3rd December is International Day of Persons with Disabilities. Read our two client stories of how we support people with disabilities to have their voices heard and their needs met.

Roger's story

Roger is a 38 year old gentleman who has cerebral palsy. He is able to verbally communicate but with significant difficulty as he has difficulty forming the words, however he is able to communicate by typing on to a computer using his nose.

POhWER Advocate first started to work with Roger when he was referred for advocacy support under the care act to review his care and support plan.

Roger lives in his own home with 24 hour support. His support package is a mixture of PA’s and care agency. Roger has had poor experiences with social services in the past. He had not been referred to advocacy services before.

POhWER Advocate supported Roger to go through the support plan and look at the areas of need he had. It became evident that in the past his health needs had been largely ignored as part of his review. He felt that when he raised issues they had been ignored by previous social workers. He had not been in agreement with his previous care and support plan, but it was not changed even when he requested it.

Advocacy sessions with Roger were quite tiring for him as he had to type what he wanted to say with his nose, so his advocate had to make a number of visits to him before all the information needed was gathered.

POhWER Advocate then supported him at his review armed with all the information that was collected over the sessions with Roger.

As a result of this work his care and support plan reflected the needs he felt he had.

Following on from this additional services were brought in to support Roger, in the past these services had not been offered. He was now working with the assistive technology team to look at eye gaze technology to help him verbally communicate. A major issue that Roger had was that he felt when he was away from his computer he was not able to communicate with people. People often spoke to his support worker rather than him and he had to rely on his support worker to explain to people what he was saying. This had a major impact on his independence and his confidence when out of the house.

Roger was also seen by occupational therapists that supported him with access to his property. Roger’s mental health was also addressed for the first time at his review and he was supported to raise his anxiety and mood issues with his GP.

POhWER Advocate found out that his direct payment had not been increased over the past few years with the rise in national minimum wage. Roger was supplementing his care package with his own money. Roger showed his advocate all the emails he had sent in the past requesting this uplift in his direct payment but it was ignored by adult social care.

This was then raised at his review and this resulted in him getting an agreement that adult social care would back pay him over £10,000, reflecting the underpayment dating back to 2016.

Even though adult social care back paid him the amount they owed him, they were still refusing to cover the cost of his care package, resulting in Roger having to contribute a large amount of money to pay for his care. POhWER Advocate then supported Roger to make a formal complaint to adult social care. This resulted in him being allocated a new social worker. The new social worker agreed Roger should not have to top up his care package. His direct payment was then increased. This meant that Roger no longer had to use his trust fund to pay for his care.

The whole process took over 9 months to resolve, but was worth it in the end for Roger.

Roger has said that he has found advocacy helpful in getting people to listen to him. He feels his voice was ignored by social workers in the past.

Tim's story

Tim is a 49 year old gentleman who has diagnoses of Moderate Learning Disability and Down’s Syndrome, with recent baseline dementia assessments made. Tim has limited verbal/Makaton communication.

Over the last 6 years Tim had experienced 6 moves. There were various reasons for moves, including placement breakdown due to shared lives carer’s death, another due to challenging behaviour and temporary placements. His most recent temporary placement had required a positive behaviour support plan and 2:1 care. He then moved to a further temporary placement at a care home. Here Tim had met up with another service user with whom he had a stable shared lives placement for 15 years in the past. He had also had respite stays over at least 20 years at the care home, which is described as a small learning disability specialist, family run care home, and staff knew him well. He had already been at the care home on a temporary basis for 9 months at the point of this decision being considered. Challenging behaviours were reported as “very few”.

Tim’s DoLS assessor recommended an IMCA referral as a further move to supported living was being actively considered for Tim, indeed his Social Worker had twice taken him to visit a potential supported living placement. Tim lacked the capacity to understand this was being considered as a permanent placement.

When the IMCA met Tim, he was clear in his expressed wish to remain at the care home at which he had been temporarily placed. "Me, here", pointing to the ground. When asked where his home was, Tim made an approximation of the place name. When asked what he liked about living at the care home Tim made no clear response, but again pointed to the floor, "me, here". When asked if this was his home he smiled broadly. Tim took obvious pleasure in showing the IMCA his room.

The IMCA spoke with his former Shared Lives carer (and reflected her experience of the challenging behaviours experienced in the IMCA report), and to the supported living carer following Tim’s visit to them. His psychiatrist had expressed a concern that a move would be detrimental to Tim’s mental health, as he was so settled.

The IMCA advocated strongly that when taken into account within a balance sheet approach (as recommended by the MCA) it was likely to be in Tim’s best interests to remain where he was. This would avoid further impact on Tim from an additional (and it could be argued unnecessary) move along with any attendant negative impact on his mental wellbeing. In respect of least restrictive practices the IMCA suggested that Tim would likely be subject in practice to a deprivation of his liberty in supported living in a very similar way to that in the current care home.

The IMCA attended a best interests meeting, and it was concluded that it was in Tim’s best interests to remain at the care home.

The Decision Maker reported the IMCA worked ‘very well’ with them on this issue.