Public services for children with special needs: Discrimination by diagnosis?
Dr Michael McDowell, Child Development Network, Mater Potter Building, 3/39 Annerley Road, South Brisbane, QLD 4101, Australia. Fax: 07 3010 3377; email: firstname.lastname@example.org
In July 2011, the Australian federal government announced expansion of early intervention funding. Children diagnosed with cerebral palsy, Down syndrome, Fragile X syndrome and hearing and vision impairments are now eligible in addition to the existing funding for children diagnosed with autistic disorders. By deciding who gets the funding according to a set of accepted diagnoses, many children with equivalent if not greater levels of early intervention special need are excluded. In this viewpoint, we consider the fairness of this approach, and argue that while it may make sense from a political point of view, it is hard to justify, and possibly even discriminatory, from clinical, ethical and legal perspectives.
In Australia, on 1 July 2011, registration opened for thousands of children with special needs (CWSN) to each receive up to $12 000 in funding for early intervention (EI) services and therapies. To access this funding, children require a diagnosis of either cerebral palsy (CP), Down syndrome (DS), Fragile X syndrome (FrX), autism (ASD) or impaired vision or hearing.
Soon after this announcement, two children, James and Joshua, both aged 3 years, are seen sequentially in consultation.
James has global developmental delay. His level of function is around a 2-year level with even greater impairments in language. His attention control is poor, his emotions dysregulated and day-to-day behaviour is challenging. Basic sleep and eating routines are a battle. He is not toilet trained or toilet aware. The medical cause for his problems is currently unknown.
James' social development is poor but appropriate for his development and language function, so he does not meet criteria for ASD. His motor control is very clumsy in quality. Without hard neurological signs, however, he does not meet criteria for CP. His vision and hearing are normal, and he does not have either DS or FrX as cause for his developmental disorder.
Joshua, on the other hand, seems bright for age. He is developing well. He was born prematurely and found to have increases of tone and reflexes in the lower limbs on his review assessments. Developmentally, he is managing motor control without marked delays, but has been diagnosed with CP.
We discuss government support services with both sets of parents. Joshua is eligible for EI services through the new federal initiative, but James is not, even though we judge his developmental needs to be clinically greater.
The currently funded diagnostic categories represent an eclectic set of diagnosis types (Table 1), including medical, physiological and behavioural. These types of information provide different profiles of information about a child's condition (Tables 2 and 3), serving an unequal basis upon which to select suitability for limited services. We can see no pattern or theme to this set of included diagnoses other than possibly reflecting the advocacy power of diagnosis-based lobbying.
Types of diagnosis and federal EI funding
Table 2. Types of information – What can be known about a child's condition
|Medical aetiology||Medical cause of the problem|
|Pathophysiology||Which biological systems are impacted and not working properly|
|Medical natural history||What is expected to happen medically over time without medical intervention|
|Disability/impairment||Pattern of strengths and weaknesses, what the child can/cannot do|
|Clinical severity||The degree to which impairments in the clinical profile fall below normal for age|
|Functional profile||Pattern of day-to-day life functions and tasks affected, and degree to which these are affected|
|Developmental profile||Extent to which the problem has impaired normal developmental processes, how far ‘behind’ the child is compared to normally developing children|
|Developmental natural history||What is expected to happen developmentally over time without intervention|
|Expected response to intervention||The extent to which the condition will respond to developmental interventions, the extent to which intervention may alter the developmental natural history|
Table 3. What different types of diagnosis tell you
|Medical natural history||+||+/−||−|
|Developmental natural history||+/−||+/−||+/−|
|Expected response to intervention (RTI)||+/−||+/−||+/−|
This viewpoint paper considers the issue of providing government assistance for CWSN through diagnostic category-based entry criteria. We do so from several perspectives: ethical, clinical, legal and political.
The new initiatives represent progress compared to providing nothing at all, so, by definition, this is ethically good. We recognise the need for treasury to limit budgetary expenditure to a reasonable sum. The question of ethics and equity is less about the total expenditure, and more about how that expenditure is distributed.
As clinicians, it is hard to morally or ethically accept a system that supports some children, yet does not support other children who, from a clinical perspective, appear equally if not more needy.
The question of access to diagnostic services presents another ethical concern. The current system disadvantages children whose access to diagnostic assessment is limited either because of money (long public system waiting lists to see medical specialists), distance or both (such as indigenous children).
To avoid discrimination within a system that allocates assistance based on categorical diagnosis alone, two assumptions must be true. Firstly, it is assumed that it is possible to allocate a diagnostic label to all those suffering significant impairment requiring EI. This is not true, as there are many conditions that are not well captured through current diagnostic systems.1
The second assumption is that it is possible from a diagnosis to determine those suffering equivalent degrees of disability and impairment. As can be seen from Table 3, there is little inherent in the diagnosis itself that identifies degree of impairment or intervention need. We know of no clinical reasoning, or research regarding natural history and treatment efficacy, that indicates that the current eligibility categories are more clinically worthwhile.
More specifically, we know of no comparative research indicating these diagnostic categories are more likely to benefit from EI services, than other categories of diagnosis that produce similar or even greater functional and developmental impairment.
The current system fails to address the need of children who have:
- 1Single severe conditions that are not included, yet lead to similar levels of impairment;
- 2Multiple diagnoses, each of which are not included, yet the combination of the impairments is greater than a single severe diagnosis;
- 3Conditions where the diagnostic picture is unclear, the natural history is uncertain and clinicians would prefer to defer definitive diagnosis pending a child's response to intervention (RTI).2 This is frequently the case in young children presenting with developmental and behavioural concerns, where good clinical practice dictates against the premature application of diagnoses of lifelong significance.
In Australia, we do not have legislation, such as the American Federal Individuals with Disabilities Education Act,3 that specifies the rights of children with disabilities to EI and educational services.
If the current system were to be evaluated legally, the basis of this consideration is likely to be discrimination law. Both federal (Disability Discrimination Act 19924) and state legislatures have discrimination laws.
From a federal perspective, the EI funding is a new business in that it involves direct funding of services, rather than passing funds to states. There has been direct funding via Centrelink with the Carer's Payment and Allowance; however, these mix both categorical and functional criteria for eligibility. Funding for EI services is solely based on diagnostic category.
Considering the federal legislation (Table 4), one purpose of the law is to eliminate discrimination on the basis of disability with regards to education and services. The law addresses discrimination with regards to access to education generally, and educational benefits specifically. With regards to services, which include those provided by government, the issue of discrimination relates to the terms and conditions by which access to those services are controlled.
Table 4. Federal Disability Discrimination Act 1992 (selected sections)
|Part 1.3 Objects of the act.|
|The objects of this Act are|
| (a) To eliminate, as far as possible, discrimination against persons on the ground of disability in the areas of:|
| • work, accommodation, education, access to premises, clubs and sport; and|
| • the provision of goods, facilities, services and land|
|Part 1.4 Interpretation (Definition of Services)|
| (f) Services of the kind provided by a government, a government authority or a local government body.|
|Part 2, Division 2 (22) Discrimination in Education|
|It is unlawful for an educational authority to discriminate against a person on the ground of the person's disability:|
| • By refusing or failing to accept the person's application for admission as a student; or|
| • In the terms or conditions on which it is prepared to admit the person as a student|
|It is unlawful for an educational authority to discriminate against a student on the ground of the student's disability:|
| • By denying the student access, or limiting the student's access, to any benefit provided by the educational authority|
|Part 2, Division 2 (24) Discrimination in goods, services and facilities|
|It is unlawful for a person who, whether for payment or not, provides goods or services, or makes facilities available, to discriminate against another person on the ground of the other person's disability:|
| • By refusing to provide the other person with those goods or services or to make those facilities available to the other person; or|
| • In the terms or conditions on which the first mentioned person provides the other person with those goods or services or makes those facilities available to the other person; or|
| • In the manner in which the first mentioned person provides the other person with those goods or services or makes those facilities available to the other person. |
As clinicians rather than lawyers, we are in no position to evaluate the legality of the current EI funding arrangement. There is no clause in the legislation indicating the legality or otherwise of diagnosis-based access to government services; however, the general points of law seem to raise concerning questions.
In our home state of Queensland, the law is the 1991 Anti-Discrimination Act.5 Category-based access to special education services has been present in Queensland for many years. We do not know the extent to which there have been any contested cases or whether matters have been settled out of court.
The introduction of unified federal systems for all Australians opens the question of discrimination by state. The diagnostic categories that are recognised and funded within education systems differ state by state, so that the additional educational services CWSN receive can be defined by postcode.
This differential access with regard to eligibility for government disability services occurs not only according to state, but also according to educational system within each state. In Queensland, for example, Catholic Education provides special needs support for mental health disorders (social-emotional verification) whereas Education Queensland does not.
As non-politicians working clinically within the system, two issues appear to be of importance: political benefit (limiting expenditure, perceptions of the voting public) and the ease of administration.
From a treasury perspective, fixed disorders appear to provide a natural limit to projected expenditure. This may falter around diagnoses that require clinical judgement, and where the epidemiology is less certain. With the inclusion of ASD, diagnosis rates for this condition have increased. This is because clinicians are more likely to finalise uncertain diagnoses if they believe this to be in the best interests of the child.6 We wonder if the same is to occur for CP.
Current choices for inclusion diagnoses may well reflect effectiveness of advocacy from groups based around definable medical conditions. Our argument is not against these groups, but rather directed to a decision-making process that leads to advocacy-driven outcomes rather than global public good. Parents of children who have developmental, genetic or neurological disorders are likely to be fatigued, stressed and not politically organised, making a coordinated public outcry difficult. For parents of impaired children for whom the medical aetiology is unknown, the barriers to effective advocacy are even more formidable. If choice of diagnosis-based service reflects advocacy power, many children and families are simply left behind.
Any public system requires an administrative implementation. A category-based system seems simpler to administer. The documentation of FrX or trisomy 21 is easier to process than interpretation of a standard early childhood developmental assessment. So for administrative ease, as well as political expedience, the current system does make some sense.
In the current political debate, there is consideration of a national insurance scheme for disability. As this applies to children, is it going to be based on diagnostic category?
What Could be Done Instead
We applaud the federal investment of taxpayer funds into EI. One concern in our professional community is that if the current processes are criticised, the risk increases that what is currently provided will be withdrawn. This seems to be a rather fearful approach to democratic debate and the pursuit of excellence.
If we were to propose an alternative system of greater fairness, and reduced liability, the following steps are offered for consideration:
- 1Begin with a collation of what is already offered. In Queensland, this includes services provided by health (public and private), education, disability services, non-for-profit organisations and federal money through Inclusion Support for kindergartens and pre-schools. The new system adds more fragmentation to what is already a difficult maze of options for parents.
- 2The total amount of money put aside for EI we suggest should be a political rather than a clinical decision. This means defining budgetary allocation separate to the system of distribution.
- 3Define entry into the system based both around category (disorders known to require EI) as well as functional profile and need for those children not captured by the categorical criteria. This system is currently used for Centrelink payments. Tools for measuring functional impairment exist (e.g. references7–9). Clinical assessments can then be directed towards broad functional profiling, rather than simply ruling diagnoses in or out.
- 4Define level of service, and individual child funding according to need, which will vary from child to child. We would suggest that this should include functional profile, clinical severity and access to services of different kinds.
- 5Link ongoing funding to treatment plans, intervention strategy, intervention goals, progress evaluation and review cycles. One working example in developmental disorders is the RTI2 framework, which does not require a diagnostic label for initiation.
- 6Administer the process through a single point of contact for parents, with funding and services distributed through existing agencies. This hopefully begins to address the overlaps, redundancies, fragmentations and gaps of current services.
- 7Include in the funding the requirement for transition planning to structured education, and levels of support required once the children reach school age.
The question of how to put these principles into an achievable public process is beyond the scope of this viewpoint.
Current systems of diagnosis-based funding, while providing services for some, seems to open up inequity gaps, increase fragmentation of services provided via different government departments, raise ethical and legal questions of discrimination and ultimately disadvantage some children while helping others. We write to encourage debate, and perhaps the courage to think differently.