Equal opportunity and inclusion

"We wanted to involve parents with a range of disabilities, so that we could gain as wide an insight as possible into differing experiences."

Disabled mother, Maria Smith, describes the development, by the Cheshire Parents Advisory Group, of a self-assessment toolkit.

Set up in March 2003, a group of health and social services professionals, together with the Cheshire Disabilities Federation, in the UK, identified the need for a project to develop good practice on the theme of fair access to services.

First steps

Our starting point was fundamental: it was about equal opportunity and inclusion. The intention was to promote family independence and to make sure that professional interventions focus on 'support' rather than 'scrutiny'.

Five disabled parents from the Cheshire area were invited to join a project advisory group - the Cheshire Parents Advisory Group - along with a senior researcher and a project consultant. The one-year project was funded by Cheshire Children's Fund. Its objective was to deliver a tested and agreed self-assessment toolkit for disabled parents.

We woke up!

As a team, we thought about, and questioned, the term 'disabled', and decided to define its use for our project. We had the following thoughts.

A disability is not something that we carry around with us in a bag. It is something that society puts in front of us that prevents us from enjoying the freedom of life that the majority of society enjoys, for example accessible buildings. To give a personal example, I was born with malformed hips but I did not become disabled until I was 40. I had three children and I had always worked. It was not until my fourth child was born and I had an accident that I became disabled by the lack of access, equipment and parenting assistance available to me.

The toolkit was being developed to assist parents who are prevented from fulfilling their role as parents by these same constraints.

Our vision for the toolkit

We are, first and foremost, parents who, at times, require assistance with parenting skills.

We read as much as we could about disabled parents, we made new contacts, researched on the internet, found a wealth of groups and information for parents, and started to design a website. As our confidence increased so did our vision of how we wanted the toolkit to develop.

We decided that it was a priority to have an agreed working definition of an holistic assessment, to ensure that this encompasses the whole family and that services are not fragmented. We then went on to consider the range of parenting tasks that people may need assistance with and quickly realised that parents need to know about the assessment process and their rights. We then used the findings of our discussions to develop the toolkit. This includes a parenting support and needs self-assessment questionnaire, and information about community care assessment, direct payments and about who can help locally.

Our aims were in line with the National Family and Parenting Institute:

• to raise awareness of the importance of parenting and family relationships
• to change the climate of opinion so that people find it easier to ask for help.

A 'tool' not a 'threat'

We met monthly throughout the project, and organised meetings with other disabled parents within Cheshire. We wanted to involve parents with a range of disabilities, so that we could gain as wide an insight as possible into differing experiences.

We also involved professionals from health and social services. Their views were valuable, especially as we wanted professionals to perceive the toolkit as a 'tool' not a 'threat'.

As the project developed we saw that the uptake of direct payments by disabled parents for assistance with parenting skills was low and extremely patchy. It also became evident that different social services departments, even different social workers, used different interpretations of how direct payments could be used.

Words, ideas and ideals

We realised very quickly that different interpretations of words, ideas and ideals could cause problems. For example, the team discussed a diagram developed by disabled people, which describes the independent living concept - and all agreed with the ideals shown. Looking at it in more depth, however, made us feel that all the arrows pointing inwards towards the person felt oppressive and overwhelming. It's as though the disabled person is bombarded with rights given by others, as a totally passive recipient.

However, just by making a simple adjustment to this diagram - by simply reversing the direction of the arrows - it immediately feels better (see above). It now represents the disabled person having rights and choices within society.

Getting the message across

Although we didn't want to leave anything out, we also didn't want the toolkit to be off-putting. We therefore developed a user-friendly and accessible format, making the toolkit easy to read and inviting. Because we want the toolkit to be freely available to as many disabled parents as possible we wanted it to be available in large print, Braille, BSL, tape and widget formats. We also aim to have the toolkit as a free download on our website.

We now have the toolkit, and what happens next is the exciting bit. We are designing promotional information and developing training packages for professionals, voluntary organisations and parents' groups, so that we can get the message of equal opportunity and inclusion to as wide a range of people as possible.

We believe that by working together we can make a difference, but in order to do this we all need to have the same basic understanding of the family, and mutually agreed working definitions of government guidance. There are 2.1 million disabled parents with children under 16: we should not be invisible or an afterthought!

For more information contact: Cheshire Disabilities Federation.
Tel: 01606 888255 Fax: 01606 883292
E-mail: smithkyoko@aol.com

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