A new financial advice service has secured families living with the degenerative brain disorder, Huntington’s disease (HD), more than £1 million in extra income.
The Scottish Huntington’s Association’s three strong Financial Wellbeing team was set with help from the Big Lottery Fund a year ago and since then have worked with more than 300 families securing extra income of around £3300 per family on average.
The SHA is the only charity in the country supporting HD families.
‘The debilitating nature of the disease means that people need to stop working relatively early with 67% of families affected living on an income below the national average and 33% living below the poverty line,’ said SHA chief executive, John Eden.
“This service is proving vital in helping families get money that they are entitled to, but perhaps didn’t know about.”
HD is a hereditary progressive condition that causes changes to muscle control, thinking processes and long-term mental health issues. The average age of onset is between 33 and 45 and those living with the condition will require 24 hour care as it progresses into its later stages. Each child of someone diagnosed with HD is at 50% risk of developing the condition themselves. There is no cure.
It is estimated that there are around 1100 people living with the condition in the country with another 5000 potentially at risk.
The team works with individuals and families living with HD to advise them on benefits and guide them through the complex world of personal and family financial planning.
‘The SHA Financial Wellbeing Service has been invaluable for us as a family. They were instrumental in securing my wife’s Personal Independence Payment and also in getting our Council Tax rate sorted out to the correct rate, we even got a back dated rebate Living with HD is hard enough without having to worry about how to get the financial help you are entitled to,’ said Gary Brown from Perth.
But the service is about much more about advising on day to day finances.
“People living with HD know that eventually they will no longer be in control of their own affairs, our team can help them prepare for this to ensure that everything is in order when this time eventually comes,” added John.
Image shows: Jo Baldock with a client.