SAMHSA's National Mental Health Information Center

This Web site is a component of the SAMHSA Health Information Network

  | | |      
Search
In This Section

Online Publications

Order Publications

National Library of Medicine

National Academies Press

Publications Homepage

Page Options
printer icon printer friendly page

e-mail icon e-mail this page

bookmark icon bookmark this page

shopping cart icon shopping cart

account icon  current or new account

This Web site is a component of the SAMHSA Health Information Network.


skip navigation

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

Spanish Version

CARING FOR EVERY CHILD’S MENTAL HEALTH: Communities Together is a national public education initiative emphasizing the need for attention to children’s and adolescents’ mental health. It supports the Comprehensive Community Mental Health Services Program for Children and Their Families in approximately 40 sites in about 25 States demonstrating effective systems of care. This public/private sector campaign is managed by the Child, Adolescent and Family Branch, Center for Mental Health Services, Substance Abuse and Mental Health Services Administration.

For information about child and adolescent mental health, contact the:

National Mental Health Information Center
P.O. Box 42557, Washington, D.C. 20015
Toll-free 1.800.789.2647    Fax 301.984.8796
(TDD) 301.443.9006
mentalhealth.samhsa.gov/child

Values and Principle of Systems of Care

Core Values – systems of care are:

  •   child-centered, family focused, and family driven;
  •   community-based; and
  •   culturally competent and responsive.

Principles – systems of care provide for:

  •   service coordination or case management;
  •   prevention and early identification and intervention;
  •   smooth transitions among agencies, providers, and to the adult service system;
  •   human rights protection and advocacy;
  •   nondiscrimination in access to services;
  •   a comprehensive array of services;
  •   individualized service planning;
  •   services in the least restrictive environment;
  •   family participation in ALL aspects of planning, service delivery, and evaluation; and
  •   integrated services with coordinated planning across the child-serving systems.

How This Guide Was Developed

This bilingual family Guide was developed with the support of the Child, Adolescent and Family Branch of the Center for Mental Health Services CARING FOR EVERY CHILD’S MENTAL HEALTH: Communities Together Campaign, a national initiative to promote mental wellbeing in children. The Guide is intended to assist parents and caregivers about how to seek help for children with mental health problems. Information is provided on what they need to know, ask, expect, and do to get the most out of their experience with systems of care.

Families across the country determined the content and format of this Guide. It was written by diverse teams, working under the leadership of Trina W. Osher, Coordinator of Policy & Research for the Federation of Families for Children’s Mental Health, in Virginia.

F.A.C.E.S. (Families and Communities Equal Success) of Stark County in Canton, Ohio, following an outline provided by the Federation, wrote the initial content for the Guide. The team assembled to write the document included:

Janice Dougherty
Pam Harris
Janet Hawes
Rick Shepler
Canice Tolin
Connie Truman

A field test, involving culturally diverse families, was conducted by the Rhode Island Parent Support Network in Warwick. The field team commented on the content, relevance, usefulness, and format of the Guide and included:

Michelle Bekasi
Cathy Boudreau
Linda Bryan
Cathy Ciano
Lisa Conlon
Gail Forcier
Josefina Guzman
Connie Hammond
Ann Nkwocha
Diane Pavassini
Brenda Serrano
Emanuel Simas

Margarita Montalvo (contractor to the Federation of Families for Children’s Mental Health) translated the final English text of the Guide into Spanish.

The Spanish version was reviewed for readability and cultural relevance by Carmen Pola of Roxbury Unites for Families and Children, Inc. in Massachusetts; Delfy Peña Roach of Parents for Behaviorally Different Children in New Mexico; and Myriam Serna of Abriendo Puertas in Florida.

The Center for Mental Health Services, Child, Adolescent and Family Branch, sincerely thanks all whose contributions made the publication of this bilingual Family Guide possible. Their varied perspectives and insights strengthened the final product. Readers of this Guide will benefit from their collective wisdom and experiences.

If you are reading this Guide, you already suspect or know that your child needs help getting along with others, controlling 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, community mental health centers, social services, and possibly the courts. When different agencies work together (not in isolation) including you and your family as a team, they are a working as a system of care.

Working with several different providers can be confusing and 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 kind of help and support it needs to reach its goals.

Families, who have received help from systems of care, helped write this Guide. At times they felt overwhelmed and alone as well as intimidated or blamed. They found strength from talking with other families who shared their experience. They have used their experience to explain the steps and help you figure out:

  •   what you need to know;
  •   what questions to ask;
  •   what you can expect; and
  •   what you can do.

Some words in this Guide are printed in italics; these words are defined in the glossary.

The words ‘you’ and ‘your’ in this Guide refer to parents and others who are raising a child with a behavioral or emotional problem.

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 advisors, friends, and relatives who know about child development and mental health. Ask for their help in finding out what the problem is and where to get services.

Explore all options available to meet your child 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 kind of help you are looking for. There is a lot of information on the Internet and many family run organizations have resource centers and advocates or mentors who know about available services, and if there is a system of care developing 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; and
  •   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 decision-making process. Your child needs to understand what is going on in order to participate in services.

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 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 family focused, 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:

  •   reports of tests and evaluations;
  •   service plans and information about the providers, programs, and services you are using;
  •   instructions from doctors, teachers, social workers, and others working with your child and family;
  •   changes in your child’s behavior;
  •   medications;
  •   appointments, conversations, and meetings—including notes of what was discussed;
  •   requests you have made for supports such as child care, transportation, and flexibility in scheduling appointments; and
  •   letters about meetings and services—note the date they were received.

Ask for information and written materials in the language you speak and ask for explanations of anything you don’t understand.

Find other parents or family-run organizations where you can get information and support by sharing ideas and experiences.

 

PREPARING FOR THE FIRST VISIT

The first step to getting involved with the system of care is usually called an initial referral or intake. This is when you and the program or service find out about each other. This first visit may be at your home, at your child’s school, or an agency office. It could take a while—maybe as long as 2 hours.

What you need to know

  •   Most programs and services have eligibility criteria.
  •   You may be asked to bring your child to the first visit.
  •   Someone may want to talk with your child alone. Do not agree to this before both you and your child feel comfortable and have agreed to participate in the program.
  •   Most programs have a handbook that explains how they do their work. The intake worker should give you one.
  •   People who work in systems of care really do want to help your child and family. They will encourage you to speak up and ask questions on behalf of your child and family.

What to ask

  •   What services and supports are available and when and where can my child and family get them?
  •   How is eligibility for services determined?
  •   How much do services cost and where can I get help to pay for them?
  •   Who will watch my children while I complete the paperwork and go to meetings?
  •   How often will my child and family get services and how long can we continue?
  •   How do I get help if there is a crisis—especially at night or on the weekend when the office is closed?
  •   How do I find respite care and other support to help me care for my child at home?

What you can do

Schedule the first visit at your (and your child’s) convenience. Bring:

  •   someone you trust with you (for example, a parent advocate) to the first visit—or to any meetings later on;
  •   your folder or notebook of information and some identification such as driver’s license, social security number, or birth certificate; and
  •   proof of medical insurance, a Medicaid card, or evidence of your need for financial assistance (such as a pay stub or rent receipt).

Answer questions honestly and give accurate information about your child’s strengths and needs.

There is no such thing as a ‘dumb’ or ‘foolish’ question.

Request information and ask anything you want to know more about or do not understand.

Write down your questions before you go to the meeting.

Write down the answers to your questions and the names and phone numbers of people you want to get in touch with, or who will be working with your child and family.

Get a brochure or write down information about the agency’s services, fees, payment options, procedures, and appeal process.

Request a written explanation if you are told that your child and family are not eligible for services.

Do your own homework. Get another opinion and ask for a referral to another service or program that could help you.

What you can expect

You will be asked a lot of questions about your child and family. The intake worker will want to know things such as:

  •   what things your child does well;
  •   what you think the problems are and how they affect your family;
  •   what you want help with;
  •   what kind of insurance you have or how the services will be paid; and/or
  •   who or what has been helpful in the past.

You will be asked to sign a lot of forms such as:

  •   permission for your child to be tested;
  •   permission to gather or release information; or
  •   agreement to accept and pay for service.

It’s okay if you feel tired and a bit stressed when the first visit is over.

Set a date to meet with your service planning team.

PARTNERING WITH SERVICE PROVIDERS

Your child and family will be working with individual service providers and a service planning team. Building partnerships between families, individual providers, and service planning teams is hard work. Everyone has to be courteous and honest to gain the respect and confidence of others.

You are the customer and the client. Tell your service planning team and service providers what services and support you need. Be clear about your strengths, your needs, and what you think will help your child and family the most.

What you need to know

You and your system of care service planning team will work together to write a service plan specifically designed for your child and family, including:

  •   goals to achieve;
  •   services and supports provided as close to home as possible;
  •   services and supports that match your family’s lifestyle and culture; and
  •   regular progress reports and ongoing communication plan.

A service coordinator or case manager can help to organize services so that they are easy for you to use, and to provide your family with guidance and support. In some systems of care, you can be your family’s service coordinator.

All providers may not agree or recommend the same services and supports for you and your family. You can disagree with a provider, get a second opinion, or reject a service provider’s advice.

Your family’s language, spiritual beliefs, and cultural values must be considered and respected when choosing services and providers.

What to ask

  •   How will the services and supports in the plan help my child and family?
  •   What are the service provider’s qualifications? Does he or she have special training, and a track record of working with children and families like mine?
  •   Can I call service providers at anytime of the day or night if there is a crisis?
  •   How do I change services or providers if things aren’t working out as planned?

What you can expect

  •   You have the opportunity to speak up, be listened to with respect, and not be judged.
  •   Most service providers will talk to you and your child in a clear, courteous, respectful, and sensitive manner in the language you use at home. Ask for an interpreter—do not let your children translate for you.
  •   Service providers who work with your child may have a different view of your child and family from yours. Carefully consider the evidence for what they say before reacting. Most service providers are just as eager to see progress as you are.
  •   Insist that service providers meet when and where your child and family feel comfortable.
  •   Service providers may ask for your feedback and suggestions. Be honest when you reply.
  •   Most service providers will help you advocate for the services and supports that will help your child and family achieve goals that you set.
  •   You may be asked to sign that you agree to the service plan and are accepting the services offered. You can refuse to sign if you do not agree with the plan. Ask for a copy of the service plan if it is not given to you.

What you can do

Pick your service planning team members carefully and be an active participant on the team. Choose people whom:

  •   respect and trust you; and who
  •   know your child and family and have been supportive;
  •   have a track record of success dealing with the kinds of problems you are facing; and
  •   know about services in the community.

Share the future you envision for your child and explain how others can help achieve that desire.

Let service providers know your child’s and family’s strengths, needs, wants, and expectations, and tell them about your family’s preferences and priorities. You could talk with someone you trust before the meeting so you are confident about what you say.

Write down short- and long-term goals for your child and family and watch for progress toward these goals.

Tell your service coordinator or case manager as soon as you realize that some part of the plan isn’t working as you expected. Get your service planning team together again to make changes.

RIGHTS AND RESPONSIBILITIES

In a system of care, your child and family have specific rights and responsibilities. Other families as well as advocates and providers can tell you about these and help you understand how and when to use them. Become a strong advocate for your child and family. Exercise your rights.

What you need to know

  •   Discrimination in the provision of services on the basis of race, religion, ethnicity, gender, religion, age, or disability is illegal.
  •   If your child is being evaluated for special education, you have special rights and responsibilities. Ask the school to tell you about these and get a copy of these in writing.
  •   You can choose service providers that respect and value your language, culture, and spiritual beliefs.
  •   Services and supports need to be provided in your community so that your child and family can be involved with others from your neighborhood.
  •   You can refuse any service offered to you without being penalized. Get help from family advocates if you are penalized for making a legitimate complaint or refusing services that could harm your child or family.
  •   Responsible providers will notify you before they change or stop providing any service. Ask for a written notice and explanation of the change if you are not given one.

What to ask

  •   How do I review and get copies of my child’s and family’s records?
  •   How is my child’s and my family’s privacy protected and who has access to confidential records?
  •   How do I get help exercising my rights—especially if I want to file a complaint?

What you can expect

  •   Schools and agencies will give you a guide that explains all of your rights. The guide should be in the language you understand best, or a professional or advocate who speaks your language can translate and explain it to you.
  •   You will be told details of what confidential information will be disclosed to others and under what circumstances. Make sure you review information before giving permission for anything to be released to another school, provider, or agency.
  •   You can exercise any and all of your rights without punishment in any form. If you experience otherwise, seek help from an organized advocacy group or family run organization.
  •   Expect to be treated with courtesy, consideration, and respect.

What you can do

  •   Get to know and understand your rights and all the terms or conditions that apply to the services your child and family are using.
  •   Read everything carefully. Be sure that you understand and really do agree with anything that you are given before you sign it.
  •   Remember that although you may be under a lot of stress, you are your child’s best advocate. Clearly, you should listen to the advice of others on your service planning team who know something about your child’s need. Ultimately, you must decide what help is needed, where you want to go for it, and when and how often you need to have a service.
  •   Take control of the flow of information about your child and family. Carefully consider what reports go to which person, agency, school, and so forth. Think about this before you sign permission for information to be collected or given out.
  •   Resolve disputes promptly. If you disagree with a decision, speak first to the person most immediately involved. If that doesn’t solve the problem, speak to your service coordinator or the provider’s supervisor before you file a complaint.
  •   Request help from advocates who know the rules, understand the system of care, and have experience with the providers who are working with you and your family.

GLOSSARY

Appeal Process — These are the steps you must follow to get a decision about services reviewed and changed. Usually this involves proving why the decision was wrong or how it will harm your child and family. Often, you can appeal to a higher level if the first appeal does not get the result you want. You should be given information about the appeal process when you first start getting services. You should learn how to make an appeal and how to get help doing so.

Eligibility Criteria — These are the admission criteria or the basis on which children and families are allowed to get services from an agency or program. These criteria usually include age, disability, and income. They can also include where you live, whether your child is male or female, what kind of medical insurance you have, or what other kinds of problems your family is dealing with.

Family Focused — This is an approach to designing and providing services that views the child as a member of a family and recognizes that everyone in a family can be affected by how the others act, what they say, or how they feel or are doing in school or work. Decisions about services are made considering the strengths and needs of the family as a whole as well as the individual child with a mental health problem.

Initial Referral or Intake — This is the process an agency or program uses to first find out about your child and family and determine your eligibility for services.

Parent Advocate — These are individuals who have been trained to help other families get the kinds of services and supports they need and want. Parent advocates are usually family members who have raised a child with a behavioral or emotional problem and have worked with the system of care and many of the agencies and providers in your community.

Respite Care — This is a service that gives a family a short break —relief—where someone else temporarily takes care of your child for a few hours or a few days. Respite care can be provided in your home, at the respite care provider’s home, or at a special respite care facility.

Service Coordinator or Case Manager — This is an individual who keeps track of the services and supports your child and family are receiving and makes sure that they are working together in a manner that is easy for your child and family to use.

Service Plan — This is a written document that lists and describes all the services and supports your child and family will receive. Typically, service plans also include information about your child’s and family’s strengths, problems, and needs. Good service plans also spell out what the services and supports are designed to accomplish as well as how and when progress will be assessed. If your child is receiving special education, the service plan is called an Individualized Education Program or IEP. A federal law, the Individuals with Disabilities Education Act (usually called the IDEA), describes who is eligible for special education and exactly what must be in an IEP.

Service Planning Team — This is the group of individuals you select to help develop your child’s service plan. You choose the family members, professionals, friends, experts, and support people who will be team members. The team meets when it is convenient for you and as often as necessary to make sure your child and family are getting the help you want and need.

Strengths — These are the positive characteristics of your child and family. Everyone, no matter how severe their problems are, has things they do well, people they like, and activities they enjoy.

System of Care — This a coordinated network of agencies and providers that make a full range of mental health and other necessary services available as needed by children with mental health problems and their families. The values and principles of systems of care are printed in this Guide.

WHERE TO GET MORE INFORMATION

There is a lot of information on the Internet. You can connect to websites, free of charge, at many libraries and public schools.

These national resources can put you in touch with experts in your state or community.

Center for Mental Health Services
SAMHSA's National Mental Health Information Center
1.800.789.2647
mentalhealth.samhsa.gov/child

Center for Mental Health Services,
Child, Adolescent and Family Branch
301.443.1333
(Spanish is spoken)

Center for Effective Collaboration and Practice
1.888.457.1551
http://cecp.air.org/
(Spanish is spoken)

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

National Alliance for the Mentally Ill
703.524.7600
www.nami.org
(Spanish is spoken)

National Mental Health Association
703.838.7529
www.nmha.org
(Spanish is spoken)

National Resource Network on Child and Family Mental Health Services
202.408.9320
www.wbgh.com

National Technical Assistance Center for Children’s Mental Health
202.687.5000
www.dml.georgetown.edu
(Spanish is spoken)

Research and Training Center for Children’s Mental Health
813.974.4661
www.fmhi.usf.edu

Research and Training Center on Family Support and Children’s Mental Health
1.800.628.1696
www.rtc.pdx.edu
(Spanish is spoken)

U.S. Department of Education,
Office of Special Education Programs
202.205.5507
http://www.ed.gov/about/offices/list/osers/index.html?src=mr
(Spanish is spoken)

CA-0029
6/2000

Home  |  Contact Us  |  About Us  |  Awards  |  Accessibility  |  Privacy and Disclaimer Statement  |  Site Map
Go to Main Navigation United States Department of Health and Human Services Substance Abuse and Mental Health Services Administration SAMHSA's HHS logo National Mental Health Information Center - Center for Mental Health Services