Written evidence from Tina Jones (HAB0045)


I have become active in a caring and advocacy capacity on behalf of a mature and late-diagnosed male autistic person. The effects of late and mis-diagnoses in earlier years is material in this matter. Increases in late diagnosis has been responsible for powering an upward trend in those being recognised as autistic in recent years, especially in more remote regions of the UK. Older autistic individuals claim benefits because they have often suffered extreme levels of discrimination in the workplace over their lifetime and have not been able to accrue pensions and savings despite being diligent workers at the cost of social popularity which often counts for more. I have some experience in all years of autistic need and in this capacity will comment.


May I please bring to the committee's attention the impact of delay in reassessing PIP Mobility for those with MH issues including the autistic community?  The reassessment was promised by letter to claimants in late 2018 after a decision in the High Court.


Autism is wide-ranging and often contradictory in terms of apparent skills and inabilities.The requirement to appeal decisions by contracted HCPs results in delays and a generalised outcome which often proves unsatisfactory to all parties (given the cost of appeals and the now-usual success of them against HCP led DWP decisions).

In my opinion, HCP assessments of autism-severity should be replaced by GP-led NHS diagnoses with appeals as a second opinion using NHS Framework Patient Choice to a nationally recognised centre of autism assessment. If assessments were brought in-house the in-depth knowledge re the individual's decision would necessarily be that of a firm diagnosis and needs-assessment aligned to national standards (as opposed to local) as local standards are subject to local budget priorities and often reflect the 'patchy' degree of local autism expertise.


The CAB page link to the specific issue appears below. Reassessments were promised in letters sent out by DWP literally years ago and apply from 2016.


An autistic person known to me was persuaded by DWP not to appeal their PIP decision to a higher tier tribunal because of the DWP's promised reassessment which was described as imminent. The person had already waited over two years to be assessed and for an appeal to be heard re a nil award which, upon appeal, became a higher-rate award for daily-living.

The lower-tier tribunal which allowed the appeal disallowed the mobility component on the basis that the 'test was not met' under existing rules of mobility but approximately one month later (within the period for appeal to a higher-tribunal) the rules changed as a result of an appeal by other claimants.

Mobility was vital to the person's health, which has now deteriorated such that they now suffer physical seizures in public: an appeal to the higher-tier would have seen the matter settled by now by nearly two years.


There appears to be no mechanism to accelerate any decision which could then, if necessary,  be appealed. The situation militates against many autistic people having fulfilling and rewarding lives (as per the autism Act) or contributing to the economy as many highly focussed individuals could otherwise do. The person - whose condition is not unique - could conceivably have performed valuable work since 2016 and have been socially active to the benefit of their psychological health and their future wellbeing and security.


In a case of autism, mobility via a personal vehicle is not simply a matter of transport for increasing the number of possible journeys made by a person.

Personal transport can provide a safe and lockable environment to escape to when sensory or social overload takes place and allows the attempt to access that place.

A vehicle can serve as (e.g.) a waiting room when queuing for indeterminate periods when attending (e.g.) a dental appointment or (e.g.) a 'rest-room' during a lunch break from the workplace where the workplace is not equipped to accommodate, strictly, the needs of the person…

Secure personal transport is a valuable space that can be controlled by the person when out in the wider environment and can act as a bridge to or take the person within a distance of a desired destination where more normal communication might possibly be established.


CAB advice re this matter is posted as follows:




"The rules for getting the Personal Independence Payment (PIP) mobility component have changed. You are now more likely to get the mobility component if you have a mental health condition that makes it difficult for you to plan or make a journey.

Because of the change, the Department for Work and Pensions (DWP) has said it will look again at any PIP claims which were decided after 27 November 2016 but before 28 June 2018 – you can check the date on your decision letter.

e.g. you have a mental health condition that makes going outside difficult or didn’t get the mobility component of PIP or you got the standard rate of the mobility component"


Thank you for the request to comment.



November 2021