My name’s Vanessa, and I’m backing the Disabled Children’s Partnership’s #CountDisabledChildrenIn campaign – calling on councils to invest in the support that disabled children and families deserve.
When parenting a disabled child, you find that certain needs require the sort of support that goes beyond the abilities of a parent. It can often be a struggle to access services and keep momentum going, and the impact of the pandemic has meant that services which were already strained are now trying to catch up as well.
Parents feel their children are slipping behind and not achieving their potential, and even slipping off the radar altogether since the pandemic took over. This has a significant effect on the mental health of these families due to the increased anxiety and feelings of powerlessness against an overwhelming tide.
What do these struggles look like?
My five-year old daughter, Edith, has Down’s Syndrome.
Our biggest struggle during the pandemic and beforehand was getting access to speech and language therapy.
Edith’s speech was not developing, so we were referred to our local Speech and Language Therapy (SALT) service in June 2019 when she was two years old.
The frustrations:
- We were not a priority for an assessment for nearly a year before the pandemic hit.
- 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 this was not communicated to parents, and the service was very delayed in getting their therapists back and resuming SALT provision, 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 Education and Health Care Plan (EHCP) at that time – they were now prioritising children with a SALT provision on an EHCP.
I’d become frustrated and anxious from the obstacles in getting speech therapy for Edith, who was also getting frustrated by the limitations in her communication ability. So during this time, I started paying for private online group sessions with other members of our local Down’s Syndrome 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 - but we were able to find the finances for this and it brought me peace of mind that we had an alternative. Many others won’t have this option.
When we did go through the EHCP process, the EHCP team didn’t 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 the 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 itself first.
The role of councils – do they provide hope or instil helplessness?
I believe that if we can harness the right support from councils, they can (and should) be a beacon of hope and empowerment.
This support can be mixed and is clearly inconsistent across different councils and services. Some people experience immense struggles with EHCP processes – many plans are too vague and not written with specific enough provision. There is often a backlog with reviews, and I have heard stories from other parents that services, like SALT, had been put on pause until the delayed EHCP review was completed. I was fortunate to have a good EHCP coordinator who wrote a strong EHCP and fought on my behalf to get a SALT assessment for us so the right provision could go onto the plan. This should be the model example, not the exception.
Our council involved parents in feedback sessions on the commissioned SALT service and invited us to a Q&A session with potential providers when the service was due to be recommissioned last year. This was helpful and supportive, as it provided an open and safe forum to ask questions and raise concerns, and it was very reassuring to have concerns addressed and improvements taken forward.
Other council services, like Portage and Sensory Support, can be a lifeline to parents. These services work with families to support child development and communication. Portage was something that I readily looked forward to and appreciated, as I felt it was supporting Edith’s needs and also my own in terms of having someone to talk to about concerns. Councils need reminding of just how valuable these services are to families of disabled children so that they continue to fund them.
When disabled children are under-supported it increases the gap between them and other children (as they can fall behind more quickly), and it jeopardises their future achievements and independence. From a council’s budget perspective, a lack of investment during childhood may result in more costly social care demands in adulthood.
What can we do?
In just one step, you can contact your council through the #CountDisabledChildrenIn campaign.
Tell council leaders what services you value and why they are important – with greater evidence, councils will more readily commit to continue to fund them and not scale them back or take away the support we do have.
Tell them what services need to improve, what the problems are, and the impact this has on families and disabled children so that councils will consider these areas more critically, especially around the time when commissioned services are due to have their contracts renewed.
It’s time to join together to make sure that disabled children are not side-lined at a critical time when there are so many competing priorities for councils during the recovery from the pandemic. I am supporting the #CountDisabledChildrenIn campaign as I believe we can have a strong voice together and work with councils to improve services, and give children with disabilities the best future.
Vanessa and Edith
If you have any questions about the #CountDisabledChildrenIn campaign, please email [email protected]