Sarah moved home to care for her brother John who has a disability in 2012 after their father died
She was entitled to 10 hours per week respite
This situation was not healthy for either Sarah or her brother who wanted some independence
There were many many meetings with various people. Hopes were often dashed
Finally in 2016 John moved into a residential service
Sarah believes a whole lot more needs to be done for people with disabilities and their families
Our story begins in June 2012. At the time, I was 25 years old and my brother John was 22 years old. We lost our mother three years previously and now we had just lost our father. Our father’s death was sudden and we were completely unprepared. My brother John has an intellectual disability and had been living in the family home with my father as his carer. I was living and working away from home. Overwhelmed by grief, I made the decision to move home and care for my brother.
This is when I linked up with a social worker, who advised me to look for residential accommodation with the HSE for my brother. At the time, I was completely against this. We had lost both of our parents and I loved my brother and thought that this would be abandoning him in his darkest hour. Ignoring advice from social workers and family members, I would not even entertain this idea.
After a while, I began to realise that caring for my brother for the rest of my life was not appropriate, for either me or him. My relationships suffered. I was unhappy. I received little or no help from family members and was only entitled to 10 hours ‘Share a Break’ (respite) per week. I also felt that this living and caring situation was not beneficial to my brother. He relied on me for everything. I had a full time job. While I was in work he attended a day centre. I collected him directly after work and was always busy bringing him to speech therapy appointments, Special Olympics training, social events etc. He began to become very sociable and wanted to be more independent.
I met with our social worker first to discuss John moving into residential accommodation. The next step was to meet a liaison officer with the disability services. He said he would write up a ‘business case’ and send it to his manager. Then we met with the disability services manager. Everything was quite positive at the start. After a few months of meetings and needs assessments, nothing else happened. My meetings with the manager of disability services were negative. He said that this was not a priority case and that there was simply no funding available to provide housing for my brother.
At this stage I began approaching and meeting with local politicians. Some came to HSE meetings with me. At the start I felt that they were being helpful, but I quickly realised that it was not making any difference to our case. I regularly asked where my brother was on the priority list and was told that no such list exists. I asked who received and made a decision on our ‘business case’. I was told that this was sent to offices in Naas. When I asked for the name of the person or the office to which this was sent, I was told that they didn’t know. I contacted an advocacy service who also made representations on my brother’s behalf. I hounded the secretary of Minister Kathleen Lynch. I was often told that there are hundreds of other cases such as ours and that we are not a priority. This frustrated me further for two reasons. Firstly, I feel that it is the fault of the Government and the HSE that so many people are in similar situations. Secondly, I felt that we should be considered a priority case.
In January 2015, the disability services manager informed me that there was a 5-day place available in a house in another town. I was looking for a 7-day place so that my brother’s future would be secure and also that I so could have the possibility to go on holidays for a few weeks without having to come back at the weekend to care for my brother. Secondly I did not want my brother to be uprooted and have to move to another town, as he was very settled and happy where we lived. So I declined the place. I was then told that after turning down this place, we would probably never get offered anything else. I felt very pressured to accept that place, even though I knew that it was not the best option for my brother or me.
This was a very low point for us and I felt completely defeated. However I was always told that ‘He who shouts loudest will be heard’. So I continued writing letters, meeting with politicians, meeting with disability services. Eventually in December 2015, my brother was offered a 7-day place in a house in another town. While this was not completely suitable, as it was in another town, we felt that if we didn’t accept this place, we would never get anything. We accepted the place. In January 2016, my brother moved into his new house. He has also changed his day centre. He has settled in well and is very happy.
I feel strongly about Government funding and the HSE distribution of funding. First of all, I believe that in a democratic society, the protection of the vulnerable should be paramount. The elderly, the ill and those with disabilities are vulnerable, and should be cared for and protected by our Government before anything else. Secondly I feel that a review into the distribution of funding in disability services is necessary. Minister Kathleen Lynch stated that in 2015, that residential services were to be provided to 9000 people with a disability. Did this happen, and if it did, why was my brother not one of those 9000 people, and why was I constantly told that my brother was not a priority? I believe that funding is not being allocated appropriately and there is no transparency. Management structure within the HSE means that the ‘head honchos’ make the decisions with regard to how funding is allocated and there seems to be no accountability.
I call for the Government (when it is formed) to initiate a review into the distribution of funding within HSE disability services and to review management structure within the HSE.