Building a better bed time routine

Avleen

Recently we were contacted by Hardeep, whose daughter Avleen was not sleeping at all. This was having a huge impact on the whole family. Claire from our Sleep Service offered the family some guidance and now, just a few months later, Hardeep tells us about their journey.

My daughter Avleen was born prematurely at 28 weeks but is now five years-old. She was diagnosed with Autism in 2018 and this often causes sensory issues which can lead to meltdowns.

She had disturbed sleep until she was 3 years-old and then things started to get much worse. She wouldn’t nap at all through the day and even though she was exhausted, she would wake up through the night – sometimes hourly.

It inevitably started to affect her school work because she was so tired during the day that she couldn’t concentrate and would act out.

Things came to a head when I was pregnant and had my second child. Avleen was waking up through the night and wasn’t able to settle herself. Once her sister Harneez was born, the crying of the baby in the night would also affect Avleen. It was taking a huge toll on the whole family.

We saw a paediatrician who suggested that we try melatonin but I was hesitant to try this as a first step. They also suggested that we get in touch with the sleep team at Cerebra for some advice and support.

We were put in touch with Claire who listened to what was going on and asked lots of questions to help her to understand our situation. We worked together to put a plan in place to improve Avleen’s sleep.

Claire suggested that we avoid giving Avleen a bottle before bed but rather give her a small snack if she was hungry. We were also advised to switch screens off at 7 to allow her to start winding down before sleep.

We started to give her a bath as part of her evening routine and this allowed Avleen to start to recognise for herself when it was nearly bed time.

Claire was in frequent contact during this time and for every issue that we had surrounding sleep, she was looking for a reason why it would be happening so that we could adjust Avleen’s routine accordingly.

After completing every step of the routine, we were finally able to bring Avleen’s bedtime forward to 9pm. She started to go to bed much more relaxed and as a result, was finally able to sleep through the night without any episodes of waking.

Once her sleep started to improve we even realised that part of the problem previously had been that she had been extremely restless in her sleep and her hair was getting tangled. This was causing her sensory issues and was leading to meltdowns.

Before we worked with Claire, Avleen was anxious about everything, especially at night. Now her behaviour is much better because she is much more well rested. She even recognises when it is time to go to bed and asks to go to bed herself – something that would have never happened before.

The only time that she wakes during the night now is if she has a cold or is suffering with hay fever. This obviously disturbs her sleep but is understandable.

She will sleep for 10 hours now which is amazing and it has had a hugely positive effect on her behaviour.

She is now able to concentrate much more at school and we have noticed that her asthma is much more under control.

It’s not just had a positive effect on Avleen but has also made things better for the entire family. I have gained so much confidence with the help of Claire and now I know that I’m not going to have any issues getting her to sleep. We’re all far more rested and this has meant that we are able to cope with everyday life much more easily.

If you would like to find out more about our Sleep Service, including how you can get help from one of our Sleep Practitioners, check out our website.

Direct payments don’t work for everyone

Direct payments

Our Legal Entitlements and Problem-Solving (LEAP) Project has just published a report studying the experience of families with disabled children and Direct Payments[1].

The research consisted of two parts:

  • We developed and circulated a Survey Monkey questionnaire in early 2018. It asked families about payment rates for personal assistants (PAs) [2] as well as their experiences of using Direct Payments. The survey attracted a total of 256 responses.
  • Students at Leeds University, under the supervision of Professor Luke Clements, carried out a survey of English local authority hourly rates for Direct Payments. Freedom of Information requests were made to 60 social services departments resulting in 49 usable responses.

A number of respondents clearly found Direct Payments to be a very positive experience. One stating:

DP is a lifeline I don’t know how we would have managed without it in the past 10 years. It is flexible & most definitely the way forward. I would recommend it 100% [as] it gives not only us a break but my daughter time away from us. It also allows us time with other family members without having to deal with our daughters complex needs an extremely vital resource. Long may it continue.

However, a majority reported significant problems with receiving Direct Payments. Some using the phrase ‘complete nightmare’ to summarise the difficulties they had encountered and others spoke of having to ‘fight’ and ‘battle’ to get enough help. One respondent reported:

At the moment it would seem the whole system is collapsing from health, education and social services. I just keep getting told there is nothing else they can offer me, and there are no funds to help us. The social services won’t even let me have a carer’s assessment or child in need assessment. [The] services are a disgrace at the moment.

Respondents to the family survey reported an average hourly Direct Payment rate of £8.90 gross while the local authority survey gave a higher average figure of £10.57 gross.

The report highlights the following key points:

  1. The survey reveals deep levels of dissatisfaction with the way that Direct Payment arrangements are been administered by local authorities.
  2. Rates of pay for Personal Assistants (PAs) were very low, typically at minimum wage rates. It appears that in consequence that in many local authority areas there is a serious ‘market failure’ – such that authorities are arguably in breach of their statutory and public law obligations to families with disabled children.
  3. Getting an assessment of needs was often said to be a matter of chance, with some families learning about services through word of mouth and some reporting a wait of as long as two years to get an assessment.
  4. Many respondents commented that Direct Payment rates were too low to employ suitable PAs despite their local authority being willing to pay much higher rates for agency staff.
  5. The difficulty of finding suitable staff who were prepared to work for the rates imposed by local authorities was a major and reoccurring theme of the survey as was fear by respondents of losing the Direct Payments if they were not able to find such staff.
  6. The complexity of some children’s support requirements, in conjunction with poor conditions of employment, meant that many families reported finding it impossible to recruit PAs. In conjunction with increased restrictions on the permitted use of money, this could result in money being unspent.
  7. Money that remained unspent was usually reclaimed by local authorities after periods of time that ranged from two weeks to two years, leaving families without any support. There was only one report (from 256 replies) of pay rates being increased in order to promote recruitment of a PA.
  8. There was a lack of knowledge (amongst families) as to how Direct Payments were calculated and indeed what the actual rate was in individual cases.
  9. There are considerable shortcomings in realising the original intentions behind Direct Payments. Strict rationing of resources is resulting in families experiencing stress, an acute lack of support and prolonged ‘battles’ to secure basic services that they are entitled to by law.

The report finds that ‘the research discloses deep levels of dissatisfaction with the way that Direct Payment arrangements are administered by local authorities’.

The whole report can be seen here by clicking on ‘Direct Payment Research’ .


[1] Direct Payments are moneys given directly to parents (in this case) by their local authority so that they can buy services themselves for their disabled child rather than having them arranged by the local authority.

[2] Personal Assistants are employed by families to provide services to their children (e.g. take them to community activities) and are paid using the Direct Payments they receive.