Advocate Promotes The Case For Fair Delivery Of Respite Care

Enniskillen solicitor and businesswoman, Caroline Kelly who acts as an independent advocate for people with learning disabilities and their carers was the guest speaker at a carers’ AGM in Lisnaskea where she spoke about the fairer allocation of respite care, or ‘short breaks’.

For a number of years, she has been researching the complexities of the respite care provision for parents/carers like herself with a son/daughter or sibling with learning disability (LD).

She outlined at the meeting of Friendship and Caring Trust (FACT), the shortcomings of a service where carers were told what their entitlement was instead of what it should be, and where even the Department (of Health) had little idea of the accuracy of numbers of LD adults and carers in the community..

Her presentation scored a direct hit with those attending the AGM of the Lisnaskea-based, and nowhere more so when she revealed there were some 11,000 people (19.2 per cent of the population) in Fermanagh with limited long term illnesses, and a further 10 per cent (5,700) who were registered as carers.

“That’s 30 per cent of the local population who are either disabled in some way or caring for the disabled”, she stated. “But, the question is: how do we get an fair allocation of resources? How do we persuade our Assembly or whoever to give us enough money to run it?”

But, she had other shocks in store. She shared with the audience a document, on ‘eligibility criteria’ prepared and applied by Sperrin Lakeland Trust in 2005. She explained that due to budget restrictions in the (Sperrin) Trust, social workers were instructed to apply eligibility criteria for the families of disabled persons for respite in order to draw up a priority list.

Based on questions such as whether families could rely on unpaid care from extended family or whether the disabled person had challenging behaviour, they were allocated a score (plus or minus). Those scoring between 70-100 are entitled up to a maximum of 56 days respite care, from 50-70 points, up to 42 days, and less than 50 points, 21 days.

Mrs Kelly was scathing that carers should be subject to such criteria: “And, remember: these are criteria we have had no input into. It shows how vulnerable we are where we have no influence on how things are done when it comes to management of our services”.

At the start of her presentation, she spoke about her own family’s experience of trying to care for a learning disabled son, and about the time and energy needed to put in place help from the Trust.

“I know exactly what any of you is going through dealing with a learning disabled child, trying to get some help”, she told her audience. “Twelve years ago, we returned to Fermanagh and spent a long time trying to understand the complexities of the system.

“We had to ask so many questions. No one could give a clear answer on what we were entitled to, whether we even had a right to ask for help. Over a period of time, we worked hard and, with a lot of effort and resources and some good people within the Trust, we got answers and got a package together for our son and, today, he is living happily”, she said.

Mrs Kelly then proceeded to share those experiences with her audience. For starters, she identified who was who in managing services for the learning disabled in Fermanagh. In order of seniority, it included the principal social worker, four Social Workers (‘the people at the coalface’), three community nurses, daycare staff, a behavioural team and a career support worker.

‘Respite care’ or ‘short breaks’ is one of the most important services the Trust can offer by providing funds to enable disabled people to spend time away from their families, usually in a residential home under the care of experienced professionals.

She explained that there were guidelines which the social workers should follow, starting with an assessment of the needs of the disabled person, the preparation and maintenance of a care management plan, and the recording of unmet needs. She revealed that since 2002, by law, carers were entitled to a carer’s assessment.

“Respite is important “, she stated. “Respite is something that families need for the sake of their mental health and family life. The Trust has been assessing the need for respite based on its own restrictive criteria, rather than actual need contained in care plans.

“And, I can tell you here and now that the Western Board does not know what the unmet need for respite care for learning disabled persons in this area is. Recently, I was informed that the waiting-list for respite care was in the Sperrin Trust was only 6 people. Does it add up?”

Already, there were murmurings from the floor, and people became even more restless when she referred to the document on those eligibility criteria for respite care which none of the audience had seen before.

“It appals me how they were introduced in the first place without user consultations”, she said. “The Trust made the social worker the gatekeeper, the person responsible for going to visit the family to apply the criteria. Social workers are professionals trained to be advocates for those in need. In this situation, they were asked to assess the priority for needs because of shortage of resources.”

Continuing, she suggested careers and families need to ask why there were not enough resources for respite; were ‘unmet needs’ being reported correctly, how come there was an overspend, were the learning disabled penalised unfairly, and were similar (eligibility) criteria applied in other Trusts?

She reminded her audience that careers should have a copy of a written care plan from the social worker, that it should be kept up to date, should reflect actual need and record what needs were not being met due to shortage of resources.

“Do you agree with your assessed needs? You are entitled to see them and agree your assessment. If the Trust is short of resources, OK, but you should expect them at least to record your needs, particularly your unmet need, and report them upwards”, Mrs. Kelly advised. She told her audience that FACT (Friendship and Caring Trust) was a very strong team of people who worked very hard and did their best for those who used their services.

She suggested there should be a learning disabled users’ forum established in Fermanagh and, speaking as a lawyer, she recommended that carers complain if the respite care service they were getting did not meet the quality standards set by the Department of Health and Social Services.

During ‘question and answers’, she agreed that contacting a social worker in itself was a problem area: “It is crisis management by the Trust. It is just ridiculous that family members get stressed out not knowing whether six months down the road they’re getting respite care. That is where a care plan comes in”.