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I’m a retire neuropsychologist. Here’s a site with some basic info on executive dysfunction. It can occur for a number of reasons, including birth defect, brain damage from stroke or head injury, and dementia.https://www.headway.org.uk/media/2801/executive-dysfunction-after-brain-injury-factsheet.pdfI’ve pasted some of its contents here. Sorry the formatting didn’t remain. It’s now one long paragraph. Follow the link for a far more readable version.“Executive dysfunction is a term for the range of cognitive, emotional and behavioural difficulties which often occur after injury to the frontal lobes of the brain. Impairment of executive functions is common after brain injury and has a profound effect on many aspects of everyday life. This factsheet explains what executive functions are, why they are so important and which part of the brain is responsible for controlling them. It then provides an overview of the causes, effects, assessment and rehabilitation of executive dysfunction. Some general coping strategies are also suggested to help brain injury survivors to compensate for impairments. Executive functioning is an umbrella term for many abilities including: Most of us take these abilities for granted and we effortlessly perform extremely complex tasks all the time in our everyday lives. Let us consider, for example, the role of some executive functions in a ‘simple’ activity like cooking a meal: Motivation - Wanting to make a nice meal and making the decision to start doing it. Introduction Executive dysfunction after brain injury What are executive functions?  Planning and organisation  Flexible thinking  Monitoring performance  Multi-tasking  Solving unusual problems  Self-awareness  Learning rules  Social behaviour  Making decisions  Motivation  Initiating appropriate behaviour  Inhibiting inappropriate behaviour  Controlling emotions  Concentrating and taking in information Headway’s publications are all available to freely download from the information library on the charity’s website, while individuals and families can request hard copies of the booklets via the helpline. Please help us to continue to provide free information to people affected by brain injury by making a donation at Donate. Thank you. © Headway - the brain injury association, 2011 2 Planning and organisation - Getting all the ingredients and thinking about the right times to start them cooking so they will be ready at the same time. Monitoring performance - Checking the food is cooking properly and the water isn’t boiling over. Flexible thinking - Lowering the heat if the food is cooking too quickly or leaving it longer if it is not cooked. Multi-tasking – Washing the laundry and putting it out to dry, while still remembering to attend to the food at the right times. These complex skills require advanced brain functions. The brain areas involved are described in the next section. Executive functions are controlled by the frontal lobes of the brain. The frontal lobes are connected with many other brain areas and co-ordinate the activities of these other regions. They can be thought of as the conductor of the brain’s orchestra. Injury to the frontal lobes is the most common cause of executive dysfunction. Occasionally, damage to other brain areas which are connected to the frontal lobes can also impair executive functions. The frontal lobes cover a large part of the front of the brain, directly behind the forehead. The diagram below shows their location: Which part of the brain controls executive functions? 3 The frontal lobes can be damaged by any form of acquired brain injury, such as stroke, tumour, encephalitis and meningitis. They are particularly vulnerable to traumatic brain injury, due to their location at the front of the brain and their large size. Even a blow to the back of the head can cause frontal lobe injury because the brain is knocked back and forth in the skull and the frontal lobes bang against bony ridges above the eyes. The importance of executive functions is shown by the difficulties caused when they don’t work properly. Since the executive functions are involved in even the most routine activities, frontal lobe injuries can lead to deficits in cognitive (thinking) skills, personality and social behaviour. The most common effects of executive dysfunction are summarised in the table below: What is executive dysfunction? Difficulties with motivation and organisation  Loss of ‘get up and go’, which can be mistaken for laziness  Problems with thinking ahead and carrying out the sequence of steps needed to complete a task Rigid thinking  Difficulty in evaluating the result of actions and reduced ability to change behaviour or switch between tasks if needed Poor problem solving  Finding it hard to anticipate consequences  Decreased ability to make accurate judgements or find solutions if things are going wrong Impulsivity  Acting too quickly and impulsively without fully thinking through the consequences, for example, spending more money than can be afforded Mood disturbances  Difficulty in controlling emotions which may lead to outbursts of emotion such as anger or crying  Rapid mood changes may occur, for example, switching from happiness to sadness for no apparent reason Difficulties in social situations  Reduced ability to engage in social interactions  Finding it hard to initiate, participate in, or pay attention to conversations  Poor judgement in social situations, which may lead to saying or doing inappropriate things Memory/attention problems  Finding it harder to concentrate  Difficulty with learning new information  Decreased memory for past or current events, which may lead to disorientation 4 You may hear different names for these symptoms. They are commonly referred to as executive dysfunction but many people use the term ‘dysexecutive syndrome’ or simply ‘frontal lobe problems’. They are sometimes referred to as a syndrome because several of the symptoms usually occur together. It is important to remember that not everyone with executive dysfunction experiences all of these problems. The symptoms can range from subtle effects, which only close friends and family members may notice, to extreme and problematic behaviour. It is often hard for people with frontal lobe injuries to explain the difficulties they are experiencing, often because they may be unaware that their behaviour is inappropriate. Their behaviour may appear to be very anti-social and can be misunderstood as depression, lack of motivation, selfishness, or aggression. Relationships with others may be negatively affected as a result. Executive functioning problems may also have a significant emotional impact and can lead to feelings of frustration, exhaustion, embarrassment and isolation. It can also be very difficult to return to work due to problems with multi-tasking, organisation and motivation. An inability to prioritise and complete tasks also makes working life difficult. It is important to be aware of the fact that these behaviours occur as a result of brain injury and are not intentional. Specialised input from rehabilitation specialists, such as neuropsychologists and occupational therapists, can help to compensate for the problems. The following sections of this factsheet provide an overview of assessment and rehabilitation, before providing some practical coping strategies. The initial assessment of executive functioning after brain injury will usually be carried out by a clinical neuropsychologist. The assessment provides detailed information about an individual’s cognitive, emotional and behavioural deficits. The results can then assist in planning rehabilitation strategies to manage the problems. During an assessment, the neuropsychologist will consider the following questions:  What are the main problems for the individual and their family?  How do the problems affect functioning in everyday life?  What are the person’s goals and can they go back to work/college/school? The effects of executive dysfunction on day-to-day life Assessing executive dysfunction 5  To what extent are the executive deficits related to other problems in areas such as language, memory and perception?  How do the person’s abilities compare with others of the same age, background, gender and with injury to a similar area of the brain?  How are the person with brain injury and their family coping?  What kind of rehabilitation should be offered? Neuropsychological assessments involve a range of different standardised tests, which are designed to measure different aspects of cognitive functioning. Some of these tests are in a questionnaire, puzzle or game format, while others take place in a real-world environment. It is very important that the tests are completed without prior knowledge or preparation in order for them to accurately reflect an individual’s abilities. For that reason, no details of specific tests are included here. It is important to remember that there are no passes or failures in the assessments. They simply provide an indication of areas that need help and rehabilitation, so there is no need for people to worry about their performance but simply to complete the tasks as best they can. Rehabilitation of executive dysfunction can be challenging and requires an individualised approach to treatment. The rehabilitation programme for each patient will depend on their goals, the nature of their difficulties, self-awareness, readiness to engage in treatment, level of social support and presence of other issues such as mood disturbances. An important part of the rehabilitation process is educating the person about the effects of their injury. This can help increase the person’s insight and understanding of what has happened. For that reason, reading this factsheet or other Headway information materials (such as Headway’s factsheet Lack of insight after brain injury) may be helpful for both survivors and their family members. If you feel that you or someone you know would benefit from rehabilitation then the first step is to ask a GP if a referral is available, preferably to a neuropsychologist initially. If there are no NHS referrals available then it may be possible to visit someone in private practice. For more information on this subject see the Headway booklet Rehabilitation after brain injury. Also, the Headway helpline can talk you through the referral process and signpost you to organisations that can help. Contact details are at the end of this factsheet. Rehabilitation of executive dysfunction 6 Because executive functions are such a vital part of our everyday lives, it is important to find ‘survival strategies’ when problems arise. Here are a few suggestions of strategies that may help if you have difficulties yourself: Planning  Allow yourself plenty of time to plan activities and record your plans, using as many aids as you find helpful (such as calendars, diaries, electronic timing devices, mobile phones and pagers).  When planning your day, week, or a particular activity use a step-by-step approach, dividing the activity into manageable ‘chunks’.  Use checklists and tick off each part of the activity that you have accomplished. This will help you to stay on track.  Mentally rehearse your plans.  Discuss your plans for the day with others. They can help you to write down a step-bystep checklist of the different actions for that day.  Similar strategies can be used for longer term planning, such as appointments you need to make. Discussing your plans with others will make you more likely to remember and the other person can remind you of things if necessary.  Step-by-step checklists can be placed in key locations in the house in order to remind you of the different sequences to go through to do a task, such as preparing a meal.  Prepare a weekly routine for tasks like shopping, washing and tidying the house. Knowing that, for example, Monday is shopping day, will make you more motivated to get the task done.  Try to develop back up plans in advance, rather than when problems arise. Many strategies for overcoming memory problems can also be helpful for difficulties with planning. See the Headway factsheet Coping with memory problems – practical strategies for more information. Mood  If you feel unable to manage your emotions, it may help to talk to your doctor about this. They may be able to refer you to a form of therapy that will work for you, such as cognitive behavioural therapy (CBT).  It may be helpful for others to make allowances for the difficulties you may experience in controlling your mood. When you feel very upset, it may be better for the other person to try to calm the situation in the short term and discuss it with you later. Coping strategies for brain injury survivors 7  Others may need to make allowances for changes in your behaviour and personality. It is important for them to remember that the changes are a result of the injury and not because you are being lazy, self-centred or difficult. Social difficulties  Trusted friends or family members could help you by reminding you of what may be the most appropriate thing to do or say if you are struggling in social situations.  It may help to mentally prepare for social situations and to think about any difficult situations that have occurred before in similar environments. Caring for a person with executive deficits can be a full-time job and living with personality and behaviour changes in a relative or friend can be very distressing. Problems that carers may experience include:  Stress, anxiety or depression  Increased responsibility  Strained relationships  Reduced communication with partner  Restricted leisure/social life  Reduced sexual and emotional intimacy with a partner  Feeling tired and frustrated It is important for family members, carers and friends to access support for their practical and emotional needs. Input from the rehabilitation team can help and some people find peer support groups for carers useful. Headway’s Groups and Branches offer valuable support for both survivors and family members. It is also important to see a GP, who will be able to refer to local counselling and therapy services where they are available. Headway’s relationship factsheets might also be helpful resources to provide information and guidance on managing relationships after brain injury. For further information see the Headway booklet Caring for someone with a brain injury. The helpline can also provide helpful information, support and refer to local Groups and Branches. Executive dysfunction from a carer’s point of view 8 The frontal lobes are commonly affected by acquired brain injury. Damage to the frontal lobes is likely to cause symptoms which are collectively termed executive dysfunction. The diverse ways executive difficulties present themselves mean that assessment and rehabilitation are not straightforward. However, with appropriate rehabilitation and the use of coping strategies, many people can make good recoveries and learn to manage their difficulties. To discuss any issues raised in this factsheet, or to find details of our local groups and branches, please contact the Headway helpline free of charge on 0808 800 2244 (Monday - Friday, 9am-5pm) or by email at [email protected]. You can also find more information and contact details of groups and branches on our website at Supporting you.”

“Being an amputee myself with functional lower limb prosthetics, I can say that the device enable me to function normally. My prosthetics brought back my confidence and self esteem to participate in mainstream activities of the society, thus changing my outlook in life to positive to more positive. Definitely, my prosthetics had an impact on my present status or the quality of life I am enjoying now because I basically perform all the task that is assigned to me which at the end the day results to quality output and good pay.” Johnny “Coming from a country where there is not much awareness and resources for dealing with post-spinal cord injured victims, my return home was indeed an enormous challenge. Living in a house that was inaccessible, members of my family have had to persevere with daily lifting me up and down the house. Physiotherapy had become a crucial necessity and as a result of the continuous costs incurred, my mother took up the task to administer physiotherapy as well as stand in as my caretaker. During my rehabilitation process, getting admitted for treatment during times of illness or to use physiotherapy facilities was close to impossible as a result of the overwhelming numbers on the waiting list. My rehabilitation period despite challenging was a humbling moment of my life and a continuous process that I face until today. I have learned disability is not inability and a strong mentality and great attitude have been very important!” Casey “Families find themselves in difficulty after a member of the family has a stroke. I consider myself a stroke survivor but my family are stroke victims. I have been fortunate and have been able to return to work, but I have had to battle all the way. We do not get the help we need, services are so variable and there is not enough speech and language therapy and physiotherapy. After my stroke I had to learn to do everything again, including swallowing and to learn to talk. The first thing that came back to me with my speech was swearing, my first sentence had four expletives in it, but I am told that was normal.” Linda “If you don’t have a proper wheelchair, that is when you really feel that you are disabled. But if you have a proper wheelchair, which meets your needs and suits you, you can forget about your disability.” Faustina 4 Rehabilitation 95 Rehabilitation has long lacked a unifying conceptual framework (1). Historically, the term has described a range of responses to disability, from interventions to improve body function to more comprehensive measures designed to promote inclusion (see Box 4.1). The International Classification of Functioning, Disability and Health (ICF) provides a framework that can be used for all aspects of rehabilitation (11–14). For some people with disabilities, rehabilitation is essential to being able to participate in education, the labour market, and civic life. Rehabilitation is always voluntary, and some individuals may require support with decision-making about rehabilitation choices. In all cases rehabilitation should help to empower a person with a disability and his or her family. Article 26, Habilitation and Rehabilitation, of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) calls for: “… appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain their maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life”. The Article further calls on countries to organize, strengthen, and extend comprehensive rehabilitation services and programmes, which should begin as early as possible, based on multidisciplinary assessment of individual needs and strengths, and including the provision of assistive devices and technologies. This chapter examines some typical rehabilitation measures, the need and unmet need for rehabilitation, barriers to accessing rehabilitation, and ways in which these barriers can be addressed. Understanding rehabilitation Rehabilitation measures and outcomes Rehabilitation measures target body functions and structures, activities and participation, environmental factors, and personal factors. They contribute 96 World report on disability Box 4.1. What is rehabilitation? This Report defines rehabilitation as “a set of measures that assist individuals who experience, or are likely to experience, disability to achieve and maintain optimal functioning in interaction with their environments”. A distinction is sometimes made between habilitation, which aims to help those who acquire disabilities congenitally or early in life to develop maximal functioning; and rehabilitation, where those who have experienced a loss in function are assisted to regain maximal functioning (2). In this chapter the term “rehabilitation” covers both types of intervention. Although the concept of rehabilitation is broad, not everything to do with disability can be included in the term. Rehabilitation targets improvements in individual functioning – say, by improving a person’s ability to eat and drink independently. Rehabilitation also includes making changes to the individual’s environment – for example, by installing a toilet handrail. But barrier removal initiatives at societal level, such as fitting a ramp to a public building, are not considered rehabilitation in this Report. Rehabilitation reduces the impact of a broad range of health conditions. Typically rehabilitation occurs for a specific period of time, but can involve single or multiple interventions delivered by an individual or a team of rehabilitation workers, and can be needed from the acute or initial phase immediately following recognition of a health condition through to post-acute and maintenance phases. Rehabilitation involves identification of a person’s problems and needs, relating the problems to relevant factors of the person and the environment, defining rehabilitation goals, planning and implementing the measures, and assessing the effects (see figure below). Educating people with disabilities is essential for developing knowledge and skills for self-help, care, management, and decision-making. People with disabilities and their families experience better health and functioning when they are partners in rehabilitation (3–9). The rehabilitation process Identify problems and needs Assess eects Relate problems to modiable and limiting factors Dene target problems and target mediators, select appropriate measures Plan, implement, and coordinate interventions Source: A modified version of the Rehabilitation Cycle from (10). Rehabilitation – provided along a continuum of care ranging from hospital care to rehabilitation in the community (12) – can improve health outcomes, reduce costs by shortening hospital stays (15–17), reduce disability, and improve quality of life (18–21). Rehabilitation need not be expensive. Rehabilitation is cross-sectoral and may be carried out by health professionals in conjunction with specialists in education, employment, social welfare, and other fields. In resource-poor contexts it may involve non-specialist workers – for example, community-based rehabilitation workers in addition to family, friends, and community groups. Rehabilitation that begins early produces better functional outcomes for almost all health conditions associated with disability (18–30). The effectiveness of early intervention is particularly marked for children with, or at risk of, developmental delays (27, 28, 31, 32), and has been proven to increase educational and developmental gains (4, 27). 97 Chapter 4 Rehabilitation to a person achieving and maintaining optimal functioning in interaction with their environment, using the following broad outcomes: ■ prevention of the loss of function ■ slowing the rate of loss of function ■ improvement or restoration of function ■ compensation for lost function ■ maintenance of current function. Rehabilitation outcomes are the benefits and changes in the functioning of an individual over time that are attributable to a single measure or set of measures (33). Traditionally, rehabilitation outcome measures have focused on the individual’s impairment level. More recently, outcomes measurement has been extended to include individual activity and participation outcomes (34, 35). Measurements of activity and participation outcomes assess the individual’s performance across a range of areas – including communication, mobility, self-care, education, work and employment, and quality of life. Activity and participation outcomes may also be measured for programmes. Examples include the number of people who remain in or return to their home or community, independent living rates, return-to-work rates, and hours spent in leisure and recreational pursuits. Rehabilitation outcomes may also be measured through changes in resource use – for example, reducing the hours needed each week for support and assistance services (36). The following examples illustrate different rehabilitation measures: ■ A middle-aged woman with advanced diabetes. Rehabilitation might include assistance to regain strength following her hospitalization for diabetic coma, the provision of a prosthesis and gait training after a limb amputation, and the provision of screen-reader software to enable her to continue her job as an accountant after sustaining loss of vision. ■ A young man with schizophrenia. The man may have trouble with routine daily tasks, such as working, living independently, and maintaining relationships. Rehabilitation might mean drug treatment, education of patients and families, and psychological support via outpatient care, communitybased rehabilitation, or participation in a support group. ■ A child who is deafblind. Parents, teachers, physical and occupational therapists, and other orientation and mobility specialists need to work together to plan accessible and stimulating spaces to encourage development. Caregivers will need to work with the child to develop appropriate touch and sign communication methods. Individualized education with careful assessment will help learning and reduce the child’s isolation. Limitations and restrictions for a child with cerebral palsy, and possible rehabilitation measures, outcomes, and barriers are described in Table 4.1. Rehabilitation teams and specific disciplines may work across categories. Rehabilitation measures in this chapter are broadly divided into three categories: ■ rehabilitation medicine ■ therapy ■ assistive technologies. Rehabilitation medicine Rehabilitation medicine is concerned with improving functioning through the diagnosis and treatment of health conditions, reducing impairments, and preventing or treating complications (12, 37). Doctors with specific expertise in medical rehabilitation are referred to as physiatrists, rehabilitation doctors, or physical and rehabilitation specialists (37). Medical specialists such as psychiatrists, paediatricians, geriatricians, ophthalmologists, neurosurgeons, and orthopaedic surgeons can be involved in rehabilitation medicine, as can a broad range of therapists. In many parts of the world where specialists in rehabilitation medicine are not available, services may be provided by doctors and therapists (see Box 4.2). 98 World report on disability Table 4.1. Child with cerebral palsy and rehabilitation Difficulties faced by the child Rehabilitation measures Possible outcomes Potential barriers People involved in the measures Unable to care for self → Therapy – Training for the child on different ways to complete the task. – Assessment and provision of equipment, training parents to lift, carry, move, feed and otherwise care for the child with cerebral palsy. – Teaching parents and family members to use and maintain equipment. – Provision of information and support for parents and family. – Counselling the family. → Assistive technology – Provision of equipment for maintaining postures and self-care, playing and interaction, such as sitting or standing (when age-appropriate) – Parents better able to care for their child and be proactive. – Reduced likelihood of compromised development, deformities, and contractures. – Reduced likelihood of respiratory infections. – Access to support groups or peer support. – Coping with stress and other psychological demands. – Better posture, respiration, feeding, speech, and physical activity performance. – Timeliness of interventions. – Availability of family and support. – Financial capacity to pay for services and equipment. – Availability of well trained staff. – Attitudes and understanding of others involved in the rehabilitation measure. – Physical access to home environment, community, equipment, assistive devices and services. – The child, parents, siblings, and extended family. – Depending on the setting and resources available: physiotherapists, occupational therapists, speech and language therapists, orthotists and technicians, doctors, psychologists, social workers, community-based rehabilitation workers, schoolteachers, teaching assistants. Difficulty walking → Rehabilitation medicine – Botulinum toxin injections. – Surgical treatment of contractures and deformities (therapy interventions usually complement these medical interventions). → Therapy – Therapy, exercises and targeted play activities to train effective movements. → Assistive technology – Orthotics, wheelchair or other equipment. – Decreased muscle tone, better biomechanics of walking. – Decrease in self-reported limitations. – Increased participation in education and social life. – Access to post-acute rehabilitation. – Doctor, parents, therapist, orthotist. Communication difficulties → Therapy – Audiology. – Activities for language development. – Conversation skills. – Training conversation partners. → Assistive technology – Training to use and maintain aids and equipment, which may include hearing aids and augmentative and alternative communication devices. – Better communication skills. – Participation in social, educational and occupational life opportunities. – Improved relationships with family, friends, and the wider community. – Reduced risk of distress, educational failure, and antisocial behaviour. – Availability of speech language therapists. – Social and economic status of the family. – Costs of purchasing and maintaining devices. – Parents, speech and language pathologist/therapist, communication disorders assistant, community-based rehabilitation worker, teachers, and assistants. Note: The table shows some potential rehabilitation measures for a child with cerebral palsy, possible outcomes, potential barriers, and the various people involved in care. 99 Chapter 4 Rehabilitation Box 4.2. Clubfoot treatment in Uganda Clubfoot, a congenital deformity involving one or both feet, is commonly neglected in low and middle-income countries. If left untreated, clubfoot can result in physical deformity, pain in the feet, and impaired mobility, all of which can limit community participation, including access to education. In Uganda the incidence of clubfoot is 1.2 per 1000 live births. The condition is usually not diagnosed, or if diagnosed it is neglected because conventional invasive surgery treatment is not possible with the resources available (38). The Ponseti clubfoot treatment involving manipulation, casting, Achilles tenotomy, and fitting of foot braces has proven to result in a high rate of painless, functional feet (Ponseti, 1996). The benefits of this approach for developing countries are low cost, high effectiveness, and the possibility to train service providers other than medical doctors to perform the treatment. The results of a clubfoot project in Malawi, where the treatment was conducted by trained orthopaedic clinical officers, showed that initial good correction was achieved in 98% of cases (39). The Ugandan Sustainable Clubfoot Care Project – a collaborative partnership between the Ugandan Ministry of Health, CBM International, and Ugandan and Canadian universities – is funded by the Canadian International Development Agency. Its purpose is to make sustainable, universal, effective, and safe treatment of clubfoot in Uganda using the Ponseti method. It built on the existing health care and education sectors and has incorporated research to inform the project’s activities and evaluate outcomes. The project has resulted in many positive achievements in two years including: ■ The Ugandan Ministry of Health has approved the Ponseti method as the preferred treatment for clubfoot in all its hospitals. ■ 36% of the country’s public hospitals have built the capacity to do the Ponseti procedure and are using the method. ■ 798 health-care professionals received training to identify and treat clubfoot. ■ Teaching modules on clubfoot and the Ponseti method are being used in two medical and three paramedical schools. ■ 1152 students in various health disciplines received training in the Ponseti method. ■ 872 children with clubfoot received treatment, an estimated 31% of infants born with clubfoot during the sample period – very high, given that only 41% of all births occur in a health care centre. ■ Public awareness campaigns were implemented – including radio messages and distribution of posters and pamphlets to village health teams – to inform the general public that clubfoot is correctable. The project shows that clubfoot detection and treatment can quickly be incorporated into settings with few resources. The approach requires: ■ Screening infants at birth for foot deformity to detect the impairment. ■ Building the capacity of health-care professionals across the continuum of care, from community midwives screening for deformity, to NGO technicians making braces, and orthopaedic officers performing tenotomies. ■ Decentralizing clubfoot care services, including screening in the community, for example through communitybased rehabilitation workers, and treatment in local clinics, to address treatment adherence barriers. ■ Incorporating Ponseti method training into the education curricula of medical, nursing, paramedical, and infant health-care students. ■ Establishing mechanisms to address treatment adherence barriers including travel distance and costs. 100 World report on disability Rehabilitation medicine has shown positive outcomes, for example, in improving joint and limb function, pain management, wound healing, and psychosocial well-being (40–47). Therapy Therapy is concerned with restoring and compensating for the loss of functioning, and preventing or slowing deterioration in functioning in every area of a person’s life. Therapists and rehabilitation workers include occupational therapists, orthotists, physiotherapists, prosthetists, psychologists, rehabilitation and technical assistants, social workers, and speech and language therapists. Therapy measures include: ■ training, exercises, and compensatory strategies ■ education ■ support and counselling ■ modifications to the environment ■ provision of resources and assistive technology. Convincing evidence shows that some therapy measures improve rehabilitation outcomes (see Box 4.3). For example, exercise therapy in a broad range of health conditions – including cystic fibrosis, frailness in elderly people, Parkinson disease, stroke, osteoarthritis in the knee and hip, heart disease, and low back pain – has contributed to increased strength, endurance, and flexibility of joints. It can improve balance, posture, and range of motion or functional mobility, and reduce the risk of falls (49–51). Therapy interventions have also been found to be suitable for the long-term care of older persons to reduce disability (18). Some studies show that training in activities of daily living have positive outcomes for people with stroke (52). Box 4.3. Money well spent: The effectiveness and value of housing adaptations Public spending on housing adaptations for people with difficulties in functioning in the United Kingdom of Great Britain and Northern Ireland amounted to more than £220 million in 1995, and both the number of demands and unit costs are growing. A 2000 research study examined the effectiveness of adaptations in England and Wales, using interviews with recipients of major adaptations, postal questionnaires returned by recipients of minor adaptations, administrative records, and the views of visiting professionals. The main measure of “effectiveness” was the degree to which the problems experienced by the respondent before adaptation were overcome by the adaptation, without causing new problems. The study found that: ■ Minor adaptations (rails, ramps, over-bath showers, and door entry systems, for example) – most costing less than £500 – produced a range of lasting, positive consequences for virtually all recipients: 62% of respondents suggested they felt safer from the risk of accident, and 77% perceived a positive effect on their health. ■ Major adaptations (bathroom conversions, extensions, lifts, for example) in most cases had transformed people’s lives. Before adaptations, people used words like “prisoner”, “degraded”, and “afraid’ to describe their situations; following adaptations, they spoke of themselves as “independent”, “useful”, and “confident”. ■ Where major adaptations failed, it was typically because of weaknesses in the original specification. Adaptations for children sometimes failed to allow for the child’s growth, for example. In other cases, policies intended to save money resulted in major waste. Examples included extensions that were too small or too cold to use, and cheap but ineffective substitutes for proper bathing facilities. ■ The evidence from recipients suggests that successful adaptations keep people out of hospitals, reduce strain on carers, and promote social inclusion. ■ Benefits were most pronounced where careful consultation with users took place, where the needs of the whole family had been considered, and where the integrity of the home had been respected. Adaptations appear to be a highly effective use of public resources, justifying investment in health and rehabilitation resources. Further research is needed in diverse contexts and settings. Source (48). 101 Chapter 4 Rehabilitation Distance training was used in Bangladesh for mothers of children with cerebral palsy in an 18-month therapy programme: it promoted the development of physical and cognitive skills and improved motor skills in the children (53). Counselling, information, and training on adaptive methods, aids, and equipment have been effective for individuals with spinal cord injury and younger people with disabilities (54–56). Many rehabilitation measures help people with disabilities to return or continue to work, including adjusting the content or schedule of work, and making changes to equipment and the work environment (57, 58). Assistive technologies An assistive technology device can be defined as “any item, piece of equipment, or product, whether it is acquired commercially, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities” (59). Common examples of assistive devices are: ■ crutches, prostheses, orthoses, wheelchairs, and tricycles for people with mobility impairments; ■ hearing aids and cochlear implants for those with hearing impairments; ■ white canes, magnifiers, ocular devices, talking books, and software for screen magnification and reading for people with visual impairments; ■ communication boards and speech synthesizers for people with speech impairments; ■ devices such as day calendars with symbol pictures for people with cognitive impairment. Assistive technologies, when appropriate to the user and the user’s environment, have been shown to be powerful tools to increase independence and improve participation. A study of people with limited mobility in Uganda found that assistive technologies for mobility created greater possibilities for community participation, especially in education and employment (60). For people in the United Kingdom with disabilities resulting from brain injuries, technologies such as personal digital assistants, and simpler technologies such as wall charts, were closely associated with independence (61). In a study of Nigerians with hearing impairments, provision of a hearing aid was associated with improved function, participation and user satisfaction (62). Assistive devices have also been reported to reduce disability and may substitute or supplement support services – possibly reducing care costs (63). In the United States of America, data over 15 years from the National Long-Term Care Survey found that increasing use of technology was associated with decreasing reported disability among people aged 65 years and older (64). Another study from the United States showed that users of assistive technologies such as mobility aids and equipment for personal care reported less need for support services (65). In some countries, assistive devices are an integral part of health care and are provided through the national health care system. Elsewhere, assistive technology is provided by governments through rehabilitation services, vocational rehabilitation, or special education agencies (66), insurance companies, and charitable and nongovernmental organizations. Rehabilitation settings The availability of rehabilitation services in different settings varies within and across nations and regions (67–70). Medical rehabilitation and therapy are typically provided in acute care hospitals for conditions with acute onset. Follow-up medical rehabilitation, therapy, and assistive devices could be provided in a wide range of settings, including specialized rehabilitation wards or hospitals; rehabilitation centres; institutions such as residential mental and nursing homes, respite care centres, hospices, prisons, residential educational institutions, and military residential settings; or single or multiprofessional practices (office or clinic). Longer-term rehabilitation may be provided 102 World report on disability within community settings and facilities such as primary health care centres, schools, workplaces, or home-care therapy services (67–70). Needs and unmet needs Global data on the need for rehabilitation services, the type and quality of measures provided, and estimates of unmet need do not exist. Data on rehabilitation services are often incomplete and fragmented. When data are available, comparability is hampered by differences in definitions, classifications of measures and personnel, populations under study, measurement methods, indicators, and data sources – for example, individuals with disabilities, service providers, or programme managers may experience needs and demands differently (71, 72). Unmet rehabilitation needs can delay discharge, limit activities, restrict participation, cause deterioration in health, increase dependency on others for assistance, and decrease quality of life (37, 73–77). These negative outcomes can have broad social and financial implications for individuals, families, and communities (78–80). Despite acknowledged limitations such as the quality of data and cultural variations in perception of disabilities, the need for rehabilitation services can be estimated in several ways. These include data on the prevalence of disability; disability-specific surveys; and population and administrative data. Prevalence data on health conditions associated with disability can provide information to assess rehabilitation needs (81). As Chapter 2 indicated, disability rates correlate with the increase in noncommunicable conditions and global ageing. The need for rehabilitation services is projected to increase (82, 83) due to these demographic and epidemiological factors. Strong evidence suggests that impairments related to ageing and many health conditions can be reduced and functioning improved with rehabilitation (84–86). Higher rates of disability indicate a greater potential need for rehabilitation. Epidemiological evidence together with an examination of the number, type, and severity of impairments, and the activity limitations and participation restrictions that may benefit from various rehabilitation measures, can help measure the need for services and may be useful for setting appropriate priorities for rehabilitation (87). ■ The number of people needing hearing aids worldwide is based on 2005 World Health Organization estimates that about 278 million people have moderate to profound hearing impairments (88). In developed countries, industry experts estimate that about 20% of people with hearing impairments need hearing aids (89), suggesting 56 million potential hearing-aid users worldwide. Hearing aid producers and distributors estimate that hearing aid production currently meets less than 10% of global need (88), and less than 3% of the hearing aid needs in developing countries are met annually (90). ■ The International Society for Prosthetics and Orthotics and the World Health Organization have estimated that people needing prostheses or orthotics and related services represent 0.5% of the population in developing countries; and 30 million people in Africa, Asia, and Latin America (91) require an estimated 180 000 rehabilitation professionals. In 2005 there were 24 prosthetic and orthotic schools in developing countries, graduating 400 trainees annually. Worldwide existing training facilities for prosthetic and orthotic professionals and other providers of essential rehabilitation services are deeply inadequate in relation to the need (92). ■ A national survey of musculoskeletal impairment in Rwanda concluded that 2.6% of children are impaired and that about 80 000 need physical therapy, 50 000 need orthopaedic surgery, and 10 000 need assistive devices (93). Most of the available data on national supply and unmet need are derived from 103 Chapter 4 Rehabilitation disability-specific surveys on specific populations such as: ■ National studies on living conditions of people with disabilities conducted in Malawi, Mozambique, Namibia, Zambia, and Zimbabwe (94–98) revealed large gaps in the provision of medical rehabilitation and assistive devices (see Table 2.5 in Chapter 2). Gender inequalities in access to assistive devices were evident in Malawi (men 25.3% and women 14.1%) and Zambia (men 15.7% and women 11.9%) (99). ■ A survey of physical rehabilitation medicine in Croatia, the Czech Republic, Hungary, Slovakia, and Slovenia found a general lack of access to rehabilitation in primary, secondary, tertiary, and community health care settings, as well as regional and socioeconomic inequalities in access (100). ■ In a study of people identified as disabled from three districts in Beijing, China, 75% of those interviewed expressed a need for a range of rehabilitation services, of which only 27% had received such services (101). A national Chinese study of the need for rehabilitation in 2007 found that unmet need was particularly high for assistive devices and therapy (102). ■ United States surveys report considerable unmet needs – often caused by funding problems – for assistive technologies (103). Unmet need for rehabilitation services can also be estimated from administrative and population survey data. The supply of rehabilitation services can be estimated from administrative data on the provision of services, and measures such as waiting times for rehabilitation services can proxy the extent to which demand for services is being met. A recent global survey (2006–2008) of vision services in 195 countries found that waiting times in urban areas averaged less than one month, while waiting times in rural areas ranged from six months to a year (104). Proxy measures may not always be reliable. In the case of waiting times, for instance, lack of awareness of services and beliefs about disability influence treatment-seeking, while restrictions on who is legitimately waiting for services can complicate data interpretation (105–107). Indicators on the number of people demanding but not receiving services, or receiving inadequate or inappropriate services, can provide useful planning information (108). Data on rehabilitation often are not disaggregated from other health care services, however, and rehabilitation measures are not included in existing classification systems, which could provide a framework for describing and measuring rehabilitation. Administrative data on supply are often fragmented because rehabilitation can take place in a variety of settings and be performed by different personnel. Comparing multiple data sources can provide more robust interpretations, if a common framework like the ICF is used. As an example, the Arthritis Community Research and Evaluation Unit in Toronto merged administrative data sources to profile rehabilitation demand and supply across all regions of the province of Ontario (109). The researchers triangulated population data with the number of health-care workers per region to estimate the number of workers per person: they found that the higher concentration of workers in the southern region did not coincide with the highest areas of demand, causing unmet demand for rehabilitation. Addressing barriers to rehabilitation The barriers to rehabilitation service provision can be overcome through a series of actions, including: ■ reforming policies, laws, and delivery systems, including development or revision of national rehabilitation plans; ■ developing funding mechanisms to address barriers related to financing of rehabilitation; 104 World report on disability ■ increasing human resources for rehabilitation, including training and retention of rehabilitation personnel; ■ expanding and decentralizing service delivery; ■ increasing the use and affordability of technology and assistive devices; ■ expanding research programmes, including improving information and access to good practice guidelines. Reforming policies, laws, and delivery systems A 2005 global survey (110) of the implementation of the nonbinding, United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities found that: ■ in 48 of 114 (42%) countries that responded to the survey, rehabilitation policies were not adopted; ■ in 57 (50%) countries legislation on rehabilitation for people with disabilities was not passed; ■ in 46 (40%) countries rehabilitation programmes were not established. Many countries have good legislation and related policies on rehabilitation, but the implementation of these policies, and the development and delivery of regional and local rehabilitation services, have lagged. Systemic barriers include: ■ Lack of strategic planning. A study of rehabilitation medicine related to physical impairments – excluding assistive technology, sensory impairments, and specialized disciplines – in five central and eastern European countries suggested that the lack of strategic planning for services had resulted in an uneven distribution of service capacity and infrastructure (100). ■ Lack of resources and health infrastructure. Limited resources and health infrastructure in developing countries, and in rural and remote communities in developed countries, can reduce access to rehabilitation and quality of services (111). In a survey on the reasons for not using needed health facilities in two Indian states, 52.3% of respondents indicated that no healthcare facility in the area was available (112). Other countries lack rehabilitation services that have proven effective at reducing longterm costs, such as early intervention for children under the age of 5 (5, 113–115). A study of users of community-based rehabilitation (CBR) in Ghana, Guyana, and Nepal showed limited impact on physical well-being because CBR workers had difficulties providing physical rehabilitation, assistive devices, and referral services (116). In Haiti, before the 2010 earthquake, an estimated three quarters of amputees received prosthetic management due to the lack of availability of services (117). ■ Lack of agency responsible to administer, coordinate, and monitor services. In some countries all rehabilitation is integrated in health care and financed under the national health system (118, 119). In other countries responsibilities are divided between different ministries, and rehabilitation services are often poorly integrated into the overall system and not well coordinated (120). A report of 29 African countries found that many lack coordination and collaboration among the different sectors and ministries involved in disability and rehabilitation, and 4 of the 29 countries did not have a lead ministry (119). ■ Inadequate health information systems and communication strategies can contribute to low rates of participation in rehabilitation. Aboriginal Australians have high rates of cardiovascular disease but low rates of participation in cardiac rehabilitation, for example. Barriers to rehabilitation include poor communication across the health care sector and between providers (notably between primary and secondary care), inconsistent and insufficient data collection processes, multiple clinical information systems, 105 Chapter 4 Rehabilitation and incompatible technologies (121). Poor communication results in ineffective coordination of responsibilities among providers (75). ■ Complex referral systems can limit access. Where access to rehabilitation services is controlled by doctors (77), medical rules or attitudes of primary physicians can obstruct individuals with disabilities from obtaining services (122). People are sometimes not referred, or inappropriately referred, or unnecessary medical consultations may increase their costs (123–126). This is particularly relevant to people with complex needs requiring multiple rehabilitation measures. ■ Absence of engagement with people with disabilities. The study of 114 countries mentioned above did not consult with disabled people’s organizations in 51 countries, and did not consult with families of persons with disabilities about design, implementation, and evaluation of rehabilitation programmes in 57 of the study countries (110). Countries that lack policies and legislation on rehabilitation should consider introducing them, especially countries that are signatories to the CRPD, as they are required to align national law with Articles 25 and 26 of the Convention. Rehabilitation can be incorporated into general legislation on health, and into relevant employment, education, and social services legislation, as well as into specific legislation for persons with disabilities. Policy responses should emphasize early intervention and use of rehabilitation to enable people with a broad range of health conditions to improve or maintain their level of functioning, with a specific focus on ensuring participation and inclusion, such as continuing to work (127). Services should be provided as close as possible to communities where people live, including in rural areas (128). Development, implementation, and monitoring of policy and laws should include users (see Box 4.4) (132). Rehabilitation professionals must be aware of the policies and programmes given the role of rehabilitation in keeping people with disabilities participating in society (133, 134). National rehabilitation plans and improved collaboration Creating or amending national plans on rehabilitation, and establishing infrastructure and capacity to implement the plan are critical to improving access to rehabilitation. Plans should be based on analysis of the current situation, consider the main aspects of rehabilitation provision – leadership, financing, information, service delivery, products and technologies, and the rehabilitation workforce (135) – and define priorities based on local need. Even if it is not immediately possible to provide rehabilitation services for all who need them, a plan involving smaller, annual investments may progressively strengthen and expand the rehabilitation system. Successful implementation of the plan depends on establishing or strengthening mechanisms for intersectoral collaboration. An interministerial committee or agency for rehabilitation can coordinate across organizations. For example, a Disability Action Council with representatives from the government, NGOs, and training programmes was established in Cambodia in 1997, to support coordination and cooperation across rehabilitation providers, decrease duplication and improve distribution of services and referral systems, and promote joint ventures in training (136). The Council has been very successful in developing physical rehabilitation and supporting professional training (physical therapy, prosthetics, orthotics, wheelchairs, and CBR) (137). Further benefits include (136): ■ joint negotiation for equipment and supplies; ■ sharing knowledge and expertise; ■ continuing education through sharing specialist educators, establishing clinical education sites, reviewing and revising curricula, and disseminating information; 106 World report on disability ■ support for the transition from expatriate professional services to local management. Developing funding mechanisms for rehabilitation The cost of rehabilitation can be a barrier for people with disabilities in high-income as well as low-income countries. Even where funding from governments, insurers, or NGOs is available, it may not cover enough of the costs to make rehabilitation affordable (117). People with disabilities have lower incomes and are often unemployed, so are less likely to be covered by employer-sponsored health plans or private voluntary health insurance (see Chapter 8). If they have limited finances and inadequate public health coverage, access to rehabilitation may also be limited, compromising activity and participation in society (138). Lack of financial resources for assistive technologies is a significant barrier for many (101). People with disabilities and their families purchase more than half of all assistive devices directly (139). In a Box 4.4. Reform of mental health law in Italy – closing psychiatric institutions is not enough In 1978 Italy introduced Law No. 180 gradually phasing out psychiatric hospitals and introducing a communitybased system of psychiatric care. Social psychiatrist Franco Basaglia was a leading figure behind the new law that rejected the assumption that people with mental illness were a danger to society. Basaglia had become appalled by the inhuman conditions he witnessed as the director of a psychiatric hospital in northern Italy. He viewed social factors as the main determinants in mental illness, and became a champion of community mental health services and beds in general hospitals instead of psychiatric hospitals (129). Thirty years later, Italy is the only country where traditional mental hospitals are prohibited by law. The law comprised framework legislation, with individual regions tasked with implementing detailed norms, methods, and timetables for action. As a result of the law, no new patients were admitted to psychiatric hospitals, and a process of deinstitutionalization of psychiatric inpatients was actively promoted. The inpatient population dropped by 53% between 1978 and 1987, and the final dismantling of psychiatric hospitals was completed by 2000 (130). Treatment for acute problems is delivered in general hospital psychiatric units, each with a maximum of 15 beds. A network of community mental health and rehabilitation centres support mentally ill people, based on a holistic perspective. The organization of services uses a departmental model to coordinate a range of treatments, phases, and professionals. Campaigns against stigma, for social inclusion of people with mental health problems, and empowerment of patients and families have been promoted and supported centrally and regionally. As a consequence of these policies, Italy has fewer psychiatric beds than other countries – 1.72 per 10 000 people in 2001. While Italy has a comparable number of psychiatrists per head of population to the United Kingdom, it has one third the psychiatric nurses and psychologists, and one tenth of the social workers. Italy also has lower rates of compulsory admissions (2.5 per 10 000 people in 2001, compared with 5.5 per 10 000 in England) (131), and lower use of psychotropic drugs than other European countries. “Revolving door” readmissions are evident only in regions with poor resources. Yet Italian mental health care is far from perfect (130). In place of public sector mental hospitals, the government operates small, protected communities or apartments for long-term patients, and private facilities provide longterm care in some regions. But support for mental health varies significantly by region, and the burden of care still falls on families in some areas. Community mental health and rehabilitation services have in some areas failed to innovate, and optimal treatments are not always available. Italy is preparing a new national strategy to reinforce the community care system, face emerging priorities, and standardize regional mental health care performance. Italy’s experience shows that closing psychiatric institutions must be accompanied by alternative structures. Reform laws should provide minimum standards, not just guidelines. Political commitment is necessary, as well as investment in buildings, staff, and training. Research and evaluation is vital, together with central mechanisms for verification, control, and comparison of services. 107 Chapter 4 Rehabilitation national survey in India, two thirds of the assistive technology users reported having paid for their devices themselves (112). In Haiti, poor access to prosthetic services was attributed partially to users being unable to pay (117). Spending on rehabilitation services is difficult to determine because it generally is not disaggregated from other health care expenditure. Limited information is available on expenditure for the full range of rehabilitation measures (68, 74, 138). Governments in 41 of 114 countries did not provide funding for assistive devices in 2005 (110). Even in the 79 countries where insurance schemes fully or partially covered assistive devices, 16 did not cover poor people with disabilities, and 28 did not cover all geographical locations (110). In some cases existing programmes did not cover maintenance and repairs for assistive devices, which can leave individuals with defective equipment and limit its use (76, 112, 140). One third of the 114 countries providing data to the 2005 global study did not allocate specific budgets for rehabilitation services (110). OECD countries appear to be investing more in rehabilitation than in the past, but the spending is still low (120). For example, unweighted averages for all OECD countries between 2006 and 2008 indicate that public spending on rehabilitation as part of labour market programmes was 0.02% of GDP with no increase over time (127). Health care funding often provides selective coverage for rehabilitation services – for example, by restricting the number or type of assistive devices, the number of therapy visits over a specific time, or the maximum cost (77) – in order to control cost. While cost controls are needed, they should be balanced with the need to provide services to those who can benefit. In the United States, government and private insurance plans limit coverage of assistive technologies and may not replace ageing devices until they are broken, sometimes requiring a substantial waiting period (77). A study of assistive device use by people with rheumatic disease in Germany and the Netherlands found significant differences between the two countries, thought to result from differences in country-related health care systems with respect to prescription and reimbursement rules (141). Policy actions require a budget matching the scope and priorities of the plan. The budget for rehabilitation services should be part of the regular budgets of relevant ministries – notably health – and should consider ongoing needs. Ideally, the budget line for rehabilitation services would be separated to identify and monitor spending. Many countries – particularly low-income and middle-income countries – struggle to finance rehabilitation, but rehabilitation is a good investment because it builds human capital (36, 142). Financing strategies can improve the provision, access, and coverage of rehabilitation services, particularly in low-income and middle-income countries. Any new strategy should be carefully evaluated for its applicability and cost–effectiveness before being implemented. Financing strategies may include the following: ■ Reallocate or redistribute resources. Public rehabilitation services should be reviewed and evaluated, with resources reallocated effectively. Possible modifications include: – changing from hospital or clinic-based rehabilitation to community-based interventions (74, 83); – reorganizing and integrating services to make them more efficient (26, 74, 143); – relocating equipment to where it is most needed (144). ■ Cooperate internationally. Developed countries, through their development aid, could provide long-term technical and financial assistance to developing countries to strengthen rehabilitation services, including rehabilitation personnel development. Aid agencies from Australia, Germany, Italy, Japan, New Zealand, Norway, Sweden, the United Kingdom, and the United States have supported such activities (145–147). 108 World report on disability ■ Include rehabilitation services in foreign aid for humanitarian crises. Conflict and natural disaster cause injuries and disabilities and make people with existing disabilities even more vulnerable – for example, after an earthquake there are increased difficulties in moving around due to the rubble from collapsed buildings and the loss of mobility devices. Foreign aid should also include trauma care and rehabilitation services (135, 142, 148). ■ Combine public and private financing. Clear demarcation of responsibilities and good coordination among sectors is needed for this strategy to be effective. Some services could be publicly funded but privately provided – as in Australia, Cambodia, Canada, and India. ■ Target poor people with disabilities. The essential elements of rehabilitation need to be identified, publicly funded, and made available for free to people with low incomes, as in South Africa (149) and India (8). ■ Evaluate coverage of health insurance, including criteria for equitable access. A study in the United States on access to physical therapy found that health care funding sources provided different coverage for physical therapy services depending on whether people had cerebral palsy, multiple sclerosis, or spinal cord injury (74). Increasing human resources for rehabilitation Global information about the rehabilitation workforce is inadequate. In many countries national planning and review of human resources for health do not refer to rehabilitation (135). Many lack the technical capacity to accurately monitor their rehabilitation workforce, so data are often unreliable and out-of-date. Furthermore, the terms to describe the workers vary, proven analytical tools are absent, and skills and experience for assessing crucial policy issues are lacking (150, 151). Many countries, developing and developed, report inadequate, unstable, or nonexistent supplies, (83, 152, 153) and unequal geographic distribution of, rehabilitation professionals (82, 140). Developed countries such as Australia, Canada, and the United States report shortages of rehabilitation personnel in rural and remote areas (154–156). The low quality and productivity of the rehabilitation workforce in low-income countries are disconcerting. The training for rehabilitation and other health personnel in developing countries, can be more complex than in developed countries. Training needs to consider the absence of other practitioners for consultation and advice and the lack of medical services, surgical treatment, and follow-up care through primary health care facilities. Rehabilitation personnel working in low-resource settings require extensive knowledge on pathology, and good diagnostic, problem-solving, clinical decision-making, and communication skills (136). Physiotherapy services are the ones most often available, often in small hospitals (144). A recent comprehensive survey of rehabilitation in Ghana identified no rehabilitation doctor or occupational therapist in the country, and only a few prosthetists, orthotists, and physical therapists, resulting in very limited access to therapy and assistive technologies (68). Services such as speech pathology are nearly absent in many countries (144). In India people with speech impairments were much less likely to receive assistive devices than people with visual impairments (112). An extensive survey of rehabilitation doctors in sub-Saharan Africa identified only six, all in South Africa, for more than 780 million people, while Europe has more than 10 000 and the United States more than 7000 (142). Discrepancies are also large for other rehabilitation professions: 0.04–0.6 psychologists per 100 000 population in low-income and lower middle-income countries, compared with 1.8 in upper middle-income countries and 14 in high-income countries; and 0.04 social workers per 100 000 population in low-income countries compared with 15.7 in high-income countries (157). Data from official 109 Chapter 4 Rehabilitation statistical sources showing the large disparities in supply of physiotherapists are shown in Fig. 4.1, and data from a survey by the World Federation of Occupational Therapists showing the disparities in occupational therapists are shown in Fig. 4.2. The lack of women in rehabilitation professions, and the cultural attitudes towards gender, affect rehabilitation services in some contexts. The low number of women technicians in India, for example, may partly explain why women with disabilities were less likely than men to receive assistive devices (112). Female patients in Afghanistan can be treated only by female therapists, and men only by men. Restrictions on travel for women

Milkman’s doctoral dissertation concluded that people would choose either heroin or amphetamines depending on how they liked to deal with stress. Heroin users wanted to numb themselves; amphetamine users wanted to actively confront it. After this work was published, he was among a group of researchers drafted by the US National Institute on Drug Abuse to answer questions such as: why do people start using drugs? Why do they continue? When do they reach a threshold to abuse? When do they stop? And when do they relapse?“Any college kid could say: why do they start? Well, there’s availability, they’re risk-takers, alienation, maybe some depression,” he says. “But why do they continue? So I got to the question about the threshold for abuse and the lights went on – that’s when I had my version of the ‘aha’ experience: they could be on the threshold for abuse before they even took the drug, because it was their style of coping that they were abusing.”At Metropolitan State College of Denver, Milkman was instrumental in developing the idea that people were getting addicted to changes in brain chemistry. Kids who were “active confronters” were after a rush – they’d get it by stealing hubcaps and radios and later cars, or through stimulant drugs. Alcohol also alters brain chemistry, of course. It’s a sedative but it sedates the brain’s control first, which can remove inhibitions and, in limited doses, reduce anxiety.“People can get addicted to drink, cars, money, sex, calories, cocaine – whatever,” says Milkman. “The idea of behavioural addiction became our trademark.”This idea spawned another: “Why not orchestrate a social movement around natural highs: around people getting high on their own brain chemistry – because it seems obvious to me that people want to change their consciousness – without the deleterious effects of drugs?”By 1992, his team in Denver had won a $1.2 million government grant to form Project Self-Discovery, which offered teenagers natural-high alternatives to drugs and crime. They got referrals from teachers, school nurses and counsellors, taking in kids from the age of 14 who didn’t see themselves as needing treatment but who had problems with drugs or petty crime.“We didn’t say to them, you’re coming in for treatment. We said, we’ll teach you anything you want to learn: music, dance, hip hop, art, martial arts.” The idea was that these different classes could provide a variety of alterations in the kids’ brain chemistry, and give them what they needed to cope better with life: some might crave an experience that could help reduce anxiety, others may be after a rush.At the same time, the recruits got life-skills training, which focused on improving their thoughts about themselves and their lives, and the way they interacted with other people. “The main principle was that drug education doesn’t work because nobody pays attention to it. What is needed are the life skills to act on that information,” Milkman says. Kids were told it was a three-month programme. Some stayed five years.In 1991, Milkman was invited to Iceland to talk about this work, his findings and ideas. He became a consultant to the first residential drug treatment centre for adolescents in Iceland, in a town called Tindar. “It was designed around the idea of giving kids better things to do,” he explains. It was here that he met Gudberg, who was then a psychology undergraduate and a volunteer at Tindar. They have been close friends ever since.Milkman started coming regularly to Iceland and giving talks. These talks, and Tindar, attracted the attention of a young researcher at the University of Iceland, called Inga Dóra Sigfúsdóttir. She wondered: what if you could use healthy alternatives to drugs and alcohol as part of a programme not to treat kids with problems, but to stop kids drinking or taking drugs in the first place?A couple of minutes ago, we passed two halls dedicated to badminton and ping pong. Here in the park, there’s also an athletics track, a geothermally heated swimming pool and – at last – some visible kids, excitedly playing football on an artificial pitch.Young people aren’t hanging out in the park right now, Gudberg explains, because they’re in after-school classes in these facilities, or in clubs for music, dance or art. Or they might be on outings with their parents.Today, Iceland tops the European table for the cleanest-living teens. The percentage of 15- and 16-year-olds who had been drunk in the previous month plummeted from 42 per cent in 1998 to 5 per cent in 2016. The percentage who have ever used cannabis is down from 17 per cent to 7 per cent. Those smoking cigarettes every day fell from 23 per cent to just 3 per cent.© Dave ImmsThe way the country has achieved this turnaround has been both radical and evidence-based, but it has relied a lot on what might be termed enforced common sense. “This is the most remarkably intense and profound study of stress in the lives of teenagers that I have ever seen,” says Milkman. “I’m just so impressed by how well it is working.”If it was adopted in other countries, Milkman argues, the Icelandic model could benefit the general psychological and physical wellbeing of millions of kids, not to mention the coffers of healthcare agencies and broader society. It’s a big if.© Dave ImmsHave you ever tried alcohol? If so, when did you last have a drink? Have you ever been drunk? Have you tried cigarettes? If so, how often do you smoke? How much time do you spend with your parents? Do you have a close relationship with your parents? What kind of activities do you take part in?In 1992, 14-, 15- and 16-year-olds in every school in Iceland filled in a questionnaire with these kinds of questions. This process was then repeated in 1995 and 1997.The results of these surveys were alarming. Nationally, almost 25 per cent were smoking every day, over 40 per cent had got drunk in the past month. But when the team drilled right down into the data, they could identify precisely which schools had the worst problems – and which had the least. Their analysis revealed clear differences between the lives of kids who took up drinking, smoking and other drugs, and those who didn’t. A few factors emerged as strongly protective: participation in organised activities – especially sport – three or four times a week, total time spent with parents during the week, feeling cared about at school, and not being outdoors in the late evenings.“At that time, there had been all kinds of substance prevention efforts and programmes,” says Inga Dóra, who was a research assistant on the surveys. “Mostly they were built on education.” Kids were being warned about the dangers of drink and drugs, but, as Milkman had observed in the US, these programmes were not working. “We wanted to come up with a different approach.”The mayor of Reykjavik, too, was interested in trying something new, and many parents felt the same, adds Jón Sigfússon, Inga Dóra’s colleague and brother. Jón had young daughters at the time and joined her new Icelandic Centre for Social Research and Analysis when it was set up in 1999. “The situation was bad,” he says. “It was obvious something had to be done.”Using the survey data and insights from research including Milkman’s, a new national plan was gradually introduced. It was called Youth in Iceland.Laws were changed. It became illegal to buy tobacco under the age of 18 and alcohol under the age of 20, and tobacco and alcohol advertising was banned. Links between parents and school were strengthened through parental organisations which by law had to be established in every school, along with school councils with parent representatives. Parents were encouraged to attend talks on the importance of spending a quantity of time with their children rather than occasional “quality time”, on talking to their kids about their lives, on knowing who their kids were friends with, and on keeping their children home in the evenings.A law was also passed prohibiting children aged between 13 and 16 from being outside after 10pm in winter and midnight in summer. It’s still in effect today.Home and School, the national umbrella body for parental organisations, introduced agreements for parents to sign. The content varies depending on the age group, and individual organisations can decide what they want to include. For kids aged 13 and up, parents can pledge to follow all the recommendations, and also, for example, not to allow their kids to have unsupervised parties, not to buy alcohol for minors, and to keep an eye on the wellbeing of other children.These agreements educate parents but also help to strengthen their authority in the home, argues Hrefna Sigurjónsdóttir, director of Home and School. “Then it becomes harder to use the oldest excuse in the book: ‘But everybody else can!’”State funding was increased for organised sport, music, art, dance and other clubs, to give kids alternative ways to feel part of a group, and to feel good, rather than through using alcohol and drugs, and kids from low-income families received help to take part. In Reykjavik, for instance, where more than a third of the country’s population lives, a Leisure Card gives families 35,000 krona (£250) per year per child to pay for recreational activities.Crucially, the surveys have continued. Each year, almost every child in Iceland completes one. This means up-to-date, reliable data is always available.Between 1997 and 2012, the percentage of kids aged 15 and 16 who reported often or almost always spending time with their parents on weekdays doubled – from 23 per cent to 46 per cent – and the percentage who participated in organised sports at least four times a week increased from 24 per cent to 42 per cent. Meanwhile, cigarette smoking, drinking and cannabis use in this age group plummeted.© Dave Imms“Although this cannot be shown in the form of a causal relationship – which is a good example of why primary prevention methods are sometimes hard to sell to scientists – the trend is very clear,” notes Álfgeir Kristjánsson, who worked on the data and is now at the West Virginia University School of Public Health in the US. “Protective factors have gone up, risk factors down, and substance use has gone down – and more consistently in Iceland than in any other European country.”Jón Sigfússon apologies for being just a couple of minutes late. “I was on a crisis call!” He prefers not to say precisely to where, but it was to one of the cities elsewhere in the world that has now adopted, in part, the Youth in Iceland ideas.Youth in Europe, which Jón heads, began in 2006 after the already-remarkable Icelandic data was presented at a European Cities Against Drugs meeting and, he recalls, “People asked: what are you doing?”Participation in Youth in Europe is at a municipal level rather than being led by national governments. In the first year, there were eight municipalities. To date, 35 have taken part, across 17 countries, varying from some areas where just a few schools take part to Tarragona in Spain, where 4,200 15-year-olds are involved. The method is always the same: Jón and his team talk to local officials and devise a questionnaire with the same core questions as those used in Iceland plus any locally tailored extras. For example, online gambling has recently emerged as a big problem in a few areas, and local officials want to know if it’s linked to other risky behaviour.Just two months after the questionnaires are returned to Iceland, the team sends back an initial report with the results, plus information on how they compare with other participating regions. “We always say that, like vegetables, information has to be fresh,” says Jón. “If you bring these findings a year later, people would say, Oh, this was a long time ago and maybe things have changed…” As well as fresh, it has to be local so that schools, parents and officials can see exactly what problems exist in which areas.The team has analysed 99,000 questionnaires from places as far afield as the Faroe Islands, Malta and Romania – as well as South Korea and, very recently, Nairobi and Guinea-Bissau. Broadly, the results show that when it comes to teen substance use, the same protective and risk factors identified in Iceland apply everywhere. There are some differences: in one location (in a country “on the Baltic Sea”), participation in organised sport actually emerged as a risk factor. Further investigation revealed that this was because young ex-military men who were keen on muscle-building drugs, drinking and smoking were running the clubs. Here, then, was a well-defined, immediate, local problem that could be addressed.While Jón and his team offer advice and information on what has been found to work in Iceland, it’s up to individual communities to decide what to do in the light of their results. Occasionally, they do nothing. One predominantly Muslim country, which he prefers not to identify, rejected the data because it revealed an unpalatable level of alcohol consumption. In other cities – such as the origin of Jón’s “crisis call” – there is an openness to the data and there is money, but he has observed that it can be much more difficult to secure and maintain funding for health prevention strategies than for treatments.No other country has made changes on the scale seen in Iceland. When asked if anyone has copied the laws to keep children indoors in the evening, Jón smiles. “Even Sweden laughs and calls it the child curfew!”© Dave ImmsAcross Europe, rates of teen alcohol and drug use have generally improved over the past 20 years, though nowhere as dramatically as in Iceland, and the reasons for improvements are not necessarily linked to strategies that foster teen wellbeing. In the UK, for example, the fact that teens are now spending more time at home interacting online rather than in person could be one of the major reasons for the drop in alcohol consumption.But Kaunas, in Lithuania, is one example of what can happen through active intervention. Since 2006, the city has administered the questionnaires five times, and schools, parents, healthcare organisations, churches, the police and social services have come together to try to improve kids’ wellbeing and curb substance use. For instance, parents get eight or nine free parenting sessions each year, and a new programme provides extra funding for public institutions and NGOs working in mental health promotion and stress management. In 2015, the city started offering free sports activities on Mondays, Wednesdays and Fridays, and there are plans to introduce a free ride service for low-income families, to help kids who don’t live close to the facilities to attend.Between 2006 and 2014, the number of 15- and 16-year-olds in Kaunas who reported getting drunk in the past 30 days fell by about a quarter, and daily smoking fell by more than 30 per cent.At the moment, participation in Youth in Europe is a haphazard affair, and the team in Iceland is small. Jón would like to see a centralised body with its own dedicated funding to focus on the expansion of Youth in Europe. “Even though we have been doing this for ten years, it is not our full, main job. We would like somebody to copy this and maintain it all over Europe,” he says. “And why only Europe?”After our walk through Laugardalur Park, Gudberg Jónsson invites us back to his home. Outside, in the garden, his two elder sons, Jón Konrád, who’s 21, and Birgir Ísar, who’s 15, talk to me about drinking and smoking. Jón does drink alcohol, but Birgir says he doesn’t know anyone at his school who smokes or drinks. We also talk about football training: Birgir trains five or six times a week; Jón, who is in his first year of a business degree at the University of Iceland, trains five times a week. They both started regular after-school training when they were six years old.“We have all these instruments at home,” their father told me earlier. “We tried to get them into music. We used to have a horse. My wife is really into horse riding. But it didn’t happen. In the end, soccer was their selection.”Did it ever feel like too much? Was there pressure to train when they’d rather have been doing something else? “No, we just had fun playing football,” says Birgir. Jón adds, “We tried it and got used to it, and so we kept on doing it.”© Dave ImmsIt’s not all they do. While Gudberg and his wife Thórunn don’t consciously plan for a certain number of hours each week with their three sons, they do try to take them regularly to the movies, the theatre, restaurants, hiking, fishing and, when Iceland’s sheep are brought down from the highlands each September, even on family sheep-herding outings.Jón and Birgir may be exceptionally keen on football, and talented (Jón has been offered a soccer scholarship to the Metropolitan State University of Denver, and a few weeks after we meet, Birgir is selected to play for the under-17 national team). But could the significant rise in the percentage of kids who take part in organised sport four or more times a week be bringing benefits beyond raising healthier children?Could it, for instance, have anything to do with Iceland’s crushing defeat of England in the Euro 2016 football championship? When asked, Inga Dóra Sigfúsdóttir, who was voted Woman of the Year in Iceland in 2016, smiles: “There is also the success in music, like Of Monsters and Men [an indie folk-pop group from Reykjavik]. These are young people who have been pushed into organised work. Some people have thanked me,” she says, with a wink.Elsewhere, cities that have joined Youth in Europe are reporting other benefits. In Bucharest, for example, the rate of teen suicides is dropping alongside use of drink and drugs. In Kaunas, the number of children committing crimes dropped by a third between 2014 and 2015.As Inga Dóra says: “We learned through the studies that we need to create circumstances in which kids can lead healthy lives, and they do not need to use substances, because life is fun, and they have plenty to do – and they are supported by parents who will spend time with them.”When it comes down to it, the messages – if not necessarily the methods – are straightforward. And when he looks at the results, Harvey Milkman thinks of his own country, the US. Could the Youth in Iceland model work there, too?Three hundred and twenty-five million people versus 330,000. Thirty-three thousand gangs versus virtually none. Around 1.3 million homeless young people versus a handful.Clearly, the US has challenges that Iceland does not. But the data from other parts of Europe, including cities such as Bucharest with major social problems and relative poverty, shows that the Icelandic model can work in very different cultures, Milkman argues. And the need in the US is high: underage drinking accounts for about 11 per cent of all alcohol consumed nationwide, and excessive drinking causes more than 4,300 deaths among under-21 year olds every year.A national programme along the lines of Youth in Iceland is unlikely to be introduced in the US, however. One major obstacle is that while in Iceland there is long-term commitment to the national project, community health programmes in the US are usually funded by short-term grants.Milkman has learned the hard way that even widely applauded, gold-standard youth programmes aren’t always expanded, or even sustained. “With Project Self-Discovery, it seemed like we had the best programme in the world,” he says. “I was invited to the White House twice. It won national awards. I was thinking: this will be replicated in every town and village. But it wasn’t.”He thinks that is because you can’t prescribe a generic model to every community because they don’t all have the same resources. Any move towards giving kids in the US the opportunities to participate in the kinds of activities now common in Iceland, and so helping them to stay away from alcohol and other drugs, will depend on building on what already exists. “You have to rely on the resources of the community,” he says.His colleague Álfgeir Kristjánsson is introducing the Icelandic ideas to the state of West Virginia. Surveys are being given to kids at several middle and high schools in the state, and a community coordinator will help get the results out to parents and anyone else who could use them to help local kids. But it might be difficult to achieve the kinds of results seen in Iceland, he concedes.Short-termism also impedes effective prevention strategies in the UK, says Michael O’Toole, CEO of Mentor, a charity that works to reduce alcohol and drug misuse in children and young people. Here, too, there is no national coordinated alcohol and drug prevention programme. It’s generally left to local authorities or to schools, which can often mean kids are simply given information about the dangers of drugs and alcohol – a strategy that, he agrees, evidence shows does not work.O’Toole fully endorses the Icelandic focus on parents, school and the community all coming together to help support kids, and on parents or carers being engaged in young people’s lives. Improving support for kids could help in so many ways, he stresses. Even when it comes just to alcohol and smoking, there is plenty of data to show that the older a child is when they have their first drink or cigarette, the healthier they will be over the course of their life.© Dave ImmsBut not all the strategies would be acceptable in the UK – the child curfews being one, parental walks around neighbourhoods to identify children breaking the rules perhaps another. And a trial run by Mentor in Brighton that involved inviting parents into schools for workshops found that it was difficult to get them engaged.Public wariness and an unwillingness to engage will be challenges wherever the Icelandic methods are proposed, thinks Milkman, and go to the heart of the balance of responsibility between states and citizens. “How much control do you want the government to have over what happens with your kids? Is this too much of the government meddling in how people live their lives?”In Iceland, the relationship between people and the state has allowed an effective national programme to cut the rates of teenagers smoking and drinking to excess – and, in the process, brought families closer and helped kids to become healthier in all kinds of ways. Will no other country decide these benefits are worth the costs?How has this story changed the world for the better? Find out in our update