FAO:

NHS SUSSEX INTEGRATED CARE BOARD

LOCAL MP: DR BECCY COOPER

WEST SUSSEX COUNTY COUNCIL

NHS Sussex has issued letters informing families that autistic children and children without a primary physical disability are no longer eligible for major specialist strollers and wheelchairs.

Families have been advised instead to use reins and "plan journeys carefully'  creating a new and alarming safeguarding issue for many families and displaying a frightening lack of knowledge surrounding the dangers to autistic children. 

Autistic children  (particularly those with high support needs) also have mobility needs and are at significantly increased risk of:

- Sudden elopement into traffic
- Running into open water
- Going missing
- Severe dysregulation leading to self-injury
- Inability to respond to verbal safety commands in crisis

These risks are widely documented. They are not behavioural choices but disability-related impairments.

Specialist strollers and wheelchairs, for many children, function as safety equipment. Removing them does not remove risk,  it removes protection.

My son, Apollo, relies on his specialist stroller to travel safely to and from school, attend medical appointments, and access the community. It is also his regulation space when he becomes overwhelmed.

When his chair recently broke down, I contacted the service for replacement, only to be told that autistic children are no longer eligible under the revised criteria.

Apollo’s needs had not changed, only the policy has changed.

This blanket exclusion appears to:

- Discriminate on the basis of diagnosis rather than functional need
- Fail to consider individual safeguarding risk
- Potentially breach duties under the Equality Act 2010
- Potentially conflict with safeguarding obligations under the Children Act 1989

Public bodies have a legal duty to anticipate disadvantage and make reasonable adjustments. Removing established safety equipment from a clearly vulnerable group is the opposite of a reasonable adjustment.

Advising parents to use reins in place of clinically prescribed specialist equipment demonstrates a profound misunderstanding of high-support autistic children and exposes families to unacceptable risk.

We are calling on NHS Sussex Integrated Care Board to:

- Immediately suspend the revised eligibility criteria.
- Reinstate access for autistic children where there is documented safety and functional need.
- Conduct and publish a full Equality Impact Assessment of this decision.
- Confirm what safeguarding risk assessment was undertaken prior to implementing this policy change.
- Engage transparently with affected families and clinicians.

Families should not have to wait for a serious incident before action is taken.

The integrated board came back to me after 5 months and told me they had the head of dental care (?) look at this case as they felt this would be more fair.

They have decided to keep the dangerous and evidently fatal policy. They dont care about kids like mine.

I've refused the compensation they offered me for the out of pocket stroller because they need to focus on the risk posed to autistic children which isn't going to be solved with £250. It was insulting. 

I haven't heard from Dr Beccy Cooper MP or her team regarding this apart from an email to outline their position on this. As far as I am aware, no practical action has been taken and I've done everything I can. 

I am one person so other people including Dr Beccy Cooper MP will need to be more supportive for real change to happen. 

TAKE REAL ACTION: I am not just asking you to sign this petition but in light of the tragic death of Noah Woods, please reach out to the integrated board and Beccy Cooper on your own behalf, we need more voices standing with autistic children right now, louder and in larger numbers.

Please take action with me before any one else goes missing or gets hurt.

Autistic children deserve equal protection under the law.