Determined mum wows to take on Scottish Government over 'Postcode Lottery' support for adults with learning disabilities
Margaret Roberts, from Ayr, claims her severely learning disabled son Brandon, is the victim of 'discrimination.'
A devoted mum is demanding a national review of transport provision for adults who are learning disabled across all health and social care partnerships (HSCPs) in Scotland.
Margaret Roberts, from Ayr, claims her severely learning disabled son Brandon, is the victim of 'discrimination'- because South Ayrshire Council's HSCP won't help fund and meet his complex care and transport needs.
And Margaret claims the discrimination of learning disabled adults' care needs is more widespread - after discovering that many other Scottish local authorities DO fund transport costs.
She said: 'This is an atrocious case of discrimination and it's an issue that needs to be urgently reviewed by the Scottish Government.
'Basically, the South Ayrshire Council HSCP were trying to make Brandon fit a service that didn't fit him and I am not going to allow this. Instead, I am challenging the system and I am requesting that the Scottish Government, conducts a national review of transport provision for adults with learning disabilities - across all HSCPs.'
Ayrshire Live previously told how Margaret and Brandon were left in limbo last year following a dispute with South Ayrshire Council's HSCP over Brandon's health and social care needs.
At the time Margaret claimed she'd been forced to adopt additional caring pressures for Brandon, after a fallout with social care chiefs.
The dispute arrived as a result of the local authority's proposed new day-care service package which identified Arrol Park, in Doonfoot Road, Ayr, for Brandon's health and social care needs.
However, Margaret labelled the set-up 'unsuitable and dangerous for Brandon,' because Brandon has a history of absconding and has no road safety awareness. She was also told that the council would not help fund transport arrangements for Brandon to attend.
The South Ayrshire Health and Social Care Partnership said they were willing to 'work with the family' to achieve the best outcome for Brandon, but so far the situation hasn't changed. Brandon is still supported by his mum 24/7 for the last 16 months.
And it's prompted Margaret to claim a 'Postcode Lottery' exists after she raised a Freedom of Information request showing that many other councils do stump up the cash for similar needs.
Margaret now has the backing of one MSP who has been made aware of her situation and is also calling for a review.
Brandon, 28, is severely learning disabled and lives with Autism. He is also non-verbal and has a fixation with transport.
On one previous occasion Brandon absconded was later traced on a train to Aberdeen.
He previously attended Camphill Blairdrummod, a third sector day service in Stirling since leaving school nine years ago.
Margaret and Brandon moved to South Ayrshire in November 2023 which resulted in Brandon's care package being transferred from the East Dunbartonshire Adult Disabilities Team to the South Ayrshire Adult Disabilities Team.
From the outset of Brandon transferring to South Ayrshire - and before any needs assessment had been done by a social worker - it was stipulated by the social work department that they would not be funding the same care package for Brandon.
Margaret was also told Brandon would be going to Arrol Park Resource Centre three days per week - and they would NOT be providing transport to assist his travel.
According to Margaret, South Ayrshire Social workers even suggested that he purchased a mobility car to fund his own travel and that his mum could drop him off and collect him.
But Margaret has her own professional career and unable to facilitate this.
Again, says Margaret, this was suggested without a carers support plan 'being completed.'
Despite meetings with the head of service and social work service manager, Margaret's still not been able to secure an agreement that suits Brandon's care needs.
Margaret said: 'The Carers (Scotland) Act 2016 states that carers should be supported to work if they choose to do so. Social workers are required to take the Carers (Scotland) Act 2016 into consideration when developing an individual's carers support plan. They should consider their need to balance their caring responsibilities with work, quality of life and wellbeing whilst undertaking their caring role.'
Margaret's situation was assessed as part of her carers support plan assessment. But nothing put in place to enable her to balance work commitments and transport Brandon to and from the identified suitable service.
'The Scottish Government's health and wellbeing framework stipulates that the priority for Scottish Ministers is to improve people's experience of health and care services and the outcomes that services achieve,' said Margaret.
'In particular, improving the quality and consistency of outcomes across Scotland, so that people and carers have a similar experience of services and support, whichever, Health Board or Local Authority area they live within.
'But there are inconsistencies and people like Brandon are not getting the level of service they are entitled to, so there's discrepancies and discrimination here.'
Margaret set out to conduct research at national level to scope out how many local authorities across the country implemented the same practices.
There are 32 local authorities in Scotland. Margaret contacted the 32 local authorities using under the Freedom of Information Act.
And, according to Margaret, her findings demonstrated a 'clear inequality' across the country in relation to providing transport for people who are learning disabled to their day services.
She said: 'This inconsistent approach clearly demonstrates a postcode lottery, where services are determined not by need, but by geography, for those who are learning disabled adults.'
Margaret's FOI shows there are 13 local authorities who do not provide transport. All three local authorities in Ayrshire (North, East and South) don't provide this.
Margaret said: 'This situation raises serious human rights concerns. Unpaid carers are being relied upon to provide daily transport, often at the expense of their own employment and wellbeing, contrary to the Scottish Government's statutory commitments to support carers.
'Carers have been forced to reduce working hours, give up careers that they have worked hard for to facilitate travel for their adult to access a day service. This forces families further into poverty and poor health outcomes.'
Margaret is now campaigning for the power of these decisions to be removed from local authorities and for Scottish government to take leaderships on this issue and conduct a national review of transport for provision, for adults who are learning disabled- across all HSCPs.
She also requesting that Holyrood introduce clear national guidance or standards to ensure equity and consistency in service access across Scotland and a 'rights-based approach to future service planning,' 'in line with Scotland's obligations under international and domestic law.'
She added: 'This is a matter of dignity, fairness, and equality and should be treated it with the gravity it deserves and to also address the growing inequalities faced by learning disabled adults and the families who support them.'
A spokesperson for the South Ayrshire Health and Social Care Partnership said: 'South Ayrshire Health and Social Care Partnership are working to achieve the principles set out by Scottish Government and our local Strategy to provide care closer to people's homes.
'We can't comment on individual cases, but we continue to work with the family to achieve the best outcomes based on the principles of improving health and wellbeing, choice and control, living as independently as possible and active citizenship.'
Social Care Minister Maree Todd, who this week moved across to take on the drug and alcohol ministerial brief, said: 'The Scottish Government want those with learning disabilities to live longer and healthier lives.
'Independent living is a crucial part of enabling human rights, with self-directed support playing a key role in delivering this.
'The Scottish Government holds overarching responsibility for health and social care policy in Scotland and has published clear standards outlining what people should expect when accessing services.
'The statutory responsibility for delivering, commissioning and providing appropriate social care services at a local level lies with local authorities and Health and Social Care Partnerships, taking account of local population needs.'
South Scotland Labour List MSP, Colin Smyth, said: 'Margaret and Brandon's situation is deeply upsetting— and sadly, it reflects a wider problem families across Scotland are facing.
'There is a clear postcode lottery that exists when it comes to support for adults with learning disabilities.
'Some Health and Social Care Partnerships fund transport, others don't— and that inconsistency is placing huge pressure on carers and creating unnecessary barriers for those who need help the most.
'Families shouldn't be forced to fight for basic support because of where they happen to live. The system must be fairer.'
He added: 'The Scottish Government needs to carry out a national review and bring forward clear guidance to ensure everyone, no matter where they live, gets the support they're entitled to.'
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