Regular readers of our blog will know that my son James moved into supported living last year when he was almost 25 years old. In November 2021 I wrote 2 posts about James’ move. One about why we made the decision for him to move and another giving practical tips on transition. Today, I am writing about the financial implications and how you need to put those things in place.
Before I do so I must stress that I am in no way an expert in finances or benefits. The information I am going to share is based entirely on my own experience and advice I was given at the time. There may be variations in different areas of the country and within different county councils. I found that the advice you are given can vary depending on who you speak to at the various benefit agencies on any given day. Some people will be more helpful than others!
As a parent and long-term carer of a child with disabilities you will no doubt have applied for various benefits previously as I had. At the point in which James moved he was in receipt of PiP (Personal Independence Payment). There are two components of this: ‘mobility’ and ‘daily living’ – sometimes referred to as the ‘care’ component. He also claimed ESA (Employment and Support Allowance). I was claiming Carers Allowance.
The financial aspects of a move into supported accommodation can be a bit complicated and time consuming, but is a process you need to go through. I was fortunate to be guided initially in what was required by the finance lady who worked within the company who were managing James’ new home. There are steps you need to go through and one is often a requirement of the other so they need to be done in a particular order.
Severe Disability Premium
For example, James was entitled to apply for SDP (severe disability premium) To be eligible for this he had to be in receipt of ESA and the daily living component of PiP, which he was. However, you can’t apply for SDP if anyone is claiming carers allowance for you. So, before you can apply for SDP you will need to notify the appropriate benefits office that you are no longer caring for this person. I rang the week before James’ move but was told I could not pre-date this and had to ring on the actual day I stopped caring. As if I didn’t have enough to do on moving day!!
Housing Benefit
I was then also going to need to apply for housing benefit for James. The criteria for claiming housing benefit in this particular instance was that James was ‘living in sheltered or supported housing which provides care, support and supervision,’ Great, I thought. I’ll get on and apply for that. But no, I was told the SDP needed to be granted first. As I say, things needed to be done in a particular order.
Council Tax
Once those things were dealt with, I could then apply for Council Tax exemption. A person is exempt from Council Tax if they have a ‘severe mental impairment.’ This is clarified further: ‘A person is severely mentally impaired if they have a severe impairment of intelligence and social functioning which is permanent.’ James met this criteria.
Whilst on the point of council tax – quite a few people I have come across are not aware that you can get a reduction in your council tax if you have a disabled person living with you. Local Councils don’t advertise the fact but there is a Disabled band reduction scheme. You do have to show that you have an extra bathroom, kitchen or other room specifically for the disabled person or that you need extra space in the property for the use of a wheelchair. It can be for an adult or a child and does not have to be the person responsible for paying the council tax. If you apply, they will come and inspect your property to ensure you meet the criteria. You may also be able to get further reductions for what councils call ‘disregards’ living within the property. Not a term I particularly like but please do check this out if you are not already part of this scheme. I’ve had friends contact their councils who have denied all knowledge that the scheme exists, so be persistent. You will find information online about it. If you have benefited from a reduction in your council tax, please ensure you update the council when your disabled person moves out as they will claim this money back from you if you haven’t informed them.
The FAB Team
If you have a disabled adult living with you who claims benefits in their own right and accesses a day service, respite provision or any other support services you will, I’m sure, have had a financial assessment from the FAB Team (Financial and Benefits Assessment Team). Every local council has a FAB Team. They will have looked at your disabled persons incomings and decided if they need to make a financial contribution to the services they receive.
The FAB team will calculate your contribution to services you receive by first giving you an allowance for your weekly expenditure. This will include things like clothes, footwear, any special dietary needs, incontinence laundry, incontinence aids and medication. They will also allow a general expenses figure to cover the things we all have to pay for e.g. food and other bills. Once totalled up they will decide how much you need to contribute and this will be deducted from your benefits.
Any change in financial circumstances requires a re-assessment so you need to notify the FAB team when your disabled child is moving out of your home.
Motability Scheme
When living at home we had a family car and James mobility component of PiP contributed toward the running costs as this was his mode of transport. We never had a Motability car. Before James moved however, we organised a Motability car for him as he would require his own transport to be driven by his staff team to get him to his day services etc. We chose a small economical car as James would be doing a reasonable amount of mileage. He was moving further away from his day services but would still be attending them after he moved so we knew his petrol costs would be between £40-50 a week. For those who don’t know, once you fill in the appropriate paperwork at the garage, the cost of the car is paid directly to them from PiP. Any remaining monies from the mobility component is paid into yours, or in our case, James’ bank account with his other benefits.
Disability Related Expenditure
When James had his re-assessment with FAB after he moved I had listed all of James outgoings, some of which were covered in the general allowance. When I mentioned the petrol I was told this was not a DRE (disability related expenditure) and, therefore, could not be included in their calculations. Disability related expenditure is exactly what it implies. These are additional costs you may incur because of your disability, for example, extra laundry or specialised clothing or footwear. You will find an extensive list of accepted DRE online. However, in our particular case they insisted that fuel was not a DRE. I explained James’ need to attend his day services and that as continuity was essential it was agreed by the Social Worker before his move that he would continue at his present day services. I then did some research on this and found a couple of examples online in other counties where travel costs, so the cost of the car plus fuel, exceeded the amount of mobility component of PiP. In these cases fuel was granted as a DRE. I sent this information to the SW who had to go to her superiors but it was eventually agreed that James’ petrol was a DRE. It made a huge difference to how much accessible income James has. The moral of the story is, do your research and don’t be afraid to challenge authority.
You’ll Get There
It took several weeks and a lot of phone calls to sort out all of James finances. I opened a new bank account for his benefits to be paid into and I buy whatever he needs from his money. I pay his utility bills directly from his account too. James’ staff have a cash card and they do his weekly shop, fill up his car and buy what James needs without having to check with me first. It seems to be working well.
I hope some of what I’ve said may help point you in the right direction. As I say, things change all the time and different councils may do things differently. Make use of the information you find online and ask the advice of people you know who may have been through a similar situation too.
Hi
Pingback: Happy Birthday, James!