Joint statement issued 2022
Genetic Alliance UK has been working with a group of its member organisations to ensure that the Down Syndrome Bill recognises other genetic conditions with overlapping needs to Down’s syndrome. The coalition of patient organisations we are working with all represent people who are affected by conditions that share many of the same challenges as those living with Down’s syndrome.
The Down Syndrome Bill is now an Act, and aims to ensure sufficient provisions and support are provided to those living with Down’s syndrome; however, our communities fear that people living with other genetic conditions may be disadvantaged when trying to access the same support purely based on the name of a condition.
We called for amendments to be made to the Bill to include those with genetic conditions that have overlapping features to Down’s syndrome. We are therefore hugely disappointed that the Bill passed with no amendments. We were disappointed by the lack of involvement of patient organisation stakeholders in the development of this Bill. However, the coalition has been working with the DHSC to ensure that the voice of people with other genetic conditions is considered in the development of the guidance that will implement the Act.
Our concerns:
- The Act supports only those living with Down’s syndrome, and therefore risks inadvertently creating unequal access to services in the rare community in favour of people with Down’s syndrome. Our community fears that the Act may put an incentive on public authorities with limited resources to prioritise people with Down’s syndrome against people with the same needs but different diagnoses to avoid the risk of their decisions relating to people with Down’s syndrome being challenged under the Down Syndrome Act.
- As one of the most common causes of learning disability in the UK, Down’s syndrome benefits from a level of profile in the public and parliamentary consciousness which has enabled it to warrant a Private Member’s Bill to focus on it alone. That is not possible for those with less well-known genetic diagnoses associated with learning disability. Taken together these less well known genetic conditions greatly outnumber cases of Down’s syndrome.
- The Act fails to address the underfunding of public authorities which is the main reason people with Down’s syndrome (and those with other genetic disorders causing learning disabilities) do not receive the health, social care, education, housing and employment support that they are already entitled to receive.
- Our community and the people we represent have expressed concerns over the divisive nature of the Act. They are already greatly disadvantaged by the difficulties in accessing support and services outlined in the Bill but they also face greater feelings of isolation and lack of understanding by virtue of having rarer conditions. We fear that the Down Syndrome Act will further entrench in law disadvantages they face as a community.
- This Bill could have easily been widened to extend its potential benefits to everyone with learning disabilities caused by Down’s syndrome and other genetic/chromosome disorders. We note previously expressed concerns that extending the Bill would make the Bill so wide as to lose any identifying characteristics. That is not the case with people who are diagnosed with genetic and chromosome disorders. Their needs are just as clear as Down’s syndrome. They are merely less well-known to the public.
The coalition has been engaging with the Neurodiversity, Disability & Learning Disability Team at the Department for Health and Social Care developing the guidance to ensure that the voice of people with other genetic conditions is considered in its development. Stephen Kinnock, Minister of State for Care, has now recognised that this Act does not remove the duties of the Equality Act. The full statement can be found here.
We would like to thank the organisations that we have worked with so far on this topic for their contributions and ongoing collaboration: Angelman UK, Cri du Chat Support Group UK, Max Appeal, Prader-Willi Syndrome Association UK, Ring 20 Research and Support UK, Smith Magenis Syndrome Foundation UK, Williams Syndrome Foundation, SWAN UK, Fragile X Society and Unique.
For more information, see the full account of our work that has been done to date on the Down Syndrome Act.
Genetic Alliance UK will continue to engage with its members and the DHSC to ensure that the Down syndrome Act guidance will support the needs of people with Down’s syndrome and other genetic conditions. Genetic Alliance UK encourages its members to respond to the live consultation from the Department of Health and Social Care.
