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Samantha's Law, enacted in the Province of Alberta Canada, functions as an advocacy initiative in memory of Samantha Lauren Martin, born on June 4, 1993, and deceased on December 3, 2006. Samantha received a diagnosis of Tetrasomy 18p, a rare chromosomal anomaly marked by global developmental delays, autism, and a seizure disease [1]. Tetrasomy 18p results from an additional isochromosome originating from the short arm of chromosome 18, resulting in certain developmental and neurological difficulties [2]. The condition is linked to several congenital anomalies and intellectual difficulties, highlighting the necessity for specialised care and advocacy [3]. After Samantha's demise, initiatives were undertaken to enhance awareness and strengthen legal safeguards for individuals with disabilities. In 2009, the House of Commons presented the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which seeks to advance and safeguard the rights of individuals with disabilities under international standards (United Nations, 2006). December 3 was formally designated as the International Day of Persons with Disabilities to enhance advocacy and awareness for inclusivity and equality [4]
Background
editSamantha Martin was in the custody of the Canadian government. She lived in a foster care facility in Alberta, Canada. On December 3, 2006, Samantha died at age 13 while a patient at Stollery Children's Hospital.[citation needed]
The Family Support for Children with Disabilities Program,[5] delivered through the Family Support for Children with Disabilities Act[6] and accompanying Regulation,[7] recognizes children with special needs as legally distinct from children in protective services under the intervention model. Government funding under that program is made available to families directly in order to prevent the need for guardianship relinquishment and out-of-home placement to achieve necessary medical supports.
The Family Support for Children with Disabilities (FSCD) program is not connected with Child Intervention Services. FSCD is delivered under Alberta's Ministry of Community and Social Services.
Upon Samantha Martin’s medical prognosis, government representatives instructed the family that custody must be surrendered in order to gain access to funding for necessary medical services. Tragically, Samantha Martin was not provided the supports promised and died. A review of Child Welfare Act review occurred in 2002. Families of children with disabilities and other key stakeholders stated that children with disabilities were not able to access the support they needed through Child Welfare Act. The consultation during the review included parents of children with disabilities, community stakeholders, advocates, health care professionals and service providers. The Family Support for Children with Disabilities Act came into effect on August 1, 2004, replacing Section 106 of the Child Welfare Act.
The idea behind the concept of Samantha’s Law is promotion of equality, honour of human rights and dignity. In the absence of abuse or neglect, loving families tasked with extraordinary developmental or medical diversity must not be grouped amongst the Child Intervention Model. Rather, families are to be supported directly with in-home supports; not be coerced into relinquishing custody - whether temporary or permanent - in effort to secure government funding for required services.
References and external links
edit- ^ Michelini, G., Allegri, B., Ajmone, P. F., & Antonietti, V. (2024). The behavioral phenotype in a cohort of patients with chromosome 18 anomalies: a retrospective observational study. Research Square.
- ^ Jiang, X., Liang, B., Chen, B., Wu, X., Wang, Y., Lin, N., & Zhang, H. (2024). Prenatal diagnosis and genetic analysis of small supernumerary marker chromosomes in the Eastern Chinese Han population: A retrospective study of 36 cases. Chromosome Research, Springer
- ^ Keskin, S. E., Doğruoğlu, B., İlkay, Z., & Akkoyunlu, D. S. (2024). Cytogenetic evaluation of 661 prenatal samples. Cukurova Medical Journal.
- ^ United Nations. (2006). Convention on the Rights of Persons with Disabilities. United Nations General Assembly
- ^ "Family Support for Children with Disabilities (FSCD) website".
- ^ "Alberta Queen's Printer, FSCD Act". 17 September 2012.
- ^ "Alberta Queen's Printer, FSCD Regulation". 17 September 2012.