Features

Disability: the independent way

07 December 2018

Parents with physical disabilities experience a unique set of challenges, yet many do not get the support they need. Journalist Madeleine Bailey looks at how you can help reverse this trend.

There’s a robust body of legislation in place to protect the rights of disabled people. The Equality Act 2010 prohibits discrimination against anyone in all areas of life on the grounds of disability (Equality and Human Rights Commission, 2017a) and the United Nations Convention on the Rights of Persons with Disabilities states that countries signed up ‘shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities’ (United Nations, 2006).

Yet the reality is falling far short of the principles governing these important laws. In 2017, a damning report by the Equality and Human Rights Commission, entitled Being disabled in Britain: a journey less equal, stated that progress made over the past 20 years is ‘insufficient’ and ‘littered with missed opportunities and failures’ (Equality and Human Rights Commission, 2017b).

It named six key areas in which disabled people are still shown to be at a significant disadvantage to their able-bodied peers, including access to health and care services, education, work, standard of living, justice and participation.

Practical challenges

Sadly, parenting is no exception, bringing with it a particular set of challenges for the estimated 1.7 million disabled parents in the UK (Morris and Wates, 2006). It should be noted that national statistics for disabled parents are not routinely collected so exact figures aren’t known.

Physical disabilities are of course extremely varied, including sensory impairments, missing limbs, balance and coordination issues, problems gripping, size or mobility limitations, paralysis, or certain conditions such as cancer or multiple sclerosis.

As a result, the challenges faced by physically disabled parents are incredibly wide-ranging – practically, financially and emotionally.

Kaliya Franklin, a long-time disability rights campaigner, who now works for Learning Disability England, has Ehlers-Danlos syndrome, a genetic condition that affects her connective tissue, causing problems with joints and mobility.

Three years ago, she became a mum: ‘When you have a baby, any difficulty completing tasks takes on more significance because you’re responsible for another individual. Bathing, changing nappies and feeding your baby can be challenging if you have problems with fatigue, size, mobility or difficulty gripping objects. Ordinary tasks can take much longer than usual and although there’s specialist equipment, it’s usually expensive and not always available via social services 
due to budgeting restrictions.’

One of the difficulties Kaliya experienced was bathing her son. ‘The combination of joint problems, short stature and a caesarean section meant I couldn’t use a standard baby bath on a stand safely. At my occupational therapy assessment, I was told about an adaptable bath but it cost £2000, you couldn’t rent one and the local authority wouldn’t sign it off because of the cost. In the end, I had to either have another adult present or crawl with bowls of water to fill up a bath on the floor then leave the bath there all day until someone could empty it. It was exhausting.’

Expense is a key issue for people with disabilities, regardless of the needs for specialist baby equipment such as a wheelchair-accessible cot. In February 2018, research by disability-equality charity Scope revealed that disabled people in the UK pay an average of £570 per month more on everyday living costs (Scope, 2018).

Lack of understanding

An issue that compounds the everyday practical challenges is an inherent lack of understanding throughout the system, according to Kaliya.

‘There’s little insight into the needs of disabled parents, and a lack of knowledge of possible solutions. For instance, I had problems breastfeeding because I couldn’t support my joints in a position that I could maintain. But the midwives I met didn’t seem to understand this and in the end I couldn’t continue.

‘Similarly, standard advice is to wean a baby solely on fresh food. This wasn’t always possible for me so I wanted advice on getting the healthiest pre-prepared food. No one was able to give me this information and I’ve only ever known one disabled mum who received that sort of specialist advice.’

Kaliya also notes a lack of knowledge of local services. ‘No one told me that there was a one-to-one midwife scheme in my area, meaning I could have had the same midwife throughout my pregnancy. This would have been enormously helpful.’

Service confusion

In 2004, the Disability Law Service produced They said what?, a document that set out to bust common myths about disabled parents and community care legislation. It was created as a result of inaccurate information unwittingly given to disabled parents by health and social services professionals (Morris, 2004).

Common misinformation includes disabled parents being told that needs related to parenting should be dealt with by children’s services. This is not the case and comes under the remit of adult services in England only, as stipulated in the Care Act (Schwehr, 2016). The other three nations don’t specify which social services should provide this support.

Another misconception is that the children of disabled parents are automatically defined as ‘in need’. The Children Act 1989 defines children as ‘in need’ if they are disabled themselves or ‘unlikely to experience a reasonable standard of health or development’ without assistance (legislation.gov.uk, 2018). This is the case in England, Wales and Northern Ireland.

It touches on one of the main anxieties for disabled parents, recently highlighted in a report for Disability Rights UK, which was co-produced by disabled parents and social work professionals. Upholding the independence of disabled parents found that parents with disabilities are often afraid to ask for support for fear of being deemed unfit to look after their children (Munro et al, 2018).

Other complaints included poor communication, a lack of collaboration between health and social care services, and also between adult and children’s services, and a negative approach to disability, focusing on impairment rather than the strengths and empowerment of the individual.

Although this was a small study, its findings were broadly consistent with national and international research into service users’ experiences.

Dan Vale, director of Ginger Giraffe, called the support received by parents ‘haphazard and ill-coordinated’ while Professor Emily Munro who led the research stated: ‘There needs to be a more collaborative working relationship between children’s social care and adult services to ensure disabled parents can access the vital support they need in order to fulfil their parenting role.’


6 steps to good interactions

  1. Take a disability awareness course if you get the chance.
     
  2. Ask how your clients would like you to refer to their disabilities – preferences vary between individuals.
     
  3. Don’t make assumptions about what your clients can and can’t do based on their impairments. Instead, ask about their needs, priorities, the barriers preventing them achieving their aims, and their strengths and support network.
     
  4. Reassure them that you’re there to provide help and support, not to judge.
     
  5. Identify appropriate sources of equipment, aids and community resources such as parent-to-parent support groups.
     
  6. Anticipate future needs as far as possible, for instance to facilitate a smooth transition from pregnancy to parenthood.

Addressing shortfalls

‘If a disabled person is unable to use steps to enter a building, the problem is with the building rather than the person and the solution is to add a ramp’

So what needs to be done to make life better for parents living with disabilities?

Alison Baum OBE, CEO of charity Best Beginnings, which develops practical, educational and interactive resources for expectant families and new parents, says: ‘The key is for health visitors and midwives to look at the person as a whole – their strengths and the areas in which they need more support. It’s about listening, creating rapport, building a strong relationship and talking through their needs rather than making assumptions and judgements.’

Penny Dickinson, a Leeds-based local services delivery manager for Scope, agrees: ‘It’s important to remember that everyone is an individual. Two people with cerebral palsy, for instance, may have quite different issues and needs.’ Charities such as Scope have long promoted the social model of disability, developed by disabled people.

‘It regards disability as the barriers created by society rather than the physical impairment. For instance, if a disabled person is unable to use steps to enter a building, the problem is with the building rather than the person and the solution is to add a ramp,’ explains Penny.

This is in stark contrast to the traditional, medical model of disability, which focuses on what is wrong with the person rather than what they need to allow them equality, choice and independence.

In fact, the governments across all four nations promote a strengths-based/person-centred approach, looking at the client’s own capabilities, skills, priorities and support network. And there is an acknowledgement that for practitioners to conduct a full assessment of an individual, they will need time for research and familiarisation with community resources (Social Care Institute for Excellence, 2015).

Time is undoubtedly a challenge for practitioners in a world of cutbacks, with health visitor and school nurse numbers continuing to decline (Puttick, 2018; Unite, 2018).

Kaliya cites a lack of training as an issue in many areas. ‘There are some great individuals out there – my own health visitor was fantastic. But services are patchy and it’s unfair to expect professionals to have sufficient disability-related knowledge without adequate training.’

However, a better awareness of the challenges that disabled parents face and a strengths-based approach can go a long way to improving interactions between health and social care professionals and disabled parents (see Six steps to good interactions, above).

For references, visit bit.ly/CP_P_features


Resources

  • Disability Rights UK has advice, information, factsheets and guides on all aspects of life with a disability... disabilityrightsuk.org
  • Scope has a wide range of resources specifically for health and social care professionals, including the social model of disability and tips on how to talk about disability... scope.org.uk
  • Best Beginnings has a useful section on parents with disabilities, plus educational tools including its free, award-winning Baby Buddy app, which is available on the NHS Apps Library...bestbeginnings.org.uk
  • The Social Care Institute For Excellence has guidance on the strengths-based approach... scie.org.uk

References

 

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