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The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government what steps they are taking to support individuals with Down’s Syndrome and their families.

Lord Prior of Brampton

There is support available for families with children born with Down’s syndrome. For many people this will involve an early intervention programme, to help support the child’s development and provide support to the family. This support will be delivered by health visitors and midwives.

An early intervention programme can include speech and language therapy, physiotherapy to help with any muscle weakness, and individual home teaching programmes.

Where a child has a special educational need, the local authority should also make support available to ensure the child has access to the same educational opportunities as a child without such a need. The Children and Families Act 2014 introduced a statutory framework for local authorities and clinical commissioning groups (CCGs), to work together to secure services for children and young people up to the age of 25 who have special educational needs or disability.

General practitioners can provide an annual learning disability health check. Children and young people aged 14 and over who are on a general practice’s learning disability register are eligible to have a health check and a health action plan linked to this check. The health check and health action plan can inform a local authority’s annual review of young people with special educational needs from age 14 onwards to help them to prepare for adult life.

The Care Act 2014 requires local authorities to undertake an assessment when an adult appears to have care and support needs. The assessment must involve the adult, their carer and anyone else they want to involve and consider the outcomes the person wants to achieve, their needs and how these impact on their wellbeing.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government how much has been invested in the last year in (1) Down’s Syndrome research, (2) Down’s Syndrome screening, and (3) support for people with Down’s Syndrome.

Lord Prior of Brampton

The information requested on total investment in Down’s syndrome research is not available. Spend on research funded directly by the National Institute for Health Research (NIHR) is categorised by Health Research Classification System (HRCS) health categories including ‘congenital disorders’. There are no HRCS health sub-categories, such as for Down’s syndrome or other specific syndromes.

To obtain how much the National Health Service invested in Down’s syndrome screening in the last year would incur a disproportionate cost.

Data on how much has been invested in the last year on support for people with Down’s syndrome is not held centrally.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government what assessment they have made of the possible effects of normalising cell-free DNA, non-invasive prenatal testing techniques, in particular with regard to enabling sex-selective abortions.

Lord Prior of Brampton

There is a long established Fetal Anomaly Screening Programme (NHS FASP) that prospective parents can choose whether to participate in. The UK National Screening Committee recommendation on non-invasive prenatal testing (NIPT) does not change the choices available to prospective parents within the NHS FASP. Guidance from the Royal College of Obstetricians and Gynaecologists makes it clear that women and their partners should receive appropriate information and support from a properly trained multidisciplinary team, who must adopt a supportive and non-judgemental approach.

NIPT testing as part of the NHS FASP will not be used to determine the sex of the foetus. Abortion on the grounds of gender alone is illegal.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government what steps they are taking to fulfil their obligations under the UN Convention on the Rights of Persons with Disabilities, and in particular Article 23, subsection 3.

Lord Prior of Brampton

There is a long established Fetal Anomaly Screening Programme that prospective parents can choose whether to participate in. The United Kingdom National Screening Committee recommendation on non-invasive prenatal testing does not change the choices available to prospective parents within the programme. We are satisfied that the UK is compliant with its obligations under the United Nations Convention on the Rights of Persons with Disabilities and that the Programme is compliant with all obligations under the Equality Act 2010. We would also note that English law does not recognise a foetus as a separate legal person.

The below Parliamentary question was asked by Lord Shinkwin on 2016-03-17.

To ask Her Majesty’s Government what action they are taking to ensure that the UK complies with its obligations under the UN Convention on the Rights of Persons with Disabilities if cell-free DNA, non-invasive prenatal testing techniques are made available to pregnant women on the NHS.

Lord Prior of Brampton

There is a long established Fetal Anomaly Screening Programme that prospective parents can choose whether to participate in. The United Kingdom National Screening Committee recommendation on non-invasive prenatal testing does not change the choices available to prospective parents within the programme. We are satisfied that the UK is compliant with its obligations under the United Nations Convention on the Rights of Persons with Disabilities and that the Programme is compliant with all obligations under the Equality Act 2010. We would also note that English law does not recognise a foetus as a separate legal person.