Reform of Disability Living Allowance

The government have this week announced proposals to reform Disability Living Allowance (DLA). It is planned that DLA will be replaced by a Personal Independence Payment (PIP), divided into a mobility and daily living component. A change to the way it will be assessed from 2013-14 has also been proposed, designed to produce more consistent decisions.

The Cystic Fibrosis Trust will be responding to this consultation, and working to ensure the needs of those with Cystic Fibrosis are taken into account.

The consultation can be found on the Department of Work and Pensions' website. We would very much like to hear your views, please email our Policy Adviser with your views. We will ensure relevant information is available to the wider CF community should these proposals become reality.

Previous consultation
In 2008, the then government put forward proposals to reform the benefit system, and move from Incapacity Benefit to a new Employment and Support Allowance (ESA). The Cystic Fibrosis Trust responded to this consultation, and our response can be read here. We have received several complaints about the way benefits are being assessed in a manner demonstrating a lack of understanding about Cystic Fibrosis. We are looking into these on an ongoing basis with the support of CF social workers. We are keen to hear from people with relevant experience.

Our statement on welfare reform

Whilst we support a review of the benefits system to ensure that it is not being abused, those with complex and lifelong medical conditions such as Cystic Fibrosis who may have a genuine need for these benefits must not be inappropriately and adversely affected.

People with Cystic Fibrosis do not need special pleading - in the last CF Registry report of people with CF in the UK, 69.9% of over 16s with Cystic Fibrosis for whom there were details were in employment or education. Most people with CF want to work and to lead as normal a life as possible. For those whose illness has progressed, fairly assessed benefits are a lifeline that must not be withdrawn.

Any assessment of people with specialist conditions must be made by expert assessors. Currently, the agency that assesses people for Employment Support Allowance is not expert in Cystic Fibrosis, and has ignored written advice from Specialist CF Consultants in relation to people with Cystic Fibrosis.

Some people with CF have a near to normal lung function and work full time. Some manage to work part time or a few hours a week, and others will be dependent on oxygen and will get out of breath doing simple tasks.

No one with CF is automatically entitled to benefits and everyone with CF is different. How much CF affects ability to work can vary day-to-day, but those who do meet the criteria must continue to receive the appropriate level of support.