This policy statement has been developed with advice and guidance from people with Parkinson's, the people who love and care for them, health and social care professionals and other experts.
What do we mean by working age income replacement benefits?
They deem me unfit for work now, but say I could return within the next 6 months. Do they know of some miracle cure for Parkinson's?
A person with Parkinson's
There are a number of different benefits available to support people of working age with Parkinson's.
ESA is a benefit paid if your ability to work is limited by ill health or disability. Its assessment phase normally involves undergoing a test of readiness for work.
In the long term there is an aim to move all existing claimants of Universal Credit over to ESA.
What we believe
We believe that people with Parkinson's of working age, who are unable to work because of their condition, should receive an income replacement benefit paid at a level that enables independence and social participation.
The system needs to be fair to those unable to work, help those who need additional support to return to work and be accessible for people with disabilities. Decisions should be based on a proper understanding of Parkinson's.
Why we believe this
Many younger people with Parkinson's who cannot sustain work because of their condition rely on benefits for their income or part of their income. Working age people with Parkinson's report being worse off financially than their older counterparts.
People with Parkinson's often find there is poor understanding of the condition amongst welfare advisors and assessors.
This risks people being rejected for the support and benefits they need if they are having a good day while being assessed.
What's the evidence?
The Cost of Parkinson’s report (2017) found that people with Parkinson’s and their families, are on average £16,582 worse off each year. This is due to higher health and social care costs, loss of income due to retiring early or reducing their hours, and loss of state benefits.
The report also found that almost two thirds of working age people with Parkinson’s (who responded to their survey) were in receipt of benefits.
In 2015, a Disability Benefits Consortium survey of people claiming ESA found that almost a third were struggling to eat and over half said they couldn’t afford to stay healthy.
Between July-September 2018, successful appeal rates stood at 68%. This indicates the continued failure of assessors and the assessment criteria themselves, to correctly identify the impact of a complex, degenerative condition like Parkinson’s.