Children with complex illnesses, whether they be short-term or life-long, can be a huge final burden to a family and many families simply cannot get by with only their own financial resources and options. Government funding fills in a lot of these gaps but many people often do not get the resources they need or at least not enough and either is obviously a problem.
Assistance for Parents With Complex Illness
Parents of Children w / Complex Illness
Raising a child that is perfect healthy is daunting enough of a task in today's world. It is true that things like culture, economics and current events can all have some sway in the outcomes and perceptions of parents and their children but as long as a child is healthy most of these can be overcome. However, injecting the prospect of a child with a permanent and/or severe illness can change this dynamic quite quickly (James, 2011). Diseases such as cancer, just about any form of autism, Down's Syndrome and the like can place a crushing burden on parents who are unable to afford the insurance, copays and other costs that are associated with keeping the illness in check but some health battles with sick children will be life-long in nature (Hewitt at al, 2010).
Even illnesses that can be beaten back like leukemia and other forms of curable cancer can obliterate a family financially (Mathur, 2012). There are also anxiety and depression issues that can be extremely disruptive to a child's current and long-term prospects if not brought under control (Richardson, Cobham, McDermott & Murray, 2013). Regardless of the depth and breadth of a health issue, comprehensive care can help massively and extensively if imparted when needed (Kuo, Robbins, Lyle, Barrett, Burns & Casey, 2013). Care for the parents with affected children can also become necessary (Dunn et al., 2013)
The stopgap that is often looked at to stop this sort of happenstance is government intervention and/or assistance in the form of reduced costs, free care and other assistance such as housing assistance, defrayment of prescriptions and special housing units made for parents of children with certain deformities or disorders. However, even in countries where government-ran and/or government-mandated health care is the norm, there is clearly a drop-off between what is needed by parents of children with complex illnesses and what is actually needed. Often times, even the pooling of government assistance and the assets/resources of the family is not enough to make ends meet in the end.
This proposal references research that will seek out to craft new policies or refine current programs that will bridge the gap so that parents of children with complex children are able to maintain a quality of life for both themselves and their children despite the finite amount of time and resources that they often encounter. This study would leave no stone unturned including things like making programs like this truly needs-based and not just based on whether a child has a covered disorder. Government resources should be used as a safety net for those that truly have no other recourse and not as a boon to those that truly do not need assistance. This is absolutely not the norm but some people truly do use government resources and funds as their own personal jackpot. At the same time, many government operations are run poorly from a quality of care and cost management standpoint and that should also be addressed.
Chapter II -- Problem Statement & Methodology
Problem Statement
The problem that exists is clear to see for anyone that wishes to be observant and pay attention. Many parents that have children with complex illnesses are either not given the amount of service and funds that they need or they may not receive anything at all. At the same time, fraud and waste are often rampant in these programs and these two maladies need to be stamped out whenever possible so that the precious and finite amount of funds available are going to serve and help the people that really need it (Pitt, 2012). Unfortunately, this problem is far from new (Young, 1983).
Research Method
This research will be in the form of a literature review. The literature review will look at and assess both qualitative and quantitative data sources so as to fetter out what is working, what is not working and what should be done instead of what is currently being done to make the net effect better for the greatest amount of people. Quantitative research is important because of the authority and veracity that numbers and figures tend to have. It is true that numbers can be cherry-picked and manipulated to make a point that a broader data set will not justify. However, the author of this proposed report will be very careful to avoid both intentional and unintentional bias.
Qualitative data will also be important because not all questions and policy decisions can be answered using figures and numbers. As noted in the prior paragraph, quantitative data is usually much more authoritative but can be manipulated and wielded in unfair ways. For example, a person that makes only $15,000 USD a year is below the poverty line as far as federal standards go but the analysis of that person and their dilemmas can be changed greatly if the person has a couple of roommates or lives with their family. Despite their low income, they may live comfortably and may not have dire financial need. When assessing the needs of parents of children with complex disabilities, this sort of drilling down is important because being too broad and vague with solutions will lead to more money going to people who do not need it nearly as much as others. While it's easy to say that compassion dictates that as much money and resources that are needed should be collected, the amount of money can be collected via taxes and such is absolutely finite and for a number of reasons. It is things like this that mandate precision and specificity and this is where the qualitative angle comes in because relying only on hard figures does not pain the whole picture.
Validity & Reliability
The two hallmarks of any good research, and certainly two things that the researcher of this study will keep in mind, are reliability and validity. Reliability is the idea that if someone else does the same research using the same parameters, they will come to the same general conclusion. Validity is the idea that the conclusions drawn are inferable based on the data presented. Validity would stem from relevant and proper data being culled and the proper conclusion and outcome being presented. If the outcome is entirely different when rehashed by someone else and/or the conclusions are different despite the data being the same, somebody almost certainly made a mistake in the research itself or the conclusions drawn.
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