Children with Genetic Conditions: Specialist Support

Debate between Lord Shinkwin and Baroness Berridge

Tuesday 15th June 2021 Lords Chamber

[Baroness Berridge (Con)]

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.

[Lord Shinkwin (Con)]

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?

[Baroness Berridge (Con)]

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.