Has the AON process advocated for children’s needs or increased inequities for vulnerable children? How one HSE area responded to this clinical and ethical dilemma by promoting equity of access for all children.
On June 1 2007, Part 2 of the Disability Act 2005 became law for children under 5 years of age. Under Part 2 of the Act, children with disabilities have a right to:
- an independent assessment of their health and educational needs arising from their disability
- an assessment report
- a statement of the services they will receive.
Who can apply for an assessment?
Any parent who feels that their child aged under 5 may have a disability can apply for an assessment. ‘An application can also be made by a guardian. There is a provision under the Act for a personal advocate to be assigned by the Citizens Information Board.
What is an Independent Assessment of Need?
An independent assessment of need is an assessment of the full range of your child’s needs associated with his or her disability. The assessment report details your child’s health and educational needs and the services required to meet those needs.
Who will carry out the assessment?
Your first point of contact is your local Assessment Officer— each Local Health Office has an Assessment Officer. They can assist you with your child’s application and help and support you through the process. The Assessment Officer is responsible for issuing your child’s assessment report. The assessment is independent, based solely on your child’s disability needs, and is carried out regardless of the cost or availability of services. All assessments will be carried out in line with the standards developed by the Health Information and Quality Authority (HIQA). You will be encouraged to take part in your child’s assessment.
Where do I apply?
Applications must be made in writing on a standard form which is available from the Assessment Officer in your Local Health Office.
How long will it take?
Your child’s assessment must start within three months from when the completed application form is accepted by the HSE. It must be completed within a further three months from the date on which the assessment commenced. In exceptional circumstances, the assessment may take longer than three months, but it must be completed as soon as possible.
What happens next?
When the assessment is complete, a HSE Liaison Officer will prepare a service statement for you. The service statement , which will be prepared within one month of the completed assessment, will say what services and supports will be provided to your child. You will receive your child’s assessment report and service statement at the same time.
What can I do if I am not satisfied?
The Disability Act 2005 provides for a special complaints and appeals procedure which you can use if you are unhappy with your child’s assessment of need or service statement. You may complain on the following grounds:
1. The Assessment Officer decides that your child does not meet the definition of disability according to the Act and you disagree.
2. Your child’s assessment was not started or completed within the timeframes specified under the Act (as given above)..
3. You believe that your child’s assessment was not carried out in line with the standards for assessment of the Health Information and Quality Authority.
4. You believe that the content of your child’s service statement is inaccurate or incorrect.
5. Your child has not received a service that is detailed in his or her service statement.
You can make a complaint at any stage after you have submitted a completed application form for an assessment of need to the Assessment Officer. The regulations associated with the Disability Act ask that you complain within three months of the date on which you became aware of the cause of the complaint.
Has the AON process advocated for children/s needs or increased inequities for vulnerable children?
How one HSE area has responded to this clinical and ethical dilemma Equity of service provision is a central plank of government, national and HSE policy. Yet the AON process may have increased the risk of inequities of service delivery to vulnerable children. Anecdotal evidence suggests that the AON process is being operated differently in the various HSE areas. Indeed, within the same HSE areas psychology, occupational therapy, physiotherapy, speech and language therapy departments have taken different views on the prioritisation of children under 5 years of age with a developmental delay. In many instances professional resources were diverted to the AON process without any additional resources being provided. This severely impacted on service delivery as there was a stronger focus on assessment to the detriment of intervention services.
Routine referrals versus AON referrals
Informed and motivated parents of children with developmental delay (0-5 years) who initiate the AON process to have their children assessed are prioritised by most services. This is based on the legislative framework and its imposed timeline pressures. Children with developmental delay (0-5 years) who may have higher clinical needs, but who are referred to routine waiting lists, and whose parents may be less well informed, are not prioritised.
The clinical and ethical crux is that there is a two-track process. Track One: A prioritised AON route. Track Two: A nonprioritised routine referral route. Those children with higher clinical needs in the routine route are slower to access services, as professional resources are often diverted to meet the legislative demands of the AON process. Hence the AON process which was intended as a shield has the propensity to act as a sword, increasing the inequities for children.
In HSE Carlow/Kilkenny the Psychology Service informs all families whose children are under 5 with a suspected developmental delay of the following information in order to promote equity of access, ethical practice and future service delivery. All parents/guardians are encouraged to initiate the AON process for their children who require psychology services and are eligible for the AON process. While parental choice must be maintained, and the psychology service acknowledges the right for parents/guardians not to have their child assessed via the AON process, the service would like to ensure that parents make an informed choice. Parents are told of the differences in waiting times for those children on the AON waiting list (which has the legal timeframe of 12 weeks) and the standard waiting list which may involve a delay of up to a year.
Why do the psychology services recommend that all eligible children are seen within the AON process?
◆ Because of the differences in waiting times.
◆ Because the AON Process is prioritised and the Standard Route is not prioritised.
◆ It’s more equitable and ethical that eligible children are seen by psychologist based on clinical need, not by the referral process.
◆ The AON process allows for planning of services for children with developmental delay from the preschool period (0-5 years), to the school-age period (6-18 years) and into adulthood (18 years +).
◆ If children’s needs are not mapped early on, later service provision will be further limited.
Where do we go from here?
Parents’ experience of the AON Process needs to be evaluated to ascertain if their children’s needs are being met. Anecdotal evidence suggests that while the parent has the statement of service need, there is immense frustration with the lack of intervention services.
Evaluation needs to take place in terms of how the AON process (including prioritisation on clinical or legislative criteria) is being utilised throughout Ireland.