Autism and the mobility components of DLA and PIP.

Are people on the autistic spectrum eligible for the high rate mobility component of Disability Living Allowance (DLA) or the enhanced rate Personal Independence Payments Benefits (PIP)?

DLA is awarded to children up to the age of 16 and PIP to people age 16 to 65. Most applicants for the above benefits on the autistic spectrum are turned down for the mobility component at the higher rate when they first apply. In this blog, I will be delving into the incorrect assumption that people who can literally ‘put one foot in front of the other’ and walk, are not entitled to the high or enhanced mobility components, decisions which most applicants just accept without challenge. However, what do the rules say?

Disability Living Allowance (DLA)

The eligibility for the high rate mobility component is based on the following criteria: Severe

mental impairment and virtually unable to walk. Their condition must be a result of: (a) ‘a state of arrested development’ or ‘an incomplete physical development of the brain’ which results in (b) severe impairment of intelligence and social functioning.’ Arrested development’ refers to restricted development of the brain which results in emotional or functional delay, due to a physical cause. ‘An incomplete physical development of the brain’ is when the person’s brain is not fully developed. DLA case law acknowledges that because autism is a disorder of brain development, it meets the condition of ‘arrested development’ or ‘incomplete physical development of the brain.’ Severe impairment of intelligence means an IQ of 55 or less. However, this is not the only measure of impaired intelligence. If a child’s IQ is above 55, the decision maker must consider other evidence, as an IQ test is not the only way to measure intelligence. For example, some may do well in intelligence tests but may find it exceedingly difficult to use their intelligence in everyday situations. If a child has an IQ of more than 55, they could still display a severe impairment of intelligence, if it can be established that they have difficulty applying their intelligence in the ‘real’ world.

Furthermore, they must display difficulties in social situations including the ability and interest in playing with others which suggests an ‘impairment of social functioning.’ Their behaviour must be ‘so unpredictable that they require another person to be present and watching over them whenever they are awake.’ They must regularly require another person ‘to intervene and physically restrain’ them to prevent physical injury to themselves or others, or damage to property. In deciding whether this test is met, a decision maker must not only look at the need for restraint outdoors, but also indoors. The child must ‘exhibit disruptive behaviour’ which ‘is extreme,’ this includes running away, running into the road, making loud noises, scratching and biting themselves, banging their heads repeatedly, punching holes in walls, hitting other people, throwing and breaking things or refusing to move. According to the rules, the word ‘extreme’ means ‘out of the ordinary.’ If a child meets all or most of the above descriptors and qualify for the high-rate care component, they most definitely meet the criteria for the high-rate mobility as well. If any of the above does not apply to the child , they may still be awarded the higher rate mobility component under the ‘virtually unable to walk’ criterion.

Those children who do not qualify for the higher rate mobility component of DLA on the grounds of ‘severe mental impairment’ may qualify on the basis that they are ‘virtually unable to walk.’ The ‘virtually unable to walk’ test considers the child’s ability to walk outdoors and considers the ‘speed and manner’ of walking and the distance covered. It also looks at any ‘interruptions’ in their ability to make progress on foot. DLA case law accepts that autism spectrum disorders are physical disorders of brain development, and that some may have ‘interrupted’ walking due to a physical cause such as brain damage, a chromosome or genetic disorder (for example, Down syndrome). If a child is able to put one foot in front of the other but suddenly stops walking and is unable to or refuses to continue, the application must show that this behaviour is the result of a known physical cause, and the interruptions in walking are frequent enough, so much so that walking is limited.

For example, some children with autism often have ‘refusal episodes,’ where they refuse to either leave the house or go any further while they are out. If it can be proved that these episodes are frequent, sustained and they cannot be easily persuaded to co-operate, then the child may be considered ‘virtually unable to walk’ and an award of the higher rate mobility component made. Although there is no set distance in law, a child may be considered as being ‘virtually unable to walk’ if they cannot walk more than 50 metres without issues occurring.

Personal Independent Payments (PIP)

Entitlement at the enhanced rate of PIP is based on the impact a physical or mental condition has on the person’s ability to carry out mobility activities. Based on a points system, the eligibility criteria are (a) planning and following journeys and (b) moving around. Most people with autism meet the ‘planning and following journeys’ criterion if it can be proved that their ability to plan and execute a journey is affected by a mental condition. Compared to obvious physical disabilities, this can be difficult to prove for some people with autism. This focusses on the ability to safely and reliably plan and follow a familiar or unfamiliar route. A person cannot be considered able to journey to an unfamiliar destination, if they are unable to do so by public transport because of a cognitive, mental, and sensory impairment. Consideration should be given to the person’s ability to cope with unexpected disruptions, diversions, and cancellations for example. I recall an occasion many years ago, whilst attending a conference in Manchester where the guest speaker, a 'fiercely independent' young lady on the autistic spectrum never arrived. We later learnt that her train journey was stopped halfway due to an incident and she just sat for hours at the station because she did not know what to do even when help was offered. Even if the person can follow most of the route by driving, consideration should be given to the person’s ability to execute the journey from start to finish. If this applies, the applicant scores 12 points which is required for the enhanced rate of PIP.

In summary, most people on the autistic spectrum are eligible for either benefit if all or most of the above descriptors apply , it is up to the applicant to show this by aligning their individual experiences with them. I am mindful of the fact that it is difficult to describe loved ones with such strongly worded descriptors, however, using them results in successful applications.

Shirley Barber is an independent consultant with experience of disability rights and entitlement to support services. For more information go to www.appletreeconsultancy.org .

Reference:-

1. Disability Rights UK: www.disabilityrightsuk.org/how-we-can-help

2. UK Government website: www.gov.uk/rights-disabled-person

3. Turn 2 Us: www.turn2us.org.uk

4. Contact a Family: www.contact.org.uk