Effective support for disabled parents is still thin on the ground, though many local authorities are beginning to recognise the importance of this group of parents. Valued support can involve substantial packages of assistance; but it can also involve low-cost imaginative solutions devised with parents. Direct payments (cash in lieu of direct services) may be particularly appropriate in enabling many disabled adults to fulfil essential parenting roles. Legislation in this field can cause confusion, but the researchers found some practitioners drawing on both adults' and children's legislation flexibly and creatively to support disabled parents in the best interests of the whole family. Good joint working between social services and key agencies (health, housing, education, leisure) and between different social services teams is much needed but insufficiently developed for disabled parents. The researchers recommend that professionals should 'think parent' and view disabled parents in the same way as non-disabled parents: the vast majority want to parent their children well. They may require additional support to do this.
Effective support for disabled parents is still thin on the ground, though many local authorities are beginning to recognise the importance of this group of parents. Valued support can involve substantial packages of assistance; but it can also involve low-cost imaginative solutions devised with parents. Direct payments (cash in lieu of direct services) may be particularly appropriate in enabling many disabled adults to fulfil essential parenting roles. Legislation in this field can cause confusion, but the researchers found some practitioners drawing on both adults' and children's legislation flexibly and creatively to support disabled parents in the best interests of the whole family. Good joint working between social services and key agencies (health, housing, education, leisure) and between different social services teams is much needed but insufficiently developed for disabled parents. The researchers recommend that professionals should 'think parent' and view disabled parents in the same way as non-disabled parents: the vast majority want to parent their children well. They may require additional support to do this.
Subject terms:
law, parental role, parents, physical disabilities, social care provision, direct payments;
Aphasia is a communication impairment that commonly follows stroke. It affects people's ability to talk, understand, read and write. Some are so profoundly affected that any form of communication is minimal. Aphasia seems poorly understood and relatively unrecognised, perhaps because it is invisible; people with aphasia describe being overlooked. The experience of those with profound communication difficulties has never been documented before, partly because of methodological difficulties. People with severe aphasia had little access to employment, educational, training or leisure opportunities. Many were long-term recipients of a wide range of statutory and voluntary care services. Health, social and residential care workers did not have training or information about aphasia, and did not know how to support fragile communication. Health and social care services often failed to address important issues, such as employment, or financial concerns, and there was little connection and communication between the various agencies. People with severe aphasia were often excluded from the benefits of health, social care, residential and nursing services because information and instructions were inaccessible, activities inappropriate or unachievable, and there was continuous communication breakdown in interactions. For these people, services became 'hard to reach'. Service providers, family and friends may have unintentionally excluded people with severe aphasia by using idiosyncratic, unmonitored communication strategies. People with aphasia were talked about, patronised, teased and given orders. Particularly in residential and nursing care settings, people with severe aphasia were in danger of losing their identity as staff often knew very little about them and didn't know how to find out. Maintaining friendships and social contacts was difficult for people living with severe aphasia, resulting in isolation and boredom. Relatives described experiencing similar restrictions. People with severe aphasia mostly exercised little choice and control in their day-to-day lives. The researchers conclude that social exclusion is a common, though not inevitable, experience for people with aphasia.Training and support for communication are urgently needed for carers and service providers.
Aphasia is a communication impairment that commonly follows stroke. It affects people's ability to talk, understand, read and write. Some are so profoundly affected that any form of communication is minimal. Aphasia seems poorly understood and relatively unrecognised, perhaps because it is invisible; people with aphasia describe being overlooked. The experience of those with profound communication difficulties has never been documented before, partly because of methodological difficulties. People with severe aphasia had little access to employment, educational, training or leisure opportunities. Many were long-term recipients of a wide range of statutory and voluntary care services. Health, social and residential care workers did not have training or information about aphasia, and did not know how to support fragile communication. Health and social care services often failed to address important issues, such as employment, or financial concerns, and there was little connection and communication between the various agencies. People with severe aphasia were often excluded from the benefits of health, social care, residential and nursing services because information and instructions were inaccessible, activities inappropriate or unachievable, and there was continuous communication breakdown in interactions. For these people, services became 'hard to reach'. Service providers, family and friends may have unintentionally excluded people with severe aphasia by using idiosyncratic, unmonitored communication strategies. People with aphasia were talked about, patronised, teased and given orders. Particularly in residential and nursing care settings, people with severe aphasia were in danger of losing their identity as staff often knew very little about them and didn't know how to find out. Maintaining friendships and social contacts was difficult for people living with severe aphasia, resulting in isolation and boredom. Relatives described experiencing similar restrictions. People with severe aphasia mostly exercised little choice and control in their day-to-day lives. The researchers conclude that social exclusion is a common, though not inevitable, experience for people with aphasia.Training and support for communication are urgently needed for carers and service providers.
Subject terms:
physical disabilities, residential care, self-concept, social exclusion, stroke, access to services, carers, communication disorders, communities, head injuries;
The Government intends to make all government information and transactions available electronically by 2005. An increasing proportion of useful commercial and social information is available online. However, disabled people can face particular challenges using the Internet - for example, cost, access difficulties and unfamiliarity with electronic technology. (These limiting factors can be exacerbated for older age groups to which many disabled people belong.) Almost all questionnaire respondents welcomed the Government's initiative to put all services online, provided that alternative communication methods remained available. Internet usage enabled questionnaire respondents to communicate with others, and to reach a variety of information resources in spite of difficulties. These groups included those who were unable to leave their homes, those who found writing or reading common forms of print inaccessible, or those with speech impairments. Two-thirds of Internet users in the survey wanted to use the Internet more, cost being the main reason holding them back. Cost - of buying a computer, of online access and of assistive devices - was also the most common reason preventing Internet non-users getting online. Questionnaire respondents and focus group participants who needed assistive devices had significant problems in identifying what to use, in affording it, and in getting guidance or training with the equipment. Disabled Internet users who needed assistive devices to use a computer and the Internet found fewer websites that were easy to use and navigate than did those not using assistive devices. Only about one in ten respondents knew the location of their local UK Online centre (where help is available to learn initial Internet-using skills); there was little knowledge of the training provided by UK Online centres or other organisations. About 40 per cent of Internet-using respondents had tried but had been unable to find suitable training locally.
The Government intends to make all government information and transactions available electronically by 2005. An increasing proportion of useful commercial and social information is available online. However, disabled people can face particular challenges using the Internet - for example, cost, access difficulties and unfamiliarity with electronic technology. (These limiting factors can be exacerbated for older age groups to which many disabled people belong.) Almost all questionnaire respondents welcomed the Government's initiative to put all services online, provided that alternative communication methods remained available. Internet usage enabled questionnaire respondents to communicate with others, and to reach a variety of information resources in spite of difficulties. These groups included those who were unable to leave their homes, those who found writing or reading common forms of print inaccessible, or those with speech impairments. Two-thirds of Internet users in the survey wanted to use the Internet more, cost being the main reason holding them back. Cost - of buying a computer, of online access and of assistive devices - was also the most common reason preventing Internet non-users getting online. Questionnaire respondents and focus group participants who needed assistive devices had significant problems in identifying what to use, in affording it, and in getting guidance or training with the equipment. Disabled Internet users who needed assistive devices to use a computer and the Internet found fewer websites that were easy to use and navigate than did those not using assistive devices. Only about one in ten respondents knew the location of their local UK Online centre (where help is available to learn initial Internet-using skills); there was little knowledge of the training provided by UK Online centres or other organisations. About 40 per cent of Internet-using respondents had tried but had been unable to find suitable training locally.
Subject terms:
information technology, internet, physical disabilities, training, access to information, access to services, central government, cost effectiveness;
This research, conducted by the Centre for Research in Social Policy with the support of Disability Alliance, presents budget standards for groups of disabled people who have different needs arising from physical or sensory impairments. The budget standards represent the amounts disabled people (of working age) require in order to cover the costs of an acceptable and equitable quality of life. They were developed by disabled people themselves, through a series of rigorously conducted focus groups. They represent the minimum essential resources necessary to meet disabled people's needs, to enable them to achieve, as far as possible, a 'level playing field' with non-disabled people.
This research, conducted by the Centre for Research in Social Policy with the support of Disability Alliance, presents budget standards for groups of disabled people who have different needs arising from physical or sensory impairments. The budget standards represent the amounts disabled people (of working age) require in order to cover the costs of an acceptable and equitable quality of life. They were developed by disabled people themselves, through a series of rigorously conducted focus groups. They represent the minimum essential resources necessary to meet disabled people's needs, to enable them to achieve, as far as possible, a 'level playing field' with non-disabled people.
Subject terms:
income, income support, physical disabilities, supported living, standard of living, standards, unmet need, cost of living, costs, deafness, financing;
Black and minority ethnic service users felt mainstream services were often inappropriate for their needs and that services made assumptions based on stereotypes and prejudice about what the needs of these users may be or what they may want to access. The experience of racial discrimination and prejudice in mainstream service provision often meant that what minority ethnic users were asking for were specialist, culturally competent services. There were few black and minority ethnic staff in mainstream services and some of the services had made little attempt to change this.There was a general desire for more information about services and entitlements from service providers. For example, very few disabled people had any knowledge of direct payment schemes. Religious and cultural identity was very important to many people from minority ethnic communities but it was rarely responded to by mainstream service providers. Common myths about informal family networks looking after each other cannot be taken for granted. The research showed that although informal support is available in certain circumstances, this cannot be relied upon. People sometimes experienced discrimination and prejudice within their own community and faith groups. The differences between the experiences of men and women were often sharper than the differences between different ethnic groups.
Black and minority ethnic service users felt mainstream services were often inappropriate for their needs and that services made assumptions based on stereotypes and prejudice about what the needs of these users may be or what they may want to access. The experience of racial discrimination and prejudice in mainstream service provision often meant that what minority ethnic users were asking for were specialist, culturally competent services. There were few black and minority ethnic staff in mainstream services and some of the services had made little attempt to change this.There was a general desire for more information about services and entitlements from service providers. For example, very few disabled people had any knowledge of direct payment schemes. Religious and cultural identity was very important to many people from minority ethnic communities but it was rarely responded to by mainstream service providers. Common myths about informal family networks looking after each other cannot be taken for granted. The research showed that although informal support is available in certain circumstances, this cannot be relied upon. People sometimes experienced discrimination and prejudice within their own community and faith groups. The differences between the experiences of men and women were often sharper than the differences between different ethnic groups.
Subject terms:
physical disabilities, racial discrimination, religious discrimination, service users, social care provision, user participation, user views, access to services, black and minority ethnic people, cultural identity, direct payments;
People with physical impairments who also have mental health support needs have tended to be overlooked by both policy-makers and those commissioning services. The majority of respondents said they had difficulty accessing mental health services because of their physical impairments. The majority also had difficulty using physical disability services because of inadequate recognition of mental health needs and negative attitudes amongst staff towards mental health issues. In-patient experiences were often characterised by inaccessible physical environments and a lack of assistance for even simple things. There was a lack of understanding of the assistance that people needed, and staff were often too busy to provide it. Medication required for a physical condition was commonly withdrawn on admission to a psychiatric ward and was not always available when needed. This caused considerable distress, particularly when the medication was required for the control of pain. Community mental health services were appreciated when needs relating to physical impairment as well as mental health were addressed. However, this was unusual. Staff were often unfamiliar with needs relating to physical impairment and this could be associated with unhelpful attitudes. There was commonly poor or no communication between mental health and physical disability services. Many respondents found that services accessed because of physical impairment ignored mental health issues; some staff had negative reactions to such needs. Medication given for mental health needs often had an impact on physical impairment, but most people said they had not been warned about these potential effects. 'Talking treatments' received the highest rating of any service, but it was often difficult to find an accessible and, within the private sector, affordable therapist or counsellor. When people were asked what they wanted from mental health and physical disability services, they said they wanted to be seen as "a whole person", with attention paid to both mental health needs and those relating to physical impairment. They wanted services and professionals to communicate and work together, and easy access to flexible services which could address individual needs. Above all, they wanted to be listened to and treated with respect.
People with physical impairments who also have mental health support needs have tended to be overlooked by both policy-makers and those commissioning services. The majority of respondents said they had difficulty accessing mental health services because of their physical impairments. The majority also had difficulty using physical disability services because of inadequate recognition of mental health needs and negative attitudes amongst staff towards mental health issues. In-patient experiences were often characterised by inaccessible physical environments and a lack of assistance for even simple things. There was a lack of understanding of the assistance that people needed, and staff were often too busy to provide it. Medication required for a physical condition was commonly withdrawn on admission to a psychiatric ward and was not always available when needed. This caused considerable distress, particularly when the medication was required for the control of pain. Community mental health services were appreciated when needs relating to physical impairment as well as mental health were addressed. However, this was unusual. Staff were often unfamiliar with needs relating to physical impairment and this could be associated with unhelpful attitudes. There was commonly poor or no communication between mental health and physical disability services. Many respondents found that services accessed because of physical impairment ignored mental health issues; some staff had negative reactions to such needs. Medication given for mental health needs often had an impact on physical impairment, but most people said they had not been warned about these potential effects. 'Talking treatments' received the highest rating of any service, but it was often difficult to find an accessible and, within the private sector, affordable therapist or counsellor. When people were asked what they wanted from mental health and physical disability services, they said they wanted to be seen as "a whole person", with attention paid to both mental health needs and those relating to physical impairment. They wanted services and professionals to communicate and work together, and easy access to flexible services which could address individual needs. Above all, they wanted to be listened to and treated with respect.
Subject terms:
medication, mental health problems, mental health services, multiple disabilities, physical disabilities, unmet need, access to services, acute psychiatric care, commissioning, communication, counselling;