Open Letter

Below is an open reply, from our chair Sophie Kayani, to a request from Peter Guest to support his initiative to raise money to support individuals to have a Dyspraxia/DCD diagnosis. 

As always we are impressed with your enthusiasm and endeavours to support people with Dyspraxia/DCD. You know that diagnosis is on our priority list and is one of the features of our focus for 2019-20. Diagnosis of Dyspraxia/DCD is complex, led mainly by the medical profession in childhood and then in later years the majority of diagnosis is carried out by psychologists or specialist teachers.

Although Movement Matters have worked hard within the medical community to gain a consistency in identification and diagnosis, there is still professional uncertainty about the psychological profile that is associated with Dyspraxia/DCD, if indeed there is one. 

Peoples’ reasons for wanting a diagnosis vary and understanding this is one of the reasons why we are carrying out a survey. For adults diagnosis may be a positive experience in itself, answering questions of “why am I like this?”. But in other cases the diagnosis needs to lead to further areas of help and support. 

The Dyspraxia Foundation has to marshal its resources carefully and look at long-term impact of our actions. Our view is that there should be free, or rather state funded, diagnostic assessments for children and adults. We want to establish a medical pathway for this to happen, opening the door for individuals to benefit from the protected characteristics in the Equality Act, as well as receiving other adjustments and support for their physical and emotional needs. 

This requires policy change steps towards it including the establishment of the APPG, evidence gathering through the diagnostic survey, FOI campaigns and further steps to demonstrate economic impact.

We are aware of work that has been carried out by the British Dyslexia Association over many years to look for free diagnostic assessments of adults. Dyslexia is identified exclusively by psychologists and specialist teachers, however years of trying for this to be carried out within the state system have failed. We think we have more chance of success in a medical route in line with autism and ADHD pathways.

To this end we do not think supporting a programme that provides individual psychological diagnostic assessments for people is the right step for the charity. We can see a number of difficulties with this which have been highlighted previously in response to your thoughts on social media.

I think you are aware that we have limited resources within the charity and always have more work with our current programmes than the capacity to deliver. Our financial focus is on breaking the cycle of limited funding to survive, moving into a cycle where funding can be allocated towards individual projects. We would not want to take any of the funds that you are collecting for administration and we truly do not have the capacity to take on any work outside of our existing priorities. One final note, on the matter of gift-aid this is not claimable, as this is only applicable to individual, not corporate, donations.

We wish you luck and we truly hope that a number of deserving people will benefit from the initiative.

Sophie Kayani, Chair