Closure of National Autistic Society centre in Irthlingborough will be a 'disaster' say heartbroken parents

Parents of adults with severe autism who attend a specialist charity-run day centre have begged for help after the National Autistic Society (NAS) announced its sudden closure.

A letter sent to carers of Diamond Centre clients gave shocked families seven weeks notice that the lifeline service would be shutting on November 3 citing a funding crisis.

The NAS confirmed the centre and their residential and supported living services in Wellingborough and the Northants Outreach Service would all shut.

Diane and Ivor Jones from Wellingborough, have been relying on the care provided by the Diamonds Centre for seven years for their 25-year-old son Elliott.

She said: “They are destroying the lives of our children and our lives. We want to fight this and we want answers.

"I am usually a very placid, calm and gentle person – everything you need to deal with autism – but now I’m stressed and angry. We all love our kids and all feel the same.”

On September 13, families received letters from the NAS announcing the ‘last resort’ closure and explaining that ‘chronic underfunding’ by central government had led to a lack of additional funding to local authorities – North Northants Council (NNC) and West Northants Council (WNC).

They said they had been contact with NNC and WNC over the past eight months to discuss rising costs and that they would need a ‘critical uplift’ in funding.

NAS said that despite eleventh hour efforts they were ‘very sadly’ left with no choice but to serve notice on all contracts and close the service.

Those affected have formed the Save Irthlingborough Daycentre group (SID) to fight the closure and save the essential services for their adult children.

With time running out, the bespoke activities provided by the centre based on clients’ interests will come to an end.

Parents have praised the staff for their specialist care towards the ‘children’ including supervised trips to the shops and pubs, countryside walks, and arts and crafts sessions.

Diana Tunnicliff’s 37-year-old daughter Heidi has attended the day centre for 18 years says the decision is a ‘disaster’.

She said: “We are crushed. I’m running on steam but I’m falling apart. All of our mental health is suffering. I’m going to pay the price for the closure. The time when Heidi is at the day centre is the only respite I get. It’s the same for all of us. It’s going to be a disaster.

"They gave me seven weeks notice of the closure. They know as well as I do that it takes a minimum of six weeks for a severe autistic person to transition. They expect us mothers to relocate and transition in the time they have given us."

Parents say there are no other day centre facilities that are appropriate and other providers would be unable to cope with their children’s multiple needs.

Diamond Centre user Martin Seaman, 35, from Kingsthorpe, Northampton has daily fits that often leave him with head injuries. His mum Pauline and sister Jackie-Lee are fighting to keep the centre open.

Pauline said: “I think what is happening is against their human rights. They (the NAS) should have had the guts to approach us. It sent us a generic letter and they have ignored us.”

Jackie-Lee, who supports her mum in looking after Martin, said: “They are supposed to be for autistic children. They don’t deserve the name of the National Autistic Society."

Many of the families affected are lone parents and say the decision has had a huge negative affect on their mental health.

Hilary Steele’s 26-year-old son Daniel has been attending the centre for eight years travelling from their Higham Ferrers home.

She said: “I’m crying at night, I’m not sleeping, I’m getting panic attacks.”

Lyn Goodwin from Northampton secured a place for her son Callum at the Diamond Centre last year and was very pleased with the service provided for her 23-year-old. She hoped he would continue at the centre until the ‘shock’ news.

She said: “We have nowhere to go. When I was told I was in shock, I said ‘where is he going to go? We’re going to be left on the scrapheap.

"He is non-verbal and when he goes for people he needs a four to one ratio. His anxiety is going through the roof because he can sense my worry. Seven weeks notice is not acceptable. I don’t want to go through that transition again.”

Steven Rose, Interim Managing Director (Adult Services) at the National Autistic Society apologised for the sad decision but said they have no other choice.

He said: “Like all providers of social care, we are facing huge challenges. Demand for the support we offer is going up, while the funding that councils have to fund it has not kept pace.

"Two government select committees have suggested an additional £7 billion a year is needed for adult social care. Chronic underfunding of adult social care by government has meant staff wages not being able to keep up with comparable jobs, resulting in an increase in unfilled vacancies. Meanwhile, the cost-of-living squeeze that everyone faces applies equally to our charity, with rising energy and food bills. Because of this, many of our services are running at a deficit.   

“Our priority is always the quality of the support that we deliver and keeping the autistic people who receive that support safe. However, within the current funding crisis in social care, it has become impossible for our charity to do this to a level that both we demand and that autistic people have a right to expect.      

“We are not alone in facing these challenges, which are the result of years of underfunding of social care by central government. This has placed enormous pressures on local authorities and providers like us.    

“We are sorry to confirm that we are closing the Northants Diamond Day Centre; our Northants residential and supported living services (which includes Heath Rise and Sheep Street) and the Northants Outreach Service.

“We are incredibly sad and sorry that we have to make these extremely difficult decisions, but we have no other choice. The social care system is in crisis – and needs significant investment and reform by the Government to improve the lives of people who rely on it.  

“This is not an issue that has arisen this year, but one that has come about as a result of many years of underfunding, through which we have been making up the shortfall ourselves. 

“In an effort to save our services from closure, we have investigated all other options.

“The National Autistic Society has been in discussions with local authority funders since January 2023 to try and secure the appropriate fee uplift for the people we support. 

“We had hoped we could come to an agreement with the local authorities to pay the additional fees required, through our ongoing discussions with them. 

"We did not inform our supported people and their families of these discussions, as we did not wish to worry them unnecessarily in the event that the appropriate funding was agreed. 

“Unfortunately, many councils do not have the funding themselves to pay any more.  We’re deeply sorry that we have been unable to secure this funding and our situation has reached the point that we must make some tough decisions, including the closure of our much needed services. We cannot keep running services that are in deficit, because that would make our whole organisation financially unviable. We have to be sustainable as an organisation if we are going to change people’s lives.   

“We know this will be worrying for our staff and the autistic people and families we support through our many activities and services. We also recognise the timescales are very difficult for those affected but we are keeping the services open as long as we are financially able to.

“Our priority is to support those groups as we navigate this period of change.”

In a joint statement from Councillor Helen Harrison, NNC’s executive member for adults, health and wellbeing and Cllr Matt Golby, WNC’s cabinet member for adult social care and public Health, said: “Looking after our most vulnerable people is a priority for both North Northamptonshire and West Northamptonshire Councils and it’s important that people receive the right care in an appropriate setting.

“The National Autistic Society (NAS) delivers services to 25 adults in North Northants and 13 adults in West Northants – providing residential care, supported living, and living and learning arrangements.

“In January NAS contacted both councils and demanded significant fee uplifts without clear justification. Together, the councils have tried to on multiple occasions engage with NAS to resolve the funding issue however have found that NAS have been unwilling to provide information needed to assess the request for an increase in fees, which has resulted in threats to terminate contracts.

“While both councils are committed to providing quality services and ensure a fairness in payments, it is also vital we are mindful of our responsibility on spending the public money and creating a fair pay balance across all providers. The requested uplift was far greater than what has been agreed with other providers and was not financially viable.

“We understand that this news will cause worry for those who use these services and their families and we would like to assure that both councils are working together at pace to find suitable alternatives.

“We are liaising with the families of those involved and have assured them we are doing everything we can to find a solution and to minimise any disruption to the lives of their loved ones.”

Peter Bone MP for Wellingborough and Tom Pursglove MP for Corby met with parents from SID and will ask the NAS to consider delaying the closure.

Mr Bone said: “The meeting was heartbreaking. I’m appalled at the lack of notice the NAS has given to desperate parents. I call on the society to extend the deadline for six months and in that period find a solution. It’s desperate for the parents. There is no easy quick-term solution.”