PROTOCOL: Personal assistance for adults (19‐64) with both physical and 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). 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 adults (19-64) with both physical impairments (e.g., polio or paralysis) and intellectual impairments, which include learning impairments (e.g., Down's syndrome or autism), learning disability (also called ‘intellectual disability’ or ‘mental retardation’) and acquired brain injuries. Intellectual impairments and physical impairments affect activities and participation differently. Therefore, adults with physical impairments only will be considered in other Cochrane and Campbell reviews, as will children 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). in 2003, the European Year of People with Disabilities, a survey found that 16% of Europeans between 16 and 64 have a long-standing health problem or impairment and 5% of Europeans have a ‘very severe’ long-standing health problem or impairment (Dupré 2003), but variability in responses across nations suggested that people in different countries interpreted and responded to a standardised questionnaire differently (Dupré 2003). As is likely to be true in any developed country, the incidence of impairment in America is highest among adults between 19 and 64 years, but the rate of impairment among working age adults is much lower than the rate among older adults (50% versus 17%) (CDC 2001a). Though the working adult population is larger than the older adult population, most impairments are acquired with age. For example, the vast majority of Europeans with impairments or long standing health problems (82%) acquired their impairment after birth (Dupré 2003). 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). However, population estimates in the U.S. and other censuses do not usually indicate the prevalence of severe impairments. Among Americans over 18 years, arthritis and back problems are the most common types of impairments (18% and 17% respectively; [CDC 2001b]). Causes of severe limitations are less frequent, including what is still recorded as ‘mental retardation’ (2%), head or spinal cord injury (1%), paralysis (0.8%) and missing limbs (0.7%; [CDC 2001b]). Americans who report difficulty with activities of daily living (8 million) represent only a quarter of those with some functional limitation (32 million; [CDC 2001b]). About 2% of Americans between the ages of 18 and 65 (3.5 million) report some difficulty with activities of daily living (CDC 2001b). About 0.3% of working age adults (0.5 million) report difficulty eating (CDC 2001b); people who have difficulty eating are most likely require assistance and to have severe impairments (LaPlante 2002). About 0.8% of Americans of the same age (1.4 million) report mental retardation in the U.S. 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., making buildings accessible), the social model emphasises changes in public attitudes towards impairments to encourage increased participation and improved self-esteem.. Participation in activities may be limited for adults with both physical impairments and intellectual impairments when physical, social and attitudinal environments restrict their involvement in activities in which they wish to take part. For example, about 11% of older working age Americans are unable to work and about 7% experience limitations in their work (Kaye 1996). Roughly 3% of younger working age Americans are unable to work and about 3.5% are limited in the amount or kind of work they can perform (Kaye 1996). Limited participation in activities may have negative impacts on other areas, including mental and physical health. In the U.S., more than 13.2 million adults living in the community received assistance in activities of daily living (ADLs) or instrumental activities of daily living (IADLs) in 1996. Of those, most received help with only IADLs (which include items like using a telephone, preparing meals, and grocery shopping) and received 16.3 hours of assistance per week; people requiring assistance with ADLs received 57 hours of help per week. Caring for a person with impairments can be stressful, particularly for relatives (often parents). Comorbid problems can also impact carers. For example, challenging behaviour often occurs in the context of learning impairments and mental health problems (Moss 2000). Most recipients of assistance are female (65%) and less than a quarter receive paid assistance (LaPlante 2002). More than 20 billion hours of assistance are provided each year in the U.S., estimated to be worth $200 billion at 1996 prices (LaPlante 2002). Increased participation (inclusion in activities of daily life) may have positive effects on social functioning, happiness and physical health. There are many ways to increase participation by adults with physical and intellectual impairments. For example, building codes may require that people who use assistive devices can access offices and meeting places. Clinicians and policymakers can work together to influence policy, discourse, and planning and to apply the social model in support of adults with physical and intellectual impairments (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. Assistive devices, skills training, physical therapy, education, and human support help people control their lives appropriately and engage in normal activities. Personal assistance is support given to adults with impairments living in normal housing (e.g., family homes) 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 and carers. 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 mental and physical 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 with physical impairments as a ‘right’ may not be able or willing to provide comprehensive services for children or for adults with intellectual impairments. 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. In the U.S., authors note high turnover rates, low wages, and lack of training as potential problems (Keigher 2000). Families of people with physical and intellectual impairments might be relieved to have assistants, but assistants might interfere with users’ need for privacy. People with learning impairments leaving institutions in favour of community living may prefer the latter, but they describe important positive and negative aspects of relocation (Barber 1994) that should be considered when designing and evaluating interventions. Furthermore, institutionalisation may reduce risk of mortality for people with intellectual impairments (Strauss 1998). Even if personal assistance is clearly preferred over other services by many working adults, groups that are underrepresented in the public discourse about the rights of people with impairments (e.g. people who experience communication difficulties and people living 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 people who have difficulty finding an assistant, administering their services, negotiating or giving instructions (Pijl 2000). ‘Many people requiring personal assistance in one form or another do not want and/or are incapable of assuming complete control over service delivery’ (Nosek 1991). 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). Similarly, partners of adults with impairments might have mixed roles. 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. A recent report by the Swedish National Board of Health and Welfare (Socialstyrelsen 2005) highlighted the need for a sensitive and exhaustive search for trials and a systematic synthesis of existing studies (Socialstyrelsen 2005). To assess the effectiveness of personal assistance for adults (19-64) with both physical and intellectual impairments, and the impacts of personal assistance on partners, families and carers, compared to other interventions. Randomised controlled trials, quasi-randomised controlled trials and nonrandomised controlled studies of personal assistance compared to other forms of support or to ‘no-intervention’ (which may include unpaid care) in which to groups and in which control with (19-64) living in the community who require assistance to perform of daily living to permanent physical and intellectual impairments disability or acquired brain the of people living in (e.g. or adults living their (e.g., in or public institutions for people with will be People with physical impairments only and people with intellectual impairments only will be these impairments affect activities and participation differently. Personal assistance is paid human support that is designed to promote participation of people with permanent impairments. 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