Listening to people with disability

Providing the service and supports that people with a disability have a human right to

A chara, – The Joint Committee on Children, Equality, Disability, Integration and Youth has published its Report on Assessments of Need for Children. This is a very helpful report and rightly calls for a review of the 2005 Disability Act, a significant increase in the numbers in training in the health and social care professions who will go on to work in disability, adoption of the United Nations Convention on the Rights of Persons with Disabilities optional protocol, and strengthening of the social and rights-model approach to disability services and supports. I am grateful that the committee has listened to and acted on advocacy on these and other crucial structural issues.

The report also makes two comments concerning the National Clinical Programme for People with Disability (NCPPD), which was established in 2020.

First, that “Input from disabled people, families, carers and therapists should be central to the design of the interim guidance for Assessment of Need”. In June 2022 we held a workshop with over 80 stakeholders, with all of these groups, and have new guidance in place, which will be launched following Government approval. Second, it asks “how many people with lived experience of having a disability are involved” in the advisory board of the NCPPD. The answer to this is that the independent chair of the advisory group, the clinical lead, and the person who has been the confidential recipient since the programme’s inception are all people with disability. There are also three positions specifically reserved for people with living experience of disability, and one of the service provider leads has also identified as a person with disability. So that is seven out of 22.

The other members include people from nine different professional groups, and service provider and community organisations, including the Disability Federation of Ireland, Inclusion Ireland, National Federation of Voluntary Bodies, and National Disability Services Association. This contrasts with some of the other clinical programmes in the HSE where all representatives on advisory groups are drawn from a single profession. In fact, the NCPPD approach has been highlighted by the International Centre for Evidence in Disability, in London, as international best practice in disability governance.

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We welcome opportunities to continually improve our approach and to work with the inevitable and creative tension that comes with including many stakeholders who do not all always agree, and do not always get all that they may wish for.

I believe that the report of the committee – if grasped and responded to positively by Government – will make a real difference in the medium and longer term, to providing the service and supports that people with a disability have a human right to. And which we who work in disability services, from whatever type of service provider, so desperately want to deliver. – Yours, etc,

MAC MacLACHLAN,

Clinical Lead,

National Clinical

Programme for People with Disability,

HSE,

Dublin 8.