HRM for congenital heart condition?

[Toobusy3]

DS is 3 in September, he recieves HRC until 2025. I've been looking that he could either meet the VUW or SMI rules(he has been diagnosed with Autism low functioning, global development delay under 12 months and PICA). He had open heart surgery in Jan 2023 and the valve is regurgitating. This causes shortness of breath.

He has an inhaler due to shortness of breath which doesn't help as once he's out the special buggy(given by the wheelchair service).

I have evidence from consultant, no awareness of danger and requires constant supervision this would be a risk without constant supervision , he is able to walk but needs his buggy for mobility and ensure his safety out and about. His behaviour is extremely challenging.

He has significant delays and impairments across all areas with his development and requires constant supervision by adults.

I understand the threshold, I am not sure what route to go down? He is non verbal. He becomes so hysterical at times he's physically sick and be comes red/blue lips on occasions when he is short of breath.

I have a support letter from his consultant, wheelchair service.

I also have a CWAD worker for him, could she do a report for him?

Any advice or help?

Put all the points on the form. If you think DS meets the criteria for both VUW and SMI, you don’t need to limit yourself to VUW or SMI, include all the points.

Make sure you cover all the elements on the flowchart(s). The SMI and VUW criteria flowcharts are in this document. Also, look at Contact’s leaflet. Focus on the other points, because supervision outdoors is LRM not HRM.

Yes, you can ask if the CWAD worker will write a report for you.

@Relaxinghammock

Thank you for the information, I've seen that heart condition is on there. He does have inhaler due to shortness of breath from his heart condition(valve is regurgitating post op) so hopefully he meets it this way.

I will point out both VUW and SMI.

Hi How did you get a referral to wheelchair service for a specialist buggy thank you

The referral process varies depending on what area you live in. If you google you should be able to find the referral process. Depending on your area/DC’s needs it may be a wheelchair rather than SN buggy.

Thank you so much for reply. I'm looking for a specialist buggy because he's outgrowing stroller and he thrashes a lot and has involuntary movements and needs to stay strapped in else he would fall out, because of the movements it means he hits his head on the plastic puschair frame and it worries me he needs a speciality buggy with padding

Request a referral (in some areas you can self refer. If you can’t ask your GP or other professionals involved), but be aware depending on area/age/DC’s needs it may be a wheelchair rather than SN buggy.

You could also look at a charity grant.

I appreciate your advice, I'll be looking into it thank you so much