It has been almost 9 years since my son was subjected to an unofficial lockdown of all community services.
Since January 2013, he was prevented from taking allocated respite at a specialist health unit. They claimed he couldn’t be managed and he was punished for a short-staffing situation on the unit at the time of his very last respite there.
There was no choice of dates for the respite as the manager allocated each of the client’s respite on a yearly basis. Apparently, during his last stay, the client mix was also incompatible. This wasn’t his fault, but he was still subjected to the punishment of no further respite services ever again.
The same went for community day services which were only tried for 3 part days before the service run by health had decided that they weren’t prepared to follow any guidelines in place, and so they just stopped the service without replacing it. Or even trying to find an alternative.
They knew fully they wouldn’t be able to find an alternative, as many day services had closed down. The one he was allocated by health was the only one available. It was a specialist healthcare day centre.
It was a set-up by health, in order to discriminate against my son’s disabilities. In particular, autism and learning disabilities. Coupled with uncontrolled seizure activity it was the perfect excuse to get rid of their responsibilities by blaming ‘the client’.
Lack of toleration was mentioned by none other than his own consultant at the time, whose actual words were ‘zero toleration’. That was actually worse than the fact there was a complete lack of toleration being transferred by a consultant working in the field of intellectual disability and that is not the only method of transfer he used either.
All of my son’s health file is being prevented from view and has been the entire time he has been under a learning disability team. When he was a child, I was totally ignored when asking to see his health file. The ignorance continued until he was an adult…and still continues.
When he became an adult the service (if it can be called that) made it more or less impossible to properly view his health file. The fact all of the years I had been seeing visitors and speaking to them has made no difference in allowing me to view the files. There is an encouragement given to professionals to write what they like within his health file, now he’s an adult.
It continues and affects the treatment of my son. He isn’t getting proper health care and that is in every respect. No effort is being made by his ‘team’ to ensure his health is respected and furthermore, it has been like this all along.
My own son has suffered discrimination against his disabilities for a quantifiable amount of time stretching into decades of his life and it still continues to this day.
His medical situation, including uncontrolled seizures, is still present with no outcome or assistance from his ‘team’. They (the nurse and consultant) claim to have alerted my son’s G.P. of the restrictions on his ability to manage any in-clinic appointments, but there is actually no evidence from the file writings, so far, that any action has been taken at all to convey this.
If anything the file writing suggests that it is a choice of his ‘not to attend’ and regularly this is written as a reprimand towards my son and in order to misinform other health professionals. He has been criticized for failing to attend, more than assisted in doing so, as there have been no suggestions of any help for this problem. It is a phobia and not a deliberate act of his choosing. So the lockdown of services now includes any proper medical assistance as well as no community services. It’s been like this for decades.
The reason for most of his present phobias has been the initial lockdown of community services in early 2013 and the refusal to include any on-going community services all through his life. No outlets were ever properly made available to him by health or social care. Or education.
None has cared a jot about the outcome for my son or considered the long-term impact, which has now taken place. Caused entirely by a lack of tolerance by professional individuals who have had the responsibility of his special needs the whole time, but failed to constructively tailor a package for his needs earlier in his life and now this spills over into the here and now, his adult life.
My son is a young man of 34 who has been locked out of services not just through the unprecedented circumstances as is occurring to many people with learning disability/ autism and more complex problems through the closure of essential services. It is not just a case of services closing down due to COVID-19.
It is a case of a whole lifetime of ostracising specific members of the community who are disabled and health and social care are using poor excuses to do so. Now for many, this includes continued closure of community facilities to prevent usage. In particular, this is an exclusive measure taken towards keeping services for the disabled closed, and with the poor excuses continuing from the health and social care to continue to do this.
Government-led, of course, by the creating of the Coronavirus Act., right from the onset and at the beginning of this present pandemic.
Social workers and health staff have taken this to mean they are entitled to exclude the clients with learning disabilities, in particular, from most services and support networks.
In my son’s case, this has been going on for decades of his life prior to the pandemic, and all is now known excuses excavated from this pandemic situation, now used very much, to disadvantage the disabled and their carers. In order to suppress and damage their quality of life and excuse professional responsibilities towards clients needing to use health and social care facilities.
And health and social care management know fully about the consequences of continuing with this structure. It’s just they don’t really care because they will always have the professionals who are readily available to blame the ‘service users’ for any consequences.