The Minister for Care (Helen Whately)
I would like to thank the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) for securing this debate on this important topic, and also for her work as chair of the all-party parliamentary disability group. Thanks to her, we are marking Down Syndrome Awareness Month here in the House with this debate today, and I am truly pleased that we have this opportunity to celebrate the brilliant contribution that people with Down’s syndrome make to our society, and also all the work of the many people and organisations who support those with Down’s syndrome to live their lives to the full.
Today, the hon. Member has outlined some fantastic stories about the achievements of people with Down’s syndrome, and also their hopes and dreams. I would like to share Michael’s story with the House. Michael has Down’s syndrome, a visual impairment and the muscle condition hypotonia. Despite his family being warned by doctors that he would probably need a wheelchair for the whole of his life, Michael has represented Wales and Great Britain in the Special Olympics and he has won more than 60 medals, which is an incredible achievement. He has not let the pandemic stop his plans. Earlier this month, he ran his first marathon in support of Mencap. He ran through rain, wind and mud to complete the virtual route around his local area in Wales. I want to take this opportunity to extend my congratulations to Michael on such an outstanding achievement.
While Michael’s achievements stand out as an inspiration to us all, I also want to celebrate the everyday achievements and contributions that people with Down’s syndrome make to their families and our communities, and the contribution they make to employment through participation and through love, friendship and laughter, enriching all our lives. That said, people with Down’s syndrome still face too many challenges and barriers. I want to see a society that works for everyone, where everyone can participate fully, feel included and be free to be themselves, so I want to talk briefly about some of the work we are doing to ensure that disabled people, including those with Down’s syndrome, are enabled to live full and rewarding lives.
First, in education, our ambition is for every child, no matter what challenges they face, to have access to a world-class education that sets them up for life, and that absolutely includes children and young people with Down’s syndrome. Supporting children, young people and adults with special educational needs is a particular need for us at this time, and our aim, even during the pandemic, is that education, health and care continue as far as possible, so that children and young people with SEND get the provision and support they need to fulfil their potential and achieve their ambitions.
The hon. Member spoke about work and employment in her excellent speech. We want everybody to have the opportunity to participate in meaningful and rewarding work and to gain the life skills and rewards that come from doing that. I am sure she knows from her work on the APPG that the Government have several programmes in place to support disabled people. An example is the Access to Work grant, which enables employers to buy personalised and tailored support to help disabled people to move into and retain employment. I should also say that, during the pandemic, Access to Work has particularly strengthened its support by making greater use of assistive technology and supporting the transport of assistive technology from workplaces to homes to enable more disabled people to work from home.
There is also the intensive personalised employment support programme, which helps disabled people with complex needs who want to work but require specialist support to do so, and the Disability Confident scheme, which supports employers to have the confidence to recruit and retain disabled people. However, I will take away the hon. Member’s question about what specific support is available through the kickstart scheme for people with disabilities, and also her point about particular schemes for those with disabilities to start their own businesses.
I also want to talk about health inequalities. We had a brief exchange about the improved life expectancy for people with disabilities, particularly those with Down’s syndrome, but despite the increase in life expectancy, there are still health inequalities facing those with Down’s syndrome and also those with learning disabilities. For instance, they are more likely to experience premature mortality. The recent Learning Disability Mortality Review report stated that the life expectancy gap for those with learning disabilities is 22 years for men and 27 years for women. That is absolutely not right.
Bob Stewart
When I was born in 1949, the life expectancy of someone with Down’s syndrome was 12 years. The life expectancy now, we hope, is somewhere in the 60s or 70s. I am sure the Minister will agree that we have to find a way to employ these people properly, and not just because, as some people would say, they are disabled; in my view, they are not.
Helen Whately
I completely agree with my hon. Friend. I do know that those with Down’s syndrome are in employment, but let us continue to support that as one of the rewarding things for everybody to experience in life. As he said, life expectancy has indeed improved enormously, but I am ambitious and determined that we go further and make sure that we reduce health inequalities for people with disabilities.
Rachael Maskell
I appreciate that this is a really sensitive topic, but we know that coming into the world is a real challenge for somebody with Down’s syndrome. Will the Minister go away and look again at the conversations that are had with parents who are diagnosed in pregnancy with somebody with Down’s syndrome and see how we can change that conversation, so that people can understand the positivity of bringing up a child and raising someone into adulthood with Down’s syndrome?
Helen Whately
The hon. Member makes a really important point. It is clearly a very difficult and sensitive topic, but it is absolutely the case that if, during pregnancy, any abnormality is detected or suspected there should at no stage be any bias towards abortion, which is what, as I understand it, she is referring to. I want to make that absolutely clear. It must be the case that all health and care staff involved in the care of a woman or a couple who might be considering the termination of a pregnancy must adopt a non-directive, non-judgmental and supportive approach. That absolutely should be the case throughout our health system. Should anyone experience anything different and find that that is not the case, they should raise it, because women and couples should be supported in a positive way so that they can make the right choice for them. I am choosing my words carefully given that this is a very sensitive topic.
While I have the opportunity, I want to talk briefly about the importance of the Oliver McGowan mandatory training in learning disability and autism, which the Government have committed to rolling out to make sure that all health and social care staff receive training in learning disabilities and autism. That is really important to make sure that people with those conditions get the right and appropriate care when they are in the health and care system, including, I should say, for end-of-life care, making sure that do not attempt CPR—cardiopulmonary resuscitation—orders are used appropriately.
In the light of the pandemic, one thing that has been raised with me, particularly for those who are caring for those with disabilities, is the importance of day services and respite services. I have been working really hard, including with the Social Care Institute for Excellence, on guidance to support the reopening of day services and to encourage local authorities to make sure that those are reopened.
To conclude before we are out of time, I am so glad that we have had this debate and been able to talk about the contribution that those with Down’s syndrome make to our society, and, to use a phrase from the excellent speech by the hon. Member for East Kilbride, Strathaven and Lesmahagow, to have made our contribution to changing the narrative. It is crucial that we should celebrate the achievements and contributions of those with Down’s syndrome to our society, so we have been and are taking action to support those with disabilities, including Down’s syndrome, but I believe that we can always do more and go further. So I say, let’s do that. Let’s do more and go further to support people with Down’s syndrome to achieve their dreams.
Question put and agreed to.