Vanessa, mum to Edith, writes about the challenges she experienced trying to access speech and language therapy for her daughter, and why we need dedicated therapy recovery. August 2021.
When parenting a child with additional needs, you find that certain needs require the sort of support and input that go beyond the realms of the abilities of a parent. As a parent, you become dependent on others, and getting what is best for your child becomes out of your control or reach. It’s no wonder so many parents end up with anxiety and exhaustion.
My four-year old daughter, Edith, has Down’s Syndrome.
Edith’s most significant developmental delay is her speech. We did a lot of work with her from an early age to support her speech development at home – but it simply was not improving, so we were referred to our local Speech and Language Therapy (SALT) service in June 2019 when she was 2 years old.
The bad – Lack of communication and lack of service:
- There was no communication over what was happening with the service due to Covid-19 from March 2020.
- When applying for an Education, Health and Care Plan (EHCP) in November 2020, no response at all was made by the service to the EHCP team’s request for a report. At this stage, we still had not even had an initial assessment (after being referred in June 2019).
- Even after being promised an assessment in January 2021, I still had to chase and finally received an initial assessment on 28 January 2021, so we could get provision cited on Edith’s EHCP ready for her to start school.
- Edith only received her first SALT sessions with the service at nursery in June 2021 – two years after being referred to the service. We have had no report or any further communication from the therapist since. This delay was over a period when speech development is critical.
The good – Support harnessed from elsewhere:
- Our local authority (LA) invited parents to attend a feedback session on the commissioned SALT service. This was helpful and supportive, as provided an open and safe forum to ask questions, raise concerns, and to have concerns addressed was reassuring.
- I’d become frustrated and anxious from the continuous obstacles in getting speech therapy for Edith, who was also getting frustrated by the limitations in her communication ability. So in July 2020, I started paying for private online group therapy sessions with other members of our local Down’s Syndrome support group. Encouraged by seeing some progress at last, we increased this to include 1:1s as well. Private speech therapy is expensive, and it isn’t easy for us to meet these costs, even though both parents work – but we are currently able to find the finances for this and it brings me peace of mind that we have an alternative. Many others will not have this option as the cost will simply be prohibitive.
The downright ugly – Continuously being given the message your child is not a priority (always on the ‘wrong list’):
- We were not a priority for an assessment for nearly a year before the pandemic hit. How does a service even ascertain priorities without having assessed a child who has been referred?
- Speech therapy was not a priority at all during the initial stages of the Covid-19 pandemic and speech therapists were redeployed. This is understandable; however, the service was very delayed in getting their therapists back and resuming SALT provision again, long after other services had been running again.
- After the service resumed around November 2020, we were told we were not a priority for an assessment now as Edith didn’t have an EHCP – they were now prioritising children with a SALT provision on an EHCP.
- When we went through the EHCP process, the EHCP team did not have the authority to use our private SALT report to outline provision in Edith’s EHCP, so no provision could be stated on the plan, despite the need being evidenced as a significant need. We were at the mercy of the LA-commissioned SALT service until they deemed us a priority for an assessment.
- This felt like a catch-22 situation, as SALT service were only prioritising children with an EHCP, but I couldn’t get SALT provision onto our EHCP without an assessment from the SALT service.
What needs to change?
Support to improve the way services are managed – e.g better communication, better assessment prioritisation, efficient and timely reviews. Stop children being discharged and having to be re-referred again later from scratch.
Covid-19 catch-up funding for therapy services – we need government recognition that earlier intervention by way of therapy services is required. It can save on bigger costs/needs in future. Speech development is something that can regress in an individual if not kept on top of, particularly in the presence of other anxieties (eg during a pandemic, isolation, school etc).
Flexible and tailored services – one size does not fit all. A fixed approach to services can result in insurmountable waiting lists, inefficiencies, pigeonholing children, wasted resources, and under-supporting and harming a child’s development. When children with learning disabilities are under-supported it increases the gap between them and other children.
It’s time to hit the fast-forward button on therapies that were so badly needed yet left to flounder in lockdown, along with our children and our mental health. I am supporting the #LeftInLockdown campaign, as I believe we can all work together to give children with disabilities a fighting chance to catch up and achieve their true potential.
Vanessa and Edith