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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] 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 [5]
Background
Samantha 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,[6] delivered through the Family Support for Children with Disabilities Act[7] and accompanying Regulation,[8] 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
↑ 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
↑ United Nations. (2006). Convention on the Rights of Persons with Disabilities. United Nations General Assembly
The following outline is provided as an overview of and topical guide to autism:
Developmental disability is a diverse group of chronic conditions, comprising mental or physical impairments that arise before adulthood. Developmental disabilities cause individuals living with them many difficulties in certain areas of life, especially in "language, mobility, learning, self-help, and independent living". Developmental disabilities can be detected early on and persist throughout an individual's lifespan. Developmental disability that affects all areas of a child's development is sometimes referred to as global developmental delay.
Invisible disabilities, also known as hidden disabilities or non-visible disabilities (NVDs), are disabilities that are not immediately apparent. They are typically chronic illnesses and conditions that significantly impair normal activities of daily living.
Tetrasomy 18p is a genetic condition that is caused by the presence of an isochromosome composed of two copies of the short arm of chromosome 18 in addition to the two normal copies of the chromosome. It is characterized by multiple medical and developmental concerns. Tetrasomy 18P World Day is 18th April.
The Convention on the Rights of Persons with Disabilities is an international human rights treaty of the United Nations intended to protect the rights and dignity of persons with disabilities. Parties to the convention are required to promote, protect, and ensure the full enjoyment of human rights by persons with disabilities and ensure that persons with disabilities enjoy full equality under the law. The Convention serves as a major catalyst in the global disability rights movement enabling a shift from viewing persons with disabilities as objects of charity, medical treatment and social protection towards viewing them as full and equal members of society, with human rights. The convention was the first U.N. human rights treaty of the twenty-first century.
Intellectual disability (ID), also known as general learning disability, and formerly mental retardation, is a generalized neurodevelopmental disorder characterized by significant impairment in intellectual and adaptive functioning that is first apparent during childhood. Children with intellectual disabilities typically have an intelligence quotient (IQ) below 70 and deficits in at least two adaptive behaviors that affect everyday living. According to the DSM-5, intellectual functions include reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience. Deficits in these functions must be confirmed by clinical evaluation and individualized standard IQ testing. On the other hand, adaptive behaviors include the social, developmental, and practical skills people learn to perform tasks in their everyday lives. Deficits in adaptive functioning often compromise an individual's independence and ability to meet their social responsibility.
People with Disability Australia Ltd (PWDA) is a national Australian disability rights and advocacy organisation founded in 1980 and based in Surry Hills, Sydney.
The Family Movement, also known in the past as the Parent Movement, is an arm of the disability rights movement, a larger social movement. The Family Movement advocates for the economic and social rights of family members with a disability. Key elements include: social inclusion; active participation; a life of meaning; safety; economic security; accessibility and self-determination. The family movement has been critical in closing institutions and other segregated facilities; promoting inclusive education; reforming adult guardianship to the current supported decision-making; increasing access to health care; developing real jobs; fighting stereotypes and reducing discrimination.
Disability in China is common, and according to the United Nations, approximately 83 million people in China are estimated to have a disability.
Disability in Canada affects approximately 8 million individuals aged 15 and older. According to the 2022 survey by Statistics Canada of those reporting a disability nearly 42% of seniors had four or more co-occurring disabilities, while 43% of youth and 36% of working-age adults had two or three types. The disability rate was higher for women (30%) compared to men (24%), consistent with past trends. In terms of severity of disabilities, about 59% of disabled persons were classified as having milder disabilities, while 41% had more severe disabilities.
The Ghana Statistical Service reports from their 2021 census indicate that approximately eight percent of the Ghanaian population experience some form of disability, with a higher prevalence among females (8.8%) than males (6.7%). Disabilities are more common in rural areas (9.5%) compared to urban areas (6.5%). Among the six domains of disability, difficulty in seeing is the most widespread, affecting four percent of the population, while difficulty in communicating is the least common, affecting one percent. Disability issues in Ghana have evolved from a human rights concern to a developmental issue due to Ghana's high poverty rate.
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Tetrasomy X, also known as 48,XXXX, is a chromosomal disorder in which a female has four, rather than two, copies of the X chromosome. It is associated with intellectual disability of varying severity, characteristic "coarse" facial features, heart defects, and skeletal anomalies such as increased height, clinodactyly, and radioulnar synostosis. Tetrasomy X is a rare condition, with few medically recognized cases; it is estimated to occur in approximately 1 in 50,000 females.
Pentasomy X, also known as 49,XXXXX, is a chromosomal disorder in which a female has five, rather than two, copies of the X chromosome. Pentasomy X is associated with short stature, intellectual disability, characteristic facial features, heart defects, skeletal anomalies, and pubertal and reproductive abnormalities. The condition is exceptionally rare, with an estimated prevalence between 1 in 85,000 and 1 in 250,000.
Trisomy X, also known as triple X syndrome and characterized by the karyotype 47,XXX, is a chromosome disorder in which a female has an extra copy of the X chromosome. It is relatively common and occurs in 1 in 1,000 females, but is rarely diagnosed; fewer than 10% of those with the condition know they have it.
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Samantha Martin was a Canadian girl who died of a heart attack in December 2006 at age 13. Following her death, her parents – particularly her mother Velvet Martin – fought legal restrictions on publicizing information about children in Alberta's child welfare system, alleged that Samantha's death was caused by neglect while in foster care, and lobbied for changes to an Alberta law that required disabled children to enter foster care in order to receive medical treatment.
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