Down Syndrome Bill

Baroness Uddin Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Baroness Uddin (Non-Afl)]

My Lords, it is an honour to follow the noble Lord, Lord Wigley. His words echoed not only throughout the Chamber but throughout the country with mothers, families, and the individuals on whom I hope this legislation will impact.

I also support the Bill. It is a privilege to be able to take part in this debate where there is so much consensus across Parliament. I am grateful to the right honourable gentleman Dr Liam Fox in the other place and to the noble Baroness, Lady Hollins, who has long been a heroic champion of disability rights. I remain in awe of her continuous work.

I am blessed with a 43 year-old son who lives with autism and learning disabilities, and the words of the noble Lord, Lord Wigley, touched my heart. My family has long battled with serious challenges within services. If I spoke about the experiences 40 years ago I would still be wailing, as I wailed then, battling institutional discrimination against disability rights. We as a family long resisted my son being called mad, bad or handicapped, as once was acceptable, despite legislation being in place.

I also have a son who recently became an amputee—a traumatic and heartrending experience. I cannot really say that I have learned how best to describe the impact of his traumatic incapacitation and disability as yet. I agree with so many parents and activists who have taken time to write to remind me that language is very important, and that there are no hierarchies of disabilities or of the experiences of people who are born with different abilities. So many of our loved ones face a level of discrimination and struggle for equity and social justice, even with the basic rights of education, housing, employment and social care provision. Noble Lords have already spoken eloquently and described some of the discrepancies in services and provisions, so I will not go into that. Nevertheless, although we have mostly developed more respectable language, shortfalls remain the norm in all institutions. They should uphold the dignity and equality of people who live with disabilities.

As has been said, the Bill would require the Secretary of State to give guidance to relevant authorities to meet the appropriate needs of people with Down’s syndrome, have due regard to and require consultation with people with Down’s syndrome, and, more importantly, publish a report and lay it before Parliament. However, all that could be just rhetoric and written reports if the Government do not take it seriously and local authorities and all the health and social care institutions are not mandated to do so.

The Bill has rightly received positive responses from many organisations, with the aspiration that it will support provisions, including health, education, employment and care needs, for people with Down’s syndrome throughout their lives. It is expected to pave the way for more equitable services for people with Down’s syndrome, which may result in greater parity of services and care available to other people with disabilities who benefit from statutory care provision.

It would be remiss of me not to bring the House’s attention to the discussion on the Bill which has highlighted the worrying level of disparity experienced by people who live with disabilities. Regardless of the fact that many have achieved a high level of education, it appears to make no difference to their life chances, including access to employment. I know that; I am not just speaking from the reports and representations I have received. I have worked in the profession as a social worker and with families and small NGOs in my locality. I have direct experience, so these are not just words from reports; I am highlighting the experiences of many others who are unable to be in the House or the other place.

Only around 6% of people with learning disabilities are in employment so far; we have not achieved beyond that. We have a long way to go. The Down’s Syndrome Association, the National Down Syndrome Policy Group and Mencap are the experts and, while welcoming the legislation, they are rightly asking how the Government will address the worrisome statistics on outcomes for all people with disabilities with regard to education, employment and so forth. For example, how will the postcode lottery of statutory and voluntary-led services be addressed?

From my personal experience over 40 years, I know that mainstream schooling for children who need specialist support remains the purview of the most elite parents. Despite the fact that I sit in this House, I never had the privilege of being regarded as one of the elite who can advocate for my son, even all those years ago. Whenever I spoke, I was regarded as if I was so mentally challenged by the fact that I was an Asian woman and my firstborn was a child with learning disabilities that, somehow, that scarred my mental ability to fight for the justice that he as an individual deserved. So many people still say that that is the case, and that is something that all Members of your Lordships’ House and the other place should be concerned about. Given the many decades of inertia that have persisted in local health authorities—supposedly working in the best interests of the individual child—how will the legislation bind statutory services to their obligation to provide the necessary resources and funds?

I am pleased that Dr Liam Fox in the other place and the Down’s Syndrome Association have raised important and outstanding matters of the deepest significance for these debates, so that we can meaningfully impact the lives of people with Down’s syndrome. This legislation is indeed an important milestone, and I agree entirely with the noble Lord, Lord Wigley, when he asserts that it will be a small stepping-stone to much advancement on disability rights. We all hope that the Bill will enable more people with Down’s syndrome to live with dignity and respect.

As has been stated, the House should know that Mencap supports and welcomes the Bill. It feels it could be the foundation for legislation to support people with learning disability more widely and sees this as a defining moment to set up a bigger conversation that will, hopefully, lead to a cross-government learning disability strategy.

Alongside the Down’s Syndrome Association and the Down Syndrome Policy Group, the LGA is seeking urgent government assurances that they will complete their ongoing review of the special educational needs and disability system, setting out reforms and increasing mainstream inclusion, providing councils and schools with long-term certainty of funding to meet the needs of all children, and giving councils the power to hold education and health partners to account if their provision to identify and support children with SEND is inadequate. I hope the House will agree with the LGA; it has been more than a decade since the last strategy, Valuing People Now, was published. With all this good will in place, what plans are afoot to formulate a new national disability strategy?

Finally, in recognising that there are parents such as me from what is termed a minority group, although our children are ethnically British in every way, one report after another of late has finally conceded that there is discrimination and disparity across all institutional services for minority groups. In the experience of people with Down’s syndrome and their families, who are not a homogenous group, discrepancies have been highlighted by groups such as Include Me TOO, a member organisation that advocates on behalf of ethnic-minority families who care for loved ones who live with disability. The organisation feels totally excluded from all aspects of decision-making in the mainstream, and it is clear that many of the family members seeking the organisation’s support and advocacy continue to feel disadvantaged by their gender, race, ethnicity and faith while journeying through statutory and NGO services. That has left many scarred, with lifelong adverse impacts on their life chances, and negative outcomes for countless individuals and broken families. It has caused untold long-term physical and mental health damage for individuals with disability and impacted on their carers’ and loved ones’ well-being.

I ask just two quick questions. How will the diversity of people with Down’s syndrome and their families be recognised in the legislation and the guidance? How will the Government ensure that the voices of the individuals and NGOs that are consulted come from wide-ranging backgrounds and reflect adequately the needs of gender, race, cultural and faith aspects of people with Down’s syndrome? Will the Minister commit to leading a robust equality impact assessment before commencing the development of guidance to inform the process, and ensure that the consultation and guidance address people with Down’s Syndrome in all their diversity?