Families caring for disabled children should be spared the ordeal of having to spend hours dealing with paperwork by being offered a one-off assessment of all their needs, David Cameron reveals today.
Writing in The Independent, the Conservative leader says that his experiences of caring for his son, Ivan, have shown him that families enter a "world of bureaucratic pain" when they begin to apply for the many different benefits, grants and tax credits to which they are entitled, repeatedly being forced to answer the same questions. Parents and carers of disabled children have become increasingly vocal about the bureaucracy they are forced to negotiate in order to access public services such as education.
Mr Cameron sets out a comprehensive plan to help disabled children and their families in a speech at a Research Autism conference today. It is the first time that he has addressed the issue since his son died suddenly in February, having suffered from cerebral palsy and severe epilepsy. He says that the policies have been shaped by his personal experiences of the services offered to disabled children. Ivan, who was six, needed constant nursing care.
Mr Cameron and his wife, Samantha, have two other children – Nancy, five, and Elwen, three. Ivan was born in April 2002, less than a year after his father was elected to Parliament. Within days he was suffering spasms and was soon diagnosed with Ohtahara syndrome, which can see children suffer as many as 100 seizures a day.
Mr Cameron has said in the past the news of Ivan's condition hit him "like a freight train". The couple initially cared for their son without help from the local social services department, though they were aided by a nurse trained in special needs. Later, they made the decision to seek more state help. It brought Mr Cameron into direct contact with NHS workers, including community nurses, special schools, and many different therapists. Friends said that those experiences had strengthened his belief in the importance of the family in helping to hold communities together.
The Conservative leader today discloses that his party is considering putting an end to the ordeal faced by parents in a similar situation by creating a "one-stop shop" for families, where different agencies and community workers come to the home of carers and sort out the paperwork in a single visit. It is inspired by a service pioneered in Austria.
A spokeswoman for Mr Cameron said that the plan was at an early stage and had not yet been costed.
"I am determined to make life simpler for parents," he writes below.
Mr Cameron pledges to "increase radically" the number of health visitors, to make it easier for parents to get the right education for children with disabilities, and to introduce personal budgets for carers. He also vows to improve respite care.
"Respite made a massive difference to my family," he writes. "Knowing that Ivan was with people who knew him, who would love and look after him gave us a huge wave of relief.
"Backing respite means backing the voluntary sector, giving parents and carers greater choice over the respite that suits them and looking at all ways of making sure there's a clear entitlement to respite."
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