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Protecting access to healthcare for persons with disabilities

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The World Disability Day is celebrated on December 3 every year and Nigeria can now rightly join the global community in the celebration of this event having enacted a national disability law. The Discrimination against Persons with Disability (Prohibition) Act 2018 (DAPDA) was signed into law by President Muhammadu Buhari in February 2019 after several years of waiting and anxiety by the disability community in Nigeria. This law, for the first time, has made significant provisions for the protection of the rights of persons with disabilities in some measurable conformity with the Convention on the Rights of Persons with Disabilities (CRPD).

Significantly, it prohibited discrimination against persons with disability on grounds of their disability and mandates the Federal Ministry of Information to create awareness of the rights, respect and dignity of persons with disabilities, their achievements, capabilities and contributions to the society. Although it did not make any specific provision for children with disabilities and their families, as was done by the CRPD, it created a National Disabilities Commission, which was inaugurated in August 2020, 18 months after the law was signed by the President. About 26 states in the Federation have also enacted disability laws in their jurisdiction with agencies and commissions to oversee the enforcement and implementation of the laws.

Children with disabilities are one of the most marginalized and excluded groups in society, and oftentimes by their governments. Facing daily discrimination in the form of negative attitudes, lack of adequate policies and legislation, they are effectively barred from realizing their rights to healthcare, education, and even survival. Children with on-set childhood disabilities such as cerebral palsy, autism, epilepsy, dawn syndrome and other medical complexities arising from circumstances of birth should not be denied the right to access health care services guaranteed by law. It is therefore notable that the Convention on the Rights of Persons with Disabilities (CRPD) recognised the challenges faced by children with disabilities and their families with potential to hinder their health care and socio-economic development, deny them communal living and limit their contribution to national development.

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Good governments all over the world look after its citizens through the various programs designed to uplift the well being of their people. Multiple Nigerian governments since independence in 1960 lag behind in pushing for and implementing programs of good governance especially with respect to children with disabilities. Their actions fall short of the recognized international norm or lacks what Fukuyama aptly described as “a good state institution … one that transparently and efficiently serves the needs of its clients – the citizens of the state… the quality of the public agency’s output greatly depends on the feedback it receives from the ultimate consumers of government services” in State Building – Governance and World Order in the Twenty-first Century.

One important milestone of the CRPD ratified by Nigeria, and the Convention on the Rights of the Child (CRC) is the provision requiring that in all actions concerning children, (whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies) the best interests of the child shall be a primary consideration. The Best Interest of the Child principle has been described as a consideration of “all the elements necessary to make a decision in a specific situation for a specific individual child or group of children”. I have argued elsewhere “what is the best interest of the child is a function of determination by the administering authority at that point of determination …. a health care professional, a judge, the legislator, private or public welfare officer or institution, etc. must ensure that the action taken is in the best interest of the child as can be deduced from law and the peculiar facts of each case.”

Although no similar provision as the CRPD is contained in DAPDA, the Child Rights Act 2003 (CRA) has domesticated this principle and mandated that every child is entitled to enjoy the best attainable state of physical, mental and spiritual health. Section 13 of the law directs that every government in Nigeria shall ensure the provision of necessary medical assistance and health care services for children, and that every child who is in need of special protection shall have the right to such measure of protection as is appropriate to his physical, emotional and mental needs and under conditions which ensure his dignity. Article 13 of the African Charter on the Rights and Welfare of the Child ratified by Nigeria provides that every child who is mentally or physically disabled has the right to special protection to ensure his or her dignity, promote his self-reliance and active participation in the community. Article 14 provides that every child has the right to enjoy the best attainable state of physical, mental and spiritual health and the provision of nutritious food and safe drinking water, as well as adequate health care.

It is my submission that the National Disabilities Commission has a duty to examine the interplay of jurisprudence and the practice of law and medicine to ensure the best interest of the child in the protection of the right of access to adequate health care services for children living with disabilities and their families in Nigeria. Effort must be made by the Commission to marry law with action in the enforcement of the rights assured by DADPDA for children with disabilities. It is my contention that even though domestic laws may, in some cases, be inadequate, there are sufficient global instruments and conventions to ensure the application of the best interest of the child principle in both jurisdictions and consequently, administering authorities should be bold and courageous in establishing the principle as a right rather than a welfare benefit.

The best interest principle must be recognised or cognizable as a core mandate in the right of access to health care services, and efforts must be made to create awareness of its existence and application by stakeholders. To what extent are children with disabilities or their families permitted by health care service providers and or their families to determine or make an input into their health care needs and services? Are children with disabilities who are capable of forming their own views assured of the right to independently express those views freely in matters affecting their health care needs? This is because, as John Locke wrote, “the power that parents, then, have over their children, arise from that duty, which is incumbent on them, to take care of their offspring, during the imperfect state of childhood. To inform the mind, and govern the actions of their yet ignorant nonage, till reason shall take its place, and ease them of that trouble, is what the children want, and the parents are bound to….”

This is equivalent to the power government wields over its citizens, propelled by the will of the people but executed or carried out to advance the well-being of all persons, including children with disabilities. This is anchored on justice, international norms on the concept of best interest of the child regardless of their ability, and the concept of citizenship rooted in liberty and freedom. There is a plethora of “theories (which) have since littered intellectual landscapes while shifting lineages of thought have contested the field as rivals to seek primacy, funding and influence on direct policy.” Regardless of these theories, the Commission should offer a practical solution that will evolve and sustain the principle of the best interest of the child as a cardinal policy of the Nigerian government, to act justly to all citizens, especially children with disabilities, a part of the future glory of the nation, regardless of their health or physical circumstances. It will also enhance the application of the duty of care and responsibility owed by government to children with disabilities as absolute and not negotiable.

Any government that fails to provide for the weak, the sick or the vulnerable would fall short of the admiration Burke canvassed in his treatise, to wit: “I think I envy liberty as little as they do to any other nation.

But I cannot stand forward and give praise or blame to anything which relates to human actions, and human concerns, on a simple view of the object, as it stands stripped of every relation, in all the nakedness and solitude of metaphysical abstraction.” Putting practical process in place to advance the best interest of the child, especially for children with disabilities is a sine qua non to good governance. The Commission must, in the words of world-renowned global health law expert, Prof. Obijiofor Aginam, “… explore the extent to which socio-economic disparities among countries in a divided world exclude the ‘underdeveloped’, ‘developing’, ‘poor’, and ‘Third World’ countries from sharing in the beneficial dividends of health as a public good…”

The principle of rules and value articulates the conception, embraced by the unreflective view of society, that the eternal hostility of men to one another requires that government maintain order and freedom under law. This will enable conclusion of what justice means for children who are incapable of helping themselves due to disability or fully pursue their dreams because government policies ignore their existence. The concept of justice and protection under law and the Constitution for children with disabilities is etched in the philosophy that justice is the idea of citizens as free and equal persons, and the idea of a well-ordered society as a society effectively regulated by a public political conception of justice.

Accordingly, the courts, policy makers, citizens, implementation agencies, legal and health care experts must have knowledge of existing disability laws, instruments and the best interest principle as mandated by DAPDA, and apply and uphold the ethics and oaths of stakeholders/practitioners in their engagement with children with disabilities. The question, however, is: has the nonchalance and ignorance of the principle been a deliberate exclusion and discrimination process orchestrated to repress the right of access of children with disabilities to adequate healthcare? Employers of labour, colleagues of parents of children with disabilities and revenue collectors feign ignorance and are yet to demonstrate an understanding of the peculiar turf of parenting children with disabilities, and consequently, no allowances are made to accommodate loss of work hours spent in hospital waiting rooms with the child or extend tax credits to the working parent to cushion cost of medical care as obtains in other jurisdictions globally.

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Although the National Health Act 2014 provides that children with disabilities are entitled to free medical care, parents of children with disabilities are going through horrendous experience to get hospitals and health management organisations to ensure the application of this law. One of the greatest challenges to the health care of children with disabilities is the drudgery of the National Health Insurance Scheme. Health insurance should and must be mandatory for all children with disability as of right. With health insurance for the child, her parents, over-burdened and saddled with humongous costs for the maintenance of the child, will focus on assisting the child with her other needs rather than worry much about funding the huge expenditure bills arising from providing assistive technology, myriad health challenges, drugs, etc.

The creation of awareness is key to the engagement of a vibrant process to ensure the implementation of the principle. The Commission must engage critical stakeholders on how stakeholders and institutions can commit to procure knowledge, accommodate attitudinal change and build capacity to protect the best interest of the child in the provision of health care services and assistance, in a manner consistent with protecting the right of access to adequate and appropriate health care for children with disabilities.

This aligns with Aginam’s postulation thus, “what ought we do in order to protect and promote human health and well-being in a world polarized by inequalities and differential levels of development? International law, its lawyers and multilateral institutions, in the present post-ontological era of the discipline, must strive to create a fair and humane multicultural health regime”.
*Barrister Mbanugo is the Founder, Chukwuebuka Exceptional Children Foundation. esomchukwuaga@gmail.com

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