and Their Families Program, in place in communities across the Nation, which is demonstrating the effectiveness of systems of care in meeting the services needs and improving the lives of children with serious emotional disturbances (SEDs) and their families. This campaign is managed by the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services. The guide is intended to help parents and caregivers seek help for children with mental health needs. Information is provided on what parents and caregivers need to know, ask, expect, and do to get the most out of their experience with systems of care.

For information about child and adolescent mental health, contact:

SAMHSA’s National Mental Health Information Center
P.O. Box 42490
Washington , DC 20015
Toll-free: 1.800.789.2647 (English/Spanish)
TDD: 1.866.889.2647
mentalhealth.samhsa.gov

About the Family Guide

This bilingual family guide was first printed in December 1998 with the support of the Child, Adolescent and Family Branch of the Center for Mental Health Services, part of the Substance Abuse and Mental Health Services Administration. One of the most popular print publications of the Caring for Every Child’s Mental Health Campaign, the Family Guide is intended to inform caregivers and families about how to seek help for children with mental health problems. Information is provided on what caregivers and families need to know, ask, expect, and do to get the most out of their experience with systems of care.

The content and format of the guide was determined by families from across the country, and it was written by a diverse team of experts led by the Federation of Families for Children’s Mental Health. The initial text for the guide was developed by Families and Communities Equal Success of Stark County, OH. Rhode Island Parent Support Network of Warwick, RI, field-tested the guide’s content, relevance, usefulness, and format.

The Spanish version of the guide was initially adapted by a contractor to the Federation of Families and was reviewed for readability and cultural relevance by staff from Roxbury Unites for Families and Children, Inc. of Massachusetts; Parents for Behaviorally Different Children of New Mexico; and Abriendo Puertas of Florida.

In 2005, the guide was updated to reflect the current state of the science in mental health service delivery, as well as to ensure that it supports the recommendations called for in the report of the President’s New Freedom Commission on Mental Health.

You may have decided to read this guide because you are concerned that your child needs help getting along with others, controlling his or her behavior, or expressing emotions. Depending on your child’s needs and your family’s situation, you might look for help from schools, health clinics or hospitals, health insurance providers, community mental health centers, social service programs, and, possibly, the courts. When different agencies work together and include you and your family as a team, this is the beginning of developing a system of care.

Working with several different providers can be confusing, even overwhelming, unless they partner with you as a team to focus on your goals, strengths, and needs. In a system of care, each family defines its own strengths, the things it wants to change, and the kinds of help and support needed to reach the family’s goals.

Families who have received help from systems of care participated with the Federation of Families for Children’s Mental Health in creating this guide. In seeking appropriate care for their children, family members reported having felt overwhelmed, alone, intimidated, or even blamed. They found strength by sharing their experiences with other families. They have used their experiences to help develop this guide. This guide can help you figure out:

• What you need to know
• What questions to ask
• What you can expect
• What you can do

Some words in this guide are printed in italics; these words are defined in the Glossary (page 21).

The words “you” and “your” in this guide refer to family members and others who are raising a child with a behavioral or emotional disturbance.

Finding Services for Your Child

Get help early. If you have concerns about your child’s behavior or emotions, tell your doctors, teachers, counselors, social workers, spiritual advisers, friends, and relatives who know about child and adolescent development and mental health. Ask for their help to find out what the problem is and where to get services.

Explore all options available to meet your child’s and family’s needs. Check your library, the health department, and the social service section of the telephone book for places that might offer the kinds of help you are looking for. A large amount of information can be found on the Internet. Many family-run organizations have resource centers and advocates or mentors who know about available services and whether a system of care is being developed in your community.

What you need to know

You are the expert when it comes to your child. You know your child better than anyone else. You know:

• How your child responds to different situations
• Your child’s strengths and needs
• What your child likes and dislikes
• What has worked to help your child
• What has not worked

You are the person who decides what services and supports your child and family will receive.

Include your child in the decisionmaking process. Your child needs to understand what is going on in order to actively participate in his or her care.

Every child is different, yet there are children similar to yours. You are not alone. Other families have faced similar problems, shared the same experiences, and are willing to help you.

What to ask

• What do I need to know and to do to help my child?
• What agencies in the community have programs or services that can help my child and other members of my family? How do I get services from them?
• How will my child’s health, growth and development, social interaction, and ability to learn be affected by the problems we face?
• What has helped other children like mine?

What you can expect

• You will hear and learn many new words and technical terms. Ask for definitions and explanations.
• Because systems of care are youth-guided and family-driven, your entire family may be asked to participate in the services you are offered.
• There may be waiting lists for some services. Find out how to get some help while you are waiting for a particular service.

What you can do

Gather all the information you have about your child. Keep track of everything and start a notebook or file to organize: