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In North America, less than 30% of children with complex CHD receive recommended follow-up for neurodevelopmental and psychosocial care. While rates of follow-up care at surgical centres have been described, little is known about similar services outside of surgical centres.
Methods:
This cohort study used Maine Health Data Organization’s All Payer Claims Data from 2015 to 2019 to identify developmental and psychosocial-related encounters received by children 0–18 years of age with complex CHD. Encounters were classified as developmental, psychological, and neuropsychological testing, mental health assessment interventions, and health and behaviour assessments and interventions. We analysed the association of demographic and clinical characteristics of children and the receipt of any encounter.
Results:
Of 799 unique children with complex CHD (57% male, 56% Medicaid, and 64% rural), 185 (23%) had at least one developmental or psychosocial encounter. Only 13 children (1.6%) received such care at a surgical centre. Developmental testing took place at a mix of community clinics/private practices (39%), state-based programmes (31%), and hospital-affiliated clinics (28%) with most encounters billing Medicaid (86%). Health and behavioural assessments occurred exclusively at hospital-affiliated clinics, predominately with Medicaid claims (82%). Encounters for mental health interventions, however, occurred in mostly community clinics/private practices (80%) with the majority of encounters billing commercial insurance (64%).
Conclusion:
Children with complex CHD in Maine access developmental and psychosocial services in locations beyond surgical centres. To better support the neurodevelopmental outcomes of their patients, CHD centres should build partnerships with these external providers.
A significant number of important rights accrue to refugees only once they are “lawfully staying” in a state party. These include the rights to engage in wage-earning employment and to practice a profession, freedom of association, access to housing and welfare, to benefit from labor and social security legislation, and to receive travel documentation.
As previously described,1 a refugee is lawfully staying (résidant régulièrement) when his or her presence in a given state is ongoing in practical terms. This may be because he or she has been granted asylum consequent to formal recognition of refugee status. But refugees admitted to a so-called “temporary protection” system or other durable protection regime are also lawfully staying.
This chapter addresses those rights that follow automatically and immediately from the simple fact of being a Convention refugee within the effective jurisdiction of a state party. These primary protection rights must continue to be respected throughout the duration of refugee status, with additional rights accruing once the asylum-seeker‘s presence is regularized, and again when a refugee is allowed to stay or reside in the asylum country.
Refugee status is not conceived as a permanent thing. As surrogate or substitute protection,1 its purpose is to ensure the well-being and autonomy of persons compelled to leave their own country until and unless national protection is again available to them. If and when a refugee has access to durable national protection – whether by repatriation,2 voluntary reestablishment,3 resettlement,4 or naturalization5 – refugee status comes to an end.6 In this fundamental sense, what are generally referred to as “durable solutions”7 to refugee flight are inherent in the structure of the Refugee Convention.
As the degree of attachment between a refugee and a state party increases, so too do the rights which the refugee may claim. All of the rights acquired by simple physical presence – to enter and remain in the asylum state; freedom from arbitrary detention or penalization for illegal entry; protection of physical security; access to the necessities of life; protection of property; respect for family unity; free exercise of thought, conscience, and religion; access to basic education; documentation of identity and status; and to benefit from administrative assistance and access to the courts – continue for the duration of refugee status. But once a refugee is not only in fact under the jurisdiction of a state party to the Convention, but also lawfully present in that country, he or she acquires several additional rights.
Refugee rights at international law are nearly always codified in treaties.1 The core of the refugee rights regime is the 1951 Refugee Convention2 and its 1967 Protocol,3 still the only source of globally applicable refugee rights. But as the analysis in Chapter 1 has shown, this core is today supplemented by both regional refugee rights standards4 and a more general international system of international human rights law.5 Reading these standards together – as the analysis in Chapters 4–7 does – the treaty-based system for the advancement of refugee rights is remarkably comprehensive.
The origins of refugee rights are closely intertwined with the emergence of the general system of international human rights law. Like international human rights, the refugee rights regime is a product of the twentieth century. Its contemporary codification by the United Nations took place just after the adoption of the Universal Declaration of Human Rights, and was strongly influenced by the Declaration’s normative structure.
In a more fundamental sense, though, the refugee rights regime draws heavily on the earlier precedents of the law of responsibility for injuries to aliens and international efforts to protect national minorities. This chapter highlights the conceptual contributions made by each of these bodies of international law to the emergence of specific treaties to govern the human rights of refugees.