Hansard

I thank everyone who has been involved in developing the new learning disability strategy, “The keys to life”. In particular, I thank citizens of Scotland who have a learning disability, who have been at the heart of the strategy’s development.

Our main focus today is to debate the new strategy, but first I want to contextualise what it means to be a Scottish citizen and have a learning disability. The exact number of people with a learning disability in Scotland is unknown, but according to published statistics approximately 16,000 school-age children and young people and 26,000 adults have a learning disability and require support.

Our population of citizens with learning disabilities is not a homogeneous group. Some people with learning disabilities will require just a little support, while others with more complex needs will rely entirely on family members and paid carers for all aspects of daily life.

What is true is that every person with a learning disability is an individual like you and me, with hopes, aspirations, dreams and rights. Like many nations, we have a shameful history of policy and law that aimed to reduce the social problem of learning disability through segregation, isolation and—unthinkable today—sterilisation. In finding a solution to the historically viewed burden of people with learning disabilities, we have come from the acceptable place of segregation in the earlier part of the 20th century through recent manifestations of community care and eventually to today’s position where citizens with learning disabilities have the right to individualised budgets and personalised support. There is therefore much to welcome in this new learning disabilities strategy.

We of course believe that every citizen has the right to live longer, healthier lives. I believe that providing person-centred, safe and compassionate care that protects individual rights and empowers independence is a fundamental duty of our society, our services and indeed our Government. That is why I firmly support this new strategy. It does not purport to suggest that all is well; it acknowledges both the distance that we have come since the publication of the first learning disabilities policy in Scotland, “The same as you?”—and I must heap praise on the previous Executive for bringing that forward—and where our collective journey should take us to in future.

The strategy acknowledges that many people with learning disabilities would like to work, live independently, have meaningful relationships and feel safe within their communities. However, almost 9,000 adults with learning disabilities in Scotland live with a family carer, and 14 per cent of them with a family carer aged over 50; fewer than one in 20 adults with a learning disability is in any form of paid work; and research has shown that two out of every five children born to parents with learning disabilities are permanently removed from their care.

As I mentioned in my intervention on the minister, the Education and Culture Committee’s report, which was published yesterday, provides evidence from learning disabled parents about their absolute desire to be treated as individuals and to have their cases treated on a case-by-case basis. They felt—with some justification—that the permanent removal of 40 per cent of children born to parents with learning disabilities was not something that happened in the normal daily run of things.

There is still much work to be done. Nevertheless, the Social Care (Self-directed Support) (Scotland) Act 2013, which was introduced earlier this year, will empower individuals to have greater control over decisions affecting their lives, including the support required to live as independent, as safe and as meaningful a life as possible.

As I have said, the exact number of people with learning disabilities in Scotland is unknown. I would now like to turn my attention to that issue and, indeed, the issue that makes up the main body of this new strategy—health inequalities.

I have read with dismay the early mortality statistics for people with learning disabilities that other members have mentioned, with some reports from England suggesting that men die up to 13 years earlier and women up to 20 years earlier. The important point is that most of those deaths were unexpected, premature and avoidable. I am also aware that those findings are supported by the determinations of a number of fatal accident inquiries in Scotland. That is simply unacceptable, and it is why I whole-heartedly endorse the strategy’s recommendations that aim to understand the causes of such unacceptable early mortality rates and place a duty on local NHS partners to implement change.

We have moved from our shameful out-of-sight, out-of-mind service provisions to a position of inclusion and, I hope, individuality—or have we? People with learning disabilities remain invisible in our routinely collected health data, and we are unable to measure, trend or predict the health of our citizens with learning disabilities. That is why I welcome and warmly endorse the creation of the Scottish learning disability observatory and eagerly await its outputs. It should provide us with the evidence and information that we require to take further action to right this unacceptable position.

The strategy also acknowledges the differences in health presentations between Scotland’s general population and people with learning disabilities; acknowledges the difference in the leading cause of death and in cancer presentations; and acknowledges that public health measures for all citizens of Scotland that have been developed with the best of intentions can in fact widen the health inequality gap for citizens who have a learning disability.

I warmly welcome the strategy’s recommendations, which seek to address the matter. I particularly welcome the recommendation to seek to develop a HEAT target for our NHS to ensure that people with learning disabilities are visible in routinely collected data and importantly, as other members have mentioned, to ensure that the new GP contract in Scotland will best meet the needs of our citizens who have a learning disability.

The new strategy further acknowledges that people with learning disabilities have the right to access the full range of services that all citizens of Scotland access. It also rightly acknowledges that, from time to time, some people with a learning disability will require reasonable adjustments, including access to specialist support to enable access to mainstream services.

Citizens of Scotland who have a learning disability have the right to safe, effective and person-centred healthcare, and we have the responsibility to ensure that that is delivered every time. Citizens of Scotland who have a learning disability have the right to work, and we have the responsibility to ensure that that happens. Citizens of Scotland who have a learning disability have the right to affordable housing with the right support, and we have the responsibility to ensure that that is delivered. Finally, citizens of Scotland who have a learning disability have the right to feel safe. We have the responsibility to ensure that that is the case not just some of the time, but all the time.

I very much welcome the new learning disability strategy and look forward to all citizens with learning disabilities in Scotland being given the keys to their lives.

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