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Our policy work on welfare reform

What we believe

We believe that people with Parkinson's should receive financial help with the costs of their condition, including mobility costs, through the benefits system.

Benefits are an essential source of income for many people with Parkinson's.

Our members' survey showed that:

We believe that people with Parkinson's should receive financial help with the costs of their condition, including mobility costs, through the benefits system.

If people with Parkinson's are unable to work because of their condition, they should receive an income replacement benefit paid at a level that enables independence and social participation.

We are working to influence the benefits system to ensure that it takes into account the needs of people with a long term, fluctuating condition such as Parkinson's.

Read our policy statement on working age income replacement benefits such as Employment and Support Allowance (ESA).

We're currently developing a further policy statement on benefits such as Disability Living Allowance (DLA).

Current consultations, submissions and reports

We respond to government and other consultations likely to affect people with Parkinson's.

Read some of our responses below. These include the important proposals for Disability Living Allowance, and reviews of the appropriateness of the new 'fitness to work' tests for Employment and Support Allowance.

We are a member of the Disability Benefits Consortium, a coalition bringing together interested organisations which campaigns on welfare benefits as they relate to people with disabilities. We actively contribute to the joint lobbying and briefings undertaken by the consortium.

Welfare reform general

The welfare system is subject to constant reform. The Welfare Reform Act will simplify the benefits system, particularly for people of working age.

Universal credit will be introduced, as well as changes to Disability Living Allowance and Employment and Support Allowance.

We campaigned hard during the passage of the Bill before it became an Act. Read some of the Disability Benefits Consortium briefings for MPs and Lords.

The Government did make some concessions during these debates. This included abandoning a proposal to remove mobility Disability Living Allowance payments from people in residential care.

Disability Living Allowance

The green light for reform of Disability Living Allowance (DLA) was given when the Welfare Reform Bill became an Act on 8 March 2012.

DLA for people of working age will be replaced by a new benefit called Personal Independence Payment - or PIP - from 2013.

We have many concerns about the proposals to reassess people with Parkinson's of working age on DLA for PIP. Although the Government has said for most people this will now not start until October 2015.

The Government published its final proposals for PIP on 13 December 2012. Many of the proposals are in the form of regulations and are now final.

Responding to detailed design of PIP


Employment and Support Allowance

Many people, including those with Parkinson's, say the Work Capability Assessment doesn't fully recognise the impact of their condition or disability.

Applications for Employment and Support Allowance (ESA) involve the person being assessed for eligibility.

Many people, including those with Parkinson's, say the assessment - called the Work Capability Assessment - doesn't fully recognise the impact of their condition or disability and they are wrongly told they are ineligible and 'fit to work'.

We published a report Of little benefit and not working (PDF, 85KB) in October 2009, on people's early experiences of this new assessment.

Since then there have been two independent reviews of the assessment and incremental changes have been made to the process.

The latest review has finished its call for evidence. Read our response:

As part of the ongoing review, Parkinson's UK and 5 other charities were asked to provide advice on how fluctuating conditions could be better reflected in the assessment. We are working with government to test these ideas against the current assessment.

Read our ideas in the report Making it work for fluctuating conditions (PDF, 605KB), published in April 2011.

Advice, information and support

For information about benefits and other support available, we have a range of free publications about rights and benefits.

Our online discussion forum includes a forum on employment and benefits. You can share your views and experiences about employment benefits issues with other people with Parkinson's.

Find out more