The NIHRC Blog #10

This month’s blog post is written by our Chief Commissioner, Les Allamby.

Nothing about us, without us

‘Nothing about us, without us’ has become a rallying cry for people with disabilities to be integral and essential contributors to service delivery across all sectors of society stretching beyond health and social care. This mantra is important because it works and makes for better decisions, more effective policy making and, ultimately, will lead to improved outcomes and impact. It also is achievable – if we have the leadership, will and determination to abide by it.

A concrete example of the importance of participation being embedded into practice is international human rights treaties, particularly the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the UN Convention on the Rights of the Child.

I recently met Professor Theresa Degener – the chair of the UNCRPD committee responsible for the body which monitors signatories to the Treaty, including the UK. She is an extremely impressive advocate from Germany. Sixteen of the 17 members of the committee have a physical, mental or intellectual impairment – none of which has prevented the committee from making its mark on the global stage.

The UNCRPD was adopted in 2007, came into force almost ten years ago in May 2008, and was ratified by the UK on 8 June 2009. Ireland is about to ratify the Convention (belatedly so) and will be the last EU member state to do so. The Convention creates relatively few new rights, but examines existing rights through a disability lens. The Convention recognises the right to legal capacity in decision-making (Article 12); the right to personal autonomy, particularly through the recognition of the right to independent living and community inclusion as a human rights issue (Article 19); the right to participate in public and political life (Article 29); and that persons with disabilities and their representatives shall be fully involved in monitoring signatories progress in meeting their obligations. As part of that process, an Independent Monitoring Mechanism for Northern Ireland (IMNI) has been set up, involving a partnership of the Human Rights Commission and the Equality Commission.

So how is Northern Ireland doing in practice?

IMNI has commissioned two pieces of work - from Disability Action in 2012 and more recently from Queens University. The first report identified gaps in implementing the Convention, including in awareness raising, participation in public and political life, access to information and data collection. Meanwhile, the second report highlighted deficiencies in the fields of equality and non-discrimination, independent living, education, health and the right to an adequate standard of living and social protection.

The Commission undertook a human rights inquiry into health care in Accident and Emergency Departments: one of the benchmarks used was active participation and involvement in planning and receiving services. We found good practice - lots of it - but it often did not roll out across the Trusts, despite a commissioning model and integration of health and social care - both of which should have increased the prospect of effective co-ordination. We found good ideas from community-based organisations being accepted, such as ‘the card before you leave’ (which guaranteed an appointment with a mental health team before leaving A & E) was being implemented in a patchy way. We heard about the patient passport, which allows a person with a rare disease to communicate specific needs, being implemented both poorly and effectively – with one case in which a young woman with a latex allergy had her passport ignored in one hospital with serious consequences, while in another hospital she was listened to, and given the appropriate treatment with no deleterious consequences.

Research suggests that genuine and effective participation when making decisions in health and social care is multi-faceted and is influenced by:

· The availability of resources (both time and money)

· The practices and attitudes of professional

· The provision of information

· Adequate preparation for decision-making and on-going support and

· In the case of children’s services – the actions and attitudes of parents

Participation requires creativity and an attitude of mind - but it is possible.

The UNCRPD concept of participation and the right to be listened to – and heard – is not a power of veto or absolute control, but a recognition that people with disabilities - including those with rare diseases - are experts by experience, and have something important and meaningful to say about service delivery and in policy and strategic development.

We are moving forward but there is a great deal of work still to be done.