Chamber and committees

Parkinson's UK Scotland submission of 3 September 2021

PE1854/C : Review the Adult Disability Payment eligibility criteria for people with mobility needs

Parkinson’s UK Scotland supports Petition PE01854, which calls for the 20m rule to be removed from the new proposed Adult Disability Payment (ADP) in Scotland. We also support MS Society Scotland, Citizens Advice Scotland and the Health and Social Care Alliance’s call for the Committee to take evidence on this matter.

Why the 20m rule matters to people with Parkinson’s

There are around 12,400 people with Parkinson’s in Scotland, and about 30 people are diagnosed every week.

Parkinson’s is a progressive, fluctuating neurological disorder, which affects every area of daily living including talking, walking, swallowing and writing. There are more than 40 different recognised Parkinson’s symptoms, and everyone is affected differently. There is no cure, and no current treatment can slow or reverse its progression.

Parkinson’s has a very significant impact on mobility. Slowness of movement, changes to gait and balance, involuntary freezing, pain, cramps and uncontrolled movements are all extremely common. About 60% of people with Parkinson’s experience falls, and 40% fall regularly.

Yet since the PIP rollout began in 2013, people of working age with Parkinson’s have been refused PIP, or have not been awarded the benefit at the correct rate. Some have had their level of award reduced on reassessment - despite the fact that Parkinson’s gets worse over time.

Sheffield Hallam University research shows that Parkinson’s costs a typical affected household in Scotland more than £13,000 every year. The financial impact of Parkinson’s means that accessing social security benefits at the correct rate is essential. A high rate PIP mobility award is worth £62.55 a week, while the lower rate is less than £24. That does not go far when you need to take taxis, a lifeline for many disabled people.

But finances are not the only important issue. Securing the highest rate of mobility payment is the only way to access the Motability Scheme, which enables disabled people to secure an affordable car or accessible vehicle. It also enables access to local transport schemes like MyBus in the West of Scotland. These enable disabled people to stay connected and live independently.

The need for reform

20m is about two thirds of the width of the Scottish Parliament Debating Chamber.

For many people, getting from their living room to the street outside is further than 20m. It wouldn’t get you from your car to many hospital entrances - let alone to an outpatient waiting room. It’s an arbitrary distance, detached from people’s experience of how mobility impairments affect real world activities.

DWP does not use the 20m rule for any other benefits, such as when assessing Employment Support Allowance or Work Capability in Universal Credit. PIP does not passport to other benefits awarded by DWP, and PIP income is exempt from means tests for income-related benefits. Changing the assessment criteria for ADP should have no impact on any DWP benefits a household receives.

The 20m rule encourages binary thinking about mobility. It means that some people don’t even apply because they think that they are “not disabled enough” - despite Parkinson’s having a life-changing impact on their mobility.

It means that assessors do not consider fluctuations in a person’s condition, their manner of walking or the consequences of walking 20m. Parkinson’s can vary from day to day - and even from hour to hour. People with Parkinson’s can sometimes walk relatively well when their medication is working but be unable to move at all at times when their medication isn’t working.

Our expert Parkinson’s advisers often win PIP appeals because assessors have not applied the accompanying regulations and case law which say that people should be assessed as able to walk 20m safely, to an acceptable standard, repeatedly, and in a reasonable time.

Most people apply for social security benefits unsupported and don’t know how the assessment should be made. People who come to us for help with applying - or to appeal an unfair decision - are the tip of the iceberg. Applying for financial support is incredibly stressful, living with Parkinson’s is challenging, and we know that many people simply cannot face making an appeal.

Parkinson’s UK Scotland believes that the introduction of ADP provides an opportunity to create a fairer system of support for disabled people in Scotland. We welcome the measures to change the culture of assessment for ADP, but believe that changes to the criteria against which people are measured are also vital.

In our view, the 20m rule is not fit for purpose. Parkinson’s UK Scotland believes that the Scottish Parliament should use its legislative powers to create something that better meets the needs of disabled people.