PROTOCOL: Personal assistance for children and adolescents (0‐18) with intellectual impairments

The International Classification of Impairments, Activities, and Participation (ICIDH-2) refers to impairment as loss or abnormalities at the level of body, body part or organ. People may have difficulty performing particular activities as a result of impairments, and a person's participation in education, social life, work, and other areas may be limited as a result of interactions among impairments, activities, and environment (WHO 2003). Though the ICIDH-2 refers to adults, except with reference to studies using specific definitions of other terms, this review follows the classification in ICIDH-2, which does not include the terms disability or handicap. This review will include children and adolescents with intellectual impairments, which include learning impairments (e.g., Down's syndrome, global developmental delay, or pervasive developmental disorder), learning disability (also called ‘intellectual disability’ or ‘mental retardation’) and acquired brain injuries. Intellectual impairments and physical impairments affect activities and participation differently; interventions would aim to achieve different outcomes. Therefore, young people with physical impairments or both physical impairments and intellectual impairments will be considered in other Cochrane and Campbell reviews, as will working-age adults and older adults. Around the world, about six hundred million people have impairments (UN 1990), most of whom live in the developing world. Previous reviews have identified inconsistencies in the measurement of impairments and activity limitations (UN 1990) and cross-national estimates of impairments and activity limitations in childhood and adolescence are even more variable than national estimates. The prevalence of intellectual impairments is difficult to quantify due to problems in diagnosis and classification. Most children and adolescents with intellectual impairments have mild to moderate impairments. Relatively few have ‘profound’ impairments (DSM-IV R). Over five million (10.6%) American children and adolescents experience a limitation in learning ability; respectively, about 4.0% and 3.2% have moderate and severe limitations (Hogan 1997). Gross rates of impairments in the United States (U.S.) have increased substantially in recent decades as a result of an aging population that is living longer and, more recently, as a result of higher reported levels of impairments among children and young adults (Kaye 1996). Recent increases in the prevalence of impairments among children and adolescents may be a result of changes in medical care. For example, very low birthweight babies are more likely than ever to survive (Alberman 1991; Allen 1993; Doyle 1995). These children are at high risk of both physical impairments and intellectual impairments (Middle 1996; Williamson 1983; Wilson-Costello 2005). Over six million (12.3%) American children and adolescents experience some type of functional limitation (as defined by (Hogan 1997)). Of the four million American children and adolescents who experience one serious functional limitation, about half experience one or more other functional limitations. About one million American children and adolescents experience serious limitations in two or more areas (Hogan 1997). Impairments are more prevalent in boys than in girls (Newacheck 2004) and more prevalent in low-income families than in high-income families (Newacheck 2004; UN 1990). Of non-institutionalised children and adolescents aged 5-17, 1.3% experience limitations in mobility and about .2% experience a moderate or severe limitation in mobility. Respectively, .9% and .5% experience limitations in self care; 5.5% and 1.2% experience limitations in communication (Hogan 1997). About 3.2% of American children attend special schools or classes (Wenger 1995). As far as possible, this review uses internationally accepted definitions of impairments and refers to impacts that are likely to occur across cultures. However, many epidemiological studies have been conducted in the United States and Western Europe. Readers should consider the applicability of epidemiological data to other settings. A discourse of disability ethics has evolved to discuss concepts of independence, defined not as people with disabilities “doing everything” for themselves, but as having maximum control over how help is provided (Morris 2001). Proponents of the social model of disability regard activity restrictions as caused by societal and structural barriers and stress the need for their removal (Abberley 1987; Oliver 1990). In addition to structural and environmental changes (e.g., allowing sufficient time between activities for children with impairments to toilet), the social model emphasises changes in public attitudes towards impairments to encourage increased participation and improved self-esteem. Participation in age-appropriate activities may be limited for children and adolescents with impairments when social and attitudinal environments restrict their involvement (Hammal 2004; Mihaylov 2004). Impairments in children are related to societal limitation, and different types of impairments contribute uniquely to societal limitations (Hogan 1997). Impairments may affect the quality of life, health, development, and family functioning of children and adolescents (Neely-Barnes 2004; Pit-Ten 2002; Varni 2005). Limited participation in activities may have negative impacts on the mental and physical functioning of children and adolescents and may lead to emotional and behavioural problems. Children and adolescents with intellectual impairments are at increased risk for mental health problems; however, most children and adolescents who might benefit from psychological services do not receive them (Witt 2001). Comorbid problems can also impact carers. For example, challenging behaviour often occurs in the context of learning impairments and mental health problems (Moss 2000). Parents and siblings of children with impairments are at risk for psychological problems (Rossiter 2001; Sharpe 2002; Thyen 1998). Total healthcare costs for children and adolescents with impairments may be four times greater than for those without impairments (Newacheck 2004). However, children and adolescents with impairments require varying degrees of support. For example, in one large study, ‘those in the upper decile of the expenditure distribution accounted for 65% of all charges’. Costs born by families of children and adolescents with the most severe impairments were similarly high; out-of-pocket healthcare expenses (i.e. those not reimbursed by insurance or a health service) for the top 10% of the distribution accounted for 85% of all out of pocket expenses (Newacheck 2004). All children and adolescents require some level of care. However, children and adolescents with severe impairments may require many hours of assistance every day in addition to the normal assistance required by their peers. Consequently, family members (notably mothers) may withdraw from work and social life. Caring for a child with severe impairments can put great financial and emotional stress on parents and families (Neely-Barnes 2004; Witt 2001). In the U.S., parents of children with impairments are less likely to have attended college and more likely to be single and poor (Hogan 1997). The stress of caring for children with impairments may have negative impacts on parents, but some problems associated with impairments may increase the risk of impairment. For example, poor children are less likely than their peers to receive preventive healthcare (Newacheck 1988) and depressed mothers are less likely than other mothers to use injury prevention strategies like car seats and electrical plug covers (McLennan 2000). Furthermore, some evidence suggests that the development of intellectual impairments is affected by sociodemographic factors (Resnick 1998). Low birthweight black babies are more likely than white babies to survive (Morse 2006), which might affect the relative prevalence of impairments in different racial groups; however, ‘controlling for socioeconomic differences and family structure, black children are no more at risk of functional limitation than whites’ (Hogan 1997). Since the causes and consequences of impairments are often difficult to disentangle, retrospective studies are difficult to interpret. Increased participation (inclusion in activities of daily life) may have positive effects on the social functioning, development, and health of children and adolescents. There are many ways to increase participation by children and adolescents with intellectual impairments. For example, social activities may be designed such that children and adolescents with intellectual impairments can engage in age-appropriate activities with their peers. Clinicians and policymakers can work together to influence policy, discourse, and planning and to apply the social model in support of children and their families (Colver 2005). However, broad interventions may not be sufficient to meet all needs. People with severe impairments require interventions tailored to their unique impairments, lifestyles, living arrangements, etc. Skills training, education, and human support help young people control their lives appropriately and engage in normal activities. Personal assistance is support given to children and adolescents with impairments living in normal housing (e.g. family homes or school accommodation) to enable them to participate in mainstream activities in various settings. Personal assistance is directed by users and their representatives and is designed to promote independence and to reduce strain on families. Assistants might help with bathing, dressing, moving around during the day, shopping, etc. Personal assistance is provided by non-professionals; it may aim to improve health, but it differs from services by professional healthcare providers (e.g., nurses) with whom users have very different relationships. Personal assistance may be purchased by governments, insurance providers, or individuals. It may be provided directly or indirectly through payments or vouchers. Personal assistance differs from voluntary or charitable services over which users do not have the same control. It also differs from respite care, which is temporary and aims to help carers rather than individuals with impairments. Personal assistance is designed for people whose participation in many normal activities would be impossible without help. While user needs should be assessed periodically, personal assistance is designed for people with permanent impairments. For example, the needs of a person with a recently acquired impairment might be different from the needs of a person who has had an impairment from birth and the needs of both might change; personal assistance would be designed to meet their unique needs and would develop with them. In this way, it differs from rehabilitative services and from services provided for fixed periods of time. Receipt of personal assistance is dependent on the amount of help required by an individual. For example, personal assistance in Nordic countries is generally provided to people requiring at least 20 hours of help per week, though most users have severe impairments and both require and receive substantially more assistance. Some form of personal assistance is now available (often by statutory right) in all Nordic countries, most Western European countries, Australia, parts of Asia, Canada, and the U.S. Services in different countries for different users are called by different names, which often relate to legislative categories rather than types of interventions. Eligibility varies around the world. For example, countries that see services for adults as a ‘right’ may not be able or willing to provide comprehensive services for children and older adults. Services for people of different ages may be provided through different mechanisms. Rules about who may be a personal assistant also vary. For example, some countries allow users to employ family members (e.g., parents) while others do not. Differences in eligibility affect the number and types of people who receive support and these differences affect the amount and types of support individuals and their families receive. That is, the relative number of people receiving personal assistance and their characteristics vary across countries, insurance schemes, etc. Advocates of personal assistance argue that personal assistants should be chosen, trained and managed by users or their representatives. However, the organisation of services and the degree of user control varies around the world and may be affected by the administration of payments, employment laws, etc. Compared to other interventions, personal assistance may have unique benefits and potential drawbacks. Assistants may increase social participation for many people, but having a personal assistant could be stigmatising. Parents of children with impairments might be relieved to have assistants help care for their children, but assistants might interfere with family life and with users’ need for privacy, or with parents’ own needs to see themselves as adequate carers for their children. Even if personal assistance is clearly preferred over other services by working adults with physical impairments, groups that are underrepresented in the public discourse about the rights of people with impairments (e.g., children, older adults, people with intellectual impairments, and people in rural areas) may prefer other services, particularly since these groups may be more susceptible to abuse and less able to manage employees. Direct payments for personal assistance may not be ideal for children and families who have difficulty finding an assistant, administering services, negotiating or giving instructions (Pijl 2000). While many personal assistants are managed by users or their representatives, the nature of personal assistance can make it difficult to separate the roles that individuals play in supporting people with impairments. For example, Askheim identified one mother of a child with intellectual impairments in Norway who acted both as the manager of her child's payments and as a full-time personal assistant (Askheim 2003). Policies that permit different care arrangements may have substantially different impacts. As the personal assistance movement gained strength, Ratzka noted that ‘there has been surprisingly little in the way of policy evaluation. The work that has been done in this area is restricted to gathering descriptive statistics on number of hours provided by one type of service, number of consumers, staff, and expenditures’ (Ratzka 1986). Some research now suggests that personal assistance may meet otherwise unmet needs of people with impairments. Shortly after its introduction, a survey of direct payment recipients in the UK found that 40% had a need for additional hours of personal service while 80% of people receiving other services had a similar need (Zarb 1994). However, traditional reviews have failed to locate many evaluation studies and have not offered a definitive account of international research on personal assistance. 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