How Herts Parent/Carer Involvement is supporting families
We spoke to Helen Errington, Chair of Hertfordshire Parent/Carer Involvement, (HPCI) to find out more about some of the work HPCI is doing to support families of children or young people with SEND
Tell us a bit about HPCI’s role generally?
Herts Parent Carer Forum (HPCI) is an independent parent/carer led organisation which aims to improve services for children and young people aged 0-25 years who have special educational needs and/or disabilities. We try to do this by ensuring that family voices are heard by service planners and decision makers. This means that we are present at Local Authority and Health strategic and operational meetings to put forward the parent/carer voice to those who are responsible for designing and delivering services for children and young people with SEND and their families. We also consult with our members to find out what they think of services and any improvements they can suggest for us to put forward for consideration and discussion. We also aim to try and keep our members informed about all matters SEND.
How have you altered how you work to adapt to the Covid-19 crisis?
HPCI staff and Board members are parent/carers of children and young people with SEND most of whom are considered vulnerable and so they are at home shielding them as much as is possible for the suggested 12 week period. There are a couple of us who have adult children and are finding it easier than most to take part in local authority virtual meetings. HPCI Board had their last meeting at the end of March by web conference and we intend to have a catch up meeting at the end of April in the same way. I anticipate that our May Board meeting will also be by web conference. We hope soon to send out a short survey to all our members to find out how they are coping and what issues they want us to raise with the local authority during this time.
There must be many challenges facing families you deal with during these times – can you describe any of them?
It is very difficult for families in lots of different ways. Many children aren’t able to access school, even those with an EHCP, and this disruption to routines really impacts children with SEND. It may mean they can’t access therapies, activities or equipment that is vital for their health or wellbeing. It is going to be harder for some children with SEND to access any education through online resources, and it is important all schools understand this. In addition lots of children who need extra care or support in the community are finding that specialist playschemes and activities have been closed, and while carers are classed as essential workers, for families having to shield or self-isolate, this means they aren’t able to access that support. Some families are really struggling to cope without access to family and friends to help out, and this is particularly difficult when families have more than one child with SEND. Explaining the reason for all the changes in ways in which children with learning disabilities can understand is very difficult particularly when there is no clear end point. Frustrations and distress are increasing which puts even more pressures on families who are already struggling. The impact on siblings is massive too.
Another challenge for many families who have children with dietary needs or a restricted diet, is how hard it is to access certain foods, with shortages in supermarkets of some foods and the closure of restaurants, particularly children with ARFID.
For all parents of children with SEND and particularly those with children with medical needs it is a very stressful time, trying to explain the current situation to children at the same time as manage their anxiety and their own fears, and look after their own mental health. Finding any time at all for parent carers to look after their own wellbeing is difficult, accessing the wealth of good advice that is available just isn’t possible for some.
What type of support and advice are you giving to parents/carers at present?
We are directing all parent /carers to the Local Offer website COVID-19 page for up to date information on a range of topics. We are also in contact with HCC asking for clarification on many issues that parents are raising with us and making sure that answers are being added to the Local offer pages. HPCI have just set up our own COVID-19 web page but this is really to direct parents to sources of support and information that they might find useful at this time. We also have sent out emails to our members with updates and are regularly posting items on our Facebook page
Is there any advice or suggestions you’d like to share with parents/carers or professionals?
These are very unusual and strange times, so don’t be afraid to ask for help or reach out to contact people in similar positions if you need to. There is a danger that families aren’t asking for the support their child needs because they think that dealing with Coronavirus takes priority, and we keep being told we are all in this together. But the impact for families of children with SEND is as always greater than the general population, so please do ask for help if you need it.
It’s easy to get overwhelmed by all the information being provided from so many organisations trying to help, so choose a small number of reliable sources and check in from time to time.
If you'd like to join HPCI or find out more, email coordinator@hertsparentcarers.org.uk or visit their website here.
