Support for parents and carers of people with developmental or behavioural disabilities like autism or learning disability.
At some time or another we have all felt confused, frightened and worried by the coronavirus and the way it has changed the way we live and work. For some of us these fears and anxieties come and go, for others they are there for all or almost all of the time.
For members of Usdaw these worries and fears are magnified as they are amongst the millions of key workers going into work every day to provide essential services to the public.
Most Usdaw members are going out to work whilst also looking after children and other family members. This may be particularly challenging where members have children and young people at home who have learning disabilities, autism or other developmental or behavioural disabilities.
This page is intended to offer support and information to members in this situation. Whilst many parents and carers have similar concerns at the moment, parents and carers of people with developmental and behavioural disabilities have told us that they have been affected by the coronavirus pandemic in the following specific ways:
- The child or adult they care for is experiencing high levels of anxiety due to the disruption to their usual daily routine
- The help, care and support services they usually receive has been cut back or temporarily stopped due to more people needing help or staff may be ill, shielding or self-isolating.
- The child or adult they are caring for is very anxious and worried about their own health and those of their family members and is struggling to understand what is happening.
- The child or adult they are caring for is not able to attend to school, or has had to attend a different school. They can no longer see their friends or family members who don’t live with them. This has increased their anxiety and led to increasingly challenging behaviour which they are finding difficult to manage.
A number of specialist and disabled people’s organisations have put together information for parents and carers of people with learning, developmental and behavioural disabilities. Some ‘tips’ on managing change, exercise, education and coping with challenging behaviour as well as links to more detailed information are outlined below.
If the child or the person you care for is distressed or upset by the change in their routine it may help to try to remember strategies that you’ve used in the past when changes were on the horizon such as preparing them for going away on holiday or when they’ve moved home or school. It can help to emphasise the things in their life that aren’t going to change or to be clear that the restrictions in place won’t last forever.
The National Autistic Society have put together ‘tips’ for parents
about ways to manage disruptive changes to their child’s routine. For more detailed advice on preparing for and managing change visit:
A selection of tips for parents from the National Autistic Society:
- Your child’s plan and routine has changed – make a new one. Build in points in the day for exercise, eating and fun activities.
- Information is coming in thick and fast. Think about what information you need to share with your child and give them time to process the information. Write down the information so that they can go back and re-read it when they need to.
- If your child is finding communicating difficult now, or more difficult than usual, agree with them how you will communicate – by test, in writing or at specific times of the day.
Exercise is important for us all but may be particularly important for children and adults with autism or other developmental disabilities. It can be calming and regular exercise improves both physical and mental health as well as promotes better sleep.
However at the moment everyone who is not a ‘keyworker’ is being instructed to stay at home and to only leave the house once a day for exercise.
Importantly however for children and adults with autism or learning disabilities for example, there is some greater flexibility. The Government has said that people are allowed to go out if there is a good psychological or medical reason. Government guidance
says that you can leave your home for medical need.
The guidance says “If you (or a person in your care) have a specific health condition that requires you to leave the home to maintain your health - including if that involves travel beyond your local area - then you can do so.”
It may be worth making sure you have some evidence of your child’s or the person you care for need for additional exercise or support – such as a care plan, or a note from a social worker or GP – with you so that you can point to it if challenged. Check with your local social work team, as many local authorities have developed forms with the police that can be used.
Education and school
The Government has announced the closure of schools across the country. However, many children with Education, Health and Care Plans and those who are vulnerable and have a social worker are still allowed to go to school. But we know that for many parents of disabled children this puts them in a dilemma. Should they continue to go into work and send their child to school or should they look after their child themselves at home instead? The decisions parents and carers make at this time regarding the care of their child or the adult they support should be respected and supported.
The NAS dedicate a page on their website to the issue of education and school closure. View their full guidance
but we’ve picked out below some of the key information they have posted.
- If you’re child has an Education, Health and Care (EHC) Plan
Their school or college should carry out a risk assessment to decide whether they need to continue to be offered a school or college place in order to meet their needs, or whether they can safely have their needs met at home. The school should talk to you and the council about this and will take lots of things into consideration. You can read more about those in Government’s own guidance
The result of this risk assessment will be either:
- your child can continue to go to school
- your child should stay at home
If your child can go to school, this does not mean you have to send them.
If your child doesn’t have an EHC Plan
The Government has asked parents to keep their children at home, wherever possible, and asked schools to remain open only for those children who absolutely need to attend. You can read the full guidance here
If my child is still going to school:
- Will they attend their usual education setting? Not always – if your child needs to go to school but their own school is closed, they will be given a place in another school.
- Will they still get all the support their EHC Plan says they should be getting? The new Coronavirus Act says that local authorities won’t need to meet all the requirements included in your child’s EHC Plan during this outbreak. However, it does say that schools and colleges should use ‘reasonable endeavours’ to make sure your child is supported. You should speak to your child’s school if you are concerned that their needs aren’t being met.
- If changes are made to my child’s EHC Plan, will this be permanent? No - any changes to the support outlined in the EHC Plan during this period will be taken as temporary changes only. However, we don’t know long any changes could be in place for. The Coronavirus Act, which makes changes to EHC Plans possible, will be reviewed in September 2020.
Displaying behaviour that challenges is distressing for the person and for anyone else close by. Parents and carers may experience an escalation in challenging behaviour at the moment which might be triggered by a disruption to their usual routine and being stuck at home together for most of the time.
The Challenging Behaviour Foundation has put together an information sheet
giving practical advice about how to cope with an increase in challenging behaviour.
It includes the following advice:
Consider the following if you see a change in the person’s behaviour:
- Provide choice where possible
- Praise and reward positive behaviour
- Keep language simple
- Use positive language
- Divert or distract
- Involve them in everyday activities
- Use body gestures/signs
- Give reminders of rules and routines
- Plan activities
- Withdraw from a situation if safe to do so
- Give what is wanted at the start to avoid escalation
- Although it’s very difficult try to remain calm
Try to keep a record of what happened before, during and after the incident. This will help you to work out why it may have happened and give you an idea of the changes you might be able to make to reduce the likelihood of it happening again. You will need to do this more than once so you can build up the picture.
Ask for external help and advice. You could contact your relative’s social worker or behaviour support team at the community learning disability team. They may be able to give advice over the phone.