It now 160 days since any appropriate day care services and respite since the COVID 19 lockdown and notwithstanding commitments from the new Government to provide these services with 3 Ministers appointed in the Disability area we have received any engagement from these Ministers .
So the text arrived on Sunday 160 days ago , “day care services are no longer available with effect from Monday morning “.
No words of support or no advice on what to do on Monday morning ” your guys are on your own” I was told. What if we get the virus I asked ? “don’t was the terse response or you will be isolated in City West” ( a 4 star hotel taking over by the Health board as a centre for Coronavirus, and who then will care for your boys I asked ? no response .
Later that Monday I got a call from the Health Services Board ” the respite promised on Tuesday to Friday is cancelled” and “the following 4 months respite break will now not happen” .We need the house for Naas Hospital and for staff that we may be hiring under the Ireland Call Scheme .
What do I do ? I asked ,,this respite was vital as it allowed us to spilt the demands of 2 boys with ASD. What happens if we get sick what if we get the virus and pass it on , “best if you don’ t get the virus “ was the response .
That was the approach taken by the HSE towards young adults with ASD and their carers and families , the State decided that they could abandon them completely as the State regards them as second class citizens with less priority than ‘ Normal people ”
Across Ireland 1000s of carers who depend on day care supports and respite are now isolated from supports that are vital. Thats our understanding of self -isolation . However the State are legally obliged to deliver these supports and in Ireland’s case they have failed to do so significantly .
The damage the withdrawal of these services is having on people with ASD is frightening.
People with ASD have huge difficulty with change and the Pandemic is change in the extreme , carers are experiencing self-harming ,fear, anxiety and stress and in some case aggression which arises out of acute fear and stress .
Now 100 days later and nothing has changed for 18,000 adults with disabilities, no re-opening plan, no restoration of day care services , no respite and zero support and no mention of this group of people over the course of 100 days of press conferences and photo opps .
The Irish Government passed on it’s responsibilities for it’s most vunerlable citizens to the families and carers of these loved individuals because they the Government where well aware that we would not let them down no mater what the cost to families and carers both mentally and physically.
100 days later we are still working 24/7 and yes we are isolated but it is an isolation provided by the HSE who ignore us on a daily basis.
In my case they Day Care staff that got re-allocated in March the 11th to contact tracing this never took place and most of these skilled staff did little or nothing over the 100 days , the respite house was never used as the HSE failed to hire nurses under the Ireland call scheme with only 55 recruited from over 60,000 applications .
It is an exhausting and endless fight just to get the basic services for your vulnerable dependant adults in the first instance and then to have to face the complete abandonment by the State during a Pandemic was never expected and hugely damaging for the 18,000 people and their families .
My plea is that this will not change unless attitudes in society changes and that we see the rights that persons with disabilities as equal and not second class as this Pandemic has revealed .