Caring shouldn't mean exclusion

What more can be done to support carers? Tell us your thoughts.

BEING a new parent is tough. The demands of the child mean everything must fit around them. Your baby determines if you sleep, when you eat, if you go out and how much time you spend with your partner and other children. For most parents this level of intensity lasts only a few months. But for other parents, this is the way life will always be.

Today, there are many families raising children with learning disabilities, many of whom have complex problems such as challenging behaviour or serious sleep issues. For these parents there is rarely a break from the constant demands of caring for their child and simple activities like cooking a family meal or popping out to the shops take effort and planning.

In addition to these pressures, these parents often suffer from a lack of sleep themselves, due to the care their child requires every night. This exhausting routine can cause family relationships to suffer, for example, when parents have little or no time to spend with their other children.

When life is like this, the simplest things, like a decent night's sleep, can make all the difference.

The problems faced by families with disabled children are often hidden from view. But the pressures are real and in Edinburgh today there are more than 2000 children with disabilities - and there is a growing need for highly-specialist services which support them and their families. Due to advances in modern medicine, many children are now cared for at home, instead of being institutionalised, which was often historically the case. These medical developments have moved more quickly than the developments in mainstream care services, leaving a gap in support for families and children.

It is broadly agreed that the home is where children should be, but in many cases this is only possible with specific support, such as short-term care, which literally helps keep families together.

Many children with high care needs require physiotherapy and will have complicated medical requirements; they may also need specialist equipment for bathing or feeding. One mum, Sarah, has an eight-year-old daughter Rachel with profound developmental delay, cortical blindness and epilepsy. This means she is unable to talk or walk, needs a wheelchair or special chair for support and has to be fed through a gastrostomy tube.

Sarah told me even the simplest task takes time, leaving her with little or no time for friends or her own space. Unsurprisingly she often feels isolated and exhausted. Sarah is "on-call" every hour of every day to make sure Rachel has what she needs.

One of the lifelines for parents like Sarah is short-break care run by organisations like Barnardo's. We take care of Rachel one night a week at our Caern service in Edinburgh. With Rachel being cared for by highly-skilled Barnardo's staff, Sarah is able to have time to herself.

While Sarah recharges, Rachel has the chance to play, make friends, and learn in a safe and secure space. While not a medical service, Caern gives Rachel the specialist support she needs while away from home, as well as the opportunity to become independent and confident.

At Caern, the support which each family and child needs is different. Some need help after school, whereas others might need help over a weekend or holiday, but each visit to Caern is crucial in helping families to cope.

Being given a break from intensive child care can mean the world to an exhausted parent. For example, Marie, another parent supported by Caern, told me how the service gave her the time to have a meal with her husband and take a long lie-in, which was her first full night's sleep in nine years. Medical advances now mean that more children with disabilities can remain in the home, but society has failed to take stock of the personal and social implications of these developments.

Many people will have heard of autism, Asperger's syndrome, Down's syndrome, dyslexia, cerebral palsy and global developmental delay, but few understand what these conditions are and how they affect people.

For families affected by disability, this lack of understanding, coupled with the demands of caring for a disabled child, leads to isolation and frustration. Few people know where to turn, who to ask for help, or who else locally is living a similar life.

At Barnardo's, we believe that every child with a disability should have the chance of a fulfilling childhood. We believe that parents should be given the support they need so that they can continue to care for their child in the home, are no longer hidden or excluded from our communities and are given an equal chance to lead full and meaningful lives.

Hugh Mackintosh is director of Barnardo's Scotland