Legislation needed to improve opportunities for young people with lifelong conditions, say campaigners

The All-Party Parliamentary Group (APPG) for Cerebral Palsy says that an Access to Education, Employment Rights and Training opportunities (AEERT) Bill should be included in the next King’s Speech to improve opportunities for young people with life long and chronic conditions.

The call has been made in an APPG report as part of a raft of recommendations to improve the transition to adulthood for young people with cerebral palsy.

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The report says that “the single biggest factor” in challenges facing young people as they reach adult hood is “the ineffective nature of the current legislative framework and its implementation” to meet their needs.

Too often councils and other providers of support “do not adhere” to current special education needs and disabilities (SEND) legislation “and there appeared to be no accountability”, warns the report.

A “failure to achieve a smooth transition nearly always stems from a failure by local authorities, educations settings, health services and social care services to follow the law,” said the charity Independent Provider of Special Education Advice, in its evidence to the APPG in writing the report.

The APPG’s report urges the UK government to bring in similar legislation being planned in Scotland through the Disabled Children and Young People (Transitions to Adulthood) Bill. This will require councils to have plans for disabled children as they move to adulthood.

The proposed AEERT Bill would extend education, health and care plans for young people with lifelong conditions up to the age of 25 and give them a right to access education and training placements for free until that age.

Theodore Barnard-Edwards, a young person with cerebral palsy who gave evidence to the APPG, said: “I had to leave college when I was 21 as they would only let me stay three years, even though I wanted to carry on learning and take more courses.

“I wanted to learn, and I was still working on my life skills and independent skills, but I had to leave."

The proposed legislation also needs to include a requirement for flexible working to be the default position for all employers “to offer reasonable adjustments for those with cerebral palsy”, states the APPG report.

Also included could be a stipulation that education and training providers as well as employers carry out occupational therapy assessments of the needs of prospective employees “to ascertain the adjustments and support needs” that are required.

All employers and providers should also provide a “dedicated point of contact” to support students and young workers and to “champion their needs”.

The legislation would also create a new right for mobility needs to be met and for careers advisers to be offered specialist training in helping young disabled people.

Other recommendations made by the APPG to improve young people’s transition to adulthood include ensuring local SEND partnerships have expertise in cerebral palsy.

Regional cerebral palsy centres with health, social care, and education providers available should be built.

In addition, young people and their families should be helped to become “self-advocates for their conditions and life needs” as they move from children to adult services.

“Too often, as this and earlier APPG reports identify, young people with cerebral palsy and their families are let down, sometimes from a very early age, by systems which are inadequate, uninformed and underfunded,” said Amanda Richardson, chief executive of Action Cerebral Palsy which has developed the recommendations with the APPG.

APPG co-chairs, Conservative MP for Blackpool North Paul Maynard, and Labour MP for the City of Durham Mary Foy are to raise the report’s recommendations in parliament.

Maynard is to seek a debate on the report in the House of Commons, while Foy is to introduce an early day motion to urge peers and MPs to support its findings.

The APPG for Cerebral Palsy has been co-sponsored by the philanthropist John Caudwell and charity Action Cerebral Palsy.

The report has been released to coincide with World Cerebral Palsy Day, to promote awareness of the condition.

To mark @WorldCPDay, @action_cp is launching an awareness campaign to give new parents the confidence to speak to their GP or Health Visitor if they have concerns about their young child’s motor development. https://t.co/6NMJ3RJs5Y. #IfInDoubtCheckItOut #CPAware #CerebralPalsy pic.twitter.com/R8XZftzwje

— Action Cerebral Palsy (@action_cp) October 5, 2022