Reform council tax discount rules for over 65s with dementia: sign the petition.
In early 2018, my beautiful wife Margaret was diagnosed with Alzheimer’s disease. Margaret doesn’t know who I am, doesn’t recognise her children or grandchildren, and repeatedly says she wants to go home. She cannot dress herself and is no longer able to do any jobs around the house.
I was always rubbish at remembering names, but Margaret had a fantastic memory. She could tell you the English and Latin names of every plant in the garden and when she worked in hospital medical records, before the time of the internet and computers, she could remember the coded references for every medical condition.
Now Margaret cannot complete a sentence and can no longer answer any question with choices.
Unlike with other illnesses, there’s no system or pathway for those with disabilities like Alzheimer’s to find out where to receive assistance. It’s often only by chance that information is discovered.
When I asked our GP whether there were any social activities we could attend to meet other people with dementia and Alzheimer’s, we were told to contact our local Age UK. He didn’t mention any allowances or benefits. It wasn’t until we met the volunteers at Age UK that they told us about attendance allowance. And months later, when we visited our frailty nurse, we discovered we were eligible for council tax discount too.
It was just assumed that we knew. But we didn’t.
Between the delay in discovering we were eligible for attendance allowance, and the delay in discovering we qualified for council tax discount, we had lost a considerable amount of time, and money. This is money that families desperately need to help with the adjustment to the disability.
Lack of guidance and advice about council tax discounts
Families in this situation are already struggling to adjust to the fact that their loved ones have a terminal illness with no known cure, and that they will need care 24 hours a day for the rest of their lives. The difficulties of the benefits system, and the delays and lack of information, make this so much worse.
It was by chance that I found out that we were entitled to a 25 percent discount on our council tax. But as with many other local councils, ours would only provide the tax discount from the date that Margaret first received the attendance allowance, or ‘qualifying benefit’, rather than the date that the GP certified that my wife had dementia, rendering her severely mentally impaired (SMI).
To make matters worse, the application form for attendance allowance is 31 pages long, with 52 intimate questions that need answering. Many families are not in the right mental state to take this on, and this often results in them delaying or never actually applying for attendance allowance. Which means they also become ineligible for the council tax discount.
In addition, in order to be entitled to attendance allowance, the claimant’s Alzheimer’s or illness must be so severe that they require someone to care for them for at least six months. This means that the process of accessing and waiting for council tax discounts is extended further, all adding to the financial burden for families and individuals.
Postcode lottery for those with Alzheimer’s
Currently, 66 percent of councils in the UK date the council tax discount from the date of receipt of attendance allowance, whereas only 33 percent apply the discount from the date of a GP’s diagnosis. In real terms, this means that just 25,161 out of 177,542 people receiving attendance allowance have had their council tax discount backdated to the start of diagnosis.
As someone who is struggling in this situation, I have been campaigning for councils to introduce consistent processes and clearer information. I am asking all councils to apply the ‘council tax discount for SMI disregard’ from the date the GP certifies the dementia, rather than the date of application to the Department for Work and Pensions (DWP) to receive attendance allowance.
In terms of the decision not to apply the retrospective council tax discount in our case, I’ve exhausted every appeal option. I appealed to our local council in May 2019, to a tribunal in January 2020, and to the High Court in December 2020. All appeals were rejected.
Ambiguity of laws
The present laws are so ambiguous that most councils are choosing the cheapest option, delaying the eligibility of claims and transferring the financial burden onto these families. So the main purpose of my campaign for fairer council tax exemption has been to represent the 152,000 people currently not receiving the backdated discount from the date of GP certification (which would amount to between £200 and £2,600 per household, on top of any benefits claimed).
I have launched a petition asking to have the laws changed. It needs 100,000 signatures to be heard in parliament, can you help? More information for carers is available on the website I’ve set up – Dementia Guidance.