We have contacted the Minister for Health Stephen Donnelly, Minister for Disabilities Anne Rabbitte and the HSE to highlight the lack of access to vital therapies for children and adults with Down syndrome due to the redeployment of vital therapists into roles such as Covid testing and contact tracing.
Access to therapies such as Speech and Language, Occupational and Physiotherapy was already poor before the pandemic, with the majority of people receiving 5 sessions or fewer in 2019. This has been significantly reduced by the pandemic response, which has seen around half of all therapists redeployed within the HSE and left many families unable to access therapy at all.
Highly trained therapists are unable to provide therapy because of redeployment into roles such as Covid testing and contact tracing. While this was understandable in the early days of the pandemic, it is unforgivable that it is continuing at this stage. We understand that these are essential tasks, but they should not be provided by therapists who already have roles within the HSE which are over-stretched and under-resourced.
- There needs to be an immediate, fast-tracked recruitment drive, to recruit people specifically for test and trace roles.
- We need to stop redeployment of therapists and allow them to resume therapy for people who need it.
- There needs to be urgent communication with families about when they can expect to resume therapy.
- In the longer term, direct therapy provision has to increase.
- Explicit care pathways need to be developed that communicate clearly to families what supports they are likely to need and how to access them.
- Staffing needs to be provided to meet those needs. The IASLT has long recommended caseloads of 2-3 therapists per 100 children with complex needs, and the disrespect shown to the profession by the HSE in disregarding those recommendations is shocking.
Currently, large caseloads mean that many therapists on early intervention teams either run long waiting lists or deliver therapy exclusively through parent training. This ‘hands-off’ approach may be the only pragmatic option when faced with unmanageable caseloads, but it is not based on evidence and is not meeting the needs of parents or children. Parent training can be a valuable tool in therapy only if the therapist is able to put many hours into direct coaching and modeling with individual parents.
We need more Speech and Language Therapists, Occupational Therapists and Physiotherapists.
We need early intervention services that will deliver direct therapy or intensive coaching to parents at a meaningful level, ideally 1-2 hours per week, rather than 5 hours a year. We need therapy to continue throughout the school years, to ensure that children continue to develop their skills and have the best chance of accessing the curriculum and succeeding in education. We need therapy to continue into adulthood if required. There is no evidence of a plateau in learning for people with Down syndrome, with speech, language and literacy skills continuing to improve in adult life if appropriate teaching and therapy is provided. We need therapy for people with Down syndrome as they age. Regular language assessment and therapy could be valuable in maintaining skills and picking up early signs of dementia.
Article 19 of the (UDHR), states that everyone has a “right to freedom of opinion and expression”, including the right “to seek, receive and impart information and ideas through any media and regardless of frontiers”. People with Down syndrome will need additional support throughout life to ensure that they are able to develop and maintain the skills to exercise this right. They need to have access to the level of services they require in order to achieve their communication potential.
In the short term, this means ending the redeployment of therapists.
In the longer term, it means significantly increasing the level of therapy provided across the lifespan.
WE NEED YOUR HELP!
Together our voices are stronger – PLEASE contact your local TDS and Senators asking them to highlight the issues around the redeployment of vital therapists.