What Still Needs To Be Done
The recommendations noted in the Same As You are of their time. Many have been superseded by events or by new legislation that has limited what is meant by them. PIP agreements have been and gone. The FNA (Future Needs Assessment) was changed into a more complicated system of Individual Education Programmes and Coordinated Support Plans.
But despite this there are still many areas that need to be addressed
• Support for older carers – The Same As You planned that people living with parents should have a plan that looked to a future when they would live independently. Such plans only exist rarely and many people with learning disabilities are continuing to live with older parents and even growing older with siblings without a clear plan for the future. Much work has emerged over the problem of “emergency planning” for this group and Enable Scotland and the Scottish Government are due to publish a report on this. We fully support the recommendations of this report.
But there is a need for more than this. There should be a long term vision about what type of support and help people can look forward to being built into their plans. That said we do not believe that there is a huge waiting list for people for supported accommodation. Once the decision has been made for individuals to move on from the family situation then it seems that this is managed even if it does take some time. Families often talk to us with encouragement about the help they get from local authorities when this decision has been taken.
• Help to get jobs – Little seems to have changed in people with learning disability’s access to employment over the last 12 years. The main supported employment agencies are still continuing to work although over this period they have had to change their priorities to chase funding opportunities. In some cases this has meant withdrawing support from some people to give it to others. Only supported employment services supported by stable local authority funding have not suffered from this challenge.
The National Framework for Supported Employment showed that it was possible to make a plan to address some of the problem. But such proposals need to be adopted by more local authorities.
Our own survey showed a higher proportion than average in work. However many of the people described their paid opportunities as being a day or less per week and in work that was similar in nature to that other people might have as voluntary work such as in charity shops.
Much more needs to be done to drive a change in this area. Stable funding, a vision of what is to be achieved for people with learning disabilities in employment, an idea of getting ready for work as a progression, a welfare benefits system that encourages people to increase their hours of work. We provide more thoughts on this later on in the Employment section.
• Person Centred Planning – This is a central area for improving the lives of people with learning disabilities. Being at the centre of your own plan really shifts the way people are treated. The focus is right where it belongs in making real change for people.
However it does not seem that there is a consistent understanding of what a plan is across the local authorities and often there is no consistency within an authority. As a result the quality and numbers of such plans vary tremendously. Even with this looser definition and 12 years of the Same As You only about half of people known to ESAY have a Personal Life Plan.
If the basics are not right then there must be greater concerns for the more difficult challenges in people’s lives.
• Citizenship and rights – In a formal sense, things are good in this area. Some local authorities spend considerable resources in involving people with learning disabilities in locality planning and citizen panels. Even the main political parties are now producing Easy Read manifestos for elections.
However we are concerned that this masks a continuing disregard of the rights of individuals. Access to independent advocacy is limited by the resources available. Many individuals find that things are “done to them” rather than “with them”. For example, we discovered that older people with learning disabilities without advocacy support tended to be placed in care homes for older people, while those with advocates were more likely to secure community placements.
Similarly we come across people who are having their services changed without consultation or at best a token or partial consultation of some of the people who use services. This happened in Edinburgh in 2008-09, in Aberdeen in 2010, in Glasgow in 2010-11, in Dundee in 2011-12. It’s as if being a “service user” loses you your rights in modern Scotland. And the most patronising explanations are consistently given –“it would have worried people unnecessarily”.
This has led to many people looking to the law to resolve these problems. Going to law is a lengthy, time consuming and expensive process. It would be better instead if something like a Public Sector Ombudsman for people with learning disabilities or a Learning Disability Champion might help knock some heads together and resolve basic problems about citizenship and rights.
Day Opportunities – The Same As You review reported that people who used Day Services found them boirng and were often trapped in them. It made recommendations about making sure people had access to Alternative Day Opportunities. On this there has been some progress with the ESAY survey reporting a large increase in this area.
One of the implications of the Same As You was that Day Centres would only have a place in the support of those people with more profound disabilities.
Over the last ten years there have been some closures and some changes in day services. Many people have been moved out of centres and are no longer receiving any services. While the actual numbers in centres have not really changed much over the last 12 years – from about 7,500 to 6,000. There have been some movement in who is in attendance. More people with profound disabilities now use centres.
But centres remain popular for many people with learning disabilities with a range of needs. There are a range of day services that work in different ways from the traditional “isolated island” model.
• Many are now integrated with community leisure facilities.
• Others are linked to work opportunities where people enjoy a range of activities personalised to their needs and wishes.
• Other day centres don’t draw a line between community and centre activities but see them as linked in one continuum of engagement.
Part of the reason that people still value day centres is the sense of community, friendship and purpose that they gain from them.
Over the last ten year, it has become accepted that those who spend long periods of time in the “community” are seen as deviant – kids on street corners – alcohol and substance abusers in the local park, destitute on the street.
Day centres have provided a base from which people can reach out rather than just hang around shopping centres. They help people with learning disabilities gain friends and the support of peers that they cannot always get in the family home.
It is important that people with learning disabilities are part of the wider community but as that community changes we need to recognise what is happening and not adjust our policies to take account of these changes.
We think that the review should be more proactive on the future of day services and recognise that there should be clear “good practice” guidance on the future of these services. This could draw on the existing good practice in Scotland as well as drawing in new suggestions for how such services could develop.
More work needs to be done on how Alternative Day Opportunities are developing. There is some evidence that such placements are for less that two days a week for the majority of people. It is not clear what quality checks there are on such services and whether they apply to all Alternative Day Opportunities