Sara Porzio details the work involved in sourcing a suitable autism day service for her daughter, and the disappointment in finding it removed at the last minute. She questions whether the health service values all people equally.
Francesca left school in June 2016 but her mother was shocked to discover that accessing a post school placement, in spite of the promises of politicians, will not be easily achieved.
Sara Porzio, Francesca’s mother, contrasts how her daughter’s experience is so different for those students awaiting confirmatiion of their third level place and if disappointed in their first choice – other choices are available.
My daughter Francesca has autism and graduated from St Paul’s Special School in June of this year. In 2013, I had contacted our local Disability Manager. She told me that the school and the family would have to identify a service that best suited her needs, and that Francesca would be listed for a day service placement in 2015. Having discussed it with all concerned, we decided upon Gheel Autism Services. We felt it would be an ideal, nurturing environment for her. They have various small settings called “hubs” within our local community. She would continue to learn and work towards more independent living skills, the service was for life and it would evolve as her circumstances changed. We were very happy with our choice.
In February 2015, she was assessed at home by Gheel and we were told she would commence the new service on the 1st September 2015. Gheel then arranged for their psychologist to come to the school and see Francesca and the other three pupils who would be joining her. They also arranged for the pupils to visit a hub so that they could see it for themselves. Having struggled since her diagnosis to access first a primary and later a secondary school, I was delighted everything was at last going so smoothly. Having been involved in groups for people with special needs over the years I had knowledge of the difficulties other parents faced in accessing services in the past. I foolishly thought we were the lucky ones.
Late May we had the first indication that storm clouds were gathering. We received a letter from Gheel Autism Services stating that the HSE had not been in contact with regard to the funding and that a starting date of the 1st September was unlikely. I contacted the HSE and was told there was a problem with the funding, and that service providers would not get notice of funding until late June. On the 30th June we, along with 24 other families, were called to a meeting in Gheel’s office and were informed that due to a shortfall in funding they would not be in a position to offer us a day service. We left the meeting that evening reeling with shock. Outside the building the parents gathered together, united in our disbelief at the turn of events. We hurriedly exchanged phone numbers, promising that we would all contact our local political representatives.
The summer passed in a haze of emails and visits to politicians’ clinics. All to no avail. Up to this point, we had been assuring Francesca that she would be starting her service on the 1st September. She loved school and we wanted the transition between leaving school and beginning a day service to be seamless. The HSE assured us that talks were ongoing and they were confident some agreement could be reached.
On the 14th August, two weeks before her starting date, we received a phone call from the HSE informing us that Gheel Autism Services were no longer an option and that the assessments were being passed to another autism service provider. The Disability Manager told us that, realistically speaking, we would not have a day service until 2016. The proposed service provider is based in Wicklow. All the school leavers are from the north side of Dublin. Their intention is to set up a service on the north side of Dublin but as yet have no staff or premises. This is not the service I researched – this is not our choice for Francesca. A service is being cobbled together at breakneck speed with reduced funding. Nobody can answer questions as to what type of service it will be, where it will be, how many hours she will spend there because nobody knows. Francesca will just have to wait while the HSE tries to sort out this debacle.
We did all we had to do within the correct timeframes. The fact that these young adults were leaving school should not have been a surprise to the HSE. On April 16th this year, the Minister of State at the Department of Health with special responsibility for Primary Care, Social Care (Disabilities & Older People) and Mental Health, Kathleen Lynch TD stated in the Dáil that “As long as I have been in politics there was a crisis-driven approach with people with disabilities coming out of training or school having nowhere to go in September. We did not have such a situation last year and we will not have it this year”. I foolishly believed this empty promise.
Francesca cannot leave the house unaccompanied. She cannot be left at home unattended. She is lonely and asking for school each day. It is difficult to explain the situation to her. The parents of the twenty-four school leavers have come together as a group to try and be involved in the decisions that are being made behind closed doors for our children.
The overall feeling at this turn of events is helplessness. I wanted so much for the move from school to adult services to be easy for Francesca. Just after we discovered she would have nowhere to go in September, the Leaving Cert Results were announced. On the radio, representatives from the National Parents Council advised pupils not to worry if they didn’t get their first choice of college; there were always alternative solutions and various ways to access their goals. I felt deeply that day that my daughter counted for less than a “normal” school leaver. There was nobody from the Parents Council to advise us on choices. The truth is they couldn’t advise if they wanted to as, while other school leavers have a myriad of choices, Francesca has none. In the recent referendum there was much talk of equality and how much politicians valued it. There is no equality for my daughter.
If you wish to contact the parents’ support group you can do so via their Facebook page “Gheel 2015 Parents Support Group“.