Personal Independence Payments (PIP) are due to replace Disability Living Allowance (DLA) from April 2013.
To read an explanation of the changes from the government click here.
To read an explanation of the changes from Disability Rights UK click here.
Eigibility for PIP may depend on explaining dystonia using relevant language. The assessors may sometimes not be helpful with this so it is therefore very important to understand the rules and guidelines the government has laid out. However, please be aware that it is essential always to tell the truth as to do otherwise is potentially a criminal offence.
We provide the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to complete your application. We are unable to offer detailed benefits advice. If you need help with your application we suggest you contact your local Citizen's Advice Bureau.
Mobility – pain, fatigue, safety
The criteria for mobility simply state that if people can walk 50m they are not eligible – without taking into account risks involved or the pain and fatigue that result.
The government have now clarified:
“Where someone is unable to complete any of the activities because of breathlessness, pain, fatigue, or any other symptom of their health condition or impairment, they would not be considered able to complete the activity at that level”
“For example, if an individual can complete a particular descriptor, and regularly does so during their daily life, but they cannot satisfy it safely, they would not be deemed able to complete it.”
“an assessment descriptor can only apply to an individual if they can complete it at the level described in a way that is safe and reliable, does not take too long and can be repeated as needed. If they cannot do so, another descriptor must be chosen and ultimately the individual may be considered to be unable to complete the activity at all.”
It therefore appears that pain, fatigue and safety will be taken into account in assessing the activity.
However it is extremely important how the question is answered. When asked about mobility, the pain and tiredness involved must be mentioned as well as any risks involved and any harm that can result. Also it should be mentioned if the walk cannot be “repeated as needed”. Failure to do so may risk being assessed as not meeting the criteria.
Mobility – distance
In the new standards, the government has also introduced two different distance criteria. To be eligible to standard rate, a person must not be able to walk further than 50m and for the enhanced rate not further than 20m. It will therefore be important to be clear exactly how far you can walk – taking into account pain, fatigue, safety and the ability to repeat as needed.
If it is possible to walk 50m but not much further for reasons of pain, fatigue or safety, it may be possible to argue the criteria is met as walking 50m cannot be “repeated as needed”. If this is the case, it will be very important to use this wording in the assessment.
Daily Living Activities
Concern was raised that people with dystonia would not get the support they need to complete activities such as eating, cooking and showering safely – if they could do these activities but not safely without supervision. The government has responded:
“Safety is always taken into account throughout the assessment by considering whether an activity can be completed ‘reliably’. We have also taken into account whether individuals need to be supervised or assisted to be able to complete the activity safely.”
It will be important to mention difficulties with safety and reliability at the assessment.
The government criteria is that fluctuating conditions must affect someone on the majority of days (i.e. more than 50% of days). We raised the concern that people with dystonia receiving botulinum toxin injections experience variability of treatment effectiveness which means the mobility can vary significantly depending on the injection cycle and success of the most recent injection. The government has not addressed this.
It will therefore be essential to give an accurate description of abilities across an average botulinum cycle – taking into account that sometimes injections can work better or worse. You need to be aware that in a typical cycle, if you don’t meet the PIP criteria 50% or more of the time, you will not be eligible for benefits.
However, the government have clarified that the condition only needs to affect someone once on any day for that day to be counted. So for instance, the fact that dystonia often disappears when sleeping will not reduce the percentage of days that count.