Caring for a child with CDKL5 means that you may find that you need specific equipment to help you perform that role. Not only will it help you, but it will ensure that your child gets the most out of life, and will keep them safe.
In the UK, it is the NHS and your Local Authority that can provide this equipment. Generally equipment in the home, such as feeding chairs, beds, hoists and bathing aids will come via the Occupational Therapist (OT) within the Local Authority. They will also be the point of contact when applying for a Disabled Facility Grant (DFG). A DFG is an amount of money that is used for adaptions to the home with a maximum grant of £30,000, for children this is a non-means tested grant. Families have used these grants, which the Local Authority manage, for extensions to property - to provide a bedroom and or wet room, through-floor lifts, or to bring the child's bedroom to a ground floor. For more information about DFG click here
For equipment which is needed for nursing or medical care such as feeding pumps, SAT Monitors, suction machines etc these are provided by the NHS and in some case can be prescribed by the GP. Your local Consultant Pediatrician or Community Nurse will be the point of contact for this equipment.
Wheelchairs can be accessed through your local Wheelchair Services, and generally accessed via the OT or if your child is in education there will be a point of contact at school.
Over the years we have seen variability to what is provided in terms of Beds. Many of our children have specialist beds, and some Local Authorities will pay for these beds, however, sadly not all. What seems like a basic right to keep the child safe, because of cost is not always provided. Fortunately there are many charities that will help with beds for example Newlife Foundation for Disabled Children is one of those charities. So if you are struggling for any equipment needs then please contact them. They also have a loan scheme and equipment can be sent in a very short period of time.
Not all equipment is going to be provided by statutory agencies, and therefore you will find yourself having to purchase items yourself. Fortunately equipment which is designated for a disabled child or adult attracts a zero rate VAT. It is the responsibility of the supplier to complete the exemption documentation, and to do that they will ask you to fill in, sign and send back a proforma. For further details about the scheme click here.
When your child reaches 3 they will then qualify for the mobility element of the Disability Living Allowance (DLA). By qualifying for high rate you will be able to apply for a vehicle from Motability Scheme. What this means is that the allowance will be paid directly to Motability in exchange for a Car. The scheme allows for you to have a car for 3 years, or 5 years if you have a Wheelchair Adapted Vehicle (WAV). If you decide to go for a high specification car then you will need to contribute in the form of a advanced payment. For more information about the scheme click here.