Access to Services, Quality Care And Family Impact for Children With Developmental Disabilities
Prevalence of autism spectrum disorders (ASDs) has risen in the past decade by 78% (Centers for Disease Control and Prevention (CDC), 2012a), and currently 1 in 88 children in the United States has ASDs. Many conditions are associated with ASD’s. Autism spectrum disorders are related to conditions such as intellectual disability, Down syndrome, or developmental delays. Guardians of children with developmental delays encounter challenges some that include: the complication of the condition itself that demands pharmacological treatment and behavioral therapies needing a combination of educational and healthcare workers, extensive developmental and physical comorbidities(Boulet et al, 2012; Kohane et al, 2012; Levy et al, 2010) that need greater medication management and attention by the caretaker as well as the health-care providers; there is also lack of a wide selection of pharmacological, biomedical, treatments and therapies used by the caregivers of children with disabilities. Furthermore, the significant amount of out of pocket costs and other expenses affect families of children with disabilities and also display a great impediment on these families.
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The complexity of ASD and its impact on the family is evident in the reports of caregivers of children with ASDs; these caregivers have reported greater unmet needs (Chiri and Warfield, 2012; Siklos and Kerns, 2006), issues with access to services (Krauss et al., 2003; Ruble et al., 2005), and dissatisfaction with the quality of care provided (Montes et al., 2009; Spann et al., 2003). Disability is a global public health issue as described by the World Health Organization. These children deserve to have basic human rights and a development priority. Children with disabilities for many years face obstacles in accessing health services. Services that consist of rehabilitation, end up having worse implications than those without a disability.
Other health conditions may also be a threat to other health issues, that are poorly managed, such as a higher common occurrence of diabetes in people with schizophrenia. Disability is also a human rights issue because children with disabilities experience discrimination, inequalities and stigmatization. They are in danger of of multiple neglects of their rights including their self worth, for example through acts of abuse and prejudice because of their disability. It is a priority to get quality treatment for children who have disabilities because many suffer to get treatments and services because of their low income, especially in other countries. Disability and poverty reinforce are closely associated and uphold one another.
Poverty increases the chances of defects through undernourishment, harmful living, operational and traveling circumstances. This could lead to a lower socioeconomic status through an insufficiency of access to education and occupation, and high costs associated with disability. Children with developmental delays encounter obstacles in obtaining services such as (medical care,therapy, assistive technologies, education, housing and transport). A big reason that these obstacles occur has a lot to do with the delivery of services; shortcoming of awareness, comprehension of disabilities, discrimination, very little accessbilitiy, insufficient funding; and the small participation that people have when making decisions that can affect each child’s lives.
Certain impediments also occur in relationship with people who have disabilities being able to communicate , seek, receive and give information and ideas with others who want to help but don’t know exactly how to. These obstacles play a part in the disadvantages by children with disabilities especially in developing countries. Children who have disabilities encounter poorer health than those without a disability as well as increased rates of impoverishment, reduced independence and limited contribution. These obstacles that they face can be preventable and the drawback linked with disability can be controlled. Disability is very distinct.
Although, some health circumstances related with disability affect in health care needs while others do not, children with special needs require the same health care needs as everyone else thus require access to general health care amenities. Some may suffer greater exposure to inevitable secondary conditions, comorbidities and aged linked conditions, that may require special health care amenities. A number of studies have shown that particular groups of people with developmental delays display increase percentages of dangerous acts such as drinking and physical inactivity; they are also exposed to violence. In addition, they are more likely to be at risk of injury from falls, burns, and crashes. A closer analysis showed that caregivers of children with Autism Spectrum Disorder had complications using services because of eligibility, availability of services, delays in appointments, and issues obtaining information about services.
It is well documented that there is a paucity of pediatric subspecialists’ workforce in the United States (Althouse and Stockman, 2011), and this may lead to children not receiving timely care in their region and community of residence. Levy and team (Autism Speaks, 2012) identified areas which may be barriers to shared decision making on interviews with 20 primary care providers in a hospital in Philadelphia and 20 parents of children with ASDs. The areas included parent’s awareness of primary care pediatrician’s understanding and assistance with autism affiliated choices, pediatrician’s deficiency of certainty in their education to suggest parents about autism related therapy, and physician’s lack of comfort in consulting different and alternative medication. The researchers also suggested that these areas need to be targeted for improving provider–patient shared decision making among caregivers of children with ASDs (Autism Speaks, 2012). As previously stated, (Boulet et al., 2009; Krauss et al., 2003; Liptak et al., 2006a; Volkmar et al., 1999), children with ASDs have extensive health-care needs along with physical, developmental/neurological comorbidities (Boulet et al. 2009; Kohane et al., 2012; Maski et al., 2011) due to which they require services from multiple health-care, educational, and social services providers (Volkmar et al., 1999). Increasing discussion abilities of both the caregiver and healthcare practitioner and decreasing miscommunications between numerous providers may face a critical role in limiting care coordination issues for children with Autism Spectrum Disorders.
Other findings also indicate that care coordination may perhaps be enhanced by the development of better patient provider systems and accepting top practices of patient centered care models. Influence of the special needs condition circumstance on the family was also remarkably distinct across the four special needs condition. Guardians of children with special needs noted employment hindrance(leaving a job because of a child’s condition). Employment barriers that were reported by guardians of children with special needs emphasizes that the needs of this community are complicated and difficult for the families. All these elements may be linked.
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For example, Additional duration spent on coordinating or placing home based care may cause a guardian to quit a job for child supervision and potential for loss of income. Loss of income could directly/indirectly total to the financial trouble of guardians of children with special needs. Effect of children with developmental disabilities on the family also has consequences for the guardians health related quality of life. Indeed, some studies have reported that caregivers of children with ASDs not only bear greater financial and time burden associated with child’s care but also suffer from poorer health outcomes when compared to the caregivers of children without ASDs (Cidav et al., 2012; Kogan et al., 2008; Wang and Leslie, 2010). One could speculate that children with both DDs/MHCs may have extensive health-care needs due to presence of multimorbidity, and this could translate into greater health-care use (Bitsko et al., 2009; Boulet et al., 2009; Gurney et al., 2006).
Disparities still live in early identification, useful therapies, and rights to services for children with developmental disabilities, including minority and unindustrialized communities. Parents, and indeed family members, of children with developmental disabilities experience challenges that differ from those experienced by parents of typically developing children (Woodman, 2014). Caregivers of children with developmental disabilities encounter obstacles that vary from those knowledgeable by parents of commonly developing children. When a child with one or more disabilities is born into a family or when parents receive the diagnosis of their child’s disability, they often experience a range of emotions (e.g., shock, grief, anger) that are somewhat similar to those experienced upon learning about the death of a loved one (Kandel and Merrick, 2003).
Caregivers aware with such emotional reactions demand a stretch of time to adapt, through that time, caregivers may be affected.
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