Thurso mum pleas for respite care for autistic son and slams council's 'insulting twaddle'
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A Thurso mum with a severely autistic boy hit back at Highland Council's "insulting twaddle" with regard to its policy on local respite care provision.
Elizabeth Jones said her son, seven-year-old Ollie, is in need of the care formerly in place at Thor House in Thurso which has changed its policy of providing respite assistance for struggling parents in need of a break.
"Thor House was specifically designed for disabled children and adults but these service users have now been ousted out in favour of children in care – who used to live in Avonlea care home in Wick," stated Mrs Jones.
She says she recently moved to Thurso after being in Castletown for seven years where the family lived in a "severely overcrowded" house. Ollie shared her bedroom throughout that period and eventually slept behind a DIY stud wall with a lockable gate "for his own safety".
"Ollie's level of autism was too severe for him to attend Castletown Primary School, so he was placed in Mount Pleasant Primary School enhanced provision, in Thurso. He was the only child in that specialist class to be attending from Castletown, which meant that a minibus was sent out twice a day just for him. It made much more sense for us to move into [Thurso]."
Mrs Jones says that her son is entitled to overnight respite care and she even has a financial package in place to fund it, called Self-Directed Support (SDS). "It made sense that we moved into a home within walking distance of Thor House, assuming that respite services there were going to resume. However, that never happened.
"There was no public consultation about the change of use of Thor House from a respite care centre to a children's home, and nor were parents of disabled children, myself included, consulted about the huge changes."
Mrs Jones appeared on an STV news item about the issue a year ago and says that the only thing that has changed since then is that Highland Council has openly declared to her in a letter that there is "not enough need for overnight respite in Caithness" and that Thor House will now remain as a children's care home, with "no plans" to revert back to a respite centre.
While acknowledging Mrs Jones' frustration over the issue, Jacquie Hutchinson from the council's health and social care department, stated in a letter from December 11 that the change of use at Thor House "occurred as a necessity" during the pandemic and that a four-bed short break service is "too large a facility for the north".
She wrote: "Covid-19 rules prohibited respite at that point, so Thor House was repurposed into a children's home. No plans exist to change this building back into a short break facility."
The letter went on to state that the council is currently reviewing its services for children with disabilities and "exploring alternative provisions". It says the council welcomes comments from parents needing respite care and, in the new year, would like to meet with carers and providers about the needs of disabled people in Caithness and Sutherland with regard to overnight short breaks. In her letter, Ms Hutchinson also says that an early review of Ollie's SDS package could be arranged as well.
"For the Highland Council to respond to my complaint that there just isn't enough demand for respite services in Caithness is absolute insulting twaddle," said Mrs Jones.
She says she is speaking with others on the Caithness Autism Support Group Facebook page to demand the return and/or creation of essential respite and care services in Caithness.
Mrs Jones says that her new home in Thurso has a special wet room for Ollie, provided by Cairn Housing, as he still cannot use the toilet and wears nappies and requires a lot of washing.
"The wet room has been amazing, and now Ollie finally has his own bedroom too. However, he can still be very demanding to look after, and so I need the occasional night off, as do my other three children. Even Ollie would benefit from a night of respite care.
"I can now see Thor House from the windows of my new home. Just think how frustrating that is, knowing that my son is ousted out of there for good, in favour of children in care."
Mrs Jones thinks it is ironic that the council's SDS funding package is there for her son but there is no local service provision.
Thurso and Northwest Caithness councillor Matthew Reiss said: "Thor House was specifically set up to provide respite care for people in Caithness which was withdrawn during the pandemic and should have been reinstated but it hasn't.
"The council is carrying out a review but Elizabeth has been told in plain English that there isn't a demand for a four-bedroom unit. If the review is still ongoing then it's surprising that that conclusion has already been reached."
He went on to state that he has not received a satisfactory answer on the matter from Highland Council.
"It isn't acceptable if parents are being told the nearest centre is in Inverness at Orchard House. The council talk a lot about trying to stem the depopulation but this is an example of a really basic service being withdrawn from the far north."
The Caithness Autism Support Group is on Facebook at: www.facebook.com/groups/199470060502675
Mrs Jones says that she welcomes any comments via email at: violin_lizzy@yahoo.co.uk or on Facebook Messenger.
Far north MP Jamie Stone intends to speak with concerned parents about the matter in Wick on January 26.
