Ideologies and Policies for Independent Life and Disability : Personal Assistance Services Supporting the Employment of People with Disabilities in Norway and Poland

A person with primary progressive multiple sclerosis manages a complex scheme of personal assistance services to remain living at home.

Purpose To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service. Materials and methods Qualitative study using the Interpretive Description methodology with Aaron Antonovsky’s theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews (n = 3) and focus group interviews (n = 5). In all, 19 adults with neuromuscular disease (n = 13) or spinal cord injury (n = 6) participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Results Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) Making meaning of a personal assistance service, 2) Managing a personal assistance service, and 3) Living with a personal shadow. Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities’ administration of the service. Participants explained this by an experience of a sense of coherence. Conclusion For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one’s life by enhancing one’s sense of coherence.

Personal assistance and personal support services for/by/with adults, youth and children with disabilities

For an employee with a disability, reasonable accommodation can make the difference in finding work, maintaining employment, and succeeding on the job. Today, employers and employees alike are more aware that appropriate accommodation, including workplace personal assistance services (PAS) as well as assistive technology, improves an employee's ability to succeed. While assistive technology is in widespread use as an accommodation, workplace personal assistance is less understood.Method. The goal of the study was to learn more about how workplace PAS and AT are arranged for in the workplace, and the issues that arise. Structured phone interviews were conducted with 20 workplace PAS users, 21 employers familiar with workplace PAS, and 19 employment organizations. Interview transcripts are the basis for the qualitative analysis of findings.Results. Requirements for personal assistance accommodations focus on task-related needs. Personal care needs at work are not included in the Americans with Disabilities act but may be needed by the employee. Employers and PAS users have developed many creative ways to address PAS need. Organizations can construct an approach that fits the needs, abilities, and constraints of each organization. The interview respondents have identified a number of practices that are succeeding, including establishment of policies for arranging for PAS; centralization of accommodation budgets to remove work unit disincentives; and providing a shared personal assistant for interpreting or for task-related and personal care tasks. A number of important research questions remain. What is the extent of the need for PAS in the workplace? Will an expanded PAS supply increase the employment opportunities for people with disabilities? Will better models of workplace PAS be adopted by employers?

AAPM&R Presentation to IOM Committee on Disability in America 2005

PROTOCOL: Personal assistance for adults (19‐64) with physical impairments

The ethics of PAS: Morally relevant relationships between personal assistance services and physician-assisted suicide

The ethics of PAS: Morally relevant relationships between personal assistance services and physician-assisted suicide

PROTOCOL: Personal assistance for non‐demented older adults (65+) with impairments

Putting the consumer first: an introduction and overview.

The present study explores the management of respite and personal assistance services by families with relatives with developmental disability (DD). It focuses on the control of families over recruiting, hiring, training, scheduling, directing and negotiating wages of the staff they hire to provide services. Surveys from 97 families using paid respite or personal assistance services were used to test associations between: 1) level of control of services and outcome variables; 2) hiring relatives to provide services and outcome variables. More control by families in the management of their respite/personal assistance services was associated with increased service satisfaction, increased community involvement of individuals with DD and increased employment of mothers. Families tended to hire friends, neighbours, and to a great extent, other family members. Hiring of other relatives to provide services was associated with the increased community involvement of individuals with DD. The present study supports the idea that there are benefits for both caregivers and individuals with DD with increased control of respite and personal assistance services. The study also supports benefits associated with hiring relatives and recommends additional research in this area to guide policies.

Both Article 19 of the UN Convention on the Rights of Persons with Disabilities and the growth of the Independent Living Movement (ILM) have contributed to the introduction of the concept of personal assistance in East Asian countries. However, policymakers in East Asian countries need to translate personal assistance into their languages and sociocultural contexts. With the assumption that the language and terminology used in policy contain social interpretations and cultural understandings of policymakers, this article examines how personal assistance has been translated into Korean legal and administrative texts. Results show that the current Korean personal assistance services have a narrow understanding of independence and assistance while implicitly assuming family intervention. Moreover, assistance has been interpreted as an act of caregiving, which can impair the quality of the services. This article concludes with the importance of qualitative textual analysis of personal assistance services with consideration of sociocultural specificity.

Education of young people with mental disability is a difficult and complex process, requiring certain amount of knowledge, abilities and experience. The process of educating young people with mental disability remains important and relevant issue. Independence is closely associated with the real participation in social life opportunities: daily -decision making, planning of further activities. Mentally disabled young people must both be prepared to independent and social life, and be able to satisfy basic personal needs (take care of their health, budget, household etc.) in order to become a full-fledged member of society. Research object: success criteria of development of independent living skills in young people with mental disability. Article objective - theoretically and empirically substantiate opportunities of learning and training independent living skills and success criteria for mentally disabled young people at Independent Living Homes. The aim is specified by tasks: 1) to reveal the process of learning and training independent living skills for young people with mental disability; 2) to reveal success criteria of learning and training independent living skills for mentally disabled young people at Independent Living Homes, referring to experiences of social workers. Research methods: theoretical – analysis of scientific literature and documents, comparison, conclusion and systematization; empirical – data collection by using semi-structured interview method; a method of content analysis was used for analysing the survey data. The study included 7 social workers currently working in X Independent Living Homes of Lithuania. The working experience with mentally disabled people ranged between 2,5 and 7 years for all survey participants. This study revealed that success criteria for young people with mental disability living independently in communities are an ability to live on their own and join the community’s life, as well as satisfy their basic personal needs such as taking care of themselves, setting and achieving personal goals, maintaining the tidiness at home and having an ability to encourage other people to be more tidy too. The ability to maintain at labour market is an important success criteria for young people with mental disability as well. While educating independent living skills of mentally disabled young people it is crucial to enable them to get a personal assistant services and social housing. Personal assistants would be able to give more attention to one particular young person, get to know his or her environment, be a part of his or hers life and provide support and help if it is needed.

Personal assistance services in the workplace: A literature review

Aim : The purpose of this article is to explore how personal assistants, working in state-funded services for mobility-disabled people in Sweden, perceive and experience their work, with special focus on sexual facilitation (assistance with sexual activities). Background : Personal assistance services are a legal right, aiming to give certain disabled people the possibility to live on equal terms in society with non-disabled citizens. The services are to be grounded on the principles of self-determination, autonomy, integrity, and user influence according to independent-living ideology. However, the legislation does not mention sexuality, and in addition, there are often no local policies; hence, it is unclear what service users can demand in terms of sexual facilitation, and on the assistants’ part, what is and what is not acceptable to assist with. Methods : The methods used to gather data were interviews with 15 personal assistants as well as observations in an online discussion forum for personal assistants. Findings : The analysis suggests that personal assistants may experience that there is a taboo against discussing sexual facilitation in the workplace. There are no predetermined policies, regulations, or ethical codes of conduct regarding sexual facilitation, and the personal assistants’ discretion is therefore strong. Different strategies for managing this discretion were identified, greatly influenced by personal values, as well as societal norms. Conclusion : The normative context of discretion is highly visible, suggesting the importance of uncovering the interplay between the power dimensions of sexuality, disability, gender, and professionalism. Keywords : Sexuality; gender; disability; personal assistance services; professionalism (Published: 21 October 2013) Citation: Vulnerable Groups & Inclusion. http://dx.doi.org/10.3402/vgi.v4i0.20673