My name is Geraldine Lavelle. I am living in Cheshire Services (which is a congregated care setting) and receive a support service from the local HSE Physical and Sensory (P&S) Department. I am telling my story to raise awareness. I endured a spinal cord injury almost four years ago. I am 31 years of age. To live independently since acquiring my disability I have had to live in a congregated setting, Cheshire Ireland, for almost three and a half years; leaving me without free choice to integrate adequately in to a new community.
My present accommodation does not meet my needs. Firstly, it is a Congregated Setting. I want to maximise my independence and move from an institutional setting. Secondly, I have a very small apartment in which I live, which comprises of a bathroom and just one other room which makes up my bedroom, kitchen and living area. Finally, I recently learned that I am eligible for a service dog but have been told that my current accommodation would not be suitable for the dog.
Support to find suitable accommodation
It is my goal to find alternative accommodation which would allow me to live independently in the town. It is the role of the P&S Service and my HSE case co-ordinator to identify and help negotiate appropriate service provision for me while also liaising with professionals from the HSE and other services to ensure access to, coordination of and delivery of services to me.
I have made my wishes known to the HSE Physical and Sensory (approx. 3.5 years ago) department and requested support to find suitable accommodation to no avail. Unfortunately to date little or no support has been provided by the HSE to secure alternative accommodation and services for me. Any property which has been proposed to date has not met my needs. The most recent property proposed in May 2017 was a fourth floor apartment in the town area. This is despite my Occupational Therapist, having outlined in her report submitted to both the P&S Dept and the Council in 2016 that I require a ground floor property for fire safety . (Hard to believe but the only two purpose built wheel chair accessible apartments were constructed on a fourth floor with an elevator that can break down at any stage?!!)
Apart from occasional contact with the Local Authority to the best of my knowledge no further support has been provided by the HSE to source accommodation for me. I myself have been continually trying to find accommodation e.g. through ads for private rented accommodation, approaches to local estate agents and requesting assistance from Cheshire. Unfortunately I have had no success in finding a property that meets my needs. I believe if there was proactive engagement from the HSE with local housing bodies, estate agents etc. on my behalf I would have a much greater chance of securing accommodation. I am aware that there are many people who are moving or who are due to move out of other Congregated Settings in the area. I understand the HSE are proactively sourcing suitable accommodation locally for these individuals and I feel it is only fair that I am afforded the same supports.
In June 2011, the HSE published the Report of the Working Group on Congregated Settings – This report envisaged a new model for residential support, deeming congregated settings as illegal and stated people living in such settings will be moved “to dispersed housing in ordinary communities’. Despite the HSE setting out this agreed national policy six years ago, for people with disabilities to be supported “to live ordinary lives in ordinary places’, a shortage of accessible housing is the reality.
There is no one in my present setting, Cheshire Ireland, employed to help with this issue either. In fact, in a follow up complaint letter from Cheshire Regional Manager in the West, I was told “Cheshire Ireland does not provide community housing nor do we have any legal responsibility to do so”. “Cheshire Ireland are no longer responsible for the granting of a community support package or the provision of alternative services”. “Unfortunately, Cheshire Ireland are not in a position to allocate additional resources to this matter”. Despite being in direct talks with them for the last three years about this current matter.
Clarity re support package in the community
I have been trying to get clarity from the Physical and Sensory Department on the support package that will be provided to me upon a move to the community for well over a year. Despite numerous e mails to both My case co-ordinator and the P&S manager I am none the wiser after more than three years of communication with them. In a letter to me, the manager advised that an application for my package was submitted in 2015/2016 but said she has yet to receive approval for the required package.
I now find myself in the situation where if I were to find suitable accommodation tomorrow I don’t even know if I would receive a care package. Further still if a care package is to be provided I don’t know how many hours of support I will receive or who will provide the service to me. My current situation is most unsatisfactory and I have made a formal complaint to the HSE which has not been replied to surprisingly.
I would just like to finish by saying the myriad initiatives designed to lift people out of isolation and segregation are failing the people and not allowing them free choice to integrate adequately in to a new community.