SVL0018

Written Evidence submitted by Royal Mencap Society

About Royal Mencap Society and learning disability

1. We support the 1.5 million people with a learning disability in the UK and their families. We fight to change laws and improve health and care services as well as access to education and employment.

2. A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects intellectual and social development.

Introduction

3. Mencap welcomes the Committee’s inquiry as due to the higher prevalence of underlying health conditions, and other characteristics, many people with a learning disability fall under the Extremely Clinically Vulnerable Group or the Clinically Vulnerable list.

The addition of people with Downs syndrome to the Clinically Extremely Vulnerable list

4. In late Autumn 2020, around the time of the second national lockdown in England, it was announced that people with Down’s Syndrome had been added to the Clinically Extremely Vulnerable list following data which showed they had been disproportionately affected during the first wave of the pandemic.

5. Various third sector organisations, including Mencap, were invited to engage with the Department for Health and Social Care in the weeks prior to the announcement to ensure that accessible messaging could be targeted successfully at people with Down’s syndrome and their families.

6. The decision was taken to inform GPs and primary care teams of the addition to the list, provide easy read letters and leaflets to GPs, and give them responsibility for contacting their own patients with Down’s syndrome to inform them of the change.

7. However, it became apparent later that this method of communication was ineffective, with many GPs being unaware of the responsibility that had been placed on them or struggling to find the easy read resources. Therefore, the decision was taken to use the national system to contact people, directing them to contact their GP surgery. Due to the delay this meant some people did not receive a letter informing them they were advised to shield until early January, putting many at risk.

Access to social care

8. We are deeply concerned about the impact that measures taken to combat COVID-19 have had on access to social care for people with a learning disability.

9. On a national level, the Government implemented easements to the Care Act as part of the Coronavirus Act. These easements dramatically reduces the hard fought for gains made in the Care Act 2014. To date only 8 local authorities have officially used the easements, with none currently doing so.

10. But to understand the experiences of family carers of people with a learning disability during the first lockdown of the pandemic we carried out a survey. From the 1,069 respondents:
1. 7 in 10 (69%) people with a learning disability had their social care cut or reduced
2. 4 in 5 (79%) family carers have been forced to take on more unpaid care for their family member
3. Over two thirds (67.4%) of family members and carers say their loved one’s support needs had increased during the Covid-19 pandemic
4. 72% of families fear more cuts to social care happening in future[1].

11. And in November 2020, we carried out a further survey to evaluate people’s experience of social care during this lockdown and whether any changes had occurred between the two national lockdowns. From the 410 respondents:
1. Nearly 9 in 10 people with a learning disability has not had all their social care support reinstated.
2. Almost 3 in 4 of respondents are worried that there more cuts to care packages to come.
3. Almost 2 in 3 of family members and carers said their loved one’s support needs had increased.
4. Over 7 in 10 family members and carers said the amount of care and support they provided had increased.
5. Almost 1 in 2 of family members and carers said the amount of social care support their loved one receives from the local authority has decreased a lot (meaning they receive half or less than half the hours they received before the COVID-19 pandemic).

12. The results of our surveys outline a picture where social care support throughout the pandemic has been reduced or cut rather than stepped-up to help support some of the most vulnerable people in our society.

13. The COVID-19 pandemic has demonstrated to the general public what those in the social care sector already knew; that the social care workforce is highly skilled and dedicated to delivering the best care and support for care recipients. However, factors such as a lack of recognition and por pay have seen the emergence of approximately 110,000 vacancies in adult social care with 8% of roles vacant at any given time[2]. Even a national recruitment campaign has been unable to adequately address this issue. The social care workforce has therefore faced an uphill task in meeting the needs of care recipients which, in turn, has had an inevitable impact on the support that has been able to be provided to individuals.

14. Before the pandemic, underfunding was at crisis levels with local authorities projected to face a £180m gap in their social care budget for people with a learning disability in 2019/20[3]. Demand is also increasing with the Association of Directors of Adult Social Services (ADASS) revealing that for learning disability, only 86% of demographic pressures are currently funded[4]. The scale of this underfunding was revealed by the Economic Affairs Committee call for an £8bn injection to simply return access and quality to 2009/10 levels[5].

15. We have also seen the sector’s finances further stretched by the COVID-19 pandemic with the Local Government Association (LGA) estimating that adult social care services face additional costs of over £6.6bn in tackling the pandemic.

16. We welcome the additional funding that has been provided to the sector, in the lead up to and during the pandemic, however this has not been sufficient to address need. To put this in context;
1. The £1bn in additional funding in September 2019’s budget has been utilised in meeting the increase in the National Living Wage. While a welcome boost for care workers it was not enough to make a real difference in increasing care provision.
2. The £3.2bn provided by the Government to local authorities to help them cope with the COVID-19 pandemic[6], which includes social care, has had a mixed impact on social care provision. The initial £600m for ‘infection control’, and it’s recent increase by £546m[7], is another welcome pot of money but as the LGA states it is likely that PPE costs alone could total £4.179bn during the pandemic.[8]The extension of the Infection Control Fund also does not provide support to day service centres.

17. The report from Social Care Sector COVID-19 Support Taskforce, of which we were involved with, outlines a series of useful recommendations[9] for which adequate funding must be provided. This includes:
1. Consideration of funding to cover the costs of PPE included by the social care sector during this financial year. (Recommendation 2)
2. Commit to provide funding to meet the outcomes of the short-term workforce planning group. (Recommendation 14)
3. Commit to provide the resources required to meet the outcome of the project to open day centre provision across the country. (Recommendation 45)

18. Last year’s one-year Spending Review was an opportunity to provide the social care sector with much needed funding to stabilise the sector and reverse the cuts to provision that many reported in our social care surveys. However, the additional £1bn provided[10] was not enough to achieve these goals.

19. The Government must provide an urgent injection of £3.2bn to enable the sector to provide support to those that need it and reinstate care to those who have seen their package reduced or removed.

Access to everyday healthcare

20. While COVID-19 is rightly consuming the attention of the NHS, people’s everyday health needs still need to be met. It is well understood that in ‘normal’ circumstances, both children and adults with a learning disability and/or autism are at serious risk of missing out on the healthcare they need, due to several factors, including diagnostic overshadowing, delays to diagnosis and treatment, failure to make reasonable adjustments and failure to comply with the Mental Capacity Act. Pre COVID, people with a learning disability were 4 times more likely to die from causes considered treatable with good quality healthcare than the general population. In this new landscape people with a learning disability needing access health care can be at even greater risk.

21. People with learning disabilities may not be able to communicate verbally, and/or may have difficulty expressing pain or discomfort. They also struggle to navigate healthcare systems, including services such as 111 and remote consultations which rely on an individual’s ability to accurately communicate symptoms. The LeDeR report into deaths of people with a learning disability during coronavirus drew particular attention to difficulties using 111. The Government must ensure people with a learning disability are able to access care and ensure that healthcare services are able to make reasonable adjustments to their processes and procedures to avoid discrimination.

22. For many people with a learning disability or autism, having someone who knows them well with them in hospital can be a vital reasonable adjustment. Earlier guidance from NHS England made some welcome steps allowing an exception for people with ‘mental health conditions’ including learning disability and/or autism’ to have visitors[11]. However, following an update, the current guidance has removed this, leaving no specific reference to reasonable adjustments for people with a learning disability, now leaving decision on visitation with the Trust Incident Management team[12].

23. Conversely, services must not rely on an individual being able to be accompanied. In some circumstances family members will not be able, nor willing to attend, and due to impacts of coronavirus on staffing levels, and infection risks, there are likely to be circumstances where supporters are unable to accompany a patient.

24. Services must utilise aids such as hospital passports and ensure they have relevant contact details. Healthcare staff must be able to access support to meet the needs of a patient that go beyond their ability, for example by seeking the support of Learning Disability Nurses.

25. People with a learning disability, and their families and supporters, must be reassured that they will not be discriminated against due to a disability. Without reassurance, people with a learning disability, their families and supporters might discourage people with a learning disability from attempting to access health services for fear that their needs will not be met, or that they may not receive treatment.

26. Many people with a learning disability have long term health conditions, such as epilepsy or diabetes, and/or require extra support to remain healthy. There is a growing body of anecdotal evidence which suggests that many people with a learning disability are struggling to access the support and healthcare they need, in a timely manner, resulting in later presentation and more severe deterioration of symptoms. It is vital that with so much focus on COVID-19, individuals still receive the support they need from their supporters, community healthcare professionals and general practice.

Access to vaccines

27. We welcome the speed with which the Government has rolled the COVID-19 vaccine programme. However, we remain concerned that many people with a learning disability are not prioritised for a vaccination given the range of evidence we now have on the health impact COVID-19 has had on this group.

28. As mentioned above, a significant number of people with a learning disability will fall under either category 4 of the vaccination priority, such as people with Down’s Syndrome, or category 6, such as people with a severe or profound learning disability, or those with diabetes, epilepsy or cerebral which disproportionately impact people with a learning disability.

29. However, we estimate that around 100,000-200,000 people with a learning disability do not fall into one of these categories and therefore face waiting up to months for a vaccine.

30. This situation stands in stark contrast to the data that has emerged during the past months. We now know that people with a learning disability were up to 6.3 times more likely to die from coronavirus during the first wave, that the death rate for people aged 18-34 with learning disabilities was 30 times higher than the same age group in the general population, and that those with mild and moderate learning disabilities made up 65% of deaths reported to the Learning Disability Mortality Review.

31. These figures combined with the fact that the life expectancy for people with a learning disability is 28 years shorter for women and 22 years for men[13], highlight the need for all people with a learning disability to be added to category 6 of the vaccine rollout if not already in a higher group.

32. Given this Mencap all people with a learning disability must be placed in the 6th category for vaccination if they are not already in a higher category.

Access to Food

33. During the first months of the pandemic some people with a learning disability reported having difficulty in accessing food. Those on the shielding list had to navigate a new and sometimes confusing system at a time of extreme stress making accessing support for food deliveries difficult. We also called for added flexibilities so that those people with a learning disability who did not meet the eligibility for inclusion on the list, yet required support, could access help.

34. Mencap supports the finding of the Fourth Women and Equalities Select Committee’s report[14] and along with a number of other charities have called on the Government to make urgent progress on the Committee’s recommendation to “publish its assessment of disabled people’s needs for support accessing food, including provision of free food box deliveries”[15]

Exercise during lockdown

35. Some people with a learning disability and/ or autism require can require leaving their home multiple times a day to help manage anxiety, stress and or/ behaviour that challenges. However, initial Government guidance introduced on 23 March 2020 stipulated that everyone could only exercise outside their house once per day. This saw people challenged by the police and the public leading to embarrassment and difficult decisions.

36. Following pre-action correspondence by 39 Essex Chambers, the Government changed the guidance allowing people with a specific health condition, including learning disability and autism, to leave their homes multiple times a day and travel outside their local area to exercise in a location that meets their needs.

37. While we welcomed the change in guidance, these exceptions should have been built in from the start rather than requiring families to take legal action. But we are pleased to say that guidance during subsequent lockdowns have provided this exception.

Increased isolation

38. People with a learning disability are seven times more likely to be socially isolated pre-pandemic and our survey found that just 30% of young people with a learning disability spend more than one hour outside of their home on a Saturday (before the current crisis)[16].

39. Like everyone else, people with a learning disability have seen their daily routines and support networks completely altered as places of activity and leisure shut and face to face contact is not possible.

40. This is having a disproportionate effect on people with a learning disability who might not understand what is happening, can find it hard to adapt to sudden change and are less likely to have access to technology to keep in touch with loved ones and friends.

41. Day services provide a vital opportunity to people to gain independence and, as is the case with respite provision, to afford family carers a break from their caring responsibilities. Many have struggled to open and/or run at previous capacity due to social distancing rules and the additional demands to widen the service offer to, for example, more online support. While some local authorities were able to fund these services at their usual rate during lockdown, we have had reports that this funding is now no longer available. Some local authorities are also telling day services that they can only provide funding for face-to-face hours or, even worse, not fund them at all. This leaves many day services on the brink of collapse but, furthermore, reduces access to day opportunities for those who most need them.

42. We are stepping up our efforts through working with external organisations and launching new initiatives such as Mencap TV, to provide people with activities and entertainment.

Financial pressures

43. Many disabled people have also faced additional financial pressures during the pandemic. To better understand this and as part of their campaign for the £20 per week uplift provided to Universal Credit (UC) to be provided to legacy benefits, the Disability Benefits Consortium (DBC), of we are a member, carried out two surveys, the first in April 2020 and the second in January of this year.

44. Of the 224 respondents to the first survey:
1. 95% said their costs had increased as a result of the pandemic.
2. 92% specifically emphasised the additional costs of food.
3. 28% specifically emphasised the additional costs of utilities.
4. 28% specifically emphasised additional costs related to managing their health or disability during the Covid-19 emergency.
5. 10% emphasised additional costs related to travel or transport[17].

45. Of the 1383 respondents to the second survey:
1. 82% of disabled claimants have had to spend more money than they normally would during the pandemic.
2. This is most commonly due to greater food shopping and utility bills, as over half (54% and 53%) of disabled claimants said these costs had increased significantly
3. As a result of these increased costs, two thirds (67%) of disabled claimants have had to go without essential items at some point during the pandemic
4. 44% of disabled claimants are reporting being unable to meet financial commitments such as rent and household bills[18].

46. The Government must continue to support disabled people financially by maintaining the £20 per week uplift to UC and immediately introducing a £20 per week uplift to legacy benefits.

February 2021