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Running head: HEALTH CARE Health Care for Families and People with Disabilities [author's name] [author's affiliation] Health Care for Families and People with Disabilities Disability is defined by Newacheck and Halfon (1998) as a long-term reduction in ability to conduct social role activities because of a chronic physical or mental condition. Krahn (as cited in Krahn, Hammond, & Turner, 2006) noted that, until recently, disability was presumed equivalent to illness, with similar expectations of dependence, inactivity, and exclusion from participation in community life that are typically associated with illness. Who are individuals with disabilities? This diverse group includes children with developmental disabilities, adults with chronic mental or physical problems, persons with severe acute injuries (work-related or not), and those with sensory disorders and associated communication difficulties (Lawthers, Pransky, Peterson, & Himmelstein, 2003). The authors add that the individuals represent a range of impairments, from those who are fully self-sufficient at home and / or in the workplace, to those who are entirely dependent on others for custodial care and decisions about their health care. Lawthers et al. (2003) suppose also that the clear challenge to the health care system is to deliver services to people with disabilities that are appropriate, efficient, effective, and coordinated in such a way so that the unique needs of each member of this heterogeneous population are met.
Who are individuals with developmental disabilities? By definition of Lewis, Lewis, Leake, King, and Lindemann (2002), such persons include those with severe and chronic conditions that occur prior to 22 years of age, result from mental or physical disorders, and require interdisciplinary care. The Developmental Disabilities Services and Facilities Construction Act along with the Developmental Disabilities Act of 1984 (as cited in Lewis et al, 2002) add that the developmentally disabled population includes not only the mentally retarded, but also those with cerebral palsy (who may or may not have cognitive deficits), autism, epilepsy, and a range of genetic syndromes. As Krahn, Hammond, and Turner (2006) point out, health care clinicians play a critical role in creating quality health care, and the health care systems of different countries rely on different professions to play central roles in primary health care, including physicians, nurses, occupational therapists, and social workers. The authors enumerate a number of organizations and authors providing recommendations to address the health needs of people with disabilities, and add that these recommendations vary by country and disciplinary perspective. Hand (as cited in Krahn, Hammond, & Turner, 2006) supposes also that, in addition to provision of medical care, the role of the health care clinician often includes advocacy and information about services.
A small-sample study performed in the United Kingdom by Carlson and Hyde (as cited in Krahn, Hammond, & Turner, 2006) obtained data indicating that families preferred generally the consistency in health care provider that lifespan services provided. Heyman et al. (as cited in Krahn, Hammond, & Turner, 2006) argue that the requirement to manage complex health needs with limited resources causes service providers to simplify, standardize and routines care and that simplifying responses makes organizations and experts systematically blind to circumstances requiring customized solutions. In 1981, British Medical Journal published Dr Valmans article named The handicapped child with very useful and in-depth recommendations as to discovery of abnormalities, parental reactions, first and second consultations, assessment and treatment. However, the Lancet Journal was much more deep and exact when naming one of its editorials of 1975 The handicapped family.
Indeed, it is well known that at least parents and relatives of children with developmental disabilities are inevitably affected by the childs disability which concerns therefore many lives; hence, a significant share of the population has been involved with disability in some way (Tracy & Henderson, 2004). Since many people with chronic illnesses and, especially, developmental disabilities are children, the pediatric aspect of the issue under consideration is certainly of special interest. According to Newacheck and Halfon (1998), a significant proportion of children, estimated at 6. 5 % of all US children, experienced some degree of disability. The authors revealed that the most common causes of childhood disability were respiratory diseases and mental impairments, and concluded that childhood disability has profound impacts on children, the education system, and the health care system. The presence of a childhood disability is definitely associated with elevated use of health care services (Newacheck & Halfon, 1998). On average, children with disabilities were reported to have 8. 8 physician contacts annually while those without disabilities had 2. 9 ones only.
What does the child with disabilities need? As Tracy and Henderson (2004) point out, such a child does need the same things all children need family, fun, friends and medical care. What does primary health care for a child with complex medical needs require? Those authors provide the following list: learning about the disability and known associated medical conditions partnership between the child, parents, general practitioner, pediatrician and other specialists of relevance good communication between all those involved into the situation knowledge of, or where to find out about, community support structures such as specialist childrens early intervention services team, disability services, local council services, support and advocacy services, etc. In 2002, Medical Home Initiatives for Children with Special Needs Project Advisory Committee published a policy statement dedicated to the medical home concept. According to this statement, the medical care of infants, children, and adolescents ideally should be accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective.
It should be delivered or directed by well-trained physicians who provide primary care and help to manage and facilitate essentially all aspects of pediatric care. The physician should be known to the child and family and should be able to develop a partnership of mutual responsibility and trust with them. These characteristics define the medical home. In total, the medical home concept described in that statement includes 39 elements (Strickland et al. , 2004). This article of Strickland et al. (2004) reports the findings of the National Survey of Children with Special Health Care Needs regarding parent perceptions of the extent to which children with special health care needs i. e. , according to McPherson et al. (as cited in Strickland et al. , 2004), those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or an amount beyond that required by children generally have access to a medical home.
This Survey represents an unprecedented opportunity to establish uniform prevalence estimates for children with special health care needs and to gather essential information on how this population of children and families fares in the current health care environment; a major component of the survey addresses the medical home. The authors stress that children with special health care needs require more than the routine physician visit to become and stay healthy. The US Department of Health and Human Services (as cited in Strickland et al. , 2004) claims that children with special health care needs do need a convenient, reliable source for comprehensive care where families are welcomed and encouraged to be involved in their childs care and where comprehensive services are provided and coordinated. However, according to data from the 1994 National Health Interview Survey (as cited in Strickland et al. , 2004), 5. 6 % of children with special health care needs nationwide were without a usual place to go when they were sick or needed advice about health care, and a significantly larger number of these children received health care that was difficult to access and inadequate to address their complex needs. It is important that, in opinion of Bethel et al. (as cited in Strickland et al. , 2004), children with and / or at risk for developmental or behavioral delay may be significantly less likely to receive comprehensive services than children who do not have special needs. The medical home concept encompassing the characteristics of pediatric care that have long been considered essential for all children, is currently receiving widespread national attention as a mechanism for ensuring quality in health care for children and their families (Strickland et al. , 2004).
As the authors point fairly out, families, child health professionals, and health plans have endorsed the concept of medical home as a standard of care, but much remains to be established to operation alize and ensure implementation of all aspects of the medical home. Strickland et al. (2004) have successfully operational ized the medical home concept using the National Survey of Children with Special Health Care Needs. This operational ization has included five major components: 1) having a usual place for sick / well care, 2) having a personal doctor / nurse , 3) experiencing no difficulty in obtaining necessary referrals, 4) receipt of needed care coordination, and 5) presence of family-centered care. According to Cooley and McAllister (2004), there is a need to demonstrate that outcomes for children and families are improved when care is provided in a medical home. The authors add that continued development of medical home quality improvement activities is dependent on an effective spread strategy, and that the establishment of medical homes becomes a vital community resource for all children and children with special health care needs and their families. The goal of comprehensive care within a medical home can be realized through this quality improvement process.
The movement toward this approach to improved health care for children with special health care needs not only reduces the stress on the pediatric health care dollar and improves health outcomes but improves the quality of life for children with special health care needs and their families as well. The results obtained by Strickland et al. (2004) show that in 2001 the overall prevalence of children with special health care needs was 12. 8 % nationally, and among such children, 52. 6 % had access to a medical home using the all 5 above-mentioned criteria. Unfortunately, poor children were almost twice more likely not to have a medical home than non-poor children. Children whose special health care needs had a significant adverse impact on their activity levels were more than twice as likely not to have a medical home as children whose special health care need had no such impact.
At last, more than 16. 4 % of children with special health care needs were reported to have unmet health care needs. A significantly greater percentage of children without a medical home (23. 0 %) were reported as having an unmet health care need than children with a medical home (9. 9 %). The researchers conclude that providing sufficient information, encouraging partnership, being sensitive to values and customs, spending enough time, and listening to the family's concerns are core elements of a medical home, and that the benefits of having a medical home are clearly reflected in the survey conducted. Under insurance may be one of the reasons for a sensibly worse access to care among children with special health care needs. In particular, in the United States, of 38866 children with special health care needs interviewed, one third (! ) were classified as underinsured (Kogan, Newacheck, Honberg, & Strickland, 2005).
These children were significantly more likely than those fully insured to have unmet health needs, and their families were more likely to report difficulty in obtaining specialty referrals, experience financial problems, and report that the childs condition caused family members to reduce or stop work. The 2001 National Survey of Children with Special Health Care Needs demonstrated also that although the majority of children with special health care needs have adequate health insurance, additional work is needed to improve the adequacy of insurance, particularly for children below the poverty line, Hispanic children, and those with the most limited functional ability (Honberg, McPherson, Strickland, Gage, & Newacheck, 2005). In addition, the survey results showed the importance of continuous and adequate health insurance, because children who met the health insurance core outcome had fewer unmet needs. Moreover, Newacheck et al. (as cited in Wise, Wampler, Chain, & Romero, 2002) have clearly documented that the combination of chronic illness and lack of health insurance can result in serious unmet health care needs. Research by Wise et al. (2002) highlights the relevance of this fact to current welfare deliberations by documenting particularly serious gaps in health insurance coverage among poor, chronically ill children. Committee on Children with Disabilities (1999) draws relevantly attention to care coordination defined as a process that links children with special health care needs and their families to services and resources in a coordinated effort to maximize the potential of the children and provide them with optimal health care.
The Committee supposes that economic and socio-cultural barriers to coordination of care take place and affect families and health care professionals, and that in their important role of providing a medical home for children, primary care pediatricians have a vital role in the process of care coordination, in concert with the family. In opinion of the members of the Committee, care coordination is the key to efficient management of the many complex issues surrounding the care of children with special health care needs within the context of the medical home, and successful care coordination results in optimal outcomes for children with special health care needs and their families. Without coordination, individuals may experience delays in receiving care or perhaps not receive services at all (Lawthers et al. , 2003). In 2005, Council on Children with Disabilities had confirmed these conclusions in its up-to-date policy statement.
Another approach, which could benefit these children and their families by improving access and coordination of services, is so-called managed care (see, e. g. , Committee on Children with Disabilities, 1998). Freund and Lewis (as cited in Committee on Children with Disabilities, 1998) define managed care as a delivery system that integrates financing and delivery of specified health care services by...
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