Champions for Children with Disabilities
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Written by Dixie Jordan, PACER Center
Among all the dilemmas facing a parent of a child with emotional or behavioral problems, the first question-whether the child's behavior is sufficiently different to require a comprehensive evaluation by professionals-may be the most troublesome of all. Even when a child exhibits negative behaviors, members of a family may not all agree on whether the behaviors are serious. For instance, children who have frequent, severe temper outbursts or who destroy toys may appear to have a serious problem to some parents, while others see the same behavior as asserting independence or showing leadership skills.
Every child faces emotional difficulties from time to time, as do adults. Feelings of sadness or loss and extremes of emotions are part of growing up. Conflicts between parents and children are also inevitable as children struggle from the "terrible two' s" through adolescence to develop their own identities. These are normal changes in behavior due to growth and development. Such problems can be more common in times of change for the family - the death of a grandparent or family member, a new child. a move to the city. Generally, these kinds of problems tend to fade on their own or with limited visits to a counselor or other mental health professional as children adjust to the changes in their lives. At times, however, some children may develop inappropriate emotional and behavioral responses to situations in their lives that persist over time.
The realization that a child's behavior needs professional attention can be painful or frightening to parents who have tried to support their child, or it may be accepted and internalized as a personal failure by the parent.
Many parents are afraid that their child may be inappropriately labeled, and point out that the array of diagnoses, medicines, and therapies have not been agreed upon by all specialists. Still others become alarmed after obtaining an assessment for their child only to discover that the evaluator believed emotional disturbances originate in family dynamics and that "parenting skills" classes were the best way to address the problem. While many parents will concede that they may need to learn new behavior management or communication techniques in order to provide a consistent and rewarding environment for their child, many also express deep anger about the blame that continues to be placed on families with children who behave differently.
Before seeking a formal mental health assessment, parents may have tried to help their child by talking to friends, relatives or the child's school. They may try to discover whether others see the same problems, and to learn what others suggest they might try. Parents may feel that they also need help in learning better ways of supporting the child through difficult times, and may seek classes to help them sharpen behavior management skills or conflict resolution skills. Modifications in a child's routine at home or school may help to establish whether some "fine tuning" will improve performance or self-esteem. If the problems a child is experiencing are seen as fairly severe, and are unresponsive to interventions at school, in the community or at home, an assessment by a competent mental health professional is probably in order. Assessment will provide information which, when combined with what parents know, may lead to a diagnosis of an emotional or a behavioral disorder, and a recommended treatment program.
So when is that magical moment when parents should recognize their child's behavior has surpassed the boundary of what all children do and has become sufficiently alarming to warrant a formal assessment? There probably isn't one. It is often a gradual awareness that a child's emotional or behavioral development just isn't where it should be that sends most parents on a quest for answers.
Perhaps the most important question of all for parents of school age children to consider is, "How much distress is your child's problems causing you, the child, or other members of the family?" If a child's aggressive or argumentative behaviors, or sad or withdrawn behaviors are seen as a problem for a child or members of his or her family, then the child' s behaviors are a problem that should be looked at, regardless of their severity.
While there is no substitute for parental knowledge, certain guidelines are also available to help families make the decision to seek an evaluation. In Help for Your Child, A Parents Guide to Mental Health Services, Sharon Brehm suggests three criteria to help in deciding whether a child's behavior is normal or a sign that the youngster needs help:
- The Duration of a Troublesome Behavior - Does it just go on and on with no sign that the child is going to outgrow it and progress to a new stage?
- The Intensity of a Behavior - For instance, while temper tantrums are normal in almost all children, some tantrums could be so extreme that they are frightening to parents and suggest that some specific intervention might be necessary Parents should pay particular attention to behaviors such as feelings of despair or hopelessness; lack of interest in family, friends, school or other activities once considered enjoyable; or behaviors which are dangerous to the child or to others.
- The Age of the Child - While some behavior might be quite normal for a child of two, observation of other children of the youngster's age may lead to the conclusion that the behavior in question is not quite right for a five year old. Not all children reach the same emotional milestones at the same age, but extreme deviations from age-appropriate behaviors may well be cause for concern.
Attempts at self-injury or threats of suicide, violent behaviors, or severe withdrawal that creates an inability to carry on normal routines must be regarded as emergencies for which parents should seek immediate attention, through a mental health or medical clinic, mental health hotline, or crisis center.
Parents will also want to consider whether their child's behavior could be influenced by other factors:
- whether a specific physical condition (allergies, hearing problems, change in medication, etc.) could be affecting the behavior;
- whether school problems (relationships, learning problems) are creating additional stress;
- whether the adolescent or older teen might be experimenting with drug use or alcohol; or
- whether changes in the family (divorce, new child, death) have occurred which may be causing concern for the child.
Special consideration needs to be given to identifying behaviors of concern in very young children. Their well-being is so connected with that of the family that services must be developed with and directed to the family as a unit. The goal in assessing and providing services to a young child should include helping families to articulate their own stresses and strengths. It is in the context of family that a child first explores his or her world and learns to adapt to the varied demands of families and the world at large.
Historically, many professionals have not been anxious to have a child "labeled and judged" at an early age. On the other hand, the earlier that parents and professionals can intervene in the life of a young child with delays in emotional and behavioral development, the better it is for both the child and the family. Early assessment and intervention requires that parents be involved in both giving and receiving information about their child's development. Interviews with families and observations of their child to assess how well he or she communicates, plays, relates to peers and adults, and is able to self-regulate behavior is useful in deciding whether the child has a developmental problem that needs attention.
Most often, the first indications that an infant may be experiencing significant problems will be delays in normal development. An infant who is unresponsive to his or her environment (doesn't show emotion such as pleasure or fear that is developmentally appropriate, doesn't look at or reach for objects within reach or respond to environmental changes such as sound or light), who is over-responsive (easily startled, cries), or who shows weight loss or inadequate weight gain that is not explainable by a physical problem (failure to thrive), should have a thorough evaluation. If parents have questions about their child's development, they should call their child's pediatrician or family physician. Many doctors who include young children in their practice will have materials available for parents on normal childhood development.
Toddlers may have a tremendous range of behaviors that would be considered developmentally appropriate, depending on the child's own history. However, any significant delays (six months or more) in language development, motor skills or cognitive development should be brought to the attention of the child's pediatrician. Children who become engrossed in self-stimulating behavior to the exclusion of normal activities or who are self-abusive (head banging, biting, hitting), who do not form affectionate relationships with care providers such as baby-sitters or relatives, or who repeatedly hit, bite, kick or attempt to injure others should be seen by their pediatrician or family physician and, if indicated, by a competent mental health professional.
Especially with a first child, parents may feel uneasy, uncomfortable, or even foolish about seeking an evaluation for their very young child. While sorting out problems from developmental stages can be quite tricky with infants and toddlers, early identification and intervention can significantly reduce the effects of abnormal psychosocial development. Careful observation of infants and toddlers as they interact with caregivers, their family or their environment is one of the most useful tools that families or physicians have, since many mental health problems cannot be diagnosed in any other way.
The Individuals with Disabilities Education Act (IDEA) requires states to provide services for children from ages three through twenty-one who have disabilities, and established an Early Intervention State Grant Program (part H of the IDEA) to serve infants and toddlers from birth through the age of two. The law specifies that states who apply for and receive funds under Part H must provide a multi-disciplinary assessment of infants or toddlers who are experiencing significant delays in normal development, and identify services appropriate to meet any identified needs in a written Individual Family Services Plan (IFSP). As of this writing, all states are receiving funds to provide services to infants and toddlers. Parents who have questions related to preschool or early intervention programs should call their local school district offices or their state Department of Health or Human Services for guidance.
Appropriate assessment of a child's mental or emotional status is key to developing appropriate school or mental health services. For children who are cultural or racial minorities, parents will want to know how, or if, those differences will affect assessment results.
Tests, by their very nature, have been developed to discriminate. if everyone taking a test scored the same, then the test would be of no use. What's important, though, is that tests discriminate only in those areas they were designed to measure - such as depression, anxiety, etc. - and not along measures such as cultural background, race, or value systems.
If the professional who is responsible for assessment is not of the same cultural background as the child, parents should feel free to ask what his or her experiences have been in cross-cultural assessment or treatment. Professionals who are sensitive to issues of bias related to language, socioeconomic status or culture in formal assessment tools should willingly share such information with parents.
One way of minimizing the effects of cultural bias in obtaining an appropriate diagnosis is to utilize a multidisciplinary approach to assessment involving persons from different backgrounds (teacher, therapist, parent, social worker) in completing the assessment. Several questions to consider are:
- Do the various professionals agree with one another?
- Did the professionals use family information about the child's functioning at home and in the community to aid in making a diagnosis?
- Does the family believe the assessment is accurate?
When a multidisciplinary approach is not practical or available, the person providing the assessment should give a battery of tests to reduce the effects of bias in an individual test when making a determination that a child needs mental health services.
If children from specific ethnic or cultural groups appear to be over-represented in the program that has been selected or recommended for a child, parents should carefully examine the procedures for determining their child's placement.
If parents decide that the placement decision was not influenced by racial or cultural bias, that perspective can increase confidence in the therapeutic program selected for their child.
Once parents have decided that their child or adolescent has behaviors that deserve at least a look by a mental health professional, the question then becomes where to turn for an evaluation.
If the child is of school age, a first step could be to approach the school's special education director and request an assessment by the school psychologist or teacher. If the family doesn't want to involve the school at this point, there are several other places to turn for an evaluation.
A family doctor can rule out physical health issues and refer families to an appropriate child or adolescent psychologist or psychiatrist. Also, many hospitals and most community mental health centers offer comprehensive diagnostic and evaluation programs for children and adolescents.
Assessment can be costly, but there are some supports available for families. For instance, most insurance companies will cover all or a portion of the costs of an assessment or, Medical Assistance (Medicaid) will cover costs for eligible families.
For Medicaid-eligible children, the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) Program provides preventive health care, including screening (assessment), diagnosis, and appropriate mental health services.
Under EPSDT, a screen is a comprehensive health evaluation, including the status of a child's emotional health. A child is entitled to periodic screenings, or an interperiodic screening (between normal screening times) whenever a physical or emotional problem is suspected and is entitled to receive health services to address such problems from any provider (public or private) who is a Medicaid provider. Because of the numbers of changes being proposed in the Medicaid program at the time of this waiting, it is a good idea for parents to check with their state Medicaid office if they are concerned about services under the EPSDT program.
Other parents, particularly those in rural areas, may want to first approach their county's public health nurse or mental health services director. Either may be able to direct them to an evaluation program available in their area.
Community mental health centers are also a good source of help, and can be less expensive than seeking out a private doctor or mental health professional. Parents will want to ask for professional staff with experience in evaluating the mental health needs of children. If in doubt, ask for the credentials and expertise of the professional who is assigned to work with the child. Credentials should be offered and should be displayed in the professional's workplace.