A Critical articulation of the perspective of parents of disabled children.
Access to information and education
Though all new parents must learn to provide for and support their children, parents of disabled children often find themselves isolated and must work harder to develop support networks. For example, whereas the average new parent will know many people who have also had children and can offer advice, a new parent of an autistic child may not have access to any other parents of autistic children.
Even when dealing with the medical profession, this can be a problem for parents. Problems of diagnosis often exist, and even after diagnosis, a lack of understanding in the medical profession can be evident. As doctors themselves are very much focussed on the medical model of disability, they often seek to 'cure' the child, rather than helping parents understand the social context. As parents look to the medical profession for advice early on, this can potentially form the basis of their opinions and outlook on disability.
Understanding and accessing service provision
Though the social model of disability is becoming widely accepted, and more services are being put into place for both disabled adults and children, parents of disabled children still face the problem of finding out what is available and gaining access to it for their child.
This issue is further confused by fragmented social structure and a lack of standardisation. What one local authority does, a neighbouring authority may not. The Guardian (2005) referred to this as a 'Postcode lottery
' when reporting on a September 2005 Ofsted report. The report stated "services for children with special needs depend on where they live, not on what they need."
In addition to this, even when it has been established that services can be offered in an area, there are often breakdowns in communication within local authorities and confusion over where responsibility lies.
A 2003 Audit Commission report spoke about just this issue, and was covered in Disability Now (2003)
"One of the main problems encountered by the 240 families contacted for the research was the lack of coordination between local statutory services. Parents often found themselves passed from pillar to post because of a lack of information about entitlements and clarity over which agency was responsible for what, often having to repeat painful stories again and again."
Even simple issues such as accessing Disability Student Allowances can often take months of chasing up and fighting bureaucracy to overcome. This can lead to parents being unable to access the support when it is most needed. It seems that there is an attitude of reactive provision, rather than proactive service.
Additionally there are many areas where parents are offered a 'take it or leave it' service, with little say in how this is delivered. This lack of empowerment oppresses the disabled child, as often neither they nor their parents can control large aspects of their lives.
Lack of accessiblity and care provision also pose a problem for parents of disabled children. For example, the 'Changing Places' initiative, run by a group of organisations including Mencap, is currently campaigning to have appropriate changing facilities put into toilets across the country. The Changing Places website
(2006) tells the story of Toby, an 8-year old boy with multiple learning disabilities, whose mother Julie has to change him on toilet floors through lack of appropriate facilities:
"There are virtually no Changing Places toilets in the UK. For Julie and her family this places a huge restriction on where they can go and what they can do."
Overcoming stereotypes and misperceptions
A particular problem in media coverage is a reliance on stereotypes. Stereotypes are used by the media for several reasons:
- Laziness - stereotypical storylines, characters and articles are an easy option that carry no risk of upsetting the status quo
- Lack of understanding - writers and broadcasters genuinely believing and reporting on the stereotype
- Commercial interest - articles such as 'Dyslexia doesn't exist' are used to create controversy and sell newspapers
This presents a particular problem for parents who take some of their own knowledge of disability from the media. Indeed, an Early Day Motion in the House of Commons recognised this issue, mentioning the problem of parents abandoning babies of restricted growth due to a media-created stigma:
"That this House notes that approximately one in 25,000 births to parents of average heights is of a baby of restricted growth; that such babies are sometimes rejected by their parents because of the stigma associated with the disability; that children and adults of restricted growth and their families are subjected to a constant media barrage of thoughtless discrimination, comment and misplaced jokes via the media, the wider public and some professionals; notes the excellent work of the Restricted Growth Association and the Dwarf Athletics Association UK; and calls on those with influence in the media, in education and in the medical profession to present positive images of those with restricted growth, and to challenge the stereotypes associated with the conditions."
Parents of disabled children also face the task of having to try and re-educate society away from stereotypes and on what the reality actually is. This is doubly hard when they must also explain to their children why the media is misrepresenting them.
Parents face a multitude of tasks to ensure their disabled children are treated equally and have the support structures so that they can be independent members of society.
Things are changing in some areas. Access to support networks and general information on disabilities has been helped through the internet. The rise in technology has also helped disabled children to communicate on an equal footing.
Problems of access provision are slowly getting better, as the issue is more widely talked about and measures are put in place. Disability Now
(2003) reports on the creation of a Children's Minister, and the requirement for councils to "have a single named professional take charge of a coherent package of services for each child" as a major breakthrough for parents of disabled children. Another positive step has been the Council of Europe's (2006) commitment to "a co-ordinated approach in the provision of user-driven, community-based services and person-centred support structures" for disabled people.
The Council for Europe
(2006) also recognise the issue of doctors focussing on the medical model of disability. They state that, in relation to disabled people, healthcare services must be "respectful of clients' rights" and that health care professionals "focus more on the social model of disability".