In June 2015, Marta was part of a high profile demonstration organised by Disabled People Against Cuts (DPAC) at the House of Commons that tried to storm Prime Minister’s Question Time. For Marta, this was not normal practice, she was not a regular protestor, but her belief that her Independent Living Fund (ILF) financial support would be cut to a point where her life would become meaningless, drove her to take this action. She felt that she had nowhere to turn.
“We hoped to raise awareness of the changes to ILF. I’ve been working on this for years and I was hoping that someone would see sense., I was very tearful. I wanted to go away at Xmas, and I didn’t know whether I would be able to do it – I was worried about the future. And that I would have to employ an agency, which means that you don’t have any control over who comes, when they turn up and the quality of care. DPAC was telling us we would lose most of our money”
Marta was an active child from Bath in the 1960s and experienced the normal rough and tumble of playing with her friends. Her mother felt that she was falling over more often than the other children but originally excused it as Marta being a “clumsy” child. In time, her Mother felt that it was something more serious and when Marta was 10, managed to get some tests done at Bristol Children’s hospital where she was finally diagnosed with Freidrich’s Ataxia. This is a genetic disease that causes nervous system damage which leads to unsteady movements and impaired sensory functions.
When she was 16, Marta moved away from home to a residential college in Coventry. During those 4 years she enjoyed her independence, and decided to stay there and study Computer Science at the University. She was already receiving disability benefits and used some of that to hire a fellow student to help with household chores. She did a year’s placement at British Rail in Derby during the course, and when she graduated, applied to them for a full time job. She was successful and returned to Derby. In 1999, after spending 7 years in a job she enjoyed she had to leave; her co-ordination was getting worse and it was becoming harder to work and she was now using an electric wheelchair, and needing support to transfer as she could no longer support her own weight.
At this stage her personal support was very limited. She became aware of other financial options that would give her different opportunities….and more independence. This was through Direct Payments ( from the Council) and the ILF ( central Government fund that would help those with higher needs to remain independent). This had a massive impact on her life. She was now able to employ staff who could provide her the consistency of care and support that, progressively, she needed.
Although Marta couldn’t work, the Personal Assistant support allowed her to continue to contribute to the community through volunteering and representing disabled people on various boards. Over the last 15 years her health has deteriorated and the funding she had originally, although generous, does not cover her full care requirements…but she still lives in her own flat, and remains an independent person.
A few years ago the Government stopped any new entrants to the ILF with a view to closing it from 30 June 2015, and transferring the management of the funds to the Local Authority. The rationale was that it could it be better managed ‘closer’ to the individual. For everyone involved they knew that it would not be ring-fenced, would be absorbed into the heavily over-burdened Adult Social Care budget, and could result in cuts to the care packages. Historically many disabled people had experienced reductions to their funding, and with austerity in full flow further cuts were inevitable. Marta was infuriated with the Government’s action, and was desperate about her prospects ; this led her, at great personal struggle, to travel to London, and protest.
I was of the view that the Care Act 2015, which had the concept of the individuals “well-being” at the core of the Local Authorities legal obligation, was the way forward; trying to re-instate the ILF would be wasted energy. It seemed clear that for most people “well-being” was synonymous with “independent living” and that would be the underlying basis for any application for support. I met Marta shortly after her visit to London and proceeded on this basis with the discussions with Derby City Council. Despite my optimism it would be fair to say that, initially, Marta was mildly encouraged but cautiously sceptical.
Financial support for disabled people does not have to be just a Social Care responsibility. The trend is for a closer relationship between Social and Health care as the boundary between the two can be very blurred and the subtlety of the distinction is not of value to the individual. Marta’s condition has many clinical consequences which require her carers to be sensitive to the impact of many routine actions even down to the way her clothes are ironed ; they also need to administer drugs several times a day. It is because of this that we decided to approach the NHS through the Southern Derbyshire Clinical Commissioning Group (CCG). Depending on the extent of health related needs will determine whether support can be provided under Continuing Health Care (CHC), or a modest direct payment / Personal Health budget arrangement.
After a number of meetings looking at Marta’s social care needs, and a visit from the District Nurse to assess the clinical aspects, a meeting then took place with the CHC Nurse and the Derby City Council social worker. This was a structured review which involved asking a series of detailed questions, and ticking boxes which led to a calculation of the split of funding between DCC and the NHS. In Marta’s case it was concluded in the meeting that, due to the clinical nature of her condition, that she would be funded 100% by the NHS under a CHC programme. The review also recognised that her care support was not sufficient and that her overall financial support would increase to recognise this.
After nearly a year since we first started discussing this subject she finally got the answer that she never expected. There was going to be no cuts…in fact she would be getting more support. The added bonus was that she would not have to contribute into the DCC scheme.
“I was absolutely delighted to be going onto NHS funding. I know I will be looked after . They know that if they try to save money on my care support at home I’m likely to end up in hospital and that will cost more on nurses, doctors and a bed. I’ve spent a year being afraid of the future because of what I’d been told – without DPAC, I wouldn’t have worried so much”
The ILF was a generous scheme and was designed to support those with the highest needs for care support. There were 80 people in Derby who were on ILF. As of Dec 2015, 50% had their package re-assessed. 80% of those who had been assessed either maintained their funding, had an increase, or a maximum reduction of 10%.
Marta did not have special treatment by the Council or the NHS, she was just 1 of the 80 people being re-assessed. The year it took to finalise the position was not dictated by the process itself, but by the availability of the people to visit and complete assessments, and for people to meet to make decisions. Nonetheless it was a 1 year rollercoaster for Marta and despite being well-adjusted and capable, intellectually, she was very vulnerable as a result of a fear of the future. Much of that fear and emotion was unnecessary.
The delays in the process generated a deepening anxiety about the success of the outcome which exacerbated her vulnerability. Being dispassionate, advocating in meetings, chasing up people, and “grounding” conversations was an important role that I was able to carry out. In my limited experience, and from reading other reports, it is a sad fact that, in order for disabled people to have a good chance of success with securing their right to good care, they need the help of a trusted 3rd party advocate.
This is a tragic indictment of the system, and shows that there is something fundamentally wrong in the way that care is provided in this environment.