In these election Days of February 2020 some of the absurdities in the provision of services for those with severe disabilities including autism in our state should be highlighted by parents and families of those requiring such care.
I used to be frustrated that those in charge of such agencies were silent in the media, silent in the advocacy highlighting such absurd provision. Until I realised the very nature of such agencies precluded them from such advocacy.
Whether such agencies were nazi Death Camps, Irish Direct Provision Centres, The Prison Service or the practice of Renting and Leasing properties for those suffering from severe autism, it is rare to find an advocate in such services, who is also a campaigner for change.
From their inception these organisations evolve out of the need to serve the particular needs of their clients, their leaders are engaged with best practice on how to best serve the needs of their clients. As they evolve, these organisations organically develop responding to the needs of their clients and the needs of outside agencies or organisations.
The organisation requires bureaucracy and governance and staff with salaries, pay and conditions, staffing structure, paperwork, rules and regulations. Even with best practice and a sinusoidal curve with bureaucracy above the evolving X line of time and the Y curve serving the needs of clients, there is always the drift in emphasis towards increasing bureaucracy and less focus on what the original aims of the service or organisation was, to best serve the needs of clients.
Some now regard the HSE as a failed entity, out of control, in need of complete overhaul, from top to bottom. Its an organisation that has so disappeared into its own bubble, that its incapapable of reform or change. There are many good people in that organisation frustrated with its shortcomings and failings evidenced in trolleys that would embarrass the founders of our state if they were alive today.
Gheel supplies adult services for those with autism requiring residential provision. Its a scandal and disgrace for those with such needs Gheel is required to rent/lease properties in the private market. Its a waste of taxpayers money propping up the high cost of rent in the private market. Gheel staff are required to spend exorbitant lengths of time negotiating leases, securing properties. Regulations require the outfitting of such properties again at taxpayers expense.
Within the limits provided by their circumstances Gheel staff do a fine job.
With the sudden passing on or for some other reason the landlord wishes to sell the property, adults with autism with staff all requiring structure and calm, face sudden eviction where notice of change can be as little as a few months. Further complications can impact the client and their families regarding deficiencies in planning that involve delays, endless committee meetings, decisions enmeshed in bureaucratic entanglements compromised by lack of resources. Lost somewhere in HSE space.
As evidence of the above, as a family trying to serve the needs of an adult with severe autism aged 32 yrs, because of the need to sell a property previously deignated as location for a day service and a respite service: We lost the already infrequent respite of a weekend every three weeks, lost over 5 months ago including over the extended break of Christmas while staff and service providers still struggle to put a residential service in place.
Your adult with severe autism, due to an economic downturn or other cause, could also find themselves homeless. We must face the possibility that inadequate and compromised services may not at such time in such circumstances be able to respond to provide the long term residential care required for an adult with severe autism in Ireland.
Do not expect advocacy from those within the HSE mandated to garner confidence in the service they lead. They are not appointed to challenge the HSE. Its up to parents, families and members of the general public, politicians and the news media, to advocate for change.
Gheel Family & Friends
Chairperson: John Hanlon
Secretary: Michael Kenny
Treasurer: Betty Bowden
Dear Families and Friends,Please note that the next meeting of the Families and Friends of Gheel will take place as follows:
Next meeting: Wednesday 29th January 2020 at 8.00pm Venue: Gheel Autism Services, Griffith Court, Fairview, Dublin 3
Gheel is working on its strategic plan 2018-2020. Parents are wondering to what extent this strategic plan will move Gheel from a service providing residential services based on a rent/lease model, to one that is founded on freehold acquisition of property that can be a secure foundation for long term residential service provision?As an aid, and in case meeting notices are delayed or don’t get to you we hold our meetings usually on the last Wednesday every two months, starting in September.
John Hanlon, Betty Bowden, Michael Kenny
Chairperson Treasurer Secretary
Families and Friends of Gheel
FYI Making a will taking disabled person's needs into account.
Meetings take place at Fairview Center, 8pm, unless otherwise indicated. Contact us via contact form, email, for further information.