This Web site is a component of the SAMHSA Health Information Network |
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This Web site is a component of the SAMHSA Health Information Network. |
Family Guide to Systems of Care for Children with Mental Health NeedsCARING 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 Values and Principle of Systems of CareCore Values – systems of care are:
Principles – systems of care provide for:
How This Guide Was DevelopedThis 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 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 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:
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 CHILDGet 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:
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 you can expect
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:
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 VISITThe 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
What to ask
What you can do Schedule the first visit at your (and your child’s) convenience. Bring:
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:
You will be asked to sign a lot of forms such as:
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 PROVIDERSYour 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:
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
What you can expect
What you can do Pick your service planning team members carefully and be an active participant on the team. Choose people whom:
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 RESPONSIBILITIESIn 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
What to ask
What you can expect
What you can do
GLOSSARYAppeal 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 INFORMATIONThere 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
Center for Mental Health Services,
Center for Effective Collaboration
and Practice
Federation of Families for Children’s Mental Health
National Alliance for the Mentally Ill
National Mental Health Association
National Resource Network on Child and Family Mental Health Services
National Technical Assistance Center for Children’s Mental Health
Research and Training Center for Children’s Mental Health
Research and Training Center on Family Support and Children’s Mental Health
U.S. Department of Education, CA-0029 |
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