I was one of those privileged to be chosen as a member of the Standards Advisory Committee [SAC] when it was set up in mid-2002—it seems much longer than under a year ago! As well as a general interest in the whole area of disability, I have specific experience of the field of intellectual disability as the father of a 34-year-old male with intellectual disability. Along with many similarly minded activists, I have been lobbying for years for the introduction of rights-based disability legislation.
But let’s go back a bit to where this all started. In the first Strategic Plan of the National Disability Authority (NDA) which covered the three years 2001-2003, the Mission Statement, inter alia, undertook to ‘advise on and monitor the implementation of standards for programmes and services, prepare codes of practice’ etc. This aspiration followed on directly from the provisions of The NDA Act (1999), under which the NDA was founded. Core values of the NDA include the adoption of a rights-based approach which seeks to ensure that the needs and rights of people with disabilities are enshrined in all aspects of Irish life.
SAC’s terms of reference
In early 2002, applications were invited from those interested (and subject to certain criteria) to participate in a SAC, which would advise the NDA on:
- The development and implementation of the NDA’s codes of practice programme, taking particular account of the priorities contained in the NDA’s Strategic Plan,
- The establishment of a process for the development of standards and codes of practice,
- The development of a monitoring process for those published codes of practices and standards,
- The presentation and dissemination of standards and codes of practice, and
- The recognition of standards, codes of practice and quality in the provision of services through an awards system.
In addition to the above terms of reference, the SAC has the following functions:
- Key role to play in advising the NDA—in particular, the Standards Section—in its planning and execution of the five areas mentioned above;
- Secondly, the Committee may be asked to comment on and review work of the Standards Section. The Committee will support some of the activities of the Standards Section in this way;
- The SAC will also help the NDA to position and establish itself more firmly in the disability sector;
- The SAC is seen as a think-tank and not a decision-making body or an independent group which promotes one particular quality or standards model.
Membership of the SAC covered a wide range of backgrounds and specialities—including individuals with a disability, parents of disabled people, service providers, health board representatives, various voluntary bodies, training specialists, representatives from the Dept of Justice, Equality and Law Reform, Social Services Inspectorate and the Dept of Health and Children. The committee also included specialist NDA officers and was very ably supported by the NDA Secretariat. In simple terms, the Committee was selected in such a way as to ensure that, as far as possible, all aspects of the problem would be explored and all likely views represented before any conclusions were reached.
At the first meeting of the SAC some key points were agreed, viz:
- A national consultation process involving all stakeholders was critical to the success of the exercise.
- The service standards would initially focus on services funded by the health system, but this should not stand in the way of developing standards in other areas in due course.
- Standards should be reasonable and achievable; include a standard on complaints management; be customer-based and customer-led; promote good practice and excellence; and lead to measuring performance.
The NDA undertook to supply the committee with a wide range of background papers on such subjects as quality systems, best international practice, codes of practice and overviews of national models including those of Australia, UK, the Netherlands and New Zealand.
During the summer of 2002 a series of consultation meetings were held throughout Ireland; these were specifically targeted at people with disabilities, their families and carers. These meetings raised very useful customer-driven concerns which helped the SAC in prioritising key policy areas, e.g. under such headings as transport, employment and training, education, health etc.
In order to drive the process along, an outside consultant was appointed and a ten-person working group selected from the SAC was put in place.
The final phase of this initial stage of the process was a national campaign inviting submissions about standards in four key areas: day services, residential/respite services, training services and home support services. This resulted in an excellent response from over 500 individuals spread across a wide disability, geographical and viewpoint range.
The design process
The second draft of the National Standards for Disability Services is now in the public arena and it would be nice to say that following a fairly exhaustive initial trawl of other systems and options, the model we went for emerged naturally from the thought process. In practice, our first few drafts were revised to such an extent that they were almost unrecognisable in the finished product.
Initially it was agreed to develop a combination of a generic set of standards covering all areas together with service-specific standards divided into clusters under four broad categories: residential and respite, day services, training and home support. Some reservations were expressed about the scale and ambition of the project, but it was felt that it was more important to develop national standards to ensure equity in service provision, as opposed to a more incremental approach.
After much reworking, a final first draft of the standards was completed by early December 2002 and presented to the NDA Board in January 2003. This draft was broken into three parts:
- Person-centred standards
- Organisational standards
- Service-specific criteria.
The hope was that the draft reflected both the views expressed in the 500-plus submissions received, allied with the best of international standards and practice.
The next stage
The first big test was to get an informed reaction to the First Draft. To achieve this a conference was held in Tullamore at the end of January 2003, followed by a series of local information sessions around Ireland. Some clear themes emerged from this process:
- Accessibility of language—there was a need to simplify
- Further clarification of the role of advocates
- Perspective of children, parents, guardians and carers needed strengthening
- Rights-based approach needed more emphasis
- Integration of service-specific criteria into the person-centred and organisational standards for greater clarity.
There were (and still are) broader issues of principle which were raised, e.g. the capacity of service providers to implement the standards without additional funding. My own, perhaps simplistic, view is that this is a matter for separate debate. The first priority is to agree on a set of standards against which providers can measure their present service and we can worry about implementation afterwards.
Another concern was that service is not something that can be measured by physical standards only, and that the ethos of a service provider is more important than a list of audited actions. Having worked in an industry where we had precisely this type of quality versus quantity (or, if you prefer, process) argument, I have great sympathy with this point of view. However, the sheer volume and strength of comments received from many service users make a very strong case for a clearer and more prescriptive set of minimum agreed standards.
The final stage
Consideration of all the submissions and arguments resulted in a radically revised Second Draft document which was then submitted to and accepted by the NDA Board. The plan was to then run a Pilot from April 2003 to October 2003, involving 21 different service providers. Disappointingly (particularly when all other aspects of the project have been completed on schedule)] it has now been decided to submit the Second Draft together with the full complement of tools to an independent research ethics committee, in order to ensure that all service-user interests are fully protected. Hopefully this process will be speedily completed.
Once the Pilot has been completed (Incidentally, the pilot should help to establish those standards which have cost implications.), and any suggested changes taken on board, the standards can go live to all disability services for children and adults with autism, intellectual, physical and/or sensory disability, funded by the Department of Health and Children and provided by both statutory and non-statutory agencies.
Monitoring the standards
As part of its statutory responsibility for monitoring the implementation of standards, the NDA will commission an external assessment of all services against the national standards by an independent and impartial body on a three-yearly basis. It is anticipated that service providers will take some time to adopt the new guidelines, with perhaps only 10% coming on line in year one. A significant number of the 116 standard criteria are mandatory and must be achieved by the service provider to become approved for registration. The remaining criteria focus on critical outcomes that an organisation should strive to achieve. Decisions on the registration of service providers are based on the assessment reports and may be rated, as follows:
- Registration with Excellence
- Registration with Quality
- No Registration.
In the case of failure to meet the standards, there will an independent appeals process. Where a service does not meet all of the mandatory criteria, the service will be required to improve its practice and apply for another assessment against its action plan within three months. Cases of persistent non-compliance will be reported to the Department of Health and Children. Such reports may, where appropriate, recommend the review, reduction or withdrawal of funding from a service provider.
This personal view of the process involved in developing National Standards is just a small flavour and not even remotely comprehensive in terms of either the thought processes, research, consultation or general project planning which went into the whole exercise to date. I am confident that the final outcome of the exercise will make a significant contribution to the development of appropriate standards for people with disabilities.