Out of the Box is a campaign for the co-ordinated care of disabled children who do not have a diagnosis for their condition.
Since 2011 I have been navigating my way around the services provided by my local authorities, the Community NHS and the Department for Work and Pensions on behalf of my disabled child.
Although I am extremely grateful for the support available accessing it have proved a significant challenge.
The diagram below demonstrates the touch points with various services, you can see it is a large list and this does not include the medical involvement as the NHS provision is managed differently.
Each assessment is time consuming, intensive and requires us to continually ‘prove’ that our child is disabled enough to meet the required criteria.
For the service providers, it means duplication, repetition and specialist resources focused on assessment rather than provision of the service.
We have in the end been successful in obtaining support. However you will find links to three cases studies depicting our own experiences.
As my daughter remains undiagnosed this makes very assessment more complicated. On most forms there is a small box marked ‘please describe medical condition’. In the UK there are 6000 children born every year without a diagnosis, none of whom fit in a box.
A specialist assessment team would provide a focal point for the child and their family, assessing their needs across a range of different services – from School Places to Blue Badges, Respite Care to Housing Adaptations.
This would allow the delivery teams to focus on provision of services.
There would be multiple benefits to this approach.
- For the family it would remove the continual assessments and allow for fair and consistent decisions
- From a funding perspective, it would eliminate waste in the current system allowing funds to be spent on delivering services, rather than cumbersome and costly assessment and appeal processes
- In the short term, simple changes could reduce wastage. For example, a child allocated a place at a Special Needs School will have a complex and or severe disability so it would appear logical that they will require a Blue Badge, transport to school and access to respite services.
I appreciate such change is significant and I am presenting a simplistic view of a cross authority / cross team approach.
However, I passionately believe that in combining resources – in this case for assessment purposes – we could achieve better outcomes.
I am sure this co-ordinated approach would benefit families and service providers.
If you are interested in supporting this campaign for change, sharing your story or providing advice or guidance please get in touch.
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