The Scottish Government has insisted it is still committed to the reform but postponed parliamentary progress of the Bill in Holyrood after local government body Cosla, trade unions and opposition parties withdrew support.
The flagship plans aims to transfer social care responsibilities from councils to a national body.
But the Disabled People’s Movement, made up of Inclusion Scotland, the Scottish Independent Living Coalition, Glasgow Centre for Inclusive Living, Disability Alliance, DG Voice and Lothian Centre for Inclusive Living, warned the “status quo” was not an option.
In an open letter to the Scottish cabinet, seen exclusively by The Herald, the charities wrote: “We are truly shocked to hear reports that the National Care Service will be delayed or scrapped altogether.
“This cannot be allowed to happen when wholesale reform is so urgently needed.
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“The current social care system frequently fails to meet our needs or uphold our human rights and dignity; that is, if we get it in the first place.
“For too long, disabled people have been the object of services, not the subject of our destinies.”
There will be a ministerial statement on the future of the care service plans in Holyrood on Thursday.
Social care minister Maree Todd was pressed last week on whether the proposals could be scrapped in their entirety. She did not respond to that direct question, but told BBC Radio’s Good Morning Scotland programme: “We need to reflect on what we have heard over the last few weeks.”
Ms Todd urged opponents of the Bill to “put politics to the side”.
The Disabled People’s Movement said the debate had become a “political tug of war”, while their service users struggle with eating, dressing and bathing.
The letter said: “The National Care Service was meant to be a much-needed reform, which would raise standards, end the postcode lottery, fully implement self-directed support, ensure accountability to the service user, as well as the electorate and properly value unpaid carers and the workforce.”
“By far, disabled people are the highest users of social care and therefore should be at the heart of plans to strengthen and transform the system,” the letter said.
“In reality our voices have been diluted, and the need for change – previously agreed by all stakeholders including political parties, unions, Cosla and local authorities – have been forgotten.
“Now, the National Care Service has become a political tug-of-war between Scottish and local governments about who should have the responsibility for social care, rather than how to meet that responsibility.”
It urged the “huge” work that has gone into the NCS “not to be wasted”.
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“As we wait for reform, members of our movement are reporting that thy cannot get washed, dressed, go to the toilet or eat because they cannot get the support they need,” it added.
“Even for those who do get social care, they are charged exorbitant fees, which plunge them further into poverty.
“This is why we need a National Care Service and fundamental reforms to the broken systems.
“Disabled people of all ages need change, and the status quo is not an option because disabled people are suffering.
“We need vital support to live a life of dignity and choices that non-disabled people take for granted.”
The care service plan was dealt a fatal blow last month when former government partners, the Scottish Greens, withdrew support.
The planned shake-up was first announced in the aftermath of the Covid pandemic, but since then the proposed National Care Service has suffered delays and spiralling costs.
Trad unions withdrew support arguing the Scottish Government was “hellbent” on repeating past mistakes. The Scottish Trades Union Congress (STUC) warned the Bill was content for low pay and insecure workers to continue for social care staff.
Meanwhile, Cosla argued the changes proposed by ministers would have the “cumulative effect of eroding local decision-making and the role of local government within social services.”
Donald Macaskill, chief executive of Scottish Care, welcomed the pausing of the National Care Service as an “opportunity to address the urgent and systemic issues facing social care”.
He said: “The current system, marked by a postcode lottery and inconsistent contracting and commissioning practices, demand reform to deliver a fairer, ethic and sustainable model of care.
“However, while we look forward to the next steps in developing the National Care Service, the immediate priority for the sector must be sustainability.”
Mr Macaskill said the recent national insurance decisions from the UK Government had caused “unprecedented strain” on social care providers.
“We urge the Government to work closely with stakeholders to ensure stability in the short term as we continue to work towards a more equitable and effective care system for the future,” he said.
Social csr minister Maree Todd said: “We are grateful to people with lived experience and Disabled People Organisations for their continued insight into why urgent social care reform, through a National Care Service, is much needed.
“We are working to secure the change they need, using every option available we have to do this.”
