Título: Una excusa para la emergencia de nuevas formas de intervenir la violencia en pareja
TÉCNICO-INTERVENTIVO IDEOLÓGICO-SIMBÓLICO
Informed, sensitive and accurate diagnoses were essential for measuring the incidence and prevalence of FASD and securing funding from government. Building an evidence base was further complicated by uninformed service providers who lacked training in recognising and responding to FASD.
The stigma associated with FASD and professional silos and systems are reported to slow down policy development (RS0214).
Described as ‘complex’ (RS0108), there is lack of agreement in the medical system on the fetal alcohol spectrum in the United States (HP0106; MD0102), and as the diagnostic criteria are not meaningful and are disconnected from the issues ‘which need intervention and treatment’ (RS0108), the number of individuals living with FASD cannot be accurately gauged. The ‘lack of incidence and prevalence data’ in the United States (NG0111) and Australia (RS0325) can be rectified with reliable
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diagnosis (CH0104; HP0106) this kind of evidence convinces decision-makers (HP0106) to address the intergenerational impact of future exposed pregnancies (CH0104).In Australia, predicting prevalence rates based on international sources of data leads to ‘no action’ (RS0325). According to a US participant, Dr Sterling Clarren once stated that ‘the actual numbers [of people with FASD] are so great as to be almost unbelievable’. This participant pointed out that ‘the widely-quoted statement that FASD is the leading cause of intellectual disabilities in the Western world is notable since this claim is being made in spite of lack of diagnostic capacity in virtually all countries’ (ET0112). With the ‘recurrence rate’ predicted to be ‘exceptional’ (RS0108), the increasing number of children and adults recognised as having FASD ‘is impossible to ignore’ (ET0112). As numbers of individuals living with FASD are expected to increase over time, so should diagnostic capacity. This was an important consequence for prevention activities as increasing public awareness meant necessary planning for ‘the inevitable stage where identification exceeds capacity to provide support’ (ET0112).
Although service responses and support for individual children living with a FASD were reported to be evolving in Canada and a ‘lot of good work is being done’ because of increased knowledge and understanding of FASD by professionals, an ‘overall applied model does not exist’. Consequently, responses were reported to vary dependent upon the individual worker who was allocated a case (RS0214). It seemed for one Canadian participant that the kind of response was dependent on the individual provider; and whether individual providers had a strong interest in providing ‘good care’ (RS0214).
While there was no indication in responses from the United States that service delivery was
improving, a similar comment was made on the need for pre-service training and in-service education for people from relevant disciplines (RS0108). Training was suggested as dependent on ‘funding and resources to keep communities engaged and willing to work towards prevention’ (RS0217). Maternal care practices ‘within a medical/health approach with the early detection of children at risk of fetal alcohol exposure’ was an example of an opportunity to recommend that a parent seek ‘substance abuse treatment’ (RS0108). The reality, claimed another, was that ‘we work with women and support them, but this is not sustained. Relapse occurs’ (MD0107). FASD was proposed as ‘one injustice in society and the child pays the price’ (AP0216).
Most of the funding spent on FASD is treatment of current issues and almost none is spent on prevention of future problems that define the severity of the disorder for adolescents and adults. (RS0108).
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While a lack of government funding has ‘slowed momentum’ in the United States (HP0106), most of the cost of care is nevertheless reported to come from ‘public funds’ as FASD ‘increases utilization of nearly all state or provincial service systems’ (RS0108); further, legislators do not understand just how much funding is already related to FASD (RS0108). That being said, one of the biggest impediments to advancing the FASD agenda would be a decision by Congress to stop funding for FASD programs (BS0103). For several participants from the United States, the issue of ongoing and increased funding to deliver prevention activities – community education, interventions and treatment – is critical(BS0103; RS0105; BP0109; ET0112) and the need to develop strategies for obtaining funding with the awareness that this is not new funding, so that there is competition with other advocacy groups
‘seeking to increase their share of existing funds’ (RS0108). One participant likened the problem in Australia to ‘a lot of issues’ and believed the ‘seemingly low prevalence of FAS means it is
statistically hard to do research across the general population’. Further, it is so devastating when it happens to an individual, prevalence data reveals the prevalence is relatively low and so evidence ‘needs to be continually presented which demonstrates the numbers affected and the true burden of the problem’ to government as both need ‘improved funding’ (RS0303).
Speaking about the United States, a participant reflected on a government that ‘prioritizes short-term economic gain over long-term social health’ as the barrier to prevention (ET0112). Another US participant spoke of challenges with Congress, as this is where decisions are made as to how funding is allocated. For example, the non-recognition of FASD contributes to a ‘disconnect with
congressmen’ and as a consequence, FASD has not been funded or adopted in some agencies resulting in ‘a lot of people labelled autistic who are FASD’ (RS0105). The cost of lifetime care is extremely high, said one US participant, with virtually no investment in ‘meeting the future needs of those affected in adolescence and adult years’. Given these scenarios, FASD prevention should be competitive for funding (RS0108).
For two US participants, there was a tendency for government ‘to fund what was funded last year’ (RS0108)’ so if Congress stopped funding FASD programs there would be a serious problem (BS0103). One participant thought that government control over funding allocations in the United States was often poorly focused, leading to limited improvements in prevention (RS0108). A lack of systematic education of policymakers and agency administrators meant they tended to see FASD as someone else’s problem (they were interested but usually not willing to take money from someone else to fund FASD activities) (RS0108). It was argued by one Canadian participant that the message to the government needed to be focused on what will advantage ‘future cost savings’; however, British Columbian governments ‘are short sighted (from one election to the next)’ and it was likely that ‘we … will have little impact on this’ (SP0222). Others proposed that government awareness of the
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economic cost (LP0219; RS0214; GP0215; SP0218) of not committing to prevention was a keyinfluence, but there were also other less tangible costs.
I believe the interest is driven by economics. It is very clear that the cost of FASD is very high not just financially, but socially and personally for families, children and society (RS0214). One Canadian spoke about prevention work as ‘intensive and costly’ and an activity which ‘cannot be done properly off the side of the desk’ and that in some agencies, responses to FASD prevention work was only undertaken when specific funding was provided (SP02 22). A participant from the United States proposed that the numbers of stakeholders willing to advocate ‘have not reached critical mass’ and ‘families are meeting their own needs which means the time available to self-advocate is
minimized’ (NG0111). For an Australian, grassroots advocates did not have funding to publish in glossy magazines and therefore could not compete in claiming ‘best practice’ (BP0325).
In Canada, there was an expressed need for legislators to understand how this issue already permeates and utilises resources from most systems, rather than the ‘tendency to throw money at problems rather than improve situations’ (SP0218) and budget cuts were driving reviews to find ‘fat’ so that electoral promises to spend four to five billion dollars on new prisons ‘which ironically are where people with FASD end up (LP0219)’ could be met. Prison building was ‘popular with conservative prime ministers … and when the economy takes a downward turn, it is not uncommon for prevention programs to get hit’ (LP0219).
For an Australian participant finding funds to put programs together was not easy.
Money is being wasted and I think now that they [the government] know it … We need to fund proper programs and prevention that instead of setting people up for failure … will empower and provide people with FASD a solid foundation (BP0323).
There are no specific services for people living with FASD in Australia and little communication in service delivery (BP0323). In the opinion of other Australians, programs were delivered independently across different areas of alcohol harms (RS0330), and this meant that people living with FASD and their families had to seek their own information individually (BP0323):
wrangling based on different belief systems has wasted over 30 [years] (SP0329). Even though ten-year strategic plans were in place in Canada, government strategic planning was described by one Canadian as having ‘high expectations with little government initiative to support the work which needed to be done’ and ‘most are short sighted (SP0222). This was said to come from a position of ‘conservative politics and a traditional mindset’ (AP0216). Funding was also reported to
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‘not reach Canadian grassroots communities’, with no budgets for work at a local level where ‘most of the support work is done’. Further, the allocation of funding was viewed as problematic because it created competitiveness because ‘once the funding begins to flow, organisations jump on the bandwagon and want part of the funding to offer programs’ (AP0213). As a Canadian participant proposed, government was the critical barrier because all the services ‘required for our children are funded and controlled by governments, with bureaucrats as the gatekeepers from Hell’ (BP0220).Money. Govt has discovered FASD is costing them big bucks … in many different depts. (LP0219).
The current complexity of FASD diagnosis in the United States was noted as costly, given a prevalence rate of one per cent of live births, when in competition with other conditions requiring government financial investment (RS0108). A US participant said that evidence needed to be
continually presented which ‘demonstrates the numbers affected and the true burden of the problem’, and that both need improved funding (RS0108). For another participant, this evidence would produce newsworthy information mechanisms in reporting on breakthroughs (BS0103). For both participants, there was agreement that education was critical; this one felt that many legislators ‘have difficulty in understanding how much of current service systems capacity and funding are related to FASD’ and educating policymakers was a key issue if there was to be improved funding for FASD (RS0108). For another, there was anxiety about whether there would be fallout from a ‘shrinking federal budget’ (BS0103):
The cost effective power of prevention services versus treatment services costs; the need for multimodal approaches to prevention beyond direct clinical intervention to include community mobilisation and public health models for behavioral change. (MD0101)
Epidemiological studies were suggested by an Australian participant as important to inform scientifically on the incidence and prevalence of FASD in the community. This, the participant claimed, was necessary to support the investment of funding, which in turn could raise public awareness and discount professional disbelief of the true scope of the problem (BP0323). For one Australian, the problem of FASD is so ‘huge and systemic’ that if acted on it would risk government revenue from alcohol. This was why government sustained an ‘ignorance is bliss’
position, a position unhelped by the lack of evidence of FASD prevalence (SP0329). Accessing public funds ‘to do what needs to be done’ is perceived by another Australian to be a challenge for the future (BP0323).