Out of the Box

Out of the BoxAn introductory blog

Out of the Box – Campaigning for Co-ordinated Care for #Undiagnosed Disabled Children

As the mother of a disabled child, I have spent the past 5 years navigating my way around the services provided by local authorities, the Community NHS and the DWP. Firstly, I would like to say how grateful we are for the services provided, we benefit from some good support. However, accessing this support has proved a significant challenge. I have attached a diagram with this letter to demonstrate the touch points with the various services. As you will see the list is significant and this excludes the medical involvement as the NHS provision is managed differently.

For each of the 24 touch points, there is a separate assessment process. 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.

To provide some depth, I have attached three case studies (see below) which depict some of our own experiences. Although in the end we have been successful in obtaining support, the journey has been tough. As my daughter remains undiagnosed, this adds extra complexity to the processes. On most forms there is a small box marked ‘please describe medical condition’. This is not straightforward. Disability Living Allowance awards are only made 1 year at a time as no diagnosis results in no firm prognosis. Despite little changing, we complete the 42 page form with 10+ appendices annually. In the UK there are 6000 children born each year without a diagnosis, none of whom fit in a box.

My vision for the future is of one combined specialist assessment team. They could provide the 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, this would eliminate a lot of waste in the current system and allow 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.Thank you for your time in reading through this case for change. I would welcome any feedback and advice on how I can take this forward to influence future care for disabled children.

V5 of OOB diagramCASE STUDIES:

GG Case Studies – Blue Badge

GG Case Studies – School and transport

GG Case Studies – DLA

GG Case Studies – OT

GG Case Studies – Bladder Clinic

GG Case Studies – Behaviour Management

If there was a central point of assessment, people who know GG would make consistent and fair decisions – reducing NHS/social services administration & cost, plus time & stress for us.