Psychosocial Issues Affecting Social Participation

• Any recent act or failure to act on the part of a parent or caretaker which results in death, serious physical or emotional harm, sexual abuse or exploitation; or

• An act or failure to act which presents an imminent risk of serious harm.

• Neglect is defined as the withholding of nutrition, shelter, clothing, medical care, such that the child’s health is endangered. Undersupervision and abandonment are included in this category. This is the most common form of child abuse, accounting for about 64% of reported cases.

• Physical abuse affects about 16% of victims. This type of abuse includes punching, shaking, kicking, biting, throwing, burning, and other forms of injurious punishment.

• Sexual abuse is estimated to occur at a rate of about 9% and includes any seduction, coercion, or forcing of a child to observe or participate in sexual activity for the sexual gratification of a more powerful individual.

• Medical neglect is a failure by the caregiver to provide for the appropriate health care of the child although financially able to do so, or offered financial or other means to do so. This kind of maltreatment affects 2% of the reported cases.

• “Other” types of maltreatment constitute 15% of the reported cases. These include emotional abuse, such as the withholding of affection, chronic humiliation, threatening harm to the child or those he or she cares about, and criticism. Abandonment and congenital drug addiction also fall under this reporting category.¹⁶⁶

Time-Limited Environmental Stress and Its Impact on Occupational Performance

Short-acting environmental conditions such as the death of an extended family member or friend, temporary marital crises, a change of school or day care, or a family relocation, can have significant effects on the child’s social participation. A survey of 56 school-based occupational therapists indicated that many of the students with whom they worked experienced such loss and grief in their lives and that their behavior reflected this.¹²³ Children’s reactions to such events often include decreased performance in play or academic activities. The child may act preoccupied, fatigued, or uninterested in usual pastimes. Sometimes children temporarily “lose” their skills in self-care and revert to more dependent, infantile ways.¹⁸² They may become emotionally overreactive and engage in provocative behavior such as fighting or disobeying adults’ directives.¹²⁵ Occupational therapists can help children and adolescents to cope with times of increased stress through establishing a therapeutic relationship, asking about how the child is feeling and the events that are occurring in their lives, providing opportunities for self-expression through activities, and communicating with the rest of the team to ensure the best possible communication and support throughout the child’s day. Educating the child, family, and others who are in contact with the child regarding typical grief reactions and ways to respond to these can also facilitate the child’s passage through difficult experiences (Case Study 13-2).

Chronic Environmental Stress and Its Impact on Occupational Performance

Long-term sources of social stress are circumstances and events that do not resolve over the course of weeks or months (see Box 13-1). Examples of these are poverty, social discrimination, and severe family dysfunction that may occur when one or both parents suffer from substance abuse or other mental disorders. These kinds of environmental conditions may have long-term effects on children’s development and social participation through the lifespan, especially if combined with other complications such as the child’s own neurodevelopmental problems.

More than 17% of children in the United States live in poverty. Of the children aged 18 and younger living in poverty, approximately 24% are black, 21% are Hispanic, 10% are white, and 10% are Asian.¹⁶⁴ Long-term poverty has been associated with a number of serious problems for children and adolescents and for the adults who care for them.^32,42 Having a low income and living in a crime-ridden environment have been shown to correlate with increased risk of having newborns born prematurely or with low birth weight, both of which increase the risk for subsequent developmental and health problems.¹²⁰

The home environments of families with few resources may offer limited access to items that are considered to be “necessities” by a majority of members of the culture, such as books, toys, a telephone, television, or computer. The language opportunities in low-income homes are often different and reduced when compared with those found in middle-class homes (Case Study 13-3).¹⁰⁸ Due to a combination of health and environmental factors, children who live in chronic economic deprivation are at increased risk for having lower cognitive abilities and more behavioral problems.^18,42 Parents who experience the stress of chronically worrying about meeting basic needs for food, shelter, and safety are more prone to discipline their children harshly, have marital conflicts, experience depression, and have substance abuse problems.^15,42,86,121 They may be too overwhelmed, discouraged, or disorganized to become involved in their children’s schooling. These conditions place many low-income students at a disadvantage and diminish their future opportunities. Some children who have experienced lifetimes of severe family and community dysfunction reach adolescence feeling hopeless about their futures. Their occupational performance is clearly affected by this as they struggle with society’s expectations to further their education in order to prepare for a productive adulthood, while from the discouraged adolescent’s perspective this is impossible to achieve.

Case Study 13-3 illustrates how poverty and other chronic stress factors can affect a child’s occupational performance, both in terms of the preparation for and availability of opportunities to achieve social participation. Although environmental factors are clearly influential in determining a child’s occupational performance, the PEO model reflects a balance of emphasis among its three components.¹⁰⁶ Each individual has capacities and desires that strongly influence occupational expression. The following section provides information regarding the role that mental functioning plays in the enactment and development of children’s occupational performance.

Mood Disorders

Mood disorders involve long-term changes in the child’s prevailing emotions. The presence of symptoms may be cyclic, increasing and decreasing periodically, but they may last for months or years if untreated.^6,99 The diagnostic criteria for major depression stipulates that symptoms must have reached a level of severity that results in changes in occupational performance or significant distress during daily activities.⁶ Depression manifests as persistent or repeated episodes of a combination of irritability, loss of interest in and enjoyment of usual activities, increased or decreased activity level, sadness, periods of crying, decreased energy, inability to concentrate and learn, agitation, sleep and/or appetite disturbance, anxiety, guilt, and/or thoughts of death or suicide. Depression is estimated to occur in 3% of children and 8% of teens.¹²⁴ Children and adolescents who have experienced clinical depression are at increased risk to have repeated episodes into adulthood.^6,69,100 The diagnostic evaluation of depression should be made by a psychologist or psychiatrist through structured interviews with the child and parents.^124,146 Ascertaining a diagnosis in children may be complicated because the outward symptoms may appear inconsistently; the child may play and seem happy some of the time. Intervention often includes a combination of medications and psychotherapy or counseling parents.^124,146 Brief hospitalization may be required if there is risk of suicide.

Occupational performance and satisfaction are adversely affected by the symptoms of depression. Difficulty with thinking and the loss of enjoyment and interest reduce the child’s motivation to play and decrease ability to attend and learn in school. Children with depression may sleep during the day, even in classes, and often experience aches and pains. They often complain of being tired or bored during previously preferred activities. Activity levels may be decreased or increased, so the child may be chastised for being “lazy” or “out of control,” depending on the situation. Unexpected tearfulness or displays of temper place the child in social jeopardy with adults and peers. Changes in appetite may affect social interactions during meals, as the child is scolded for eating too little or too much. There may be resistance to attending family, church, and other social activities. Among the most occupationally debilitating aspects of depression are the child’s feelings of incompetence, hopelessness, and helplessness. These emotions, however irrational, are symptoms of depression that can prevent children and adolescents from participating in activities that involve any risk of failure or humiliation: deciding which answer to choose on a test, raising one’s hand in class, inviting a peer to play, or joining in a game. Adolescents with depression must add the anxiety and self-doubt of depression to the feelings of self-consciousness typically experienced at this phase of life. Depression increases the risk of alcohol and drug use, as sufferers seek relief from emotions that are overwhelmingly painful.^6,112

Bipolar disorder, or manic-depressive illness, is increasingly being recognized as a condition that often emerges during childhood or adolescence.^25,72 Individuals with bipolar disorder experience “mania,” or periods of extreme overactivity, agitation, irritability, rapid (“pressured”) speech, and reduced periods of sleep.⁶ Less often, children and adolescents may display elation, giddiness, or grandiosity.^19,88 Episodes of mania are juxtaposed by periods of typical or depressed mood. These mood states may fluctuate quite rapidly, sometimes even presenting as mixed states, or can alternate over a period of weeks or months.^6,25 Sometimes a child’s changes in mood may be difficult to distinguish from voluntary behaviors aimed at provoking or controlling others.⁸⁸ Mania in children may be misdiagnosed as attention deficit disorder, oppositional defiant disorder, or temporal lobe epilepsy.⁷² During manic phases some people have confused and bizarre thinking that may involve feelings of omnipotence, euphoria, and/or hallucinations. Children and adolescents with bipolar disorder are prone to episodes of aggression and despair and may pose a danger to themselves or others.⁷² Approximately 10% to 12% of adolescents with recurrent episodes of major depression will develop bipolar disorder.⁶ Individuals with bipolar disorder are at increased risk for suicide, especially during transitions from a manic to depressed mood state. A diagnostic evaluation should be completed by a psychologist or psychiatrist specializing in the care of children and adolescents, using structured interviews with the child and parents and direct behavioral observation. Intervention often includes medication, psychotherapy or counseling, and client/family education.^72,88,146

Children and adolescents who have bipolar disorder may have periods of time when their behavior is noticeably “out of character” or socially inappropriate, or they may seem consistently irritable and active.¹⁹ Behaviors that are commonly experienced during low levels of mania include continuously talking, attention-seeking, disregard for others’ feelings or social norms, abruptly changing emotions, and impulsiveness. The child may resist adults’ attempts at guidance or correction or correct him and may act “bossy” toward adults. There may be aggressive outbursts toward property, other children, adults, or himself or herself. These behaviors are not compatible with performance as a student and may occur sometimes even if the child is taking medication. It is important that the adults who regularly interact with a child who has recurring symptoms of bipolar disorder know that these behaviors may not always be under the child’s control and have plans in place to respond effectively, avoiding behavioral outbursts that are disruptive or dangerous. Occupational therapy should include helping the child adopt regular sleeping habits, learn about the illness, engage in effective stress management strategies, and learn ways to communicate well with others. All team members should participate in monitoring the child’s behavior as it relates to medication effects. Some of the most effective medications used to treat bipolar disorder can cause life-threatening side effects if the child becomes dehydrated or the timing of dosage is incorrect.²⁵

Anxiety Disorders

Anxiety disorders are characterized by pervasive and persistent (longer than 6 months) feelings of uneasiness, fearfulness, or dread that are not founded on realistic concerns.⁶ Estimated to occur in 4% to 13% of children, anxiety is a relatively common problem that is thought to result from a combination of inborn/genetic traits and environmental factors.²⁵ The diagnosis of an anxiety disorder is made by a psychiatrist or psychologist through observation, interviews with the child and family, and self-report questionnaires.¹⁴⁵ Symptoms of anxiety and depression often occur together, and medications and psychotherapy may be combined to address both kinds of problems.^25,88 Subclinical levels of anxiety may also have a negative impact on children’s occupational performance and social participation and should receive attention by occupational therapists and others who work with children in schools and other settings.

Social anxiety disorder is estimated to affect up to 11% of all children and adolescents.³⁸ Characteristic symptoms include excessive worrying about others’ evaluations of oneself or about one’s past and future behavior. Those affected exhibit considerable self-consciousness and a high need for reassurance by others.^6,70,107 Children and adolescents who have social anxiety may be unable to participate in many of the activities in which they would like, or are expected, to engage.^13,151 Any time the child feels he is at risk of criticism or embarrassment, he may become overwhelmed by automatic reactions such as a racing heart, blushing, feeling out of breath, and perspiring. Thinking is derailed by emotions of fear or even panic. The anxious child’s behavioral reactions to these overwhelming emotions (e.g., crying, resisting an activity, having a tantrum) may draw critical attention from others, further increasing social anxiety. Acute anxiety reactions can occur in an array of daily situations, such as being called on to perform in class, taking a piano lesson, walking into church, or learning to drive a car. Such experiences are subjectively unpleasant and may cause embarrassment due to others’ real or imagined reactions. Children and adolescents who have symptoms of social anxiety avoid and miss out on participating in many required and cherished activities.⁴⁵

Obsessive-compulsive disorder (OCD), another subset of the anxiety disorders, is characterized by intrusive thoughts and repetitive behaviors that have little or no functional purpose beyond decreasing tension.⁶ OCD has been measured as affecting relatively few children and adolescents (fewer than 1%), but is thought by some experts to be underreported, as its expression is often confined to the home.⁶³ Symptoms of obsessive-compulsive disorder may occur consistently or episodically, but they tend to be durable over many years, and are exacerbated by stress.¹⁶⁰ OCD typically emerges between the ages of 6 to 15 years in males and 20 to 29 years in females.⁶

Children and adolescents with OCD may spend many hours per day engaging in behaviors such as hand washing, counting objects, arranging objects in a particular way, checking on the status of something (such as whether an appliance is unplugged), or cleaning. These behaviors may be visible to the casual observer or performed surreptitiously. In either case, if the repetitive activity is interrupted or prevented, the affected individual experiences anxiety. Intervention typically includes medication, client and family education, and cognitive behavioral therapy.^25,63 Children and adolescents with neurologic impairments such as learning disabilities, Tourette’s syndrome, and autistic spectrum disorders are at increased risk of also having OCD.^63,145

The daily balance of activity is negatively affected by the amount of time spent on obsessive-compulsive rituals in children and adolescents with this disorder. Tasks that would ordinarily take minutes may require hours as the child restarts the process again and again. Task interruption may occur as he or she stops to readjust unrelated objects or to wash hands repeatedly. Studying, packing a book bag, bathing, using the toilet, and getting dressed are just some examples of activities that could be severely affected by obsessive-compulsive symptoms. The child or adolescent with OCD also suffers socially, because even though he may know that his repetitive actions are irrational and, by others’ standards, “weird,” he feels compelled to continue doing them. It becomes easier to spend time alone and at home, rather than to cope with others’ reactions and misunderstanding. Occupational therapists can support team interventions by helping affected children and adolescents to understand the nature of this neurologically based disorder, teaching stress management skills, and helping them identify and reduce exposure to environmental triggers that stimulate obsessive thoughts.

Attention Deficit Disorder

Attention deficit disorder is characterized by significant difficulty with selective and/or sustained attention to tasks; this central problem may be accompanied by difficulties with overactivity and/or impulsivity. Attention deficit disorders are estimated to affect 8% of children and adolescents, with more boys than girls represented.⁶ A diagnosis is made through structured observations in a variety of settings and across time. Intervention often includes a combination of medication, behavior management, client education, support, and environmental adaptation.¹⁸⁵

Children and adolescents with attention deficit disorder may have difficulty performing tasks in environments that are moderately or highly stimulating, such as the typical classroom or household. When trying to engage in activities, the child may have to work at continuously redirecting her attention from extraneous sounds and sights and back to the targeted task. Reading comprehension and listening skills are often affected. Impulsiveness may result in acting before thinking, leading to errors on schoolwork or inappropriate social behavior. Adolescents with attention deficit disorder may have difficulty following through on commitments due to disorganization and forgetfulness. They are less able to organize their time and materials than most of their peers. They may have difficulty sustaining effort on tasks, quickly become “bored” and leave tasks unfinished.

Occupational therapy for children with attention deficits should address the personal, environmental, and occupational factors. Children and teens can be taught to understand that they have a neurologically based problem. They can then learn ways to manage this through adherence to medication routines and attending and responding to their sensory and emotional states. Framing the child’s difficulty as a set of solvable problems, rather than as deliberate misbehavior, can help all parties feel better and behave more productively. Teachers, parents, and clients can learn ways to create and maintain physical environments that minimize auditory and visual distractions during tasks that require concentration and to modify tasks to allow well-timed breaks and opportunities for feedback. All involved parties can learn to structure and support a well-regulated routine of daily activities, with established and balanced patterns of sleeping, eating, work, and play.

Disruptive Behavior Disorders

Oppositional defiant disorder (ODD) is characterized by a well-established pattern of disobedience and hostility toward authority figures that lasts for over 6 months. Children who fit this diagnosis often have excessive displays of temper, are irritable, deliberately refuse to comply with rules and directives, blame others for their actions, and act vindictively.⁶ They seek to provoke others by verbally threatening or insulting them. ODD is generally diagnosed by 8 years of age, and rarely after early adolescence; rates of its occurrence range from 2% to 16%.⁶ Conduct disorders are characterized by the many of the same behaviors as those seen in oppositional defiant disorder, but include more intrusive and severe forms of chronic misbehavior such as physical aggression toward property, animals, or people, theft, and/or lying. Environmental factors appear to play a large role in the development of disruptive behavior disorders; there is also evidence of genetic influence and a high rate of co-occurrence with neurologically based problems such as learning disabilities and attention deficit disorder.³⁸ Many children with a conduct disorder are also diagnosed as having depression and/or attention deficit disorder and may receive medication for these problems.

Disruptive behavior disorders affect up to 10% of children and adolescents and seriously impede participation in family, school, and community activities.^6,38 Conduct disorders place children at risk of harming others, breaking the law, and being placed in restrictive correctional or mental health facilities. Occupational therapists with clients who have disruptive behavior disorders are positioned to join a team effort to help children learn prosocial, adaptive ways to enjoy school, play, and rejuvenation. This begins with establishing a therapeutic alliance that includes well-understood and maintained expectations for positive behavior and reliable and fair consequences for behavioral infractions.³⁸ Therapy that promotes achievement of recognition and feelings of competence through engaging in valued activities provides children with alternatives to antisocial behavior and motivation to behave in ways that allow participation in the larger community. Teaching the child how to use anger and stress management techniques, social interaction skills, and conflict resolution skills can be part of the occupational therapy plan. Consultation with other team members may include helping teachers and parents identify educational and functional tasks that are motivating, highly structured, and provide the “just right” level of challenge for that particular child or adolescent.

Autism Spectrum Disorders

Autism spectrum disorders, which manifest within the first 3 years of life, are characterized by (1) abnormal ways of relating to people, objects, and events; (2) delayed or missing speech, language, and/or nonverbal communication skills; and (3) restricted, repetitive, and stereotyped patterns of behavior, interests, and/or activities.⁶ Children with autism spectrum disorder exhibit a wide range of ability and variation in severity of symptoms. At one extreme, children have functional language and cognitive skills at levels that allow their participation in typical classrooms; children at the other end of the spectrum are functionally nonverbal and require continuous assistance and accommodation. Problems that may co-occur with autistic spectrum disorders include sensory processing dysfunction, cognitive impairment, anxiety, depression, hyperactivity, seizure disorder, fragile X syndrome, and tuberous sclerosis.¹²⁷ The diagnosis of autism spectrum disorder has increased over the past 20 years, spurring debate as to whether this marks an actual increase in the incidence of the disorders or an increased sensitivity in diagnosing new cases.⁷¹ The number of special education students classified as having autism spectrum disorder increased by 189,000 between 1994 and 2006.⁸¹ Current estimates indicate that approximately 1 in 150 children have an autism spectrum disorder.³¹ This apparent increase has been attributed variously to a broadening of the diagnostic criteria, the advent of assessments that allow earlier diagnosis, and a possible increase in mistaking other language and cognitive disorders for autism.^71,146 Children with autistic spectrum disorders may grow up to achieve full independence and community participation in adulthood or may require assistance throughout their lives. An individual’s long-term outcome is determined by a combination of factors, including the severity of the autistic disorder, cognitive ability, and social factors.³⁹

Intervention for problems associated with autism spectrum disorders often includes behavioral methods, psychoeducational approaches, communication interventions, social skills training, and a variety of medications to address specific symptoms.^{6,127,136,146} (See Chapter 14 for additional information on this topic.) There is a growing body of evidence linking autistic disorders and sensory processing dysfunction.^51,75 Occupational therapy may include sensory integration therapy, life skills training, and social skills training.^10,74,114 Clinical trials have demonstrated positive effects for most of these interventions; however, the evidence is limited (see Case-Smith & Arbesman’s review of intervention applied by occupational therapists²⁹). As with all interventions, families should be encouraged and supported in making a critical evaluation of the evidence to date before engaging in a particular intervention.¹⁴⁶

The Occupational Therapist’s Role Relative to Psychotropic Medication

All of the mental disorders described above may be treated with medications as a central or adjunctive intervention. Research evidence to date indicates that, just as for adults, a combination of medication and therapy is more effective than either approach alone for anxiety and attention deficit disorders.^64,92,98,136 The use of psychotropic medications among children and adolescents has increased significantly over the past 15 years.^64,132 Approximately 17% to 22% of all students receiving special education services use psychotropic medications; this includes 42% to 52% of students classified as having emotional disturbance.¹³⁰

Many children who receive occupational therapy services take psychotropic or seizure medications. The medical management of such drugs is made challenging by the children’s rapid growth and development, as well by as the lack of research to guide decision making.^64,88 Although occupational therapists do not administer medications, they should stay apprised of their clients’ medications, and assume responsibility to be informed about the medications’ expected effects, possible side effects, and precautions. As a general guideline, therapists should consistently observe their clients for positive changes and possible unwanted drug effects and report these to the prescribing physician and in the client’s official record. Brown and colleagues have published a useful array of forms that can be used to systematically document behaviors and symptoms that reflect a child’s responses to medication.²⁵ Any time a child displays an abrupt or marked change in his state of arousal (e.g., acts unusually drowsy or agitated), demonstrates signs of neurologic change (such as previously unobserved motor or cognitive difficulties), or complains of discomfort such as nausea or headaches, the possibility of medication side effects should be considered. If the observed symptoms are severe or of sudden onset, the situation should be treated as a medical emergency requiring the immediate notification of the child’s parents and evaluation by a qualified medical practitioner, such as a physician or registered nurse. All such observations and referrals should be documented by the occupational therapy practitioner in a timely manner.

Children and adolescents with psychological and behavioral problems live, work, and play in an array of environments. Their problems and needs may become apparent in a variety of ways, depending on the context. The following section explores the wide range of possible settings in which occupational therapists work with children whose occupational performance is affected by psychosocial dysfunction and how occupational therapy may be practiced in each.

Early Childhood Intervention Programs

The primary mission of early childhood intervention (ECI) programs is the prevention and amelioration of developmental disabilities in children from birth to 3 years of age. According to the Individuals with Disabilities Act (IDEA), clients include infants and toddlers who are diagnosed as having developmental delay, those who are considered to be at risk for developmental problems, and their families. Although infants and toddlers are referred primarily to early intervention for evaluation and treatment of neurologic and physical conditions, children may be referred when their development is at risk because of parental mental health problems, such as chemical dependency, domestic violence, parental depression, or other psychiatric disorders. Occasionally the identified infant may have a diagnosed mental disorder, such as failure to thrive or pervasive developmental disorder.⁶

Professionals working in ECI programs are likely to use developmental, neurodevelopmental, rehabilitative, behavioral, interactional, and familial systems as frames of reference (Table 13-3). Occupational therapists, educated to recognize and treat persons with mental illness, contribute significantly to the ECI team’s effectiveness with high-risk families. For example, mothers who are experiencing anxiety or depression are often unable to meet their infant’s needs for responsive interaction.^41,80,137 Parents who are addicted to drugs are at increased risk of neglecting or abusing their children.^149,184 Occupational therapists can observe clients for signs of problems such as depression and substance abuse and can facilitate clients’ access to evaluation and treatment by a qualified care provider. Environmental stressors such as poverty, social isolation, and community violence also need to be evaluated and addressed, since they play a part in a family’s ability to meet the needs of infants and children.^44,64,79,174 If the parent of a child with medical complications reports that the family is having difficulty following through with the child’s care because of unemployment and marital stress, the ECI team is positioned to refer the parents for financial assistance, work placement, and counseling services. Once these concerns are resolved, parents have more energy available for child care. If there appears to be a danger of child abuse or neglect, the occupational therapist is mandated by law to report these concerns to the state child protection agency. Case Study 13-4 presents an example of family-centered early intervention.

Public School Systems

Students whose special needs are primarily psychosocial are classified by the school system as emotionally disturbed (ED). Federal regulations for IDEA define this special education classification as:

Emotional disturbance was the primary disability category for about 1 in 12 special education students in the year 2000 to 2001.⁸² The rate of educational diagnoses of emotional disturbance increases with age and grade level. Most children in need do not receive professional mental health care, so the public schools serve more children with behavioral and emotional disorders than any other agency.⁷⁶ Students with mental health problems do not qualify for special education services unless their symptoms significantly disrupt their school performance, so their needs are often underserved at school, as well as in the community and health care systems.¹² Occupational therapists working in the schools have an important responsibility to observe the students with whom they work for signs of emotional distress, as many children with mental health problems also have the learning and attentional disorders that are typically referred for services at school.

The primary mission of public education is academic and social preparation for future education and work roles. Research shows that this goal has been largely unreached for students who have emotional and behavioral problems.^{20,27,110,177} Students with moderate to severe behavioral problems are unable to take full advantage of education and experience repeated academic and social failure. More than 50% of students with emotional or behavioral disorders drop out of high school.¹⁶⁵ These students have a significantly increased risk for economic dependency and crime.^20,175 The public schools represent an arena in which occupational therapists have an unrealized opportunity to have a tremendous effect on the lives of children with psychosocial problems.^12,123 See Chapter 24 for further description of school mental health programs.

A variety of school settings serve special education students with ED. Self-contained classroom arrangements allow students whose behavior is frequently disruptive or otherwise inappropriate to receive intensive behavioral intervention while being educated in a small group setting. However, students in such classrooms are segregated from peers and role models and suffer the stigma of being identified as “different.” This segregation contradicts the goal of full inclusion of special education students in regular education settings.¹⁷² In a full inclusion model, students attend regular education classrooms with support services that may include a resource room for specific subjects, classroom aides, crisis intervention, and counseling services. Benefits of this approach include regular exposure to a typical school environment, opportunities to interact with typically developing peers, and positive experiences that reinforce learning of social skills. Problems can arise with this approach when the teachers have large numbers of students and little training in preventing or managing disruptive behaviors. Teachers and students then feel inadequate and frustrated.

Many classroom teachers incorporate social skills training programs into their regular curricula. These programs are suitable for all children, and they address areas such as communication and social skills,⁶⁶ violence prevention,²³ and drug abuse prevention.⁶⁷ Such educational programs can provide an excellent means of developing prosocial thinking and behavior in typically developing children. However, these programs do not provide the intensive guidance required by many children and adolescents who have psychosocial dysfunction affecting performance in these areas.¹⁴³

School-based therapeutic intervention is directed toward enhancing students’ academic and future vocational performance with an emphasis on both scholastic and social development. Traditionally the school psychologist, counselor, or social worker assumes responsibility for evaluating psychosocial needs and may work with students in individual or small group sessions. These professionals serve the needs of all students, not just those in special education, and may not have an extensive clinical background in psychopathology.¹¹⁰ They apply behavioral, cognitive, and developmental approaches (see Table 13-3).

Many leaders in education and occupational therapy believe that the services provided to students with behavioral disorders are inadequate in quantity and quality.* Teachers express despair as they sacrifice creative educational methods to address behavioral crises. Parents of students with behavioral disorders are frustrated by the paucity of services to address their children’s particular needs. All parents are concerned about their children’s safety and education while they are at school.

Occupational therapy activity groups have been described as effective for elementary students who have social and behavioral difficulties.^50,147,148 Motivating activities such as planning and preparing meals, creating craft projects, producing a newspaper, performing skits and plays, and refinishing furniture help students develop competencies in daily living skills while practicing adaptive responses to interpersonal challenges and developing self-confidence. The goal of this type of approach is to support improved occupational functioning in the classroom and other school settings. Students’ behavioral improvements in occupational therapy task groups have been shown to generalize to the classroom and other contexts, thus winning the support of educators and administrators in the school.^1,148 Agrin speculated that the students’ future success in less restrictive settings could be predicted by the development of their social skills in the activity groups.¹

Students who are referred for occupational therapy services to address fine motor, perceptual, or orthopedic problems may also have social and emotional needs that impair academic performance. Case Study 13-5 exemplifies how one student’s multiple needs were addressed. General education teachers are working with increasing numbers of special needs children, including those who have educational diagnoses of emotional disturbance. Additionally, their classrooms include children who are not enrolled in special education, but who are troubled and preoccupied with acute and/or chronic life stresses such as poverty, community violence, and family turmoil. In some schools the majority of students are trying to learn despite a climate of constant crises in their homes and neighborhoods. Behavioral disruptions are frequent and educators feel endangered and unsupported. Occupational therapists are positioned to provide consultation to teachers who need ideas regarding environmental adaptation and group management and to help determine which students should be referred for occupational therapy or other related services evaluations. By educating and supporting teachers, therapists can have a positive influence on the school experiences of hundreds of children.

The School to Work Opportunities Act (1994) and IDEA (2004) both reflect the high priority placed on preparing students for gainful employment. Middle and high school students who have emotional and behavioral problems are considered by many to be among the most challenging to transition successfully into independent living and satisfying, economically sustaining work.^27,111,175 Although no universally successful means have been identified, research to date indicates that the most promising interventions include individualized planning that involves the student and parents. The intervention should also include social skills training and support, classroom education regarding work values and life skills, and actual work experience in positions where the fit between students and jobs is optimal.¹¹⁰ Age- and situation-appropriate occupations should be emphasized over performance components training, and environments should be structured to facilitate students’ success.^24,134 Occupational therapists are able to provide any and all of these interventions, and they can serve educational teams, as well as transitional planning specialists.

School-based occupational therapists do not consistently emphasize psychosocially oriented intervention.^12,30,123 On the basis of a review of the special education literature, Schultz concluded that teachers would welcome the kind of assistance that occupational therapists can provide in improving students’ social skills.¹⁴⁷ School administrators who are concerned about occupational therapists meeting the needs of the traditional referrals may initially be less encouraging. School-based therapists who are committed to providing holistic services need to educate and persuade colleagues regarding the potential effectiveness of occupational therapy approaches to help students meet central academic goals by developing essential skills needed for social participation. This may be approached directly through discussions with key administrators, in-services for teachers and related services professionals, program development, and case-by-case demonstration. Occupational therapists should advocate including psychosocial goals in students’ individual education programs. Trends in inclusionary and transitional education have created an atmosphere in which occupational therapy leadership in comprehensive holistic intervention approaches are needed and often welcomed. Examples of evidence-supported, activity-based interventions used by school-based occupational therapists in their work with students with emotional disturbances are listed in Box 13-2.

Mental Health Services

In the United States, mental health services for children and adolescents have been chronically underfunded, with the result that most young people who have mental disorders do not gain access to expert professional services.^{109,163,167,183} In 1992, Congress responded to this problem by authorizing the Comprehensive Community Mental Health Services for Children and their Families Program.¹⁶⁵ This program provides federal funding through demonstration grants to states and communities and is designed to develop and promote effective ways to organize, coordinate, and deliver mental health services and supports for children and adolescents and their families. Private foundations have joined in the effort, resulting in the coordination of multiple agencies within communities working together to provide innovative, client-centered, culturally appropriate services. A universal goal of contemporary community-based mental health services for children is to facilitate successful participation within the family, community, and school. Best-practice standards for children with severe and complex needs involve a “wraparound” planning and management process, in which the family and all involved care providers work closely together to ensure well-coordinated, comprehensive intervention.¹⁸³ Although few occupational therapists identify mental health settings as their primary site of practice, many practice in settings that participate in the coordinated care of young people with mental health problems.¹²⁶ These settings include early intervention services, day care programs, preschools, schools, and hospital-based outpatient clinics. Although most mental health centers and private practices do not include occupational therapists as part of their core team, occupational therapists can participate as valuable ad hoc members of the extended, community-based mental health team and as consultants. Understanding the forms and functions of contemporary mental health systems allows occupational therapists to engage effectively with the professionals working within the system and to join in providing coordinated care from a unique perspective.

Outpatient treatment is the mental health intervention most commonly accessed by children and adolescents.¹⁶⁷ Outpatient mental health services may be provided through freestanding clinics, hospital-based programs, publicly funded community mental health centers, health maintenance organizations, and private practices. Funding sources may include the clients’ families, private insurance, Medicaid, federal grants, and state monies.^102,118 An agency’s sources of funding influence the types of clientele served and the types of services provided.

Children and adolescents who seek outpatient mental health services often have significant behavioral disturbances that have caused moderate to severe levels of disturbance for family, school, or community members.¹⁰² The primary goals of outpatient mental health services are the diagnosis and management of mental health problems to improve functioning within the community and prevent crises necessitating hospitalization.

The child’s initial contact with an outpatient mental health practitioner—typically a social worker, psychologist, psychiatrist, or licensed counselor—consists of an intake interview exploring the nature and severity of the child’s and the family’s problems. Responses to the interview form the basis for decisions regarding appropriate evaluation and intervention. Possible dispositions include outpatient evaluation at a later date or crisis evaluation with immediate short-term intervention.

Frames of reference used in outpatient programs and practices vary, but they commonly draw from cognitive behavioral, behavioral, family systems, neurobiologic, and psychodynamic theories (see Table 13-3). Treatment approaches are most commonly goal-focused and time-limited and involve the family and school. Clients generally attend one or two 1-hour sessions per week for a specified period. In publicly funded mental health centers, payment for services is based on the individual’s income. Third-party payers have varied levels of coverage for mental health care. Therapeutic modalities commonly include play therapy (for young children), talking therapy, expressive art, therapeutic board games, group discussions, family discussions, and parenting education sessions. These programs can be staffed by a combination of psychologists, social workers, psychiatrists, psychiatric nurses, and licensed counselors.¹¹⁸

Day treatment programs and therapeutic schools are offered in a variety of settings, including psychiatric hospitals, community mental health facilities, and schools for students with special needs.¹⁴¹ Such programs provide a therapeutic level of intensity between outpatient intervention and hospitalization and are popular for clinical and economic reasons.⁵⁴ Clients typically attend programming from 4 to 6 hours per day, 5 days per week, and are at home during evenings and weekends.²¹ Interventions often include a variety of therapies, including occupational therapy and specialized academic classes.

Day treatment programs or schools can facilitate a child’s transition from the hospital back to the home and community, provide crisis stabilization, allow comprehensive evaluation, or serve as an intensive therapeutic alternative to outpatient or inpatient treatment.¹⁴¹ Programming often follows a psychoeducational model and may include vocational evaluation and training for adolescents.¹²⁸ A psychiatrist or psychologist who specializes in child and adolescent mental health or a special educator typically leads intervention teams. Other team members are listed in Table 13-3 and can include occupational therapists.

Occupational therapy activities in day programs can address academic, sensorimotor, daily living, and psychosocial goals. Crafts, role-playing exercises, cooperative action games, board games, cooking, sensorimotor interventions, and field trips are popular modalities in such occupational therapy programs. Hygiene and grooming, telephone and e-mail etiquette, how to order food in a restaurant, and other such daily living needs can be addressed. Working with the client’s parents, child care providers, teachers, job coach, or school-based occupational therapist can facilitate the transition from intensive day treatment programs to the community and public school and enhance the carryover of interventions and goals. The family may also benefit from assistance with locating and securing social and leisure resources. Case Study 13-6 describes how a consultative model of intervention can be used to assist with the transition of a client from day treatment back to full community involvement. The focus in this example is on educating and problem solving with personnel from another agency.

Residential Treatment Centers

About 3% of children and adolescents receiving state-funded mental health services utilize residential treatment centers, facilities providing around-the-clock care.¹⁶⁵ Residential care is highly restrictive and costly and is typically utilized only when other means of intervention have failed. Lengths of stay in residential treatment centers vary from weeks to years and are influenced by funding constraints, the facility’s philosophy, and the needs of the client and family.¹⁵⁵ Program philosophies range from highly institutional to more naturalistic and homelike environments, and some facilities provide educational programs on-site. Residential treatment centers vary in size from tens to hundreds of residents. The most common reasons for placement are aggressive behaviors toward self or others, mental disorders with severe and persistent symptoms, lack of family supports, and abuse. More than half of the children admitted into residential care come from other congregate care settings, such as acute care hospitals, juvenile corrections, foster homes, and other residential care centers.³

The immediate mission of residential care programs is to provide a safe and therapeutic environment for children and adolescents whose behavioral, emotional, and social problems preclude their safety and competence in the community.¹⁵⁶ The intended outcome of residential care is for children and adolescents to function as full participants within the community and family, foster family, transitional living, or independent living settings. Experts in the area of residential care assert that treatment may include individual, group, and family therapy sessions. To be meaningful, therapeutic intervention must continue in the everyday experiences of children as they interact with child care staff and their peers.^14,52,156 The effectiveness of intervention is determined by the skills of the therapeutic, educational, and childcare staff in building relationships, managing children’s behavior, and structuring leisure and work activities.^48,162

Staffing reflects each residential care facility’s philosophy and target populations. All residential care facilities employ childcare workers who are paraprofessionals with various levels of expertise. Other team members include psychiatrists, psychologists, social workers, nurses, teachers, and “therapeutic activities personnel,” who may include occupational therapists.³ Some residential treatment facilities may contract occupational therapy services that can include consultation to the house staff regarding the residents’ developmental needs and limitations, ways to organize and guide household responsibilities to include the residents, and ways to teach residents self-care and community living skills (Case Study 13-7). Other occupational therapists provide services within the residential centers’ school programs, addressing goals related to academic and social performance. Frames of reference often used in residential care include cognitive behavioral, behavioral, psychodynamic, and psychoeducational approaches.^89,156 Children who live in even the most deluxe institutional settings do not have access to many occupational experiences that are a part of the daily activities for children in family homes and the community. At this time, occupational therapy is not a mandated service as determined by accreditation standards for residential care facilities. Published literature describing or testing the effectiveness of occupational therapy within residential care facilities for children is minimal. As a member of a small community of practitioners who have provided occupational therapy in residential care for more than 10 years, this author asserts that occupational therapy can have a tremendous impact on the quality of life and effectiveness of residential treatment in preparing children and adolescents for successful transitions to lives in the larger community. Direct intervention with the children and adolescents in residential care can include many of the goals and approaches outlined in the discussion of occupational therapy in day treatment programs. Additionally, occupational therapists can facilitate the resident’s participation in community activities such as shopping, playing sports, participating in activity clubs, and attending church. Opportunities for as much family interaction as possible during such activities increase the benefits of such experiences.^93,155

Juvenile Corrections

The more than 100,000 children and adolescents who are housed by the juvenile justice system share many of the needs of those in residential treatment centers and represent another underserved group with serious psychosocial and occupational needs.⁸² Youth who have been incarcerated for committing crimes often have serious emotional disturbances that have not been addressed therapeutically.⁸ In a review of the literature on juvenile detention, Goldstrom and colleagues estimated that up to 95% of youth in the juvenile justice system have mental, emotional, or behavioral health problems, 20% of these with severe mental disorders.⁶⁵ Those incarcerated are completely removed from the home and community and lack opportunities to gain or maintain skills they need to reintegrate into the community on release. Boredom and hopelessness can contribute to antisocial behavior within the facility, posing a danger to the prisoners and staff. Most correctional institutions for youth provide traditional psychotherapeutic care but not rehabilitation-focused care.⁸² Occupational therapists should be involved in the comprehensive psychiatric and functional evaluations of children and adolescents who are either under consideration for psychiatric commitment or who are to be tried as adults. They can provide therapeutic services to address their psychosocial and daily living skills needs and help to educate staff members about the developmental and neurobehavioral issues that this group shares. Youth offenders who are enrolled in diversional programs or who are being treated in state or other psychiatric facilities would be good candidates for occupational therapy.

Inpatient Psychiatric Hospitals

Inpatient psychiatric hospitals provide the most restrictive, intensive, and costly therapeutic intervention.¹⁶⁷ They are used for children and adolescents who pose a serious safety risk to themselves or others, have complicating medical conditions, or require specialized teams for rapid diagnosis and stabilization.¹³⁸ Very often individuals are hospitalized when in crisis, such as after a suicide attempt, an assault, or a psychotic episode. Sometimes patients are admitted for comprehensive psychological and medical evaluation of complex chronic problems. Due to the high cost of inpatient care, lengths of stay are brief, with a range of 2 to 27 days and a median of 4.5 days.²⁸

Inpatient psychiatric units may be found in general hospitals, state psychiatric hospitals, and private psychiatric hospitals. Child and adolescent inpatient psychiatric units are usually locked facilities that are directed by a psychiatrist and staffed by nurses and paraprofessionals who are trained in the care and management of severely impaired patients.⁴⁷ The treatment team is interdisciplinary and may include psychiatrists, nurses, paraprofessional direct care staff, psychologists, neuropsychologists, and social workers. The professional staff apply a variety of psychosocial theories, with neurobiologic and cognitive behavioral approaches among the most commonly used. Due to brief lengths of stay, occupational therapists are rarely part of the core intervention team in acute care psychiatric units for children and adolescents. An occupational therapist may be brought in to contribute to the developmental, neurodevelopmental, and functional evaluations for severely impaired patients.

The case examples presented throughout this chapter depict a number of ways to intervene with children and adolescents who have psychosocial problems. The following section outlines occupational therapy evaluation and intervention options more specifically and in more detail.

Evaluation

The evaluation process is foundational to the intervention process and largely determines its success. Evaluating children who exhibit behavioral problems can be challenging, due to the complex nature of the task and the fact that the child may be unable to cooperate with traditional assessment approaches. As much information as possible should be gleaned indirectly from past and current school or medical records. Evaluating therapists can learn a great deal from teacher and parent checklists and naturalistic observations in typical contexts, such as various settings within the school, home, institution, and community.

The evaluation process begins with an occupational profile that includes an occupational history, the client’s perceptions of current occupational functioning, the client’s concerns about occupational performance, and priorities for intervention.⁴ A thorough occupational profile includes information about the person, environment, and occupations. The occupational profile may be obtained through informal interviews or with the assistance of a structured interview such as the Canadian Occupational Therapy Performance Measure.¹⁰⁵ An interview or paper-and-pencil activity may be used to gain an understanding of the child’s habits and balance of activity. Some children are better able to express their concerns and hopes for the future in pictures. For them a large piece of paper and some colorful markers or crayons, along with an invitation to “draw a picture of yourself doing something” or “make a picture of some things you want to be doing next month” may give the therapist and the child a way to begin their dialog. The purpose of beginning the evaluation process with an occupational profile is to obtain a sense of the scope and immediacy of issues concerning the client. For occupational therapists working with children, the “client” includes the referring adult, who could be a parent, a teacher, a foster parent, or some other closely involved person. When the child is very young, has limited functional communication, or is being seen in the context of school, the occupational profile should include information from the involved adults. This information will guide decisions about subsequent steps in the evaluation process and help with formulating intervention goals and methods, facilitating their efficiency and quality.

In school settings, a pre-assessment checklist for teachers to complete prior to evaluation can help to define issues of concern and inform teachers about the scope of occupational therapy (Figure 13-2). This tool is designed with items related to written schoolwork listed first, and cast with a positive slant (“Works independently on written assignments”). The last 12 items relate more to cognitive and social performance, and the items are cast from a more problem-oriented perspective (“Has difficulty learning new motor tasks”). Teachers rate the consistency of performance and then may write in specific concerns. The results can help to target areas of strength and possible limitations that require further evaluation.

One of the most valuable assessment methods with children and adolescents who have social participation problems is to observe them interacting with peers or family members during motivating activities such as crafts, board games, or preparing and enjoying food.¹³³ During such sessions the therapist can see the child in action as she responds to opportunities to initiate interactions, make choices, share opinions, request help, try something new, cope with competition or conflict, and other typical demands of social participation. The activity-focused session can also allow observations of performance areas, such as functional reading, planning and organization, safety awareness, concentration, problem solving, postural control, or small tool use. If the session includes classmates, family members, or others with whom the child relates at home or school, information about the child’s social environment is also gathered.

An evaluation of play can provide invaluable, multifaceted information about a child’s social, emotional, cognitive, and motor development and addresses a critical area of occupational performance. Assessments for this purpose include structured observational measures, such as the Preschool Play Scale^94–96 or the Test of Playfulness.¹⁵² Florey and Greene outline an activity observation guide to facilitate practitioners’ evaluation of play in children aged 6 to 12 years.⁵⁷

The Social Skills Rating System was developed by psychologists to evaluate and classify social behavior in students from kindergarten through 12th grade.⁶⁶ There are three versions of the protocols, each for a different grade range. Through a combination of teacher, parent, and student (self-) rating scales, this tool measures perceived performance in the domains of social skills, academic competence, and problem behaviors. The 30 social skills scale items are stated in positive terms (e.g., “Initiates conversation with peers”) and include items indicative of cooperation, assertion, responsibility, empathy, and self-control. Respondents are asked to rate the items in terms of frequency and importance. The problem behavior items, answered only by parents and teachers, classify behaviors as externalizing (behaviors that are intrusive or disruptive), internalizing (behaviors reflecting anxiety or sadness), and hyperactivity. The Social Skills Rating System results are easily translated into intervention and individualized education plan goals and objectives.

The School Function Assessment (SFA) is an observational assessment that assists with the evaluation of school performance of students with disabilities.⁴³ It is administered as a paper-and-pencil form that can be completed by the occupational therapist, child’s teacher, and others who know his school behavior well. It is followed by a structured interview that elaborates on the written responses. More than 100 items on the SFA pertain to social participation in categories of functional communication, memory and understanding, following social conventions, compliance with adult directives and school rules, task behavior/completion, positive interaction, behavior regulation, and safety.

The Occupational Therapy Psychosocial Assessment of Learning (OTPAL) uses a combination of observation and interviewing to evaluate students’ psychosocial abilities as they relate to their specific school environment.¹⁶¹ This assessment is designed for children in elementary school who have been identified as having social participation difficulties.

Standardized assessments of skills, such as measures of the child’s fine and gross motor abilities, developmental levels, handwriting, sensory integration, and cognitive-perceptual abilities, should be employed as needed for intervention planning. Some standardized assessments such as the Miller Function and Participation Scales¹²² include behavioral checklists that provide valuable insight from the parent’s or teacher’s perspective.

General guidelines for the structured evaluation of students who may resist following directions are:

Intervention

If it is to be meaningful and effective, intervention with children and adolescents who have social performance problems must include goals that directly address these concerns. These goals should relate directly to the contexts and activities in which the child needs and wants to participate. Examples of such goals are presented next for James, a 10-year-old who wants to participate in the general physical education classes but has struggled with frequent behavioral “meltdowns” and noncompliance. The intervention team has designed the following goals:

Contemporary models of occupational therapy emphasize interventions using activities within their natural contexts.^4,106 In order to be optimally therapeutic, activities must

Schultz described such an approach with boys who have been classified with behavior disorders in school, using the model of Occupational Adaptation (Research Note 13-1).^147,148

In contrast with the environmentally focused approach of Occupational Adaptation, other interventions may be occupation-focused in which the therapists provide highly structured activities. For example, behavioral methods such as point- or token-reward systems may be incorporated into activities-based therapy (Case Study 13-8). This type of operant behaviorism has been well researched and found to be effective in promoting new skills.¹³⁹ However, operant behavioral approaches have been criticized by some because they take power away from the naturalistic environmental influences and the child’s learning and place it more on the artificial rewards and the therapist.^148,170 Ideally, operant behavioral methods, if used at all, are temporary facilitators for children who have learned to get their needs met through unacceptable behaviors and who can quickly learn adaptive behaviors, given a temporary reward that is then faded as the naturally occurring social rewards become available.

A more socially based behavioral approach is that of rational intervention (RI), a cross-disciplinary decision making system that assists those interacting with children and adolescents with the clinical reasoning needed to make immediate responses that facilitate social participation (Table 13-4).⁴⁹ The primary goal of RI is to help children attain and maintain behaviors that are adaptive and appropriate for participation in natural contexts and to create a consistent approach that supports this for all staff members and adult family members who interact with the child. General principles of RI are as follows:

When using an RI approach, the therapist initially observes and assesses the child’s behavior and then classifies it as belonging in one of three color-coded zones (Case Study 13-9). Green zone behaviors are adaptive and would be acceptable in most community and home settings. Yellow zone behaviors are mildly to moderately problematic and require monitoring, environmental modification, or cueing to facilitate adaptive social behavior. Red zone behaviors present a threat or actuality of danger to the child or others and require direct and immediate verbal or physical management. Therapeutic responses include facilitation, monitoring, gentle correction, moderate correction, and strong correction and may be incorporated into therapy sessions and all social participation contexts (Box 13-3).

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