Decision date: 28/11/19
Ms C was diagnosed with severe Chronic Fatigue Syndrome (CFS/ME), Obsessive Compulsive Disorder (OCD), Generalised Anxiety Disorder (GAD) and Irritable Bowel Syndrome (IBS). Her GP wrote to the Council in November 2018 listing these and adding that Ms C was bedbound for 22 hours a day.
Ms C made a large number of requests for Disability Related Expenditure (DRE) and complained about the way the Council dealt with them. The Ombudsman went through the requests one by one:
The cost of gardening, landscaping and decking
The Council claimed to have provided a free hedge-cutting service at Ms C’s property and also cut the grass for free until fencing was installed that prevented their access to the garden. It refused to treat the costs of large jobs such as the pruning of big trees as DRE on the basis that jobs such as these would likely need a professional anyway.
Ms C appealed the decision and the Council granted £750 per year as DRE for a weekly gardening service and an annual pruning allowance. She accepted that offer.
The Council’ Housing Authority undertook adaptations to the front and back of Ms C’s house under a Disabled Facilities Grant (DFG).
Ms C told the Ombudsman that she would also need the garden landscaped and have decking installed in order for her to access the garden. The Council did not provide either as part of the DFG.
The cost of food due to dietary needs
Ms C claimed that the cost of her weekly shop was large due to her IBS and additional intolerances (which had been confirmed by the GP). She provided a list of 14 items that would cost £77 per week to purchase and requested the Council treat two-thirds of this as DRE. The Council rejected this as Ms C was shopping at shop X, which the Council said was more expensive than other options. Ms C said shop X was the only shop that stocks all of the specialist food that she requires.
The Council said that it would need to clarify some information with the GP and would need a qualified dietician to confirm Ms C’s intolerances and suggested ingredients. The Council said it would assess to what extent Ms C’s additional food expenses can be treated as DRE once it had obtained this information.
Ms C refused permission for the Council to contact her GP directly. Instead, she offered for the Council to submit a list of questions via her to her GP. However, the Council had reservations with regards to this and told her it would need to discuss issues directly with her GP and input from a qualified dietician although the GP had said directly to the council that a dietician would not have been able to add anything of any further value.
She had asked to be allowed to spend some of the budget on food rather than having it cooked. The council agreed that food could be bought through a personal budget, but that if that were to be offered, in addition to having a living allowance to buy food, in the MIG, that would be allowing for actual food costs twice.
Ms C told the Council that she required ME management sessions at a specific Fatigue Clinc Y at £165 a session and that she had unsuccessfully tried to get the NHS to fund the sessions. Free sessions are available at the local ME clinic but Ms C had attended these before and believed that they had only worsened her condition. Additionally, massage sessions (£40 per week) were classed as necessary on the document written to the Council by her GP. Her GP has confirmed in the letter of November 2018 that these were necessary, that it was not covered on the NHS and that she would be unlikely to gain funding if she applied.
The Council said that it was not its responsibility to manage diagnosed health conditions. Ms C has not yet provided any evidence that the NHS has formally considered her funding request.
Ms C bought a heart rate tracker to help pace herself during activities.
The Council said it would only consider treating the £0.41 per week charge for the tracker as DRE if it received information from the GP about why the tracker was necessary and also why the NHS had not provided one.
Ms C was signed up to Audible, an audio book service provided by Amazon for £8 a month. She said that it was easier to listen to books than it was to read them due to her fatigue and used this to assert that the cost should be treated as DRE.
The Council said that the cost of buying audible books was similar to the cost of buying physical books and was therefore not applicable.
Ms C bought a specific lightweight hairdryer with a quick drying time as her carers would sometimes leave before her hair dried and she needed to be able to dry her own hair as she could become ill from sitting with it wet. She told the Ombudsman that the Council could reduce her care package as the hair dryer would save time.
The Council saw the hairdryer as a personal choice, regardless of its efficiency, and said that there were much cheaper lightweight ones. It would need medical evidence to determine that Ms C would be at risk if it took longer to dry her hair.
Ms C bought a Robotic hoover with a HEPA filter for £500 and had confirmation from her GP that it helped to manage her allergies. She also said that this could have a positive effect on her independence and may allow for a reduction in her care package as now her Personal Assistant (PA) only needed to hoover once a week.
The Council said it would be willing to treat the difference in costs between a conventional vacuum cleaner and one beneficial for Ms C’s health as DRE, spread out over 10 years. However, it decided not to make an allowance for this as Ms C could have bought a vacuum cleaner that would not have been more expensive than an average-priced quality hoover.
Ms C claimed that without her numerous disabilities, she would not have bought a dishwasher. She understood that her PA would be able to support her with manually washing dishes but that this dishwasher would increase her independence and once again, the Council could reduce the hours on the care package.
The Council responded that Ms C would surely not be strong enough to unload a dishwasher if she truly was bedbound 22 hours a day. It also questioned whether the increase in independence would be significant.
Ms C said that an Occupational Therapist (OT) had assessed her when she had moved into her current home and that she had been told that she would need a higher bed than the one she had just bought on moving in.
The Council said that it could have made her bed higher for free with simple raisers but that Ms C had declined this option at the assessment. The OT did not tell Ms C to buy a new bed.
Ms C said that she required a talking therapy service to address her mental health issues and to help ease ME related isolation. She asked for £35 every 2 weeks to be treated as DRE as she needs home-based sessions. In his letter to the Council, the GP had also recommended emotional support.
The Council said Ms C had not started this therapy at the time of the assessment and that there was therefore no expense to consider.
As the GP deemed this therapy essential, and provision is available free on the NHS, there is no DRE. A local hospital confirmed that the NHS simply needed a referral from Ms C’s GP, and they would assess her for the most appropriate form of therapy to meet her needs.
There was an alternative provided by the NHS for those in need, and Ms C had 4 hours per week from her care plan allocated to social interaction.
Ms C asked for gym equipment to help with her rehabilitation.
The Council said a physiotherapist did not believe Ms C had the strength to use the equipment.
Ms C claimed her GP had confirmed that she suffered from temperature dysregulation. She requested the Council fund her entire gas and electric bills as DRE as she is home all day. The Council said it would consider these costs if they were above average, but they were not.
Ms C felt vulnerable in her property without a security fence and thought it would help to manage her General Anxiety Disorder and OCD. She unsuccessfully requested the Council provide the fencing a number of times before spending £1,600 of her own money.
The Council said that there had been no records of anti-social behaviour on the street where Ms C was living and that the cost of feeling more secure was applicable to the general public (and therefore not related to her disability).
High speed Broadband/Special TV subscriptions/Gaming
Ms C had a smartphone, a games console with games, special TV subscriptions including Amazon prime and paid for high speed internet in her home. Loneliness and the need to socialise was the basis for requesting that these be paid for by DRE, especially regarding online gaming as a form of interaction.
The Council responded that nowadays there was a multitude of free TV options and considering Ms C subscribed to Amazon Prime, it would not treat a pay-to-view services as DRE. It said that online gaming was actually more harmful than beneficial for socialising and suggested it could start up a conversation with her GP about interacting through ‘normal channels’. She would be permitted to spend some of her actual budget on piano lessons.
Noise Cancelling Headphones
Noise sensitivity is a symptom commonly associated with people suffering from ME. Ms C was wearing earplugs that cost £1 a week and was saving up to buy a specific set noise cancelling headphones (£329).
The Council again said it would need to communicate with Ms C’s GP in order to confirm the importance of them.
This was included in the GP’s letter as essential. The Council asked why it was essential and if so why was it not prescribed by the NHS.
Extra Cost of Clothes
Ms C claimed that her clothes suffered more wear and tear than normal due to her disability.
The Council said that as she stays indoors and is mostly bedbound, it could not see a reason for her total clothes bill being higher than that of the general population.
The Ombudsman found it difficult to find fault in the way that the Council had responded to the majority of Ms C’s claims as she had not been able to produce the evidence required by the DRE guidelines and had refused the Council the right to contact her GP.
However, the Council should have visited Ms C’s property regarding the cost of decking and landscaping the garden to assess her plans and in order at least to have come to a decision about the £4,270 and whether it could be DRE. It had also overestimated the price of a normal hoover by £50-£75 when it had concluded that she could have got a filter hoover for no more than that cost of a normal hoover. That meant that in fact she had been underassessed for DRE.
Ms C also complained that the Council had undertaken a financial assessment of her means in June 2018 and that she subsequently had to pay unexpected, backdated contributions to her care package.
Her original financial assessment was completed in April 2017 and at this stage Ms C did not have to pay any contribution to the cost of her care. She signed an agreement to inform the Council of any changes to her financial situation and acknowledged that any contributions to the cost of her care would be backdated to the date of the changes.
Ms C’s benefits increased in June 2017 but she failed to inform the Council until November. It arranged a financial assessment for January 2018 but Ms C requested it be moved to April so that she could co-ordinate with her advocate. The Council said at this point that if it found her responsible for contributions, it would be backdating the cost of them to June 2017.
The assessment was postponed twice more by Ms C due to problems with the agency that allocated her an advocate. The financial assessment did not take place until June 2018, where she said that she did not have appropriate support at the assessment, which was a failure by the Council and the advocacy service. Her PA/carer was unable to provide appropriate support as she did not know anything about DRE.
where it was decided Ms C should pay a contribution of £86.93 per week (£4,321.66 in total due to the backdating). The LGO had not seen evidence that Ms C asked the Council, before the financial assessment took place in June 2018, to arrange a different advocate who would be any MORE knowledgeable about financial assessments and DREs.
At this stage, the Council advised Ms C that she may be eligible for the Severe Disability Premium. She applied and was awarded additional benefits that were backdated to April 2017, which was when she was assessed as qualifying for Personal Independence Payments (PIP). This led to the Council adding the resultant increase in her contribution to the already owed monies.
The Council therefore decided to also backdate the resulting increase in her contribution to June 2017. It explained to Ms C on 17 August 2018 that:
“the level of financial assistance you qualify for will change with effect from 24/06/2017 because this is the date you started to receive chargeable adult social care services. The law says that financial assessments must reflect an individual’s income from benefits as it should have been claimed for a past period, even if it was not claimed. The DWP have backdated your severe disability premium to the date you started to claim PIP and I am pleased that we have been able to support you to claim this extra money”.
The Council chose to recover the money by ceasing Ms C’s Direct Payments between August 2018 and March 2019. Ms C complained to the Ombudsman that the Council did so without informing her which caused her distress. She also complained that she did not receive proper support during the financial assessment.
This lack of information and willingness to engage was particularly distressing for her, due to her very high levels of anxiety and panic. However, Ms C said this did not result in a reduction in her care support, because she had a large amount of unused direct payments in her account and she used the balance of that to pay for her support.
Ms C said that she had to decrease her hours of support per week in order to fund the assessed contribution. The Council replied to Ms C’s concerns, saying that it had discussed the cessation of Direct Payments with her in August, where she allegedly said that she had over £8,000 in the account. It said that Ms C had reduced her support hours due to not wishing to engage with her PAs. She did not tell the Council she reduced her hours because she could not afford it.
The Ombudsman found no fault in the way the Council came to the decision to backdate the assessed contribution of cost to care.
The Ombudsman found little fault with the Council and only recommended that within four weeks it should:
- Visit Ms C’s property to assess whether the costs involved could be treated as DRE
- Add the amount of £0.15 per week to Ms C’s DRE in recognition of its overestimate of the cost of a hoover.
Points for the public, service users, families, charging assessors, advocates, counls etc.
It is interesting that the LGO says nothing about the person centredness required within the wellbeing promotion duty – ie the starting point that the person in question should be regarded as expert in their own needs.
The LGO’s focus on the need for the NHS to step up to managing health conditions is inappropriate in our view; in relation to the legal position that if the NHS won’t provide it, the LA should not refuse then to do so; there is not meant to be a gap between the services. However, either one might say no and not be able to be challenged, so it is not unreasonable to expect the person to show that they’ve asked the NHS – when a council is saying that they don’t need to meet needs, themselves, because the NHS should do.
However, when the issue is DRE, we know of no legal basis for saying that disability related expenditure cannot include expenditure on health conditions that are disabling, especially when the NHS’s duties to provide a comprehensive health service are virtually unchallengeable, as being merely target duties, not individually owed to members of the public.
The LGO took the view that if someone has asked the NHS and the NHS has said no, then one could complain. The client said she didn’t have the energy and we can relate to that sense of exhaustion and futility. But the LGO is not wrong; we feel that the LGO could have made a reasonable adjustment here, especially as the LGO does have a route agreed with the PHSO to exercising a joint jurisdiction in matters that involve health and social care.
On the DFG issue, it would be extraordinary, in our experience, but not impossible, that the DFG team would include decking and landscaping. So we think that visiting would not have made any real difference to the prospects of success here.
Overall, one gets the impression here that the LGO had sympathy with the council faced with a set of requests that the council had characterised as wants and not needs. That is a decision allowed to a council, unless it fetters its discretion or otherwise ignores the guidance. The darker side of this is that this was a set of invisible conditions, which are notoriously likely to cause assessor prejudice, and a requirement that a person goes further than anyone else to provide corroboration; there may also be an aspect of ASDs that is driven by a need to control, which puts a person on a collision course with the State, because the council is the decision maker as to what should be done with public money, even if it is given in the form of a direct payment.
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The full Local Government Ombudsman report on the actions of Leeds City Council can be found here: