Ministers block release of ‘no deal Brexit’ social care recruitment plans | AccessAble | Carer Voice

Ministers are refusing to release information that would show what extra plans – if any – the Department of Health and Social Care (DHSC) has put in place to deal with an adult social care recruitment crisis in the event of a “no deal Brexit”.

With just 43 days until Britain faces the possibility of leaving the European Union without a deal in place, DHSC claimed that “premature” release of the information could put at risk “effective policy formulation and development regarding our exit from the EU”.

Instead of releasing its records, it has pointed to “high level” plans published just before Christmas, but they suggest that ministers have no plans in place to deal with an adult social care recruitment crisis.

Disabled people who use personal assistants (PAs) have warned repeatedly of the risk that any form of Brexit could mean their access to PAs from EU countries could dry up, with a no-deal Brexit making this even more likely.

Inclusion London said in December that the impact of Brexit on social care recruitment was “potentially disastrous”.


Source: Ministers block release of ‘no deal Brexit’ social care recruitment plans | AccessAble | Carer Voice

What is good personal assistance made of? Discussion of the qualitative results of the survey : European Network on Independent Living

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.


  1. 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)


  1. 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’.


  1. 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:



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.




Equality watchdog calls for court action over BA’s PA ticket ‘discrimination’ | DisabledGo News and Blog

The equality watchdog has called for the courts to decide if airlines are discriminating against disabled people by refusing to allow them to make simple alterations to tickets bought for their personal assistants (PAs).

The Equality and Human Rights Commission (EHRC) called this week on businesses like British Airways (BA) to ask themselves if they could be doing more to support disabled people’s access to transport.

The watchdog spoke out this week after hearing of the case of Rachael Monk.

Disability News Service (DNS) reported last week that Monk was having to pay hundreds of pounds extra to fly to Canada to visit a friend because BA refused to alter a ticket she bought for one of her two PAs, after the PA quit their job and pulled out of the trip.

As a result of the DNS story, the US-based agency AviRate – which rates hundreds of airlines across the world on their performance, particularly on the safety and satisfaction levels of passengers – this week downgraded BA’s “quality score” by 25 points, from 65 to just 40 out of 100, which saw it drop from a three-star quality score to a two-star rating.


Source: Equality watchdog calls for court action over BA’s PA ticket ‘discrimination’ | DisabledGo News and Blog

PA employers will not be exempt from further HMRC action on minimum wage : DisabledGo News

Disabled people who employ personal assistants (PAs) will not be exempt from a new government scheme designed to ensure that sleep-in care workers receive the minimum wage back pay they are due, HM Revenue and Customs (HMRC) has confirmed.

Disability News Service (DNS) has been told by HMRC that some individual employers of PAs are still being investigated over their failure to pay the full national minimum wage (NMW) to PAs who had worked overnight “sleep-ins”.

And HMRC has made it clear that any arrears owed by disabled employers of PAs will eventually have to be paid.

But it is not clear whether those arrears will be the responsibility of local authorities who funded direct payments that paid for PAs, or if individual disabled employers will have to meet that liability themselves.

Other disabled employers of PAs may have funded that support themselves.

The government announced this week that it was launching a new “compliance scheme”, which will give social care employers up to a year to identify how much they owe to staff who have been incorrectly paid below the legal minimum wage for sleep-in shifts.

At the end of this period, employers who have identified arrears will have up to three months to pay workers what they are owed.

Those who decide not to opt in to the scheme will be “subject to the full HMRC investigative process”, which could lead to financial penalties, public naming and shaming, and prosecution.

The government had previously waived further penalties for sleep-in shifts underpayment that took place before 26 July 2017, and temporarily suspended enforcement action between 26 July and 1 November 2017.

That action in July followed a high-profile tribunal ruling involving the disability charity Mencap, which found in April that many care workers should have been paid at least the minimum wage for the hours when spent on an overnight shift.

An HMRC spokesman told DNS this week that his department was not able to say how many individual PA employers were being investigated for non-payment of sleep-in NMW arrears.

But he said: “The government is aware that individuals who have used their own money, or direct payments, to fund sleep-in shifts could be personally liable for NMW arrears.

“These individuals are themselves extremely vulnerable, and the government is committed to doing all it can to prevent them from suffering financial difficulties as a result of this issue.

“However, the law states that all employers must pay NMW for sleep-in shifts, and this includes cases where an individual becomes an employer.

“The government is working with local authorities to develop solutions that enable these arrears to be paid to workers without causing financial hardship for individuals.

“Personal budget holders who have NMW arrears will be eligible for the social care compliance scheme as part of the government’s efforts to make sure that vulnerable individuals receive the support they require.”

But he added: “The Care Act sets out a number of duties on a local authority to ensure a personal budget adequately reflects personal needs.”

Asked whether this meant that HMRC believed it could be the responsibility of local authorities to meet the arrears faced by PA employers who receive direct payments, he said the government had “engaged local authorities to ensure personal budget allocations take into account the rules on NMW and when time spent asleep is working time for NMW purposes.

“The government will work with local authorities to provide appropriate support on a case by case basis and intends to carefully monitor any additional local authority spending as a result of supporting individuals and the effect on local authority finances.”

But he had not been able to clarify by noon today (Thursday) whether HMRC believed local authorities who funded direct payments could now be responsible for meeting the sleep-in shift NMW arrears of individual PA employers.

Meanwhile, Sue Bott, deputy chief executive of Disability Rights UK, has warned that some disabled people are now having to cut back on their day-time support in order to be able to pay NMW rates during the night.

She said: “Although employers will have longer to deal with any underpayment of sleep-ins, the government announcement fails to get to the heart of the problem.

“Of course, PAs and other social care staff should be paid the proper rate for the job, but a direct payment must be sufficient to cover the costs.

“Unfortunately, what we are seeing is that people are having to reduce the support they have in the day to pay for support at night.

“The hole in social care funding just gets deeper every day with disabled people and older people having to pay the price through lack of essential support.”

Cllr Izzi Seccombe, chair of the Local Government Association’s community wellbeing board, said: “The fact that employers won’t have to settle any back-payment for sleep-in costs until March 2019 is helpful and buys some much-needed time to further understand the size and potential impact of the historic liability.

“But this announcement does not end the uncertainty for providers, care workers, the people they care for and their families, and those who pay for their own care or employ a personal assistant through a personal budget.

“It was misleading government guidance in the past which caused the confusion over whether national minimum/living wage should apply for sleep-in shifts.

“Now the government has clarified the position, it needs to provide genuinely new funding to deal with back-payment.”

News provided by John Pring at

Source : PA employers will not be exempt from further HMRC action on minimum wage : DisabledGo News

Using personal assistants works, research concludes… but it can go wrong | DisabledGo News and Blog

Enabling disabled people with support needs to employ personal assistants (PAs) – rather than relying on traditional care workers – can be empowering and liberating, but relationships with PAs “can sometimes go wrong”, according to new research. The Personal Assistance Relationships study, led by the disabled academic Professor Tom Shakespeare, highlights the “complex” and “variable” nature of personal assistance relationships, and warns that they involve “a dynamic interplay of emotions, ethics and power”. He told an event in London, held to launch the University of East Anglia research, that “personal assistance works” and that it provides disabled people with freedom and control. But he added: “It is not straightforward, particularly for people who don’t come from the tradition of the disabled people’s movement.” He told the launch event that personal assistance was “one of the revolutionary innovations of the disabled people’s movement”, alongside the concept of independent living.

Source: Using personal assistants works, research concludes… but it can go wrong | DisabledGo News and Blog

Less residential care and more personal assistants – how councils have saved money in learning disability services

Original post from Community Care


Photo: John Birdsall/Rex
Photo: John Birdsall/Rex

Moving adults with learning disabilities from care homes into supported living and promoting greater independence for the group could help councils deliver savings while meeting needs.

That was the message from a Local Government Association (LGA) report into how councils can deliver efficiency savings in learning disability services.

The LGA’s Learning Disability Services Efficiency Project was initiated last year after it identified that councils were struggling to make savings in learning disability services.

The project’s interim report provides a snapshot of work being undertaken by five councils – Barking and Dagenham, Cumbria, Darlington, Kent and Wiltshire councils – to find ways to curb costs in learning disability services while meeting needs.

Cutting high-cost placements

Cumbria reported that it expects to save £350,000 after identifying that the needs of people in its most expensive care homes could be better met in other settings, including supported housing. The council estimated if that the same were true for those in less costly homes, the savings could be up to £2m over three years.

Kent is earmarking savings of between £4.75m and £8m from a programme of moving people out of care homes where their needs could be better met in supported living. This involved assessing the risks and benefits of adults moving out of care homes into other settings and working with providers to develop the supported living market, including through the deregistration of care homes.

More personal assistants

In Barking and Dagenham, the council anticipates saving £670,000 by transforming day opportunities through increased use of personal assistants (PAs) and the closure of one of the borough’s day centres.

The council has created a post to develop the use of PAs for people with learning disabilities and has developed an accreditation scheme for trainers of PAs.

Kent has also saved money by creating the Kent Pathways Service, a pilot scheme that encourages service user independence by developing their daily life skills, helping them find courses or employment and work to build their confidence. The LGA report said the Kent service has made savings that would equate to around £500,000 a year if initial savings also apply to all of the 507 people with learning disabilities that the council believes could benefit from the service.

A final report on the progress made by the five authorities involved in the learning disabilities project is due to be published in autumn 2016.  …………..’


Councils failing to provide adequate support for personal assistants, investigation finds

Original post from Community Care


Personal assistants speak out about their isolation as Community Care finds postcode lottery of support and training opportunities

Photo: lassedesignen/fotolia
Photo: lassedesignen/fotolia

Published in partnership with Unison

Councils are offering inadequate support for personal assistants despite the critical role they have to play in delivering personalised Unison-logocare under the Care Act, according to research by Community Care.

Figures obtained from 117 of England’s 152 local authorities through a freedom of information request show councils are falling short of minimum standards of support published by sector leaders in 2013. Key concerns include:

  • Personal assistants and their employers face isolation as 86% of councils don’t facilitate support networks for personal assistants and 65% don’t offer this provision to employers.
  • Training is a ‘postcode lottery’ with some councils only offering access to e-learning or free safeguarding sessions. One in 10 councils offering training do not meet the cost.
  • Opportunities for career development are also limited, with 82% of councils not promoting apprenticeships to personal assistants.
  • Nearly two thirds of councils do not provide a register of accredited personal assistants that employers can access when looking to recruit. 

The 2013 guidance, which was developed by Skills for Care, Learn to Care and the Association of Directors of Adult Social Services (ADASS), includes nine minimum standards and states that, due to the growing number of people receiving personal budgets and direct payments, councils need to be offering support of the ‘highest possible standard’ to employers and their personal assistants.

But personal assistants like Heather, who supports an elderly lady with mental health needs, continue to feel isolated. “I don’t know of any local networks and I wouldn’t know where to look for email addresses I could use to make contact with people myself,” she told Community Care.

“I just feel like there is no support out there. Who do I let off steam to? If I witness abuse or neglect, who do I speak to? If you work for an agency you will always have your line manager, but when you are employed through direct payments you have no point of contact. I have no one to turn to.”


‘I’ve got no support, no manager, and no access to supervision’

Sean, a personal assistant to a young man with complex health needs, has struggled to access support ever since his client’s family switched from an agency to a personal health budget, which is jointly funded by the NHS and the local authority.

“I’ve got no support, no manager, and no access to supervision,” he said. “I can talk to the NHS trainer but although he can try and give advice, the only concerns he can really raise are those related to the health needs of my client.”

Sean is also unaware of any local support groups for personal assistants. “The only place I can think of would be the group I take my employer to and that’s not the best place to do it – everyone’s clients are there to enjoy themselves, not talk about the issues we have.”

‘Persistent challenge’

A survey undertaken by Skills for Care in 2014 also found peer support to be lacking, but said it was recognised by councils as a ‘desirable intervention’. This was, however, the third consecutive year in which peer support was identified as a gap by the organisation’s research.

Responding to Community Care’s findings, Georgia Turner, programme lead for employer engagement at Skills for Care, said: “That support isn’t more widely embedded is indicative of the challenges local authorities need to work to overcome in engaging a group who often don’t comply with our traditional idea of what a ‘workforce’ looks like.”

Matt Bowsher, joint chair of the Association of Directors of Adult Social Services’ personalisation network, added: “There is something very distinct about the personal assistant role itself and where there is a willingness on all parts to do so, there’s no reason why personal assistants could not be put in contact with one another and offer support.

“The technical means for people to communicate with each other have never been so great, so it’s about how those networks are built, informally as well as formally. Not all of this is about what councils do, it’s about how councils could act as a catalyst for how these networks could be made.”

‘Postcode lottery’

Our investigation also found a significant variation in the learning and development opportunities available to personal assistants (standard 5 of the advice note).

While 77% of councils provided access to in-house training, the quality ranged from e-learning modules or basic induction sessions to a willingness to provide ‘any relevant training’ to the personal assistant’s role. Other councils only offered free safeguarding training and one said it would open training up to personal assistants “only if there were spaces available”.

Funding was also an issue. Of the councils that made in-house training available to personal assistants, 1 in 10 did not meet the cost. Some councils said they costed monies for training into the service user’s personal budget allocation, but would not meet the associated costs such as shift cover for the personal assistant while they attended training (known as backfilling) – the individual employer would have to fund this. Others expected personal assistants to foot the bill.

Two councils said they considered it to be the responsibility of the individual employer and the personal assistant to source and fund learning and development opportunities.

Sean says the external training he has received since his client’s family switched to the personal health budget has not been as good as when he was employed by an agency.

“When I worked under the agency I had access to a five day training package every year but now I can’t remember the last time I had that. For manual handling we were given a one hour online course, before it would have been at least a day of face to face training.”

Career development

Skills for Care’s 2014 survey recommended that local authorities support individual employers to access the Workforce Development Fund, which is distributed by the organisation on behalf of the Department of Health. The fund can be used to access additional learning and development opportunities for individual employers and their personal assistants.

Our investigation found nearly half of councils do not support individual employers to access the funding. Of those that did, some only provided information via email, while others assisted individual employers to complete the full application process.

Personal assistants were also missing out on apprenticeship opportunities (standard 3), with 82% of councils not promoting them.

standard3edits-364x400‘My employer is not able to push these issues’

Heather is keen to pursue further learning and development opportunities on top of her existing NVQ level 2 in health and social care. Although she’s done the research, it’s now down to her employer to agree to her attending and to secure the funding, which is a lot to ask of someone who already has complex needs, she points out.

“I rely on my employer to push these issues but because of her needs she’s not able to that, so it means I just go to a lady four days a week and I’m not pursuing my career.”

ADASS’ Bowsher agrees training for personal assistants is challenging. “The very difficult balance that needs to be struck here is how you create the same opportunities for people where you don’t have the same economies of scale that some of the registered providers do – volumes of workforce, training budgets, ability to fund backfilling cover.

“Wherever possible, training and development needs to take place on the job and it’s very challenging to be able to take a large chunk of time where you as the individual employer can do without your personal assistant.”

He added: “We are going to have to very creative in the way that’s done, we don’t have an infinite sea of resources here that can be provided. And I don’t think anybody wants to be responsible for creating a two tier workforce. Both groups should be equally as attractive to a potential carer.”

Recruitment support

Our findings also show that nearly two thirds of councils do not keep a register of accredited personal assistants that employers can access when looking to recruit. Of the councils that did, some held an in-house register, while others commissioned an external organisation to manage it.

The 2014 Skills for Care survey reported a 15% increase in the number of councils providing a register (from 41% in 2012 to 56% in 2014), but said encouraging councils to use one still remained a persistent challenge. The figures obtained by Community Care suggest there has since been a reduction in the number of councils providing this service.


Skills for Care’s Turner said: “We must remember that local authorities are working to ensure their actions keep employers and personal assistants safe, without removing the choice and control that is central to personalisation. Local authorities must focus their efforts on enabling informed decision making and effective risk management, rather than imposing arbitrary controls.”

When asked if personal assistant registers are a service councils would be likely to cut as a result of funding pressures, Skills for Care declined to comment further.

‘Incredibly reckless’

Matthew Egan, professional officer at Unison, said the findings were ‘especially worrying’ given the context of funding cuts that are likely to be exacerbated under the new government.

“If the personalisation agenda is being really pushed then it is incredibly reckless to do it unless you have the adequate levels of training, support and funding in place, which the findings show aren’t currently there. It’s not just bad for the worker, it’s bad for the individual employer – they are both being let down by the lack of support.

“It’s also a postcode lottery – you could be lucky enough to be in a local authority area where the council provides a good level of support and training but a lot of other people are in ones where they are just on their own.”

Government response

A spokesperson for the Department of Health said: “This data doesn’t show the whole picture – our survey of local authorities over the last three years show most do have support available to personal assistants and this situation is improving year on year.

“We know there is some variation across the country so in 2013 we published advice setting out minimum standards and we also want to make sure we facilitate the sharing of best practice in our work with partners and stakeholders.”

ADASS’ Bowsher added: “Clearly some time has passed since the Skills for Care and Department of Health guidance was published and we now have data that says very clearly that we need to look at this again and ask ourselves the question what can be done to support individual employers and what can be done to support personal assistants.

“We don’t want people feeling isolated like they don’t have any career development opportunities and there is no one to support them, whether they are an employer or a personal assistant.”

He added: “All of these comments are made in the context of significant and longstanding financial challenges, but I do think the cuts themselves should not be used as an excuse to stop us exploring every opportunity to encourage personal choice and control.”

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Age at autism diagnosis differs between boys, girls

Original post from Science Daily

‘…………Date:  April 28, 2015

Source:  American Academy of Pediatrics

Summary:  Girls are diagnosed with autism spectrum disorder later than boys, possibly because females exhibit less severe symptoms, according to a new study.

Girls are diagnosed with autism spectrum disorder (ASD) later than boys, possibly because females exhibit less severe symptoms, according to a study to be presented Tuesday, April 28 at the Pediatric Academic Societies (PAS) annual meeting in San Diego.

To study gender differences in age at diagnosis and compare symptom severity between boys and girls, researchers at the Kennedy Krieger Institute in Baltimore, Md., analyzed data from the Institute’s Interactive Autism Network. This online registry includes almost 50,000 individuals and family members affected by ASD who work with researchers to better understand the nature of the disorder. In the registry, age of first diagnosis was available for 9,932 children, and 5,103 had completed the Social Responsiveness Scale, which identifies the presence and severity of social impairment.

In the data review, researchers found girls were diagnosed with pervasive developmental disorder, an ASD impacting the development of many basic skills, at a mean age of 4 years compared to 3.8 years for boys. This also was the case with girls diagnosed with Asperger’s syndrome; girls were diagnosed at a mean age of 7.6 years for the condition, which affects language and behavioral development, vs. 7.1 years for boys.

In addition, they found girls struggled more with social cognition — the ability to interpret social cues. Meanwhile, boys had more severe mannerisms such as repetitive behaviors like hand flapping, as well as highly restricted interests. Older boys, ages 10-15, also had more difficulties with the ability to recognize social cues and use language in social situations.

“This and other studies suggest that girls with ASD, as well as perhaps older women with this disorder, differ from males in key symptoms and behaviors, particularly around social interactions,” said Paul Lipkin, MD, FAAP, study author and director of the Interactive Autism Network at Kennedy Krieger. “We must determine if the less recognizable symptoms in girls are leading not only to delayed diagnosis, but also under-identification of the condition.”

Researchers also saw an increase in the proportion of girls who were diagnosed with ASD in 2010-2013 when compared to 2006-2009. Dr. Lipkin, a neurodevelopmental pediatrician who also serves as director of medical informatics at Kennedy Krieger, believes this increase may be due to growing public awareness and that screening methods and treatment strategies may need to be modified to meet the needs of each gender.

Dr. Lipkin will present “Gender Differences in Diagnosis and Social Characteristics of Children with Autism (ASD) from a U.S. Registry” on April 28. To view the study abstract, go to

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Some children lose autism diagnosis but still struggle

Original post from Science Daily

‘…………Source:   American Academy of Pediatrics

Summary:   About one in 14 toddlers diagnosed with autism spectrum disorder no longer met the diagnostic criteria in elementary school, but most continued to have emotional/behavior symptoms and required special education supports, according to a new study.

About one in 14 toddlers diagnosed with autism spectrum disorder (ASD) no longer met the diagnostic criteria in elementary school, but most continued to have emotional/behavior symptoms and required special education supports, according to a study to be presented Sunday, April 26 at the Pediatric Academic Societies (PAS) annual meeting in San Diego.

Previous studies have shown that ASD symptoms resolve in some children over time. It is not clear, however, if these children continue to have cognitive, behavioral or learning deficits.

Researchers, led by developmental pediatrician Lisa Shulman, MD, reviewed data on 38 children diagnosed with ASD in 2003-2013 whose symptoms had resolved when they were re-evaluated about four years later. The children were among 569 children living in the Bronx who had been diagnosed with ASD by a multidisciplinary team at a university-affiliated early intervention program.

The children came from racially, ethnically and socioeconomically diverse backgrounds, a population generally underrepresented in autism studies. Forty-four percent were Hispanic, 36 percent were Caucasian, 10 percent were African-American and 46 percent were on Medicaid.

Clinicians who made the original diagnosis also provided interventions and monitored response to treatment. Over time, they noted that ASD symptoms in some children resolved, but most continued to have other learning and emotional/behavioral symptoms needing attention.

“Autism generally has been considered a lifelong condition, but 7 percent of children in this study who received an early diagnosis experienced a resolution of autistic symptoms over time,” said Dr. Shulman, director of Infant and Toddler Services and the Rehabilitation, Evaluation and Learning for Autistic Infants and Toddlers program at the Children’s Evaluation and Rehabilitation Center/Rose F. Kennedy Center at Albert Einstein College of Medicine/Children’s Hospital at Montefiore

“The majority of the children at original diagnosis displayed intellectual disability but at the point of resolution of autistic symptomatology displayed normal cognition,” Dr. Shulman added.

Although the social impairment of autism resolved and cognitive functioning (IQ) improved, researchers found that 92 percent of the children had residual learning and/or emotional/behavioral impairment. Only three of the 38 children had no diagnosis.

Language/learning disability was found in 68 percent, and nearly half had externalizing problems such as attention-deficit/hyperactivity disorder or disruptive behaviors. In addition, 24 percent had internalizing problems such anxiety, obsessive-compulsive disorder or selective mutism. Finally, nearly three-quarters of the children continued to require academic supports, such as a small class setting or resource room.

“When an early ASD diagnosis resolves, there are often other learning and emotional/behavioral diagnoses that remain,” said Dr. Shulman, associate professor of clinical pediatrics at Albert Einstein College of Medicine and attending physician, Children’s Hospital at Montefiore. “Understanding the full range of possible positive outcomes in this scenario is important information for parents, clinicians and the educational system.”

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The above story is based on materials provided by American Academy of Pediatrics. Note: Materials may be edited for content and length.

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American Academy of Pediatrics. “Some children lose autism diagnosis but still struggle.” ScienceDaily. ScienceDaily, 26 April 2015. <>.  …………’