Covid-19: Effect on People with Learning Disabilities

Rushanara Ali Excerpts

Tuesday 15th December 2020 Westminster Hall

[Rushanara Ali (Bethnal Green and Bow) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Ghani, and I congratulate my hon. Friend the Member for City of Chester (Christian Matheson) on securing this important debate. I want to start by extending my gratitude to all those working with people with disabilities, particularly in the education system and wider social care system, during these incredibly difficult times.

We know from our family members about the challenges that children are facing with their learning. Of course, those challenges are even greater for children with special educational needs and disabilities. Like colleagues, I have seen that in my constituency. The transition from face-to-face learning during the first lockdown to using technology has presented some challenges, particularly for young people who have learning disabilities. Of course, adults who need social care and support face huge challenges, as we have already seen. Along with other agencies, local authorities have been on the frontline in trying to protect them, but they have been doing so in the context of a decade of austerity.

In my borough, we have seen a £200 million funding reduction over a decade. That kind of austerity in public service provision does not come without consequences: it has a knock-on effect. When we faced the pandemic, we saw local services that were on the edge in any case having to support those who really need support. The reality is that we have seen the virus have a bigger impact on those who are particularly vulnerable. As we have already heard, this group faces huge vulnerabilities.

According to Government figures released in October, almost a fifth of pupils with special educational needs are currently absent from school. To compound that, only 6.5% of parents of children with SEND said that their online home learning platforms were accessible, according to the National Education Union. The evidence is clear that the education system is not able to cope effectively in responding to the needs of young people with disabilities. It is well documented in recent reports on differential impacts that there is a higher prevalence of deaths among black and Asian minority ethnic groups. Also, according to Public Health England, people with learning disabilities were up to six times more likely to die from covid-19 during the first wave of the pandemic. That is shocking, and it requires action by the Government to make sure that we learn the lessons, just as we need to learn the lessons on the differential impact in terms of death rates among black and Asian minority ethnic groups. Of course, it is important to understand these intersectional issues and the interactions relating to those in minority groups who also have a disability.

We face more restrictions in the coming weeks in London and the south-east and are now in tier 3, so when the Minister responds, will she explain what actions the Government are taking to protect this vulnerable group—particularly those with disabilities—to ensure they are getting the support they need? Since 2010 we have seen reductions, as I said, in local government funding and, despite the Government’s commitment to give the resources that local authorities need, the reality during the pandemic is that the extra burden and costs of covid in boroughs such as mine have not been fully met. That is having a knock-on effect on services, including services to those who need adult social care and young people with disabilities in need of additional support.

As for schools, a number have already said to me that the additional cost of making sure they are covid-secure has been between £50,000 and £100,000, depending on the school and its population size. It is important that the Department of Health and Social Care works closely with education to make sure that the institutions on the frontline protecting those who are vulnerable and those with learning disabilities get the support they need, and take action to prevent further loss of life.

On the funding shortfall, my local authority still has a £30 million shortage just because of the cost of covid. When the Minister responds, will she update us on what she is doing with other Departments to make sure that local authorities and other providers, including frontline care providers and education providers, are getting the support they need, particularly during the coming months, until we get a proper implementation plan for the vaccine, especially for the most vulnerable, as are many in that group?

I want to highlight some of the challenges facing my constituency. Some 60% of children live in poverty, and unfortunately we have one of the highest rates of children with autism in the country, not to mention severe overcrowding. That is why my constituency faced the fourth highest age-standardised death rate in the country, despite having a relatively young population.

These systemic challenges and the plight of those with disabilities mean that the situation is serious, which is why it is really important that the Government look carefully at the evidence and data, and respond with resources and support based on need, rather than other considerations. That is how we will be able to protect the vulnerable in our communities. My plea to the Minister is to provide the support that local authorities and other providers urgently need. If she can, I will be grateful if she can update us on what steps her Department in particular is taking to address the differential death rates for those with learning disabilities, as the Public Health England report highlights.

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[The Minister for Care (Helen Whately)]

It is a pleasure to serve under your chairmanship, Ms Ghani. I thank the hon. Member for City of Chester (Christian Matheson) for securing a debate on this very important topic.

The pandemic has impacted everybody, but many of those with learning disabilities have been particularly hard hit. I know how difficult it has been for them, their carers and loved ones to continue to be supported to live fulfilling lives during the pandemic. Wherever possible, we have made exemptions and reasonable adjustments to the restrictions for disabled people, while balancing that with the need to keep people safe. Sadly, we know that some of those with a learning disability have suffered the worst effects of covid-19 and passed away. I send my deepest condolences to their families and friends.

The hon. Member for Bethnal Green and Bow (Rushanara Ali) asked me to talk about what we are doing about the high mortality from covid of those with learning disabilities. We commissioned Public Health England to analyse the information about deaths for people with learning disabilities in order to understand the impact of covid-19 and ensure that we could take every possible step to protect people. As hon. Members have said, its report estimated that, in the first wave, people with learning disabilities had a mortality rate from covid-19 that was between 4.1 and 6.3 times higher than the general population. We know that some of the difference is associated with having other health conditions such as Down’s syndrome and with place of residence.

The University of Bristol recently published a LeDeR—Learning Disabilities Mortality Review—report setting out findings from reviews of deaths from covid-19 of people with learning disabilities, which adds to our understanding. The findings of those reports are very concerning. I want to reassure hon. Members that we did not wait for the publication of those reports to take action. Rather, we have worked continuously to protect people throughout the pandemic, and I will briefly set out some of the actions we have taken.

From the adult social care action plan back in April to the adult social care winter plan published in November, we have worked to ensure that people who need care, including those with learning disabilities, are protected as much as possible from the worst outcomes of covid-19. That has included introducing the infection control fund, now totalling £1.1 billion, to ensure that care settings, including day services, are covid-secure. We are providing free PPE for adult social care providers until March 2021. That includes domiciliary care and personal assistance, as well as residential care homes. As testing capacity has increased, we have extended asymptomatic testing not only across care homes but to domiciliary care staff. Following the roll-out of the single round of national testing to the most high-risk extra care and supported living settings, we have launched regular retesting for those settings.

The hon. Member for City of Chester spoke about DNACPRs and the concern about their inappropriate recording in patient records. When I heard about that, I too was very concerned and shocked. The blanket application of DNACPRs to any group of people is completely unacceptable, and I want that message to be said as many times as it needs to be to ensure that that practice does not continue. When we heard that it was happening, a series of communications went out from the Department, the Secretary of State and NHS England to say that there needed to be an immediate stop to that practice. As has been said, the Care Quality Commission is looking into that. The 2021 general medical services quality and outcome framework was updated in September, and it requires GPs to review all DNACPR decisions for people with learning disabilities to make sure they are appropriate.

The hon. Gentleman also spoke about the need for training to ensure healthcare staff have the skill and understanding they need to care for people with learning disabilities. I completely agree with that, which is why I am working with Health Education England and Skills for Care to develop the Oliver McGowan mandatory training to ensure that all staff have the skills and understanding they need.

Several Members asked about remote consultations. The NHS medical director of primary care wrote to GPs in September, asking them to continue to ensure that patients who need to can access face-to-face care.

I am sure that, like me, hon. Members welcomed the incredible news that a vaccine against covid has been approved. They will know that the Joint Committee on Vaccination and Immunisation, the independent body responsible for identifying priority groups for vaccinations, has published its advice on prioritisation. In advance of that process, we shared with the JCVI the latest evidence on people with learning disabilities and covid—including the Public Health England work that I referred to—to inform their approach and ensure that those with learning disabilities would be considered alongside older people, for instance, for whom the risks are very well known. The JCVI’s advice, published in December, stated that people on the clinically extremely vulnerable list, including those with Down’s syndrome, should be in priority group four for vaccination, and that people with a severe or profound learning disability should be in priority group six.

[Rushanara Ali]

Could the Minister tell us now or in writing about how the actions she is taking to reduce the disproportionate impact of death rates for those with learning disabilities is being addressed with facts, so that we can see the progress that the actions of her Department have led to, given the number of deaths in the second wave? It is not clear whether those interventions are working, and it would be reassuring to see how those actions are helping.

[Helen Whately]

We will continue to scrutinise all possible evidence and data we can get to understand the impact of the steps we are taking. For instance, as I have set out, we have supported residential care settings and other carers to ensure that they have the PPE and infection control support they need. Sadly, we still see that care homes are experiencing outbreaks of covid. It is incredibly hard to stop the disease getting into these places when it is prevalent in the community. We know that the most important thing we can all do to keep those who are most vulnerable to covid safe is to take steps to reduce the spread of covid in the wider community. I assure the hon. Member that we are continually looking at the evidence and at what more is possible to do to keep people safe.

In fact—I was coming to this exact point—I have asked the Scientific Advisory Group for Emergencies care working group to consider the findings in the Public Health England and LeDeR reports to help us develop further targeted actions. The Department has commissioned research to better understand the impact of the pandemic on the wellbeing and lives of people with a learning disability. That is being led by the University of Warwick and Manchester Metropolitan University. The insights from this research will help us to further mitigate and reduce harm from covid-19, including tackling isolation and loneliness. We will keep the evidence under review.

I come now more broadly to restrictions, which I know have been particularly hard for people with learning disabilities. In particular, visiting loved ones for those who are in residential care settings has been incredibly difficult for families, friends and the individual themselves. On 1 December, we published updated guidance on visiting care homes. We advised care homes to use the rapid tests that we are providing, together with PPE and other infection control measures, to enable safer visiting. There is also guidance on visiting in-patient healthcare settings. That was updated in October, and NHS England and NHS Improvement wrote to mental health learning disability and autism in-patient providers to remind them that they must take all possible steps to enable safe regular visits.

The hon. Member for Warrington North (Charlotte Nichols) asked about the visiting out guidance for those of working age. An enormous amount of care was taken over that to try and establish the right balance to enable people to go and see their family if that is what they normally do while they live in a residential care setting, while recognising that they may well be in a setting where others in that care home, for instance, may be extremely clinically vulnerable to covid. As I have said, we know that once covid gets into a residential setting, it is really hard to stop it spreading. That is why the clinical advice is very strong on saying that those returning to a care setting after a visit out should quarantine for 14 days. I am really aware that that is a very difficult thing to ask people to do, but the reason it is in there is because that setting may well have people who are clinically extremely vulnerable, and there is such a risk. It is not just about the one individual visiting out; we must bear in mind the risk to the whole group of residents. That is why the guidance is as it is.

Before I conclude my remarks, I will talk about the restrictions on the day-to-day activities, which all of us have been complying with. We have made exceptions and reasonable adjustments wherever possible, for example by excluding support groups such as day services from the rule of six, setting out clear exemptions to mandatory face coverings, including where a person cannot wear one due to a disability, and working to ensure that that is communicated. There has been some debate about this and whether the ban should be much more strongly enforced, but I have personally worked really hard to communicate the importance of there being exemptions.

We have also, wherever possible, produced guidance in accessible formats, such as easy-read. We continue to work with stakeholder groups and organisations such as Mencap, which has rightly been mentioned during the debate, to ensure that we get input on the potential implications of restrictions on people with a learning disability, and how we can best mitigate those implications.

To conclude, I thank all hon. Members for their contributions on this important topic. We are all deeply committed to helping protect people with a learning disability from the worst effects of covid-19, and I hope that what I have set out today does assure Members that the Government are working tirelessly to make that happen.