In June 2007, the Disability Act 2005 was implemented in respect of children
under five years of age. This has been interpreted as meaning under five years
of age at the time of application. It will be implemented for the 5 to 18 age
group in tandem with the Education for Persons with Special Educational Needs
Act 2004 (EPSEN) and it will be implemented for the whole population by 2011.
The Act is a part of the government’s Disability Strategy which
- 6 Sectoral Plans produced by the following departments:
Department of Health and Children
Department of Social and Family Affairs
Department of Enterprise, Trade and Employment
Department of Transport
Department of Communications, Marine and Natural resources
Department of Environment, Heritage and Local Government
- Multi-Annual Investment in Disability Services
- EPSEN Act 2004
- Comhairle Amendment Bill 2004—Citizens Information Act 2007
The Disability Act is in seven parts covering a variety of topics. For those meeting the definition of disability contained in the Act, Part 2 provides for the right to an assessment of the health and education needs occasioned by the disability, the right to a statement of what services will be provided to meet those needs and a redress system.
This article concentrates on the main aspects of the assessment of need process—it is not possible to go into greater detail in the space available.
The process is covered by its own specific redress system which allows for referral to specially designated Complaints Officers and onwards to an independent Appeals Office. Points of law may be referred to the High Court. Details of the redress system form a part of the explanation that families receive when they first make an application for assessment.
The relevant definitions contained within the Disability Act are as follows:
‘Disability’, in relation to a person, means a substantial restriction in the capacity of the person to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment.
Section 7 (2):
In the definition of ‘disability’ in Section 2, ‘substantial restriction’ shall be construed for the purposes of this Part as meaning a restriction which is permanent or likely to be permanent, results in a significant difficulty in communication, learning or mobility or in significantly disordered cognitive processes, and gives rise to the need for services to be provided continually to the person whether or not a child or, if the person is a child, to the need for services to be provided early in life to ameliorate the disability.
Thus, there must be an impairment of one or more of the types listed in section 2, which is enduring and which results in a substantial restriction in a person’s capacity to participate in social or cultural life, and which is permanent or likely to be permanent, and which, in turn, results in significant difficulty in one or more of the four areas of functioning listed in section 7 (2) (a), and which gives rise to the need for services to be provided continually or, if the person is a child, in the need for services early in life to ameliorate the restriction in the capacity to participate.
All of the terms in italics above are important and require interpretation. In particular, it is important to note that the ‘substantial restriction’ refers to a restriction in a person’s capacity to participate. It does not refer to the impairment. This is important as it is this restriction in capacity to participate that must be ‘permanent or likely to be permanent’ according to the definition in the Act.
Another important characteristic of the definition is that all the criteria must be met. Careful attention must be paid to the Act’s use of the words, ‘and’ and ‘or’.
The HSE and the Department of Health and Children are working towards the situation in which these terms are applied as consistently as possible. Detailed guidance has been, and will continue to be, developed in this regard. This entails extensive dialogue with representatives of people with disabilities, health professionals, service providers and other interested parties. The HSE regards this as a process of continuous improvement.
Application is made to the Assessment Officer in the Local Health Office. In the first instance, it is the Assessment Officer who will explain the process to the applicant, ensure that all relevant information is available and arrange for the relevant assessments to be carried out. Information leaflets have been distributed to key points such as health centres and doctors’ surgeries and information is also available on the HSE website.
The Act stipulates that the assessment will be in relation to the health and education needs ‘occasioned by the disability’. Leaving aside the education needs, this means that any health need that the person has as a result of their disability must be taken into account. This includes all health needs and not just those historically seen as being met by specialist disability services. The services concerned may be provided within either the statutory or non-statutory sectors and may be provided within acute or community-based services. Thus, the Act applies to all such service providers. If an education need is identified, referral is made to the National Council for Special Education for assistance in assessing that need. Their findings are forwarded to the Assessment Officer for inclusion in the final Assessment Report.
Two important aspects of the assessments are that they must be carried out without regard to resources or capacity to deliver and that they must adhere to the standards for assessment which have been adopted by the Health Information and Quality Authority (HIQA). These standards require that the process be person-centred, encourage family involvement, be outcome focussed, be accessible, involve appropriately trained staff, be effectively co-ordinated and that adherence to these standards be monitored.
The Assessment Officer will ask assessors to carry out assessments according to their area of expertise and to make a clinical judgement as to whether the person meets the definition of disability as contained in the Act and outlined above. Standard documentation is provided for this purpose.
On completion, the various assessments are returned to the Assessment Officer who compiles an Assessment Report, the contents of which are defined in the Act. In the event of the applicant meeting the definitions, the overall purpose of this report is to provide details about the needs which have been identified, the services that are required to meet those needs and the optimum timeframe for those services to be provided. Bearing in mind that resources and capacity are not to be taken into account, this is, in effect, the gold standard. All needs arising from the disability are listed, whether or not they can be met.
Issues for assessors
Meeting the definition of disability
A glance at the list of terms involved in the definitions will be enough to suggest that assessors may be faced with some difficult decisions when judging whether or not a person meets that definition. The language used in the Act is clear in that there is an ‘and’ between the two clauses which further define ‘substantial restriction’. Thus, all the criteria must be achieved.
In particular, it may not be easy to tell whether or not a child’s substantial restriction is permanent or likely to be permanent. However, assessors are asked to make a judgement based on the information available to them. Space is provided on the standard documents to allow assessors to expand on their decisions and to qualify them, if they feel it necessary.
Providing reports to parents
The individual assessments eventually form a part of the final Assessment Report and the Assessment Officer must make a determination (based on the individual reports) as to whether or not an applicant meets the definition of disability as contained in the Act. This leads to a potential conflict between the requirements of the Act and established clinical practice.
Some clinicians regard it as good practice to hand a hard copy of their assessment to the applicant or their family following that assessment. The HSE’s current practice is to request that these reports be forwarded to the Assessment Officer first to enable them to reach a decision as to whether or not an applicant meets the definition. This practice was designed to ensure that families did not receive only a part of the total picture. Discussions are continuing to ensure that issues raised by clinicians about this practice are discussed and addressed in the best interests of the person with a disability.
Challenges to established practice
As with the introduction of any legislation in the health and social services field, there is the potential for differences of this nature and for established practice to be challenged. Those involved in the implementation of the Act will continue to talk to all stakeholders with a view to ensuring that our obligations under legislation and our obligations to our service users are married harmoniously.
The HSE regards the Disability Act not as an obstacle to our existing practice to be overcome, but as the framework within which we will be doing our business in terms of assessing and delivering services to people with disabilities.
Meeting the timeframes
Another obvious issue for those receiving requests to carry out assessments under the Act are the timeframes. As the legislation and the Regulations accompanying the legislation lay down certain timeframes for the process, a request for an assessment made under the provisions of the Disability Act carries with it the force of that legislation and therefore must take priority over other assessments which may have been requested of the assessor(s), if there are competing pressures.
Some clinicians face an ethical dilemma in this regard. They have legal obligations under the Act which puts pressure on them to carry out assessments for people ahead of assessments required for others who may have been on their waiting list for longer, but who were not referred through the assessment of need process under the Disability Act.
Naturally, speech and language therapists, occupational therapists, physiotherapists, psychologists, psychiatrists, etc. will not necessarily have the same understanding of what constitutes a ‘significant difficulty’ within their area of expertise. The HSE is engaging with its own staff, staff in voluntary sector agencies and with professional bodies with a view to reaching as high a degree of consistency as possible in terms of the interpretation of this and other terms used in the Act.
Similarly, work is underway to achieve greater consistency across the country in terms of what constitutes an assessment of need both generally and within a given discipline.
What happens to the assessment report?
Once the Assessment Officer has received the various assessments and has compiled the Assessment Report, it is sent to the Liaison Officer. (The HSE has employed Case Managers and has designated them as Liaison Officers under the Act. Therefore both terms are in use.)
The job of the Liaison Officer is to negotiate with relevant service providers to provide services to meet the needs identified in the Assessment Report and to write a ‘Service Statement’ detailing what will be provided. In the case of children, the Service Statement will not contain any reference to education. The major difference between this stage of the process and the previous stage is that the assessments must not take resources or capacity to deliver into account, but the Service Statement will only contain details of services which can be provided within the resources available. This process is completed in close cooperation with the family.
The completed Assessment Report and Service Statement are then issued to the family at the same time. The family will therefore have a full statement of the health and educational needs of the child and a statement of exactly what health services will be provided, who will provide them, and when and where they will be provided.
It is clear that we are not in a position to meet all of the needs identified for every individual. However, the Act provides for greater clarity for families and, very importantly, obliges the HSE to submit an annual report to the Minister for Health and Children providing detail about the needs which are not being met, an indication of when the services required should be provided, the sequence in which they should be provided and an estimate of the cost involved.
The government will therefore be in possession of the information necessary to allow it to make the resources available to develop the services over time that will meet the needs of people with disabilities.