Prevalence rate (%)
In much of Canada access to FASD health service delivery is limited but in aboriginal communities, access to FASD health service delivery is especially problematic. There are no multi-disciplinary diagnostic FASD teams in all of Nunavut and limited access in Yukon and NWT although team diagnosis is recommended by Health Canada and the Canadian Guidelines for Diagnosis.19 A report in 2007 on Inuit Public Health published by the National Collaborating Centre for Aboriginal Health at the University of Northern British Columbia noted20:
FASD has been identified as a pressing health issue facing Inuit communities. Interviews with representatives from each of the northern regions identified FASD as one of the major issues they were concerned about in their region.
There also may be some health inequalities within indigenous populations. Stakeholders in Inuit communities reported that Inuit communities receive a disproportionately lower portion of FASD Federal funding than other aboriginal groups in Canada for FASD. They noted the general lack of Inuit-specific planning, programming, and resources for FASD specific activities.21 Across all regions the following priorities were identified in regard to FASD health service delivery22 , 23
Lack of diagnosis
Lack of follow-up and coordination following diagnosis
Lack of intervention and family support services after diagnosis to assist diagnosed individuals and their families
Lack of alcohol counselling and harm reduction services for women
Lack of training of health professionals and lack of health staff in the communities
Lack of staff training for community members to assist them in implementing FASD-related programs and services
Lack of services and staff for FASD-affected offenders in Corrections including adult diagnosis
Lack of culturally specific FASD strategy and approach to diagnosis, prevention and intervention
Without diagnosis, appropriate interventions in educational and social systems are limited or lacking. This would suggest an increase in associated FASD secondary disabilities. Research on the incidence of secondary FASD disabilities in aboriginal communities is unavailable—since this data depends upon primary recognition and diagnosis and this continues to be a problem in all regions.
According to Statistics Canada (2011) there are 94,400 people living in the Atlantic provinces of Canada (Newfoundland-Labrador, Nova Scotia, New Brunswick, and Prince Edward Island) who are aboriginal.24 Using the recent prevalence general population estimate of 3.6 %,25 we can project that 3398 aboriginal people in Atlantic Canada need FASD health services at this time. In 2011, there were only 10 diagnostic slots in Atlantic Canada.26 At the present time, with the opening of the New Brunswick FASD Centre of Excellence, capacity increased to approximately 30; but most of these diagnostic slots do not serve the aboriginal population. Ninety-nine percent of the aboriginal population affected by FASD in Atlantic Canada do not have access to FASD health services in terms of diagnosis and disability accommodations treatment.
The lack of access to FASD health service delivery in aboriginal communities may be negatively affecting the health and well-being of indigenous people living in these communities. It also is contrary to Canada’s ethical and legal obligations as expressed by international covenants as well as by the Canadian Charter of Rights and Freedoms.
In 1948, Canada was a signatory to the UN Declaration of Human Rights affirming in Article 25 the rights of everyone to adequate medical care as well as support in the event of a disability.27 In 1966, Canada was a signatory to the UN International Covenant on Economic, Social and Cultural Rights, ICESCR, which also recognized the right of everyone to medical care. In Article 12 of the covenant there was special mention of services to ensure: prevention and treatment, the healthy development of the child, and the creation of conditions that would assure medical services.28 The ICESCR was ratified by the Canada in May of 1976 committing the government in law as well as in principle to the human rights principles of the covenant.29 In December 1991 Canada also ratified the Convention on the Rights of the Child (CRC).30 Article 24 of the CRC specifically mentions the responsibility of states to ‘ensure that no child is deprived of his or her right of access to…health care services’ that further ‘states shall strive to ensure that no child is deprived of his or her right of access to such health care services (and) shall pursue full implementation of this right. The CRC also recognized its obligations to mothers to ‘not only take appropriate measures….to ensure the provision of necessary medical assistance and health care to all children…..(but also) to ensure appropriate pre-natal and post-natal health care for mothers.’31
Research has determined that FASD is a brain based disability but outcome can be improved by early diagnosis, a stable and supportive home and appropriate treatment and accommodations. In Article 23 of the CRC Canada also affirms its obligations to provide all children with a disability the special accommodations that are needed without charge if parents lack resources and that services ‘should be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities.’32
Like many developmental disabilities FASD is permanent and requires life-long support and accommodation. Section 15 of the Charter, signed into law 1982, clearly indicates Canada’s legal responsibility to provide access and accommodation for people with physical or mental disabilities of all ages without discrimination.33 The nature of this commitment is more specifically articulated in the UN Convention of Rights of Persons with Disabilities—signed by Canada in 2007 and fully ratified in 2010. This Convention affirms the rights of all people to access, accommodation and support in event of disability. Specific mention in the convention is made of many areas of life including: Justice (Article 13), Education (Article 24) Health (Article 25)34: The convention clearly states provision should be made of services that work to prevent secondary disabilities:
Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
The Convention also notes ‘the difficult conditions faced by persons with disabilities who are subject to multiple or aggravated forms of discrimination on the basis of race, colour…… language……indigenous or social origin……age or other status’.
The disadvantage faced by an Aboriginal person with an FASD disability is exacerbated by the already significant gap they have to traverse in health, education, housing, and all other determinants of health. According to the 2014 UN report of the Human Rights Council35:
The health of First Nations, Inuit and Métis people in Canada is a matter of significant concern….significant gaps still remain in health outcomes of aboriginal as compared to non-aboriginal Canadians, including in terms of life expectancy, infant mortality, suicide, injuries, and communicable and chronic diseases such as diabetes. The health situation is exacerbated by overcrowded housing, high population growth rates, high poverty rates and the geographic remoteness of many communities, especially Inuit communities in the north.
Socio-economic status, SES, is one of the biggest risk or protective factors to the clinical manifestation of the FASD condition.36 , 37 In 1987 a group of researchers compared the offspring of high SES and low SES women with controls. The study population all had chronic drinking problems and similar prenatal alcohol consumption when pregnant yet the incidence of FAS in offspring was 4.5 % for upper-middle class mothers vs. 70.9 % for low SES mothers.38 There were significant differences in rates of intellectual deficiency but more importantly in areas that could not be attributed to post-natal environment, such as a significant reduction in head circumference and growth, as well as increased congenital malformations.
In 2010, Canada became one of the signatories of the United Nations Declaration on the Rights of Indigenous Peoples.39 In doing so Canada affirmed its indigenous peoples’ ‘equal right to the enjoyment of the highest attainable standard of physical and mental health’. Canada also agreed that they would ‘take the necessary steps with a view to achieving progressively the full realization of this right’ (Article 24). Special note was taken in the document of the need to protect the rights of people with disabilities. ‘Particular attention shall be paid to the rights and special needs of indigenous elders, women, youth, children and persons with disabilities in the implementation of this Declaration (Article 22)’.40
Despite its ethical and legal responsibilities lack of access to FASD diagnostic services means lack of identification and subsequent lack of eligibility for provision of disability accommodation in school and community. The 2014 UN report of the Human Rights Council notes that despite conditions funding levels in aboriginal communities for education, health and social services continue to lag far behind.41
The challenging behaviors of youth and young adults who may be affected by prenatal exposure are often perceived to be intentional because they have not been identified through the medical system as having a disability. FASD behaviors can become more challenging as individuals grow into adulthood without support and accommodation. Secondary disability research indicates that without early diagnosis and support 60 % of individuals with FASD begin to get into trouble with the law.42 Research indicates that many individuals with FASD end up in the revolving door of the criminal justice system where they are punished for behaviors that have less to do with criminality than with their disability.43
The criminal justice system in Canada has no process in place to screen or assess FASD. Forensic psychiatrists are not often trained nor always available to diagnose FASD, so unless the diagnosis is brought into the court individuals with FASD do not get appropriate consideration or accommodation within the criminal justice system for their disability.44
To remedy the situation regarding the lack of FASD service delivery Health Canada implemented FASD initiatives beginning in the early 2000’s.45 First Nation Inuit Health or FNIH’s FASD Program and PHAC’s (Public Health Agency of Canada) FASD National Strategic Projects Fund are the basic components of Health Canada’s FASD Initiative introduced in the 1999 Budget.
PHAC’s FASD National Strategic Fund has been responsible for advancing a number of important FASD projects and Canada has become well-known throughout the world for its ground-breaking work in advancing FASD knowledge, research and practice.46 They funded a wide range of projects including development of: Clinical Practice Guidelines for Diagnosis of FASD,47 Alcohol Use and Pregnancy Clinical Practice Guidelines for physicians48; a National Screening Toolkit for FASD,49 Prevention statements, Adult diagnosis statements, development of a national prevalence plan, economic analysis and research funding through Canada’s FASD Research Network and NeuroDevnet.
Despite the success of PHAC’s National FASD initiative, actual service delivery at the community level in Canada has not improved significantly. In 2011, Clarren and Lutke report that the clinical capacity in Canada to diagnosis was 2288 while the number of people projected to be affected by FASD was 1,279,454.50 , 51 Canada’s specific legislation dealing with healthcare, the Canada Health Act (1985)52 shares the responsibility of running the Canadian medical system between levels of government. The provinces/territories have been given the primary responsibility for health service delivery while the federal government through Health Canada provides direction, research and support.53 So despite PHAC’s direction, there was no real change in provincial health policy and practice.
Health services for aboriginal people are provided through more complex arrangements between the provinces or territories, the federal government and aboriginal communities. Often there is confusion as to the responsibility of each of these in relation to the funding and the delivery of particular health services. The federal department that has the specific mandate for aboriginal health is FNIH (First Nation and Inuit Health). While an Aboriginal right to health care has never been specifically acknowledged by the federal government or decided in the courts, the courts have clearly recognized the fiduciary responsibility of the government towards aboriginal people. FNIH’s mandate is to54:
Ensure the availability of, or access to, health services for First Nations and Inuit communities;
Assist First Nations and Inuit communities address health barriers, disease threats, and attain health levels comparable to other Canadians living in similar locations; and
Build strong partnerships with First Nations and Inuit to improve the health system.
Most of the health services for aboriginal people, however, are delivered by the provinces or territories where the people reside whether off or on-reserve. FNIH’s ‘un-insured benefits program’ is supposed to fill in the gaps by covering health services that are not provincially insured i.e. dental services, eyeglasses or medicine. This program could provide the framework to fund FASD diagnostic services but at this point in time there is only project support (not core funding) for FNIH’s FASD program. The actual focus of the program has been on prevention through mentoring services and support for women, although the stated objectives of their program are broader:
(1) Reduce the number of babies born with FASD; and (2) support children (age 0–6) who are diagnosed with FASD and their families to improve their quality of life.55
When FNIH’s FASD program was first launched in the early 2000s there were three eligible priority areas: Asset Mapping, Diagnosis (Formation of Multi-disciplinary team), and Mentoring (PCAP, Parent Child Assistance Program).
Amidst this context, one community based FASD multi-disciplinary diagnostic team, the Eastern Door, was established in Atlantic Canada through the FNIH’s call for proposals in the early 2000s. The Eastern Door Team, is an aboriginal community based diagnostic team, that’s been operating since 2005-6; it was used as a model for the New Brunswick FASD Centre of Excellence that opened in 2012.56 The Eastern Door is actually the result of successful tri-partite collaboration between the federal government, the provincial government and the community. It would not have been possible without the funding provided by FNIH’s FASD Program for training and team coordination, but the in-kind provincial services of physician and OT and the special needs accommodation services offered post-diagnosis by the FN on-reserve school were also essential.57 The Eastern Door is unique in its development of culturally based tools for screening, diagnosis and intervention and the participation of traditional healers in the diagnostic process. After the Eastern Door was operating for a few years a satisfaction survey was sent to the families who had accessed services; the satisfaction rate was over 90 %.58 One of the birth mothers who was able to access FASD services in the community speaks of her experience with diagnosis and then after as accommodations were put in place and the child began to learn59:
When she was a baby I didn’t understand why she would you know when she would get angry she would bang her head on the floor…..like constantly…..she didn’t know how to say how she was feeling…so just for…for not to get hurt I would put my hand on her head, where she was pounding her head, and so she wouldn’t get hurt……
At first I dreaded going and didn’t know….didn’t want to know….but I put all those feelings aside and I said this is for her…… She asked me a lot of questions and I just answered them in my honest way as best as I could…what I know…but she helped me figure out a lot of stuff in my head…about it…just talking to her it was a relief….for me…that it had a name….the doctor told me that this is what it is and then what they were going to do and every word he was saying after that…it was lifting my spirits and then things started going more easier after that and both of us…and she started to learn and when she first started reading a book I cried…I never thought she would read a book……and I was so happy…when she graduated high school—all that, because of that, the diagnosis, it made my life easier—
Despite its success, the Eastern Door funding from FNIH has been reduced to a point that it now does not even cover the salary of the team coordinator. The original plan was to begin to offer adult diagnosis and to expand in order to allow nearby FN communities to access diagnostic services as they have requested.60 Instead, one of the health center administrators recently had to restrict Eastern Door services because of inadequate funding from FNIH. FNIH removed diagnosis as one of the funded components in their FASD program since they consider medical diagnostic services to be the responsibility of the province.
Because of the limited funding in the provinces for the development of multi-disciplinary diagnostic teams an individual’s access to FASD diagnosis in aboriginal and non-aboriginal communities has depended upon the practice of individual physicians. These health professionals are funded through provincially insured health plans and they face a number of challenges in providing diagnosis. Twenty years ago the Public Health Agency of Canada commissioned a survey of pediatricians and family doctors to explore their level of knowledge and attitudes to FASD in light of the lack of access to FASD diagnostic services. One of the most important issues for them was lack of training. Over half reported that they lacked the training to diagnose FASD. A few had never even heard of the condition.61 Some of the physicians reported that they had considered FAS as a diagnosis but also admitted they never made reference to the condition in their case notes because they were uncomfortable with the issue.62 Physician lack of FASD training and knowledge continues to be a problem. Physicians also report they are uncomfortable asking about alcohol use in pregnancy and they do not have the resources needed to deal with the issue. 63
In 2007, the Lancet published an article written by British pediatricians entitled ‘Fetal Alcohol Syndrome: law and ethics’ that suggested that diagnosing FASD poses a conflict for physicians.64 They write that they are caught between ‘the right of the individual to know the likely cause of their disability against emphasising the mother’s potential sense of guilt, thereby probably damaging the relationship of mother and child’.65 Despite this conflict the authors conclude that ethically it is only by ‘reliably making the diagnosis can more effective interventions be offered to affected individuals’. But there are practical barriers to FASD diagnosis that affect physicians offering FASD diagnostic services.
FASD diagnosis is time-consuming. It requires interviews with the birth mother, information from other specialists and coordination of care. Physicians report that there are no provincial FASD billing codes that would enable them to charge for the services that are required.66
The provincial government however, could choose to supply FASD billing codes for individual physicians as well as resources for the coordination and development of FASD diagnostic teams. Health officials justify the continuing lack of FASD service delivery in terms of a risk-benefit or cost-effective analysis (i.e. the cost of FASD diagnosis is high; there is no cure for FASD, and FASD interventions are expensive to provide.67) This economic approach to health service delivery would appear to have no ethical basis in light of the principles that health professionals and policy makers agree should guide health care policy and practice. Beauchamp and Childress first articulated these in the 1970s and they are now widely accepted by most health professionals and their regulatory bodies68:
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