RCSLT responded to the Department of Health and Social Care’s call for evidence on the Down Syndrome Act statutory guidelines.
We are pleased that the call for evidence recognizes the role of speech therapy and the challenges some people with Down syndrome and their families may experience accessing it.
Anything that addresses these challenges and ensures better access to speech therapy for people with Down syndrome is welcome.
Down syndrome and speech therapy
We know how much people with Down syndrome, their families and caregivers appreciate speech therapy. In a 2021 survey (PDF), 96% of respondents said that speech therapy makes their life better. 52% said it made their caregiver’s life better.
We also know the impact of not having access to speech therapy. In the same survey, people with Down syndrome told us that having less or no speech therapy during the first UK-wide lockdown (March-June 2020) had made their lives worse, including their lives society, their friendships and their education. .
What the Down Syndrome Act Statutory Guidelines Must Do
In its response to the consultation on the call for evidence, the government should set out a clear plan for how speech and language services will be better resourced to meet the communication and/or swallowing needs of people with Down syndrome.
The government must also indicate how it intends to respond to the recommendations made by the RCSLT in the areas of physical and mental health services, social assistance for adults and housing. It should also extend statutory guidance to cover justice and secure environments.
More specifically, the government must present proposals for:
- ensure that people with Down syndrome are better supported to express their preferences and wishes, to make decisions about their own lives and to live the life they want to live;
- ensure that people’s communication, food, drink and swallowing needs are identified and addressed;
- remove barriers that prevent people with Down syndrome from accessing services;
- address known health inequalities recognized in successive LeDeR reports; and
- improve the accessibility of services, in particular by adopting an inclusive communication approach, in particular by integrating the 5 good communication standards (PDF).
What else should the government do
The government must also do more. Not just for people with Down syndrome and their families and caregivers; but for those with other genetic conditions, other learning disabilities, and anyone with a communication and/or swallowing need, whatever the cause. The barriers we have identified that people with Down syndrome face in accessing services are also barriers that other people with communication and/or swallowing needs also face.
Specifically, the government must act in the following areas:
- Resources: it must make sufficient resources available to ensure that any enhanced support for people with Down syndrome does not divert resources from people with other genetic conditions and learning disabilities.
- Other genetic diseases and learning disabilities: it must also ensure that people with other genetic conditions and learning disabilities can access the speech therapy they need.
- Workforce planning: it must improve the planning of the speech-language pathology workforce, with regard to the recruitment, retention and development of the clinical specialties of speech-language pathologists, so that there is a sufficient number of speech-language pathologists with the right level of specialization in supporting people with Down syndrome and other genetic diseases and learning disabilities.
- All conditions: it must ensure that anyone with a need for communication and swallowing, whatever the cause, likely to benefit from speech therapy can access it.
RCSLT looks forward to working with the government, our charitable partners and our members, as the statutory guidelines for the Down Syndrome Act are developed, and to improve access to speech therapy for all.
Read our brief in its entirety (PDF)