The role of public services is “to help people, no matter how complex their disability, to live full and equal lives in their local communities”. So said the 2001 white paper, Valuing People. Following its publication, Mencap, in partnership with the Foundation for People with Learning Disabilities, convened a group of voluntary sector organisations and formed the PMLD Network.
Together we wrote a response to the Valuing People white paper. We predicted that unless there was a specific focus on the needs and rights of this disadvantaged group, they would remain excluded.
Over the ensuing years that prediction proved to be largely accurate, with many families of people with profound and multiple learning disabilities (PMLD) holding the view that, far from things improving for them since Valuing People was launched, some things had actually got worse. It seemed that although the intention had been to be inclusive of all people with learning disabilities, the actual experience of most people with PMLD and their families was very different.
However, in 2009 the Department of Health (DH) launched Valuing People Now, which acknowledged that some people, particularly those with complex needs, had been missing out. It made “including everyone” apriority for the next three years and set out the intention to commission a report on good practice in providing services to people with profound and multiple learning disabilities. The DH commissioned Professor Jim Mansell to carry out this work and his report, Raising Our Sights, was published in March.
The PMLD Network has contributed to the development of the report by meeting with Mansell to give their views on the issues and also by assisting him with his call for good practice examples. I personally had the opportunity to visit some of the families and services whose stories have helped to shape the recommendations in Raising Our Sights and some of whom are featured in the accompanying video.
What is particularly welcome about the report is that while it does indeed set out some inspiring examples of good practice, it does not duck the experiences of the greater majority of people with profound and multiple learning disabilities and their families. The report clearly sets out the evidence which demonstrates the complexity of people’s needs, the lack of family support and the reasons why people with profound and multiple learning disabilities remain some of the most marginalised people in our society.
Raising Our Sights gives the strong message that the current government agenda on personalisation is most certainly the right direction of travel to meet people’s needs. Case studies illustrate that good services are person centred, treat the family as expert, focus on the quality of staff relationships with the person, sustain the package of care and are cost-effective.
However, the report also describes some serious barriers that must be overcome. These include specific obstacles, such as the disincentives to provide suitable housing, the problems encountered in using wheelchair services, and the shortage of further education places. There are other more fundamental barriers such as funding high cost support, especially in the current economic climate.
There are two striking things about the families whose packages are described in this report. The first is that to get the packages in place, families had to have both ability and determination to demand a better life for their son or daughter, and indeed for themselves. Sometimes this fight had been driven from the bad experiences of using other services. Others were driven by the simple belief that there must be something better than what was on offer.
We can only applaud their energy and persistence. But people should not have to fight for their services, and let us make no mistake, there are inevitably costs to their physical and emotional well-being in having to do so. Not all families can take on that fight and they should not have to.
Second, there were examples of families who had been fortunate to get the support of health or social care professionals who worked with them to get the package in place. For example, the primary care trust that pays funding direct to the family and did so well before anyone had even mentioned health budgets.
It was heartening to hear one family say they knew nothing about the health and social care system at all, indeed English was not their first language and they found it all quite bewildering. But because the CHC assessor had taken on the role as their bridge to all of that, they got what they needed for their daughter.
They trusted the assessor and were delighted with the way she thought flexibly and creatively about the best way to meet their daughter’s needs and then helped them toput everything in place. In my experience, these people are few and far between. But what a difference they make. Isn’t this the account of services that we really want to hear from all families?
Following the DH commissioning research on prevalence, it is now estimated that there are just over 16,000 adults with profound intellectual and multiple disabilities in England.
Jim Mansell says in his report that “the fact that this is a relatively small, easily identifiable group with undeniable needs for support should make improving services easier”. While the current economic climate may be difficult and affect the pace of change, he suggests that this should not change the direction of policy and practice, and I would urge you to read his report for its inspiring examples of good practice and clear recommendations.
People with profound and multiple learning disabilities (PMLD) have more than one disability have a profound learning disability have great difficulty communicating need high levels of support may have additional sensory or physical disabilities, complex health needs or mental health difficulties may have behaviours that challenge us. PMLD Network 2005 www.pmldnetwork.org
“The major obstacles to wider implementation of policy for people with profound intellectual and multiple disabilities are prejudice, discrimination and low expectations. I have called this report Raising Our Sights because I believe that we can achieve considerably more for this group of people than we have in the past.” Professor Jim Mansell
“Victoria is a woman without words. But if she doesn’t get what she wants she can challenge! She is nearly 40 now, but in her 20s she was unhappy with the people she shared with. We were told Victoria must go into a nursing home as she has health problems and it was ‘far too dangerous’ for her to have her own place. I pointed out that when she had been in hospital, they were the ones that had nearly killed her.
“We knew what we wanted, a bungalow to share with a friend. We found one, we fought for it and got it, but the doctors washed their hands of us. My background was social work and I knew about campaigning, but it was all such a struggle. Everything was a battle, from getting a tenancy for Victoria, to getting her the right support. But we made it. We still have to fight sometimes.
“When her friend died the council wanted to move in a six foot four man with autism. They saw it as a ‘placement’, we saw it as Victoria’s home. We thought she should choose who lived with her and we won that argument. Now she happy and settled and she is a role model for others who want to live independently.” Jean Willson
