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 we believe
Parkinson’s has left me less able to cope and is expensive. It has made it difficult for me to continue making a living and provide for a comfortable retirement. However, PIP is there for me and no matter how difficult it is to accept a benefit, it makes a difference. Mobility aids, public transport and taxis, adapted kitchen appliances, and self-referred activities to improve my wellbeing all have to be paid for and PIP is there to help me.
John, person with Parkinson's
We believe that people with Parkinson's should be able to fairly and equitably access a centrally-provided system of non-means tested extra-cost disability benefits to help meet the costs associated with living with a long-term condition and enable them to fully participate in society, regardless of where they live.
We also believe that age-related ‘universal’ benefits, such as winter fuel allowance, free TV licences for over 75s and bus travel concessions, are important in helping older people with Parkinson’s maintain their wellbeing and independence. We do not believe that they should be means tested.
Why we believe this
Accessing transport, services and leisure opportunities can all create extra costs. For this reason, non-means tested disability benefits are extremely important.
These can be invaluable to older people, particularly as the cost of living continues to rise. Means testing these benefits would not necessarily mean they are better targeted.
There are other ways in which system reform might better target, while not undermining, the universal nature of benefits.
What's the evidence?
Living with a disability or long-term illness can increase the cost of everyday life. Our own research shows that people living with Parkinson’s are on average £328.73 per week out of pocket.
These costs can include adaptations to the home, travel costs, prescription charges mobility aids, social care charges and lost income.
Research has shown significant problems with means testing universal benefits, including stopping people who genuinely need them from claiming, for a variety of reasons such as confusion over the rules. It can also cost the state large amounts of money in administration.