RCSLT responds to Down Syndrome Act call for evidence

RCSLT has responded to the Department of Health and Social Care’s call for evidence on the Down Syndrome Act statutory guidance.

We are pleased that the call for evidence recognises the role of speech and language therapy and the challenges some people with Down’s syndrome and their families can have accessing it.

Anything that addresses those challenges and ensures improved access to speech and language therapy for people with Down’s syndrome is to be welcomed.

Down’s syndrome and speech and language therapy

We know how much people with Down’s syndrome and their families and carers value speech and language therapy. In a survey in 2021 (PDF), 96% of respondents said that speech and language therapy makes their lives better. 52% said it makes their carer’s life better.

We also know the impact not having access to speech and language therapy can have. In the same survey, people with Down’s syndrome told us that having less, or having no, speech and language therapy during the first UK-wide lockdown (March-June 2020) made their lives worse – most notably their social life, friendships and education.

What the Down Syndrome Act statutory guidance needs to do

In its response to the call for evidence consultation, the government must set out a clear plan of how speech and language therapy services will be better resourced to meet the communication and/or swallowing needs of people with Down’s syndrome.

The government must also set out how it proposes to respond to the recommendations that the RCSLT has made in relation to physical and mental health services, adult social care, and housing. It must also extend the statutory guidance to cover justice and secure settings.

Specifically, the government must bring forward proposals to:

• ensure that people with Down’s syndrome are better supported to express their preferences and wishes, to make decisions about their own lives, and to live the lives they want to live;
• ensure that people’s communication, eating, drinking and swallowing needs are identified and supported;
• remove the barriers that prevent people with Down’s syndrome accessing services;
• address the known health inequalities recognised in successive LeDeR reports; and
• improve the accessibility of services specifically through adopting an inclusive communication approach, including through the embedding of the 5 Good Communication Standards (PDF).

What else the government must do

The government must also do more. Not just for people with Down’s syndrome and their families and carers; but for those with other genetic conditions, other learning disabilities and everyone who has a communication and/or swallowing need, whatever its cause. The barriers we have identified that people with Down’s syndrome face in accessing services are barriers other people with communication and/or swallowing needs also face.

Specifically, the government must take action in the following areas:

• Resources: it must make sufficient resources available to ensure that any improved support for people with Down’s syndrome does not divert resources from people with other genetic conditions and learning disabilities.
• Other genetic conditions and learning disabilities: it must also ensure that people with other genetic conditions and learning disabilities are able to access the speech and language therapy they require.
• Workforce planning: it must improve workforce planning for speech and language therapy, in relation to the recruitment, retention and the development of clinical specialisms of SLTs, so that there are a sufficient number of SLTs with the right level of specialism to support people with Down’s syndrome and other genetic conditions and learning disabilities.
• All conditions: it must ensure that everyone with a communication and swallowing need, whatever its cause, who could benefit from speech and language therapy is able to access it.

Next steps

The RCSLT looks forward to working with the government, our charity partners and members, as the Down Syndrome Act statutory guidance is further developed, as well as on improving access to speech and language therapy for all.

Read our submission in full (PDF)