Personalisation: People with learning disabilities train assistants

People with learning disabilities have devised a course to train personal assistants they might later recruit. Louise Hunt reports on how control is being transferred to the service user

Most of my life other people have been making decisions for me,” says Claire Massa, who has learning disabilities. “Without a personal assistant I won’t be able to achieve what I want to achieve. I want to be able to choose who I want to look after me, rather than have others controlling me.”

Massa is taking back control over her life by leading a training course for personal assistants that aims to equip them with an understanding of the specific needs of adults with learning disabilities.

The Connect Works training programme was developed by a group of people with learning disabilities, who are part of Leeds-based inclusive living charity Connect in the North (CitN). The course was launched this summer to address the problems members were facing in finding suitable support staff to meet their needs.

Personal budgets

The government is pushing for more people with learning disabilities to use personal budgets, but the reality is that many potential recipients find recruiting their own staff too daunting.

“This is why there has not been a big uptake of direct payments,” says CitN trainer consultant Sarah Wheatley, who was involved in co-ordinating the Connect Works training team. Instead, many people remain reliant on voluntary organisations and day centres for support. “But if they had personal assistants they could go to work or college. It gives people absolute control,” says Wheatley.

The idea for people with learning disabilities to be able to choose and train their own recruits came out of a planning day, looking at the issues that most concerned CitN members.

In response, a Connect Works training team, formed of trainers with learning disabilities and directors from CitN and local social enterprises Pride and Rooots was formed.

The team interviewed 87 local people with learning disabilities and their families to identify the most important attributes of potential support staff.

“Values about putting their employer’s needs first were seen as more important than previous experience of working with people with learning disabilities,” says Wheatley.

Job descriptions

The team used the research to inform job descriptions and the training programme, and placed recruitment adverts in local papers. “We got an amazing response from people applying to do the training course, especially as we weren’t guaranteeing jobs at the end of it,” Wheatley says.

The first Connect Works course took place in July over four weeks and the programme has gained funding from the social care workforce body Skills for Care to run as a pilot until December. The course covers health and safety and confidentiality. It includes sessions on communication skills and uses role play to explore the frustrations people with learning disabilities feel when they are controlled by others.

Massa says of her experience of living in a care home: “Having to watch soaps everyday with everyone else drives me crazy.” Wheatley adds: “It is about making sure PAs listen and find out what people want.”

After the training the prospective PAs are given a certificate and are placed on a list of applicants for trainers to choose from.

Accredited course

CitN is investigating whether the course could be accredited to count towards an NVQ. It is also looking into how it can secure funding for next year.

Tim Snell, one of the six PAs who completed the course, has worked with people with learning disabilities for more than 30 years and been on countless courses run by professionals. He says the emphasis on understanding people’s feelings “definitely helps to involve people in choices and decisions, even though you hope that you do so already, that message was being reinforced all the time”.

Snell, who works in a Fulfilling Lives day centre in Leeds, has been asked by one of the trainers to work with him as a relief worker. “So something has come of it,” he says.

Hiring one of the trained PAs could give Massa and other team members more control over their lives. Massa does not yet have a PA, but is talking to her social worker about going on to direct payments to employ one, which could allow her to leave her care home and live independently.

“Having a PA would help me book my holidays and help with budgeting,” she says. “I’m no good with money. I spend it straight away and, without support, I could go into arrears. They could also help to prevent me taking risks. I’m a very easily led person. It would make a big difference to me.”

Wheatley believes Connect Works has great potential to be replicated nationally. “It is incredible to be part of a team where people with learning disabilities are running a course they have written themselves.”

● Connect in the North

Top tips

● Interview people with learning disabilities locally first to find out what is important to them.

● Try to include someone with experience of using direct payments to the training team.

● Try to recruit some trainers with previous experience of running training programmes.

● Run courses in the evening and during weekdays to attract a broader mix of people.

● Don’t rush the course four weeks might not be enough.

This article is published in the 23 October issue of Community Care magazine under the heading Turning the tables