what's the deal for disabled parents?

disabled parenting | help and info

42-year-old Simone Baker was born with severe shortening of her arms and legs as a consequence of the drug Thalidomide that her mother took during pregnancy to counteract the effects of severe morning sickness. Despite her physical impairment, she describes her life as 'fairly normal', having been brought up alongside two younger able-bodied sisters, attending mainstream school, training and then working as a full-time secretary until the birth of her daughter in 1996. Becoming a mother with responsibility for a young baby suddenly meant, for the first time in her life, that Simone had to admit she needed a helping hand. She tells us her story here and describes her involvement with Disabled Parents Network, a peer support organisation run for and by disabled parents.

© disabled parents network

'I've never considered myself so very different to many of my peers. I learnt to drive, earned my own wage, lived on my own, went abroad on holidays, wore stiletto heels, got drunk (sometimes) and met and married my husband, John, in 1991 when I was 29 years old.

And yes, I even had sex!

When it came to planning for a family or becoming a mother, the thought never occurred to me that it might not be the right thing for a disabled woman to do, or that perhaps I should ask somebody's permission, or even whether it was something that other people may frown upon or condemn. Not that that would have stopped me anyway. So I just got on with it.

My daughter Lois was born in 1996 following two and a half years of fertility treatment. I first became involved with Disabled Parents Network in 1998 when Lois was two years old. For the first time in my life as a disabled person I really needed some advice and support, and was horrified at how little information and help existed for disabled people who were parents. I also became acutely aware that there must be many other disabled parents out there who were very isolated, really struggling and desperate for help. I had the benefit of a good informal support network and the ability to ask for help, which perhaps others did not.

disabled and pregnant

'I'm expecting a baby!' or 'We're trying for a baby!'

One of the stories from disabled parents we inevitably hear all too often at Disabled Parents Network is the very negative reaction that other people sometimes give to what is, for most able-bodied people, a very exciting and life-changing piece of news.

Midwives, GPs, Health Visitors and sometimes even friends and family members react by saying:

'You're being very selfish' or 'How will you manage?' or 'You can't even look after yourself – how will you look after a baby?' or 'Oh dear. How did that happen? Do you want me to arrange a termination?'

Yes, these negative attitudes do still exist. Fortunately though, I think things are gradually changing. Of course, we also get to hear about disabled parents who have received very positive reactions and have been able to obtain the support they require.

support for disabled parents

Disabled people do get pregnant. They do have babies, and they do manage. 'Cope' perhaps is a better word to use, as often that is what they are left to do. Information specifically for disabled parents isn't readily available, and where it is available, it's often in an inaccessible format. Disabled parents are frightened of asking for help in case they are seen as 'not coping' or being 'unfit parents'.

Local authorities have a framework setting out how people are eligible for care services. The framework is graded into four bands – the highest being 'critical'. 'Critical' includes 'vital family and other social roles and responsibilities'. The framework states that Social Services departments should consider the consequences if 'family responsibilities' cannot be undertaken. However, whilst a few authorities have specific policies that address disabled adults who have parenting responsibilities, more often than not support for parenting tasks does not routinely form a part of the assessment process.

Some Local Authorities have clear policies about how they will support disabled parents, and this ensures that parenting support is routinely considered along with other care or support needs. However, other authorities almost seem to go out of their way to avoid addressing these needs. Depending on where you live, you may or may not receive the support you need, but there are mechanisms in place for making a complaint if you feel you haven't received a fair assessment (see help and info).

choice and control

When parenting support is addressed, Direct Payments are often the preferred choice of disabled parents. Direct Payments are cash payments made in lieu of services provided by Social Services, to individuals who have been assessed as 1) needing services and 2) being able to administer the payments themselves or with assistance. Disabled parents are thus able to make their own decisions about how their care is delivered. Used properly, Direct Payments can be empowering, giving choice and control back to the disabled parent and promoting independent living.

Unfortunately disabled people are sometimes too frightened to approach Social Services to ask for support to care for their children because of the not altogether unfounded fear of being categorised as 'unfit parents'; their child or children being seen as 'at risk' and ultimately losing custody of their children. It is important that parents are aware of the full implications of approaching social services and this is something that organisations like Disabled Parents Network can help with.

Another problem is that many Social Services departments do not routinely work in a flexible and proactive way. For example, if the Adults and Children and Families teams were to work together, pooling resources and providing an integrated approach to parenting, many of the obstacles disabled parents presently come up against when seeking support would be resolved. It would also mean that disabled parents are not drawn into the internal wrangling within Social Services departments about which team should pay for which aspects of a disabled person's care package. Often the disabled parent receives no support at all while these arguments are taking place.

family breakdown

Over 60 per cent of the parents who contact Disabled Parents Network are lone parents. Having a family member who is disabled places additional pressures on all family members, especially informal carers, who are usually providing an enormous amount of essential care. A newborn baby places further strain. Put both these factors together, and without additional support, the family unit inevitably breaks down. Often then, Social Services are asked to help with picking up the pieces of the shattered family and the support then becomes an absolute necessity to the disabled parent to function in their everyday life. A small amount of support provided at a critical time could so often make all the difference.

skilled parenting

I have never been made aware before, during or after the birth of my baby that anybody felt that I was wrong to have a child. Many times I have come across people who have thought it was remarkable that I was caring for a child on my own. Even one or two misguided folk who seem to have implied that I've had my daughter to care for me. How wrong they are!

Disabled people often make better parents. They take life at a slower pace (well, most of them!), have to have a routine (which children like!) and have more time for cuddles and stories which is often what a child would choose over the latest computer game or video.

In families where both parents are able-bodied, often both parents work long hours, have hectic social lives and little time left for quality time with their children and parenting. In fact, why don't we question able-bodied people's ability to be good parents? When we read so much in the press about failing families and disruptive children, perhaps some disabled parents could teach them a thing or two!'

(February 2005)

Read on for details of relevant organisations, websites and reading.