Our Legal Entitlements and Problem-Solving (LEAP) Project has just published a report studying the experience of families with disabled children and Direct Payments.
The research consisted of two parts:
- We developed and circulated a Survey Monkey questionnaire in early 2018. It asked families about payment rates for personal assistants (PAs)  as well as their experiences of using Direct Payments. The survey attracted a total of 256 responses.
- Students at Leeds University, under the supervision of Professor Luke Clements, carried out a survey of English local authority hourly rates for Direct Payments. Freedom of Information requests were made to 60 social services departments resulting in 49 usable responses.
A number of respondents clearly found Direct Payments to be a very positive experience. One stating:
DP is a lifeline I don’t know how we would have managed without it in the past 10 years. It is flexible & most definitely the way forward. I would recommend it 100% [as] it gives not only us a break but my daughter time away from us. It also allows us time with other family members without having to deal with our daughters complex needs an extremely vital resource. Long may it continue.
However, a majority reported significant problems with receiving Direct Payments. Some using the phrase ‘complete nightmare’ to summarise the difficulties they had encountered and others spoke of having to ‘fight’ and ‘battle’ to get enough help. One respondent reported:
At the moment it would seem the whole system is collapsing from health, education and social services. I just keep getting told there is nothing else they can offer me, and there are no funds to help us. The social services won’t even let me have a carer’s assessment or child in need assessment. [The] services are a disgrace at the moment.
Respondents to the family survey reported an average hourly Direct Payment rate of £8.90 gross while the local authority survey gave a higher average figure of £10.57 gross.
The report highlights the following key points:
- The survey reveals deep levels of dissatisfaction with the way that Direct Payment arrangements are been administered by local authorities.
- Rates of pay for Personal Assistants (PAs) were very low, typically at minimum wage rates. It appears that in consequence that in many local authority areas there is a serious ‘market failure’ – such that authorities are arguably in breach of their statutory and public law obligations to families with disabled children.
- Getting an assessment of needs was often said to be a matter of chance, with some families learning about services through word of mouth and some reporting a wait of as long as two years to get an assessment.
- Many respondents commented that Direct Payment rates were too low to employ suitable PAs despite their local authority being willing to pay much higher rates for agency staff.
- The difficulty of finding suitable staff who were prepared to work for the rates imposed by local authorities was a major and reoccurring theme of the survey as was fear by respondents of losing the Direct Payments if they were not able to find such staff.
- The complexity of some children’s support requirements, in conjunction with poor conditions of employment, meant that many families reported finding it impossible to recruit PAs. In conjunction with increased restrictions on the permitted use of money, this could result in money being unspent.
- Money that remained unspent was usually reclaimed by local authorities after periods of time that ranged from two weeks to two years, leaving families without any support. There was only one report (from 256 replies) of pay rates being increased in order to promote recruitment of a PA.
- There was a lack of knowledge (amongst families) as to how Direct Payments were calculated and indeed what the actual rate was in individual cases.
- There are considerable shortcomings in realising the original intentions behind Direct Payments. Strict rationing of resources is resulting in families experiencing stress, an acute lack of support and prolonged ‘battles’ to secure basic services that they are entitled to by law.
The report finds that ‘the research discloses deep levels of dissatisfaction with the way that Direct Payment arrangements are administered by local authorities’.
The whole report can be seen here by
clicking on ‘Direct Payment Research’ .
 Direct Payments are moneys given directly to parents (in this case) by their local authority so that they can buy services themselves for their disabled child rather than having them arranged by the local authority.
 Personal Assistants are employed by families to provide services to their children (e.g. take them to community activities) and are paid using the Direct Payments they receive.