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Children with Genetic Conditions: Specialist Support

Volume 812: debated on Tuesday 15 June 2021


Tabled by

To ask Her Majesty’s Government what steps they intend to take to ensure that children with (1) 22q11 deletion syndrome, and (2) other genetic conditions, receive specialist support to address and prevent any loss of (a) learning, or (b) social skills, due to the disruption of their education during the COVID-19 pandemic.

On behalf of the noble Lord, Lord Farmer, and with his permission, I beg leave to ask the Question standing in his name on the Order Paper.

My Lords, we are committed to help all children, including those with genetic disorders, to recover from the impact of lost learning during the pandemic. Following the most recent announcement on education recovery on 2 June, we have now allocated over £3 billion to children and young people. We are targeting those resources to support those in greatest need; for example, special and alternative provision schools will receive additional funding to ensure one-on-one tutoring for their pupils.

I commend the Government on their growing support for family hubs. The original Breakthrough Britain report recommended these, high- lighting their role as a one-stop shop for families with disabled children, which would greatly help those with often very debilitating genetic conditions. Can my noble friend the Minister advise the House of what plans there are to expand the remit of family hubs to include this?

My Lords, a number of family hubs are already in operation but the department has just finished procurement for a national centre for family hubs as part of the £14 million allocated to this. Part of that role will be to ensure that best practice is spread across England. The noble Baroness is correct that these centres should be a hub of voluntary, statutory and other services for families, including those with special educational needs and disabilities.

My Lords, the head of Ofsted has highlighted that children with special educational needs and disabilities have incurred some of the biggest learning losses from schools closing, noting:

“Many have genuinely gone backwards in basic skills, language, numbers”.

This is because too many seriously ill children did not receive—and in some cases are still not receiving—adequate support for their disability or medical condition through health services or school, despite having education, health and care plans. What consideration have the Government given to the need for a therapies catch-up plan for children who have regressed or plateaued in their speech, communication, physical development or social skills due to the pandemic, as called for by the Disabled Children’s Partnership?

My Lords, it is indeed correct that some of the learning lost has been greatest for those with special educational needs and disabilities. That was one of the reasons why, during both of the lockdowns when schools were closed, places were still available for many of those young people. They should now be accessing all the therapies and additional support that the plan says they should receive. The recovery package has the flexibility that some of the money is per-pupil and, therefore, schools can buy in the additional specialist support that the noble Lord outlines.

My Lords, the absence of a diagnosis or late diagnosis of 22q11 deletion syndrome means an inevitable impact on children’s educational support and outcomes during their school years. Can my noble friend the Minister shed some light on work that she may be doing with the Department of Health on the Government’s plans to increase the number of conditions included in newborn screening for specialist support, in line with other countries, and what consideration has been given to the inclusion of 22q11?

My Lords, as I understand it, this is the second most prevalent genetic disorder after Down’s syndrome. I will take back to colleagues at the Department of Health the request as to whether it is included in screening. This disorder apparently has a wide spectrum of effects, so some of those children are never identified during their school career, but the education, health and care plan should support them if they do exhibit a need for extra support. Diagnosis is not a precursor to having an EHCP; many are diagnosed, some within mainstream provision in schools and some in specialist provision.

My Lords, will the Minister hold a meeting to listen to representatives from the National Society for Phenylketonuria and young people with the genetic condition PKU so that the Government can learn more about the impact this has on children, their health and education, and consider what more the Government could do to help them? Would she be good enough to invite her counterpart from the Department of Health to join such a meeting as well?

My Lords, noble Lords are wanting to put me in touch with my colleagues at the Department of Health today. I will take back that request, but I repeat that one of the key visions behind the 2014 reforms was that when a child exhibits a need for support they do not wait for diagnosis or any of that: schools or the family can get an EHCP and get the support in place that the child or young person needs.

Over the last year, children with genetic conditions that give them severe physical and/or learning disabilities and who are extremely vulnerable to Covid have often had no school, no carers coming into their homes and no short breaks or respite. Education, health and care plans are designed for the whole child, so does the Minister agree that short breaks and respite are vital for children in order to address high levels of family exhaustion? Has the department made an assessment of whether local authorities and CCGs are able to sustainably fund them?

My Lords, the noble Baroness is correct that during the periods of lockdown the pressure on these families was immense. Parliament has passed legislation—in 2011, I believe—putting a statutory requirement on local authorities to look at the provision of short breaks for children with those needs and their families. We have given support during this period, particularly to families of those with special educational needs, and through Family Fund for those families on low incomes, amounting to around £27 million. Obviously, part of recovery and catch-up for schools is helping precisely the children the local Baroness outlines.

My Lords, catching up with lost learning will require the support of not just professionals but volunteer organisations and families. Will the Minister therefore make sure, together with her colleagues at the Department of Health, that organisations such as Max Appeal, which care particularly for children with 22q11, get the support that is tailored to their very specific needs?

My Lords, the department funds a range of voluntary organisations through the £42 million that helps, for example, to deliver whole-school SEND, as well as providing support through the Family Fund, but I will ensure that the noble Baroness’s request is taken back to the department to ensure that we are aware of the full range of voluntary organisations. Of course, during this time local authorities have also had £6 billion of unring-fenced money to support the kind of organisations that the noble Baroness outlines.

My Lords, I would like to add to the list that the Minister is going to take to the Department of Health and Social Care. This is about CAMH services. Clearly, the last 12 months have been very difficult in terms of providing CAMH services, but there is evidence that for some of the children involved this has now become a very urgent need. I wonder if she could discuss that matter with her colleagues.

My Lords, we work closely with them because of the nature of the work involved in EHCPs, and we cannot underestimate the effects of this period. During Mental Health Awareness Week, we announced £17 million that should allow 7,800 schools to have a lead mental health practitioner within the school to provide the kind of support needed. By making school places available during lockdown, we allowed school leaders to identify vulnerable children who needed to come into school for all kinds of reasons, including mental health issues.

My Lords, I draw attention to my registered links with Mencap. The Disabled Children’s Partnership, which has been mentioned, has estimated that almost half of disabled children have lost confidence in communicating because of a disruption or delay to speech and language therapy during Covid, a factor not adequately addressed in the Government’s education recovery plan. Will the Government, as a matter of urgency, please adjust the plan to meet the complex needs of such children and their families?

My Lords, the noble Lord is correct that early years and language development were greatly affected during the lockdowns. That is one reason why early-years settings were kept open—because of the nature of that education provision. We have allocated £18 million to early-years language development, including £8 million to the Nuffield Early Language Intervention, and I believe that the majority of primary schools have signed up for that. We are funding the initiatives that we help believe can help those children to catch up.