Tag: covid19

Coronavirus (COVID-19): providing unpaid care to adults with learning disabilities and autistic adults

Posted on by Neil Armstrong

The government has released guidance for people who are providing unpaid care to adults with learning disabilities and autistic adults during the coronavirus (COVID-19) outbreak, it has also been updated to include information on the self-isolation changes that came into effect on 16 August:

Who this guidance is for

This guidance is for those who provide unpaid care, such as friends or family, to adults with learning disabilities and autistic adults.

This guidance aims to help those with caring responsibilities keep people with learning disabilities and autistic people safe, to support them to understand the changes they need to make during the COVID-19 outbreak, and to protect their own wellbeing.

COVID-19 will have an impact on everyone’s lives and may result in increased stress and anxiety for both carers and the people they look after, as routines and care provisions change. This may be heightened for people with learning disabilities and autistic people and it is important to continue to consider their unique needs and preferences. All care and support should continue to be given in the least restrictive way possible and continue to maximise independence wherever possible.

This guidance builds on the guidance for those who provide unpaid care to friends or family and more detailed guidance published by the Social Care Institute for Excellence with resources to support those who care for people with learning disabilities and autistic people.

The advice and resources may also be helpful for those supporting people with other needs relating to cognitive impairment, such as dementia or mental health conditions.

There is additional advice for people who are clinically extremely vulnerable to coronavirus and households with a possible or confirmed coronavirus infection.

Protecting yourself and the person you care for

Most COVID-19 restrictions have been lifted as part of the government’s roadmap to ease restrictions in England.

The moving to step 4 of the roadmap guidance says this does not mark the end of the need for caution and restraint. It states that everybody needs to continue to act carefully and remain cautious.

If you’re fully vaccinated or under 18 and 6 months you’re not required to self-isolate if you’ve had close contact with someone with COVID-19.

Find out whether you need to self-isolate and how you can protect others if:

  • you live with someone who has or might have COVID-19
  • you’ve been in contact with someone who has or might have COVID-19 but you do not live with them

If you get any COVID-19 symptoms, self-isolate immediately and get a PCR test.

Find out more about what to do if you have COVID-19

Maintaining good hygiene practices

There are still cases of COVID-19 in England and there is a risk you could catch or pass on the virus, even if you are fully vaccinated. You are encouraged to exercise caution and consider the risks.

Cleaning your hands frequently throughout the day by washing with soap and water for at least 20 seconds or using hand sanitiser is one of the most effective ways of reducing the risk of infection for you and other people. This includes when you arrive at the home of the person you care for, if you do not live with them, or have been out.

The how to stay safe and help prevent the spread guidance provides information on washing your hands, cleaning and disposing of waste, and cleaning laundry, as well as other information for those living with a vulnerable person. You might also want refer to the guidance on hygiene on the NHS website.

Planning in case of an emergency

As set out in the guidance for those who provide unpaid care to friends or family, we advise all carers to create an emergency plan with the person they care for, to use in circumstances where other people may need to help deliver care. Depending on the circumstances, this could be help from family or friends, or a care provider.

In order to create an emergency plan that fits the needs of the person you care for, you will need to set out:

  • the name and address and any other contact details of the person you look after
  • who you and the person you look after would like to be contacted in an emergency
  • details of any medication the person you look after is taking
  • details of any ongoing treatment they need
  • details of any medical appointments they need to keep
  • details of their preferences and usual routine

You should also ensure that it is in a format that can readily be shared with other people who will need to discuss the plan with the person you care for.

For more support on contingency planning, see Carers UK guidance on practical support and planning in an emergency, including information about local carer organisations. You can also find information about local services on the Carers Trust website.

Collecting prescriptions if you are self-isolating

If you normally collect prescriptions for the person you care for, you will not be able to do this if you are self-isolating. Most pharmacies provide a home delivery service. Telephone them to see if this is available or if there is another scheme running locally to help you access prescriptions.

Pharmacy delivery services will be under pressure at the moment, so it is important that you order your repeat prescriptions in good time, to avoid delays in dispensing. Information on repeat prescriptions and delivery services may also be available via your GP practice website.

If the person you care for is concerned about their usual paid carer coming in and out of their home

The government has issued guidance on home care provision to ensure that appropriate levels of hygiene are achieved to reduce the risk of infection. If unsure, speak to the care provider about the processes they are following to maintain good hygiene.

If the person you care for receives regular health or social care from an organisation, either through your local authority or paid for by themselves, inform their care provider that they are reducing social contacts and agree on a plan for continuing their care, identifying essential care tasks that should continue.

If the person you care for is in a care home

If you have no symptoms, you should keep in contact with the care home to understand any local arrangement to keep in touch with residents. You should follow the latest advice on precautions to take as set out in the guidance on staying safe and helping prevent the spread of COVID-19.

Caring for someone who is clinically extremely vulnerable

Some people with learning disabilities or autistic people may have a specific health condition and may be clinically defined as extremely vulnerable.

Clinically extremely vulnerable people are advised to follow the same guidelines as everyone else. However, if caring for someone who is at higher risk of becoming seriously ill if they were to catch COVID-19, you may wish to think particularly carefully about precautions you can continue to take. These precautions are included in the guidance on staying safe and helping prevent the spread of COVID-19.

Further information on how to support someone who is clinically extremely vulnerable from COVID-19 can be found in the guidance on protecting people who are clinically extremely vulnerable from COVID-19.

If you are clinically extremely vulnerable

Clinically extremely vulnerable people are advised to follow the same guidance as everyone else. As someone who is at a higher risk of becoming seriously ill if you were to catch COVID-19, you may wish to think particularly carefully about precautions you can continue to take. These precautions are included in the guidance on staying safe and helping prevent the spread of COVID-19.

If you have symptoms of COVID-19

If you or someone in your household has symptoms of COVID-19, you should follow the stay at home guidance. The guidance provides detailed advice on when and how to self-isolate and information on cleaning and hygiene.

However, we appreciate that the advice above may not be easy to achieve where you provide close contact care for a spouse or relative such as washing and bathing. Where possible and needed, ask friends and family who can support you in providing care, or find out about local carer organisations at Carers UK or through your local authority.

If the person you care for has symptoms of COVID-19

If the person being cared for has symptoms or is part of a household that is isolating, you must follow the advice set out in the stay at home guidance and the guidance for those who provide unpaid care to friends or family.

If you do not live in the same home as the person you care for, you should provide information on who the person should call if they feel unwell, how to use the NHS 111 online coronavirus service and leave the number for NHS 111 prominently displayed.

Supporting the person through change

Communication

Changes in routines and care can be particularly stressful for people with learning disabilities and autistic people, and it is important that accessible information is provided to support them to understand the outbreak and the measures introduced. You may also need to consider how to manage behaviour that challenges, particularly if usual techniques are not appropriate or possible during the outbreak.

There are some steps you can take and guidance you can follow to support the person you care for through change:

It is important to use resources which are accessible and can best explain the outbreak and latest guidance to the person, such as:

Social distancing

Most legal restrictions to control COVID-19 were lifted at step 4 on 19 July 2021. This includes the restriction to stay 2 metres apart from people you do not live with. For further guidance on social distancing please see the guidance on staying safe and helping prevent the spread of COVID-19. Find out what you can and cannot do in the guidance on staying safe and helping prevent the spread of COVID-19.

It is important that the person you care for understands why it is important to maintain a social distance, and what may happen if they do not.

However, if the person in your care has a specific health condition which requires them to leave their home to maintain good health – including if that involves reasonable specific travel beyond your local area – then they can do so. This could, for example, include where people with learning disabilities or autistic people require specific exercise in an open space 2 or 3 times each day – ideally in line with a care plan agreed with a medical professional.

Wherever possible, you should support the person to continue their usual activities outside, in line with the restrictions that apply at the time. If it is not possible to continue their usual activities outside, alternative arrangements should be considered. These may include accessing online services such as food delivery or online prescription orders.

You may be able to access help from COVID-19 Mutual Aid UK which provides voluntary support to those who are in need. You may want to approach your local authority, who are strategically supporting these groups, so you can access safe, appropriate support.

Coping with bereavement

It is possible that the person you care for may experience the death of someone they know during this period or may experience anxiety at deaths reported in the media. In this instance, it is important to have open and honest discussions about death and coping with the person you care for.

The links below provide accessible resources to support communicating death to people with learning disabilities and autistic people:

Maintaining your own health and wellbeing

It is important that you look after your own health and wellbeing as well as supporting others you care for, especially given the potential for additional stresses at the current time and the potential for reduced access to support such as respite care.

Tips include taking care of your mind as well as your body and getting support if you need it. Daily physical activity is important for many aspects of health and wellbeing, including managing stress, encouraging positive feelings, and promoting good sleep habits. The One You website has suggestions for exercises you can do at home.

Draw on support you might have through your friends, family and other networks during this time. Try to stay in touch with those around you over the phone, by post, or online. Let people know how you would like to stay in touch and build that into your routine.

Remember it is okay to share your concerns with others you trust and in doing so you may be able to provide support to them too. There are sources of support and information that can help, such as NHS recommended helplines, and the Every Mind Matters website.

It may also be helpful to contact your local carers support organisation who can help with contingency planning. You can find out about local carer organisations at Carers UK. There is also an online forum on Carers UK.

Accessing alternative care quickly if you are unable to provide care

Having to organize alternative care can be difficult and concerning. Where possible, you should contact friends and family who may be able to give immediate help in providing care. You should follow the latest guidelines to protect those coming into the home of the person who needs care.

If you cannot organize alternative care you can contact your local authority or health care provider.

If you do not know how to do this, you can contact NHS 111.

If you need time off work to care for a relative who has symptoms or is self-isolating

You should talk to your employer about your caring needs and what arrangements can be put in place. Information regarding Statutory Sick Pay entitlements can be found in the guidance for employees.

Some people may be entitled to benefits as a carer, such as Carer’s Allowance. You should check on GOV.UK for further details.

Originally published 31/8/21 at https://www.gov.uk/government/publications/covid-19-providing-unpaid-care-to-adults-with-learning-disabilities-and-autistic-adults/coronavirus-covid-19-providing-unpaid-care-to-adults-with-learning-disabilities-and-autistic-adults

Coronavirus: Control over support is helping keep disabled people safe, evidence suggests

Posted on by Neil Armstrong

Coronavirus: Control over support is helping keep disabled people safe, evidence suggests

Disabled people who use direct payments to pay for support in their own homes are using this control over their care to stay safer during the coronavirus pandemic than if they were in institutions, early evidence suggests.

Disability News Service (DNS) has spoken this week to six organisations – four of them user-led – that support disabled people who use direct payments to pay for their own personal assistants (PAs).

Taken together, they are in touch with thousands of disabled people on direct payments.

And their experience so far suggests that the use of direct payments, which gives disabled people control over their own support, has ensured that they and their PAs are mostly being able to take precautions to protect themselves from COVID-19 infection.

This early evidence – although the conclusions are only tentative and based on a small sample – contrasts with increasing concerns over the number of deaths in care homes across the UK due to COVID-19.

Despite this evidence, the organisations DNS has spoken to have stressed that employers of PAs are still facing significant difficulties in obtaining the personal protective equipment (PPE) they need to keep them and their PAs safe, and in securing testing for the virus when they, their PAs or their families show possible COVID-19 symptoms.

Dr Victoria Armstrong, chief executive of Disability North*, a user-led organisation based in Newcastle, said that those users of direct payments who were “confident employers” and have had the support of their social worker and organisations such as hers appeared to have coped well with the pandemic so far.

In general, she said, people receiving direct payments appeared to be staying safer than disabled and older people in care homes, because they have been more able to control their support and ensure their own safety.

But she stressed that there were PA employers in the area who had not been in touch with her organisation, and they could be struggling to cope with the pandemic.

And she said there were significant concerns over the provision of PPE.

The situation has been complicated by Newcastle City Council’s decision to go ahead with transferring the direct payments support service from Disability North to the controversial outsourcing company People Plus – which won the contract through a tendering process – tomorrow (Friday).

Because of the council’s failure to ensure people on direct payments were able to secure the PPE they needed promptly, Disability North set up – without any additional council funding – a system in which employers of PAs who needed PPE could collect supplies provided by the council from outside DN’s offices.

But the council has now turned down a proposal from Disability North to continue that service after tomorrow, when the local authority will organise deliveries of supplies of PPE itself.

Armstrong said the council’s organisation of PPE supplies for employers of PAs had been poor and, as a result, many disabled people felt like an “afterthought”.

She said she was concerned that some disabled people in the area might now find it difficult to secure the equipment they need to keep safe.

A Newcastle City Council spokesperson praised Disability North for its support of people on direct payments, and its support through the pandemic.

He said People Plus was “experienced at delivering high quality direct payment support services”.

And he said the council had been working with local partners to ensure PPE was available across Newcastle to those who need it, including care homes, front-line social workers and those using direct payments.

He said: “We are extremely grateful for the support that Disability North have provided with the distribution of this essential equipment and are now in a position to set up our own arrangements which will speed up the distribution process to vulnerable people.”

Geraldine Des Moulins, chief officer of the disabled people’s organisation Possability People, in Brighton, said: “We haven’t heard of any deaths [of people on direct payments], we haven’t heard anything like that at all.”

She said her biggest concern currently was about the long-term impact of the crisis on disabled people, including those on direct payments.

Any government moves to ease the lockdown are unlikely to change the day-to-day experiences of many disabled people who will still need to continue sheltering at home, she said.

“They are still going to be in lockdown. My main fear is mental health and general wellbeing.

“There is still a lot of fear out there about what next, what happens now.”

Her organisation is now thinking about how to help disabled people with their resilience and self-confidence in the longer-term, and ensure they remain both safe and engaged with the community.

She added: “This is going to affect disabled people for a long time yet. It is the long term that is the biggest worry currently.”

Possability People is among those organisations who pointed this week to the poor and confusing official information about PPE, such as gloves, masks and gowns, and the continuing difficulty of obtaining it.

Des Moulins said: “If you’re on direct payments, you’re more or less on your own to sort things out.”

Kimberly Myhill, senior development officer with the user-led organisation Equal Lives, which is based in Norwich, said it was a “new and rapidly changing situation” and it would be “some time before any robust research can ascertain the levels of safety”.

But she said Equal Lives knew of deaths in care homes in Suffolk linked to coronavirus, while she was not aware of any of its service-users on direct payments who had died because of the virus.

She said that most of the people on direct payments that Equal Lives supports in Suffolk were choosing to stay at home and isolate with their families, rather than continuing to use their PAs.

For safety reasons, many are using their funding to pay their relatives for their support, thanks to new flexibilities confirmed in last week’s long-awaited government guidance for those on direct payments.

But those who are still using PAs are having to cope with staff coming into their homes without PPE, she warned.

Myhill said that those receiving direct payments through the NHS “appear to have had a better level of support than those who deal with the local authority, maybe due to the NHS having more of an understanding of infection control”.

Tracey Jannaway, director of Independent Living Alternatives, the social enterprise founded by the independent living pioneer David Morris, said key issues included how early disabled people had gone into lockdown and how well they had been able to shield.

She said many PA-users “had begun shielding and isolating before the official lockdown date and have been able to minimise their teams of PAs in order to reduce risk if not eliminate it”.

But she said she was “wary of saying simply that residential care has it worse that people in the community” as there have been “examples of really good practice in the residential sector”.

She also said there had been much confusion, misinformation and changing information around the use of PPE, and “a lot of confusion over shielding and isolating”.

Mike Adams is chief executive of Purple, which supports about 4,500 disabled people on direct payments, who in turn employ just under 7,000 PAs, across local authorities in Essex, Oxfordshire, Cambridgeshire and Leicestershire, and nine clinical commissioning groups.

He said: “We certainly haven’t heard anecdotally of any cases where either service-users have passed away or [there has been] a spike in the numbers of people going into hospital.”

Asked if he thought disabled people on direct payments could be safer than those in care homes, he said: “I think there’s something to it.”

But he said the challenges faced by disabled people on direct payments had received scant attention from the media.

And Adams said there had been an initial fall of about 10 per cent in the number of hours of support people on direct payments were using, which was probably due to them deciding to self-isolate and PAs deciding to stop working because of the COVID-19 risk.

He said that the “detrimental impact” of this fall in support and of the isolation were a “hidden cost” of the pandemic that had yet to surface, although it was not clear whether some of the fall in support had been replaced by care from family members.

Although some disabled people and PAs have reported COVID-19 symptoms, he said, because of the difficulties in obtaining testing there was no way of knowing how many have been infected.

He said there was “clearly a need” for disabled people and their PAs to have access to testing, and to the PPE they need to stay safe.

John Evans*, a pioneer of the independent living movement and now facing the twin challenges of terminal cancer and adapting to the COVID-19 pandemic, said he had not heard any “worrying stories” from any of the many PA users he knows.

He has arranged shifts so there are fewer changeovers between his PAs, and he does not allow them to shop for him because supermarkets are “high risk” areas.

He has had help with shopping from an “amazing” local support group, after he was unable to book any supermarket delivery slots.

He said: “In terms of all the PA users I know, they are all managing in similar ways and as yet I have not heard any worrying stories. Let’s hope it continues.”

Evans, who lives in Hampshire, said that his continuing healthcare personal health budgets team had been “really helpful” in securing access to PPE, including providing a 10 per cent increase in funding to pay for masks, gloves and gowns.

He partly attributes this success to a co-production group that has been running for about 18 months, which includes him and three other users of direct payments, and has helped devise the team’s policies and protocols.

Gerry Zarb, from the user-led Spectrum Centre for Independent Living, in Southampton, said they also were “coping fairly well”, although receiving increasing numbers of calls from people on direct payments on issues such as food deliveries and their own mental distress, while some Spectrum staff had had to cope with their own PAs self-isolating.

He said Spectrum’s PA agency was still running, although its supplies of PPE were running low and it was becoming difficult to replenish them.

He said: “Fortunately we haven’t had much sickness yet but it’s always on your mind that this could happen at any time.”

*He has written a blog for the Social Care Institute of Excellence on how to support people with long-term health conditions who are self-isolating in their own homes

**Disabled people in the north of England, from the Tees Valley up to Northumberland and across to Cumbria, can call or email Disability North for advice through its new community care project  

***Possability People and Disability North are both DNS subscribers

****Links to sources of information and support during the coronavirus pandemic include the following:

Real

Inclusion London

Disability Rights UK

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

30 April 2020. News provided by John Pring at www.disabilitynewsservice.com