The Health Secretary said the Government will do ‘whatever is needed’ to help the sector.
What is good personal assistance made of? Discussion of the qualitative results of the survey
Teodor Mladenov, 13 June 2018
The survey on personal assistance (PA), conducted by ENIL in the period 19 January – 4 March 2018, contained 138 characteristics of PA, arranged into 5 categories: Context, Funding, Needs assessment, Provision, and Working conditions. Participants were asked to assess each characteristic on a scale from -3 (maximal hindrance of choice and control) to +3 (maximal enabler of choice and control). At the end of the list of characteristics in each category, participants were given the opportunity to add comments in an open-ended way.
In this article, I provide an overview of these qualitative responses. Of the 54 people who responded to the survey, 16 provided such open-ended comments including information, recommendations and critique. I present these responses (with personal and country names omitted to preserve confidentiality) by organising them into three broad rubrics: 1) information about personal assistance in respondents’ localities; 2) recommendations about personal assistance in principle; and 3) comments on the survey. Where appropriate, I also discuss correlations with the quantitative results of the survey, which I already presented in a previous article published in ENIL’s Newsletter in March 2018.
At the next stage, the results of the survey will be used to construct a checklist for evaluation of PA schemes. Each item in this checklist will be assign a ‘weight’ based on the score it has achieved in the survey. The checklist will then be used to create quantitative profiles of PA schemes across Europe, which will make them comparable. Eventually, such evaluations and comparisons could be used for advocacy purposes.
- Information about personal assistance in respondents’ localities
1.1. Insufficient funding
The most common comment about existing PA schemes in respondents’ localities (countries, regions or municipalities) is that they are insufficiently funded: ‘Unfortunately in all schemes [provided in the country] there[‘]s a lack of funding, which makes buying [ade]quate care with a personal budged really hard.’ (PA user, Western Europe) The theme of insufficient funding encompasses various concerns: that the amounts of personal budgets are inadequate, that funding per assistance hour or the number of assistance hours allocated to users is too low, that welfare cuts have eroded PA provision, and that funding does not cover all the expenses associated with PA, including overhead expenses, users’ training and peer support: ‘The training for assistants [is] partially funded, the training for users and peer support is mostly being provided on voluntary bas[is].’ (PA user, Eastern Europe)
Funding problems are identified as significant barriers to choice and control in the quantitative responses to the survey as well – three of the top ten barriers (i.e., characteristics of PA with highest negative aggregate scores, given below in brackets) directly concern funding:
- The scheme is limited by a ‘cost ceiling’ and users whose support costs more are directed towards traditional services (e.g., residential institutions). (-115)
- The scheme is used as an excuse for cutting expenses for ‘social care’. (-108)
- The scheme is subjected to cuts (e.g., eligibility is tightened, ‘assistance hours’ are reduced, conditionality is introduced, etc.). (-97)
1.2. Restricted access
The second big theme in the comments about PA in respondents’ localities concerns the problem of restricted access to PA for certain groups, most notably people with intellectual and psychosocial impairments: ‘The scheme involves such eligibility criteria to exclude people with certain types of impairments (e.g. people with intellectual and psychosocial disabilities)’ (non-user, Eastern Europe). Another excluded group is comprised of disabled people living in rural areas or certain localities, presumably due to decentralisation of funding which makes PA dependant on locally available resources: ‘Personal Assistance scheme provision in [the country] depends on capability of local authorities.’ (PA user, Eastern Europe)
These qualitative responses partly correlate with the quantitative responses to the survey. The characteristic ‘The scheme is provided irrespective of the type of impairment’ accumulated an aggregate score of +81. However, the statement on decentralised funding – ‘The scheme is funded by regional or local authorities, out of regional or local budgets’ – accumulated a score of -3, which might at first sight suggest that this characteristic of PA provision is regarded as irrelevant by the respondents. However, an analysis of the distribution of individual responses shows a split, with 13 people assessing decentralised funding as a more or less maximal barrier to choice and control (giving scores of either -3 or -2), while 12 people assessing it as a more or less maximal enabler (giving scores of either +3 or +2).
1.3. Poor working conditions of the assistants
The third type of frequently occurring comments refers to the theme of poor working conditions of the assistants. This theme encompasses concerns that the assistants’ wages are too low, which makes recruitment of assistants difficult: ‘There is no[t] enough assistants as the extreme[ly] low wages.’ (PA user, Eastern Europe) Other issues are that PA is not recognised as a valuable occupation by the wider society and that the assistants work under contracts with limited protections: ‘The service providers are being persuaded to engage assistants by service not by the work contract because it’s less obligatory in relation to paid absence, replacement or deadline for payment.’ (PA user, Eastern Europe)
In their quantitative answers, the respondents similarly emphasise the importance of the working conditions of the assistants, nearly unanimously assessing the presence of various protections as enablers of choice and control for the users – examples include:
- The assistants are protected by health and safety provisions. (+124)
- The wages of the assistants are protected by minimum wage regulations. (+114)
- The assistants are entitled to benefits such as social security and paid leave (annual, sick and parental). (+114)
- Recommendations about personal assistance in principle
2.1. Involvement of PA users
A common theme in many of the recommendations about how to organise personal assistance is involvement of PA users (also known as ‘co-production’). Respondents insist that the users should be involved, ideally in leading roles, in various stages and aspects of PA, including licencing / accreditation / certification of providers, monitoring of provision, training of the assistants, and provision of support for the users: ‘Social Services professionals have a place in training but that role should be to empower disabled people. Support organisations are best when led by disabled people.’ (non-user, Western Europe) That said, there are also several comments which emphasise the need to involve other stakeholders besides users, presumably on an equal footing: ‘Even better if the evolution of the scheme is monitored by user-led organisations, including Centres for Independent Living in cooperation/ partnership with the government and support providers.’ (PA user, n/a)
Quantitatively, all the characteristics emphasising the involvement and leadership of PA users are identified as enablers of choice and control, achieving high positive aggregate scores. Here are several examples:
- The evolution of the scheme is monitored by user-led organisations, including Centres for Independent Living. (+97)
- The needs assessment is led by the user, possibly aided by peers. (+111)
- The assessors are trained by personal assistance users. (+91)
- The training of the users is provided by other assistance users. (+97)
- The requirements about the qualifications of the assistants are formulated by the users (rather than by the scheme, the provider, etc.). (+108)
- The training of the assistants is provided by assistance users. (+107)
2.2. Funding, access, working conditions
Some of the recommendation about PA correlate with the themes identified under the rubric of PA in respondents’ localities (see section 1. above). The theme of insufficient funding relates to recommendations for adequate pay per assistance hour and for funding that covers all of the additional costs of PA provision: ‘The hourly assessment is the better [option] of the 3, but still poses the risk as had happened to me, that there[‘]s not enough budget given to adequately hire someone, for the amount of hours.’ (PA user, Western Europe). The problems of restricted access correlate with suggestions for user-led needs assessment and avoidance of ‘postcode lottery’ in provision: ‘Funding has to be equitable at least across a single nation – otherwise people are treated more or less favourably depending on where they live.’ (non-user, Western Europe) Finally, the theme of poor working conditions of the assistants is associated with calls for protection of assistants as employees: ‘It is important for the future of personal assistance that assistants have a good employment protection.’ (PA user, Northern Europe)
2.3. Understanding of PA
Another theme that finds expression both as recommendations about PA policy in principle and as critiques of the existing situation, concerns the understanding of PA. For example, one of the respondents highlights as a problem in their country the conflation of PA with other types of support such as home care: ‘In [the country] there is no political or social awareness of independent life. Personal assistance is seen as a substitute for caregivers (especially [for] elderly people). We need a greater social awareness.’ (non-user, Southern Europe) The issue of understanding concerns definitions – a topic I have discussed at some length in a previous article for ENIL’s Newsletter: ‘definitions of terms such as “independent livings” and “personal assistance” are political because they intervene in the struggle for meaning, which is also a power struggle against professional hierarchies and for disabled people’s liberation’.
In their quantitative responses, most of the participants in the survey assess the statement ‘Policy makers and other stakeholders (e.g., the media) misunderstand, misuse or misrepresent the scheme’ as a maximal barrier to choice and control – this statement has achieved a negative aggregate score of -107, which ranks it among the top ten barriers.
2.4. Relationships between users and assistants
There are several comments concerning the relationship between the user and the assistant. One responded emphasises that PA is ‘just a job’ (non-user, Eastern Europe), while another highlights the uniqueness of this occupation and notes that it could potentially involve an affective dimension: ‘Some [disabled people] will require a PA to fade into the background until needed for a specific task and undertake it almost robotically so as not to dominate or take focus from the disabled person, while others will choose a “friends and family” type relationship where they derive encouragement and affection from staff.’ (non-user, Western Europe) The three corresponding items in the quantitative part of the survey are:
- Assistants are regarded by the users in instrumental terms, for example, as ‘arms and legs’ or ‘staff’. (+8)
- Assistants are regarded by the users in dialogical terms, for example, as ‘colleagues’. (+39)
- Assistants are regarded by the users in emotive terms, for example, as ‘friends’ or ‘part of the family’. (-29)
Let me briefly discuss these results. Aggregate scores manifest a slight preference for the dialogical type of PA relationship (+39), a slightly negative attitude towards the emotive type (-29), and indifference towards the instrumental type (+8). However, a brief examination of the distribution of individual scores shows contrasting views and lack of consensus – for example, the instrumental type of PA relationship is assessed as maximal barrier by 14 respondents (with scores of -3 or -2), and as maximal enabler by 17 (with scores of +3 or +2).
The relationship between instrumental and emotive understandings of PA (‘just a job’ or ‘fade into the background until needed for a specific task and undertake it almost robotically’ vs. ‘friend and family’) has been subject to debate within disability studies and activism. Recently, Tom Shakespeare and his colleagues have associated the instrumental conception of the PA relationship with the original tenets of the Independent Living movement, while pointing out that more recent developments in both research and advocacy have endeavoured to include the affective dimension as well: ‘recent literature has begun to question whether the assistive relationships can ever be as pragmatic or professional as Independent Living philosophy would proclaim’. However, the authors have also emphasised that even though ‘PA relationships involve characteristics features of friendship (such as emotional attachment and shared interests) they also retain fundamental qualities of the employer-employee relationship’.
- Comments on the survey
3.1. Lack of clarity
There are several comments on the content, form and length of the survey. One common complaint concerns lack of clarity in the formulations or language used, closely associated with suggestions for (minor) revisions of some of the statements or inclusion of new ones: ‘The question about rurality is not clear – does it ask if ONLY disabled people in rural areas should access the scheme?’ (non-user, Western Europe) Another respondent suggests that the lack of clarity is partly due to the use of English language in a multi-lingual context: ‘A bit complicated [E]nglish and how to answer can be wrong underst[ood].’ (PA user, Northern Europe)
The use of English certainly presents a communicative barrier that makes the survey inaccessible for some people. However, it is dictated by resource limitations that hinder translation into multiple languages. As far as clarity is concerned, the items in the survey were formulated following a comprehensive review of existing literature on PA. The comprehensibility and legibility of the statements was tested by piloting the inventory among colleagues at ENIL. Notwithstanding such precautions, some of the statements have obviously remained fuzzy or open to multiple interpretations. In the checklist that will be based on the survey and its results, I intend to include an option to flag statements that are unclear or inapplicable to the schemes being assessed. Hopefully, once the checklist is constructed, resources could be found to translate it into (at least some of) the languages of its application.
3.2. The response format is too restrictive
Another common critique of the survey is that the response format is too restrictive – i.e., the scale from -3 to +3. Some respondents are concerned about fixing a score because the assessment of some of the statements depends on the assessment of others or on individual circumstances, as well as because scores could be wrongly interpreted: ‘Some of these questions are very “black or white”… should assistants have extra payments made for travel? Well, it depends on how well they are paid. Should users of the scheme be required to contribute financially to the service? Yes, if they are very wealthy! (non-user, Western Europe). One of the respondents even reformulates the scale to fit their understanding of the task: ‘I put -3 for absolutely no, 0 for “I don’t know this info” or neither no or yes, 3 for absolutely yes.’ (n/a, Eastern Europe)
The choice of the response format was dictated by the attempt to quantify responses. Quantification is by definition reductive and is usually associated with scientific abstraction. However, its justification here is practical rather than theoretical. As also stated in the introduction to this article, the longer-term aim is to create a checklist of ‘weighted’ characteristics of PA that can be used to make quantitative profiles of PA schemes, thus enabling cross-country comparisons. Without quantification, comparisons are more difficult – however, they provide PA users and their organisations with powerful advocacy arguments.
3.3. Length, terminology and contextual factors
There are also several isolated comments which nevertheless highlight important issues that require attention. One responded notes that the survey is too long, especially for people with certain types of impairments who tend to get tired more quickly: ‘it’s a long enough survey, and people reading it might have a disability (I do). Did you really need to make the survey so long?’ (non-user, Western Europe) My response is that PA is a complex arrangement that includes many elements. Take, for example, the model of PA described by Adolf Ratzka – in this model, PA is constituted by a number of interrelated items, including needs assessment procedures, funding and accountability arrangements, appeal options, training activities, peer support and so forth. To take this complexity on board, a long description is needed. I accept that the length, like the use of English language, may be a barrier for some people, but it is dictated by the subject itself.
Another critique is that the term ‘user’ may be disliked or considered offensive by some disabled people: ‘I and many disabled people find the term ‘user’ pejorative.’ (non-user, Western Europe) I recognise this concern. However, I make recourse to the term ‘user’ in concert with the usual practice at ENIL, the organisation which hosts my research. Moreover, this term is common in research on personal assistance done by both disabled advocates and disability studies scholars – examples include the aforementioned research by Shakespeare and his colleagues, as well as the model described by Ratzka.
Finally, one respondent makes the observation that wider contextual factors should be considered in the section of the survey titled ‘Context’, because PA is effective as enabler of choice and control only in combination with other services and adaptations: ‘The context involves also other factors, such as housing, access to technical aids, access to education, accessibility of the built environment, etc., which help disabled people to acquire knowledge and develop skills necessary to make choices and exercise control in daily life.’ (non-user, Eastern Europe) Let me clarify here that the section ‘Context’ focuses on elements directly related to personal assistance such as its evolution, associated principles and legislative arrangements. Clearly, wider context is key for effective PA. However, the inclusion of wider contextual factors would make an already long survey into an impossibly long one; and it would shift the focus towards support for independent living in general, rather than zoom in on PA. That said, I intend to include a note about wider contextual factors as necessary complements of PA in the guidelines accompanying the checklist.
In conclusion, let me sincerely thank those 16 people who have made the additional effort to provide open-ended comments and to reflect on the content, length and form of the survey itself. These qualitative inputs enhance and clarify the quantitative results. If you have any further reflections, please, do not hesitate to contact me at: firstname.lastname@example.org.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Sklodowska-Curie grant agreement No 747027. This document reflects only the author’s view. The Research Executive Agency of the European Commission is not responsible for any use that may be made of the information it contains.
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