Down Syndrome Act - joint statement

PWSA UK has been working with a coalition of genetic disability groups to ensure that the Down Syndrome Bill does not disadvantage those living with rare and genetic conditions. The 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 will 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 significant overlapping features to Down’s syndrome. We are therefore hugely disappointed that the Bill has passed with no amendments. We are further disappointed by the lack of involvement of patient organisation stakeholders in the development of this Bill and hope to be included in the development of guidance that will follow.

OUR CONCERNS:

• The Act supports only those living with Down’s syndrome, and therefore discriminates against people living with other genetic and chromosome diagnoses causing learning disabilities. 
• The Act puts 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 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. 
• Marking out people with one specific genetic disorder as deserving of more special attention than others is divisive and has caused enormous concern and upset to the people we represent. 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. 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.
• Our group believes that the current fundamental principle that support and access to services should be made on the basis of need rather than diagnosis, should be maintained.

The Department for Health and Social Care has launched a Call for Evidence so that it can consider comments from parents and carers of people with other genetic conditions, including Prader-Willi syndrome. Find out more here.