EVERY day 75 children are born with or have diagnosed a disability, and there are about 700,000 disabled children in the UK. Enhanced neo-natal intensive care and improved diagnosis mean these numbers are increasing all the time.

The Government plays a primary role in providing financial support and services for these children and their families, but a new report from the charity New Philanthropy Capital (NPC) has highlighted huge shortcomings in this area that prevent many children from getting the best out of life. While children with a disability have the same needs as others to learn, have fun, make friends, play and go on holiday, a lack of equipment, therapy, family support or communication aids can limit their ability to take part.

Families with disabled children have contact with, on average, ten different professionals and make more than 20 visits per year to hospitals and clinics, according to the report, Ordinary Lives. Many feel they are fighting a system that is fragmented, complex, bureaucratic and does not put their needs at the heart of provision.

Celia, is 7 and has learning difficulties, epilepsy, motor developmental delay and left- sided weakness. She is a wheelchair user and, although she has few words of identifiable speech, she is very sociable and loves company.

Celia sees nine health consultants, five therapists and a wheelchair assessment team. Since birth she has had 774 appointments, compared with only 29 for her brother Ian, 7, who is not disabled. Her mother, Ruth, has spent almost 5,000 hours on appointments and phone calls, and has driven 11,000 miles to appointments.

Families such as this face huge financial obstacles. It costs three times as much to raise a disabled child. Additional costs include extra heating, clothing, bedding, equipment, housing adaptations and extra laundry.

The report also notes that 55 per cent of families with disabled children live at the margins of poverty, and 84 per cent of these families are in debt. To help both the families and charitable donors, the NPC has identified a number of voluntary organisations that provide support and services to disabled children and their families.

As Martin Brookes, head of research at NPC, points out, even where statutory provision does exist, charities are often the first port of call for families with disabled children, providing information and help in accessing services and benefits. “One of the most valuable things charities also do is to provide emotional support and the opportunity for carers to have a break from their work,” Brookes said.

For the benefit of donors, the report also quantifies what can be achieved with different donations. A donation of less than £4,000 will pay for a five-day arts workshop for up to 30 disabled children; £25,000 will cover 72 weekend residential breaks a year, while £50,000 will pay for a legal adviser for disabled people, enabling about 400 additional clients to be taken on.

The report also endorses a number of charitable projects working with children with disabilities. These include the Circles Network, which involves building a circle of supportive friends around disabled children and their families who are at risk of social exclusion. The charity also runs courses to equip parents with the confidence and skills they need to negotiate effectively for the services they and their child need.

Sibs is a national charity that aims to provide support for siblings of disabled children and adults, while Epic Arts, based in the London borough of Tower Hamlets, runs inclusive arts projects for people of all abilities and ages. The Disability Law Service provides free, confidential legal advice for disabled people and their carers.

In a separate report, Valuing Short Lives, the NPC identifies charities that support families where a child has a terminal illness.

The reports can be found at www.philanthropycapital.org.uk