Once you have a diagnosis, your child will be eligible for certain benefits. These include:
- The PIP (Personal Independence Payment), previously known as the DLA (Disability Living Allowance). The higher rate rate component is approximately £80+ a week. When your child is three or older, they will become eligible for the mobility component (the higher care mobility component is approximately £60+ a week).
- If you have given up your job to care for your child, you are eligible for the Carers Allowance. Approximately £60+ a week.
- Blue Badge for access to disability parking.
- Most medications, basic therapies, specialist supportive equipment and doctors appointments should be free to you on the NHS. This should include: a metabolic consultant (to manage NKH), a neurodisability consultant (for any seizure activity) and possibly but not necessarily a respiratory consultant (for breathing/suction/oxygen needs), an ophthalmologist (for eyes) and a palliative care consultant. Your therapy team is likely to include: a physiotherapist, an occupational therapist, a speech and language therapist, a dietician and a wheelchair services contact.
We know the NHS is underfunded, and often the need for equipment or therapy that would drastically improve your child’s quality of life is not covered. In this case, we suggest you apply for charity funding to make up the difference where possible. Below are list of charities that fund equipment/therapy in the UK.
- The Elifar Foundation
They fund sensory or specialist equipment (wheelchairs/trikes etc), with grants of up to £3k. Apply here.
- Variety The Childrens Charity
They fund equipment, wheelchairs, transport, and days out. Apply here.
- Childrens Today
They fund sensory or specialist equipment. Apply here.
- Family Fund
The fund smaller grants for additional therapy, and equipment. Essentially things that will drastically improve quality of life. Apply here.
- The Boparan Charitable Trust
They fund specialist and sensory equipment, and therapy. Apply here.
- Independence At Home
They offer grants to help towards specialist equipment, home adaptations/equipment and holidays/respite. Side note: you’ll need someone to apply on your behalf, as they don’t accept self refferals Apply here.
- Handicapped Childrens Action Group, they fund specialist equipment for children with disability across the UK. Apply Here
- Caudwell Children fund specialist equipment for UK children from families who earn less than £45k a year. Apply Here
- Life Line 4 Kids fund specialist equipment. Apply Here.
- Florance Nightingale Aid in Sickness Trust fund specialist or sensory equipment. Apply Here
- The Sequal Trust fund communication aids only. Apply Here
Special Needs Holidays
There is a large number of facilities and charities to help with holidays in the UK. For a list, please see the UK Experiences Page.