ITV News' findings prompt government 'crackdown' on families being cut off from disabled loved ones

Ministers have promised to strengthen visiting rights and warned they could change the law to ensure better protections for families, as Investigations Editor Daniel Hewitt reports

The government has promised to “crack down” on care companies that ban families from visiting their vulnerable relatives, following an ITV News investigation.

Care Minister Stephen Kinnock told ITV News families will “no longer be cut off from their loved ones” and promised to improve visitation rights and end blanket bans on contact.

It follows an ITV News investigation which found hundreds of families claiming they have been restricted or banned by care companies and councils from seeing loved ones with learning disabilities, after complaining about the quality of care.

Stephen Kinnock told ITV News last month that the practice was “completely unacceptable” and has now announced a crackdown on bans and restrictions.

“We saw that in some cases, there were settings where the family, the loved ones, who had the absolute right to come and visit, were being prevented from doing so. So we need to fix that, ” the care minister told ITV News.

“ITV's reporting has strengthened that view and made it clear in some of the heartbreaking cases that you identified, that best practise was not always being followed."

Last month, ITV News spoke to 50 families who said they have had their contact restricted with relatives with learning disabilities. Now, more than 200 families have come forward.

Lawyers and disability charities told us they are seeing the use of so-called “contact restrictions” increasing, as more councils struggle to find alternative care for people with learning disabilities whose families complain, and so side with care providers to avoid care places being withdrawn.

Families are also unable to speak out publicly about the restrictions due to court orders preventing their vulnerable relatives from being identified. Those not subject to court-approved rules say they fear “punishment” by care providers if they do.

“It's unacceptable, if there are visiting rights being limited without a very clear and an exceptional basis against a very high bar, we will crack down on that. The Care Quality Commission really has this very clearly on their priority list to ensure that they're going into those care homes and enforcing the regulations.

“Regulation 9A is very clear that these rights are there and that needs to be enforced. I think there's been clearly a failure to protect these visiting rights in a relatively small but not at all negligible number of care homes, hospices and hospitals. And that is what we need to crack down on.

“We are putting out guidance, very clear signals to the system to ensure that they're clear of what does constitute exceptional reasons for not allowing those visiting rights. And it's that clarity that I think the system needs."

If you or anyone you know has been impacted by this story, you can contact us at investigations@itv.com

Kinnock also told ITV News the government is considering changing the law to strengthen visiting rights and stop care companies from imposing bans.

“We're exploring the possibility of a change to the legislation,” he told ITV News.

“We haven't come to a conclusion on that yet because you always have to be a little bit careful with legislation so that you don't have unintended consequences. This new set of guidance is a really important stepping stone on the journey to ensuring that there is consistency right across the country in every single care home, hospital and hospice.”

Rita came forward to ITV News after contact with her son was dramatically restricted following multiple complaints she raised about his safety at a private care home funded by the local council.

Her adult son has severe learning disabilities and is under the Court of Protection, which means he does not have the mental capacity to make decisions about his own welfare. It also means we cannot identify him or his mum, whose name we have changed.

Rita raised her son at home for his entire childhood, with some help from carers. When he turned 18, the local council decided he would be better off being cared for in supported living with full-time carers, against his mum’s wishes.

The moment he arrived at the home run by a private care company, Rita raised basic safety issues. The more concerns she raised, the more restrictions were introduced, approved by the Court of Protection.

“They just put more and more restrictions on me visiting. They just tightly kept to this three times a week for an hour. Even down to the minute. At 59 minutes, they’d be telling me, 'your time is up, you’ve got to go.' That was regardless of whether my son was clearly enjoying my presence there," she said.

"It was cruel.”

Then Rita says she began to see signs of clear neglect.

“My son was appearing with visible injuries. He had lost a lot of weight. He was very malnourished, undernourished. He was self-harming daily.”

Despite raising complaints over several months, it was only when a social worker raised concerns about Rita’s son’s welfare that he was moved out of the care home and placed elsewhere.

Jacqui Shurlock, CEO of the Challenging Behaviour Foundation, told ITV News that though any change is welcome, there are still major systemic issues that need to be addressed:

Reacting to news that the government will strengthen visiting rights and involve families more in care decisions, Rita said the changes are “overdue”.

“This is potentially a life or death change for many people. We desperately need it, and all our vulnerable people need it. They need to have family visiting them. Family who are seeing what's going on. Family that are empowered to ensure that they have safe care.

“We should never be excluded as a punishment for criticising or complaining, this is just completely overriding human rights.

“My son was neglected, as well as being in danger. As well as getting increasingly distressed, he also got thinner and thinner and thinner, and self-harming.

“And they just kept me shut out and cut me off from him.”

When asked by ITV News whether the government would be looking at reforms to the Court of Protection to stop families being legally blocked from seeing their loved ones, the care minister said courts should always be an "absolute last resort".

"Prevention is better than cure. What we want to be doing is getting that upstream intervention so that everybody's clear from the word go what their rights are," Kinnock said.

"What I sincerely hope is that it'll never need to get to a court anymore because everybody's going to be clear from the outset what their rights are. I feel that if it's got to the level of getting to the court, then the system is failing. So we need to make sure that doesn't happen."

The charity Challenging Behaviour Foundation, which campaigns for people with learning disabilities, welcomed the government’s ambitions, but argues ministers must go further.

“Strengthened visiting rights and the recognition that cultural change is needed are a start, but we are seriously concerned that the changes proposed will not go far enough as they fail to address the underlying systemic issues that ITV highlighted in their investigation,” said Chief Executive Jacqui Shurlock.

“Local authorities and the Court of Protection are under pressure to maintain existing adult social care placements because there are not enough alternative community options. What we need is for the Government to publish their promised roadmap, setting out how they will ensure that high quality community support is developed, so that local authorities and the Court have more options to consider.

"At present, the focus is on stopping providers from withdrawing support rather than the right of a person to have a family life, due to a dearth of placements.”

Jon Sparkes OBE, chief executive of learning disability charity Mencap, said: “Strengthening visiting rights is a welcome step, and it’s appalling the Government must mandate the fundamental right for family members to see each other.

“This issue was highlighted during the pandemic. As we look to the Covid Inquiry’s Module 3 report on Thursday, we expect a clear acknowledgement of these and many other failings towards people with a learning disability. No one should ever again be isolated from the people they love."

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