Purpose: The purpose of this qualitative study was to explore rural/urban differences in service providers’ perceptions of challenges and facilitators to services for children with special health care needs (CSHN) and their families in southeast Georgia. Methodology: A total of 23 individual interviews were conducted with service providers in one rural county in southeast Georgia (N = 12) and in one urban county in north central Georgia (N = 11). Interviews were based on the National Survey of Children with Special Health Care Needs 2009-2010 survey. All interviews were audio recorded, transcribed and coded with the intent of identifying themes and illustrative quotes. Findings: Service providers discussed a variety of challenges to accessing services related to socioeconomic status and the transition out of the school system. Urban and rural service providers’ perceptions were similar overall, with the exception of lack of transportation and access to a variety of services in rural area. Service providers overcome challenges through identifying parents’ needs and limitations and adapting service provision. Some of the facilitators mentioned by both urban and rural service providers are availability of transportation and resources. Practical Implications: The results of this study provide public health practice and policy implications that could guide the pathways of targeted interventions to improve the access and availability of variety of services for CSHCN. Originality/value of paper: This paper represents an in-depth exploration of service provider’s perceptions of challenges and facilitators related to service provision for children with special healthcare needs.
According to American Community Survey, disability is characterized by serious difficulty with four basic areas of functioning―hearing, vision, cognition, and ambulation [
Since youth make up considerable portion of individuals with disabilities; several studies have explored differences in utilization, accessibility and availability of support services for children with special health care needs (CSHCN) while transitioning to adult services, from parents’, teachers’ and youth perspectives [
Georgia is comparable to national averages when it comes to disability statistics. In Georgia, approximately 12% of the population has one or more types of disability, and, of these, about 4% have cognitive impairment, and approximately 2% have hearing, visual or ambulatory impairment [
In Georgia, nearly 15% of individuals with disabilities live in rural areas, while 11% live in urban areas [
Study counties were selected based on the urbanization categories of the National Center for Health Statistics (NCHS) 2006 NCHS Urban?Rural Classification Scheme for Counties [
A total of 23 individual interviews were conducted with service providers in one rural county in southeast Georgia (N = 12) and in one urban county in north central Georgia (N = 11). Participants were recruited if they were a direct provider of a support (e.g. respite care or social services) or health service. To recruit participants, the researchers contacted two agencies (one from each area) that function to link families and individuals living with a disability to service providers in the surrounding area. Participants included health practitioners (physical therapist, occupational therapist, nurses), service agency staff and administration (advocacy groups, resource centers, recreation personnel), and school support personnel (adapted physical education specialist, physical, and speech therapists).
Each interview was conducted by a trained interviewer who used an interview guide based on the National Survey of Children with Special Health Care Needs 2009-2010 survey [
All interviews were audio recorded and transcribed verbatim. To carry out the analysis, transcripts were imported into MAXQDA V 11 software program. Each transcript was coded by a primary coder and was then shared with a secondary coder for review. To ensure consistency and achieve reliability, both coders communicated to discuss differences in coding to reach 100% consensus. Illustrative quotes were selected from both counties with the intent of demonstrating differences in challenges and facilitators.
The following sections summarize major themes. Whereas themes cut across areas, differences between urban and rural areas are noted within each theme.
Socio-economic status is the determining factor in overcoming challenges to accessing services for children with disabilities. From the initial diagnosis to geriatric parents caring for an adult child with disabilities, raising a child with a disability can be an overwhelming process, particularly for low-income parents. Parents who are not limited by finances can afford transportation to and from services within and outside of their home county, can afford after school and summer respite care, live in homes and own vehicles that can accommodate specialized equipment, and can arrange for their child to participate in community-based activities including organized sports for youth with disabilities. On the other hand, low income parents usually lack health insurance and cannot afford the out of pocket cost of services for child with disabilities which acts as one of the major challenges in accessing supportive services for youth with disabilities. As one rural service provider highlighted―
“I think that the frequency of use may be related to social economic standing in the community. If the individual family has transportation and they have money and they’re educated they’re more likely to come in contact with service provision; on the other hand, those families who are not well educated, socioeconomically deprived, they’re less likely to come into contact with services.”―Rural Service Provider
Urban service providers also mentioned that their clients often complain about difficulty in accessing services because they don’t have Medicaid or other private health insurance to cover the cost of the services. Most of the services available in the urban counties are paid services, and individuals who do not have Medicaid or other private health insurance either have to pay out of pocket for the services or have to find organizations that provide free services. Such as an urban service provider stated, “I think probably a lot in that I know people that will only access whatever support their health insurance offers. So, if it’s not available in insurance, then they’re not going to do it.” Providers also pointed out that even if one has Medicaid or Medicare, it is not guaranteed that it will cover full cost of the services. Moreover, lack of Medicaid or other private health insurance also hinders access to preventative care such as immunizations, which in longer run can lead to greater health risks. In addition to this, according to service providers, low income parents face additional challenges including grandparents raising grandchildren, illiteracy, unsafe neighborhoods, inability to stay home with their child, and lack of education. Perhaps, most importantly, low income parents face blame. They are said to have low motivation, lack of follow through, lack of time, denial, and a general “belief that it’s someone else’s job to take care of their child.”
Lack of transportation, public or private, also act a challenge in accessing support services. Both urban and rural service providers mentioned that even though public transportation is available in urban areas, some clients find it difficult to pay for public transportation because of the limited income or because parents themselves are working and have time restrictions, so they usually have to seek help from others to take their child to supportive services. As one rural service provider illustrated―
“Transportation is an issue for some families. We try to work with families. There are some families driving in from Glenville or Reidsville and we know that they could come or their child could benefit from coming twice a week but their families just can afford to drive back and forth so we work we always work very closely with the parents, sometimes they’re in the sessions with us and we’re showing them this is what you do this week. So we teach the parents to become their child’s therapist so we can help them not have to so the transportation so we see them once a week and teach them things to do on the week they’re not coming.” ―Rural Service Provider
In reality, low income parents, more so than middle to upper class parents, may not understand their child’s diagnosis, might face multiple challenges to accessing services, and might not feel sufficiently empowered to advocate for services. In terms of the school system, parents face additional challenges to obtaining services for their child, including not being listened to and having to work as parents who might not understand their child’s unique needs. As well as low income parents’ tendency to have negative experiences with school systems might also act as a barrier that can be especially overwhelming and might prevent them from working with schools to address their child’s needs. As one rural service provider highlighted―
“You have to understand the system, you’re going to be there for so many years and you have to work through it. So, that’s my joy to explain to parents. And getting the school system to open up and listen to parents because they don’t sometimes. They are the experts and we respect that but sometimes you have to listen to parents.”―Rural Service Provider
Whereas the transition into the school system is perceived as an easier process for youth with disabilities, the transition out of the school system is fraught with difficulties. In most of the cases, from the age of 3 to 22 years, families of youth with disabilities have the support of school system in caring for their child and accessing key services. Upon the child’s 22nd birthday, children with disabilities can no longer attend school. The framework for transition focuses on post-secondary opportunities, employment options, living opportunities, and recreation and leisure (Georgia Department of Education 2011). Although transition plans are required in the state of Georgia starting in ninth grade or the age of 16, transitioning into a community with a lack of specialized services for youth with disabilities is a stressful time. The emotional stress is usually followed by lack of proper transition plan by parents and transition teachers at schools. As illustrated by a rural service provider―
“They go from this nurturing environment, for a lot of these kids there’s somebody there taking care of them and a lot of these kids started the preschool disability program when they were three years old. You figure from 3 years to 22 years you’ve had someone basically looking out for you and boy the day you turn 22 your done, and if there aren’t any services out there for say to get a job or respite care, it would just be a shock. I can’t imagine since you were 3 years old and all of the sudden you’re 22 and your world take a 180. Not only for kids but for parents too as we mentioned before. They’ve had however many years of somebody taking care or looking out or educating their child to running into a stone wall…and nothing being available.”―Rural Service Provider
According to service providers, upon graduation from high school usually youth with disabilities “sit at home and do nothing” or return to school for further studies. In many cases, this situation has a dramatic impact on families, with one consequence being the loss of parental employment. Overall, results suggested the main barrier to a smooth transition out of school, is a cycle of dependence that is created by government and school interaction. Many families come to rely on financial and support services provided by the government and school system. Transition threatens this dependence and requires parents to function independently to receive services for their child. In many cases, for example, parents are afraid to engage their child in supportive employment after school for fear of loss of social security and disability checks. Without accurate information on when to plan for transition, what their children are capable of after graduating and how to access and maintain available services including government funding, the transition out of high school will continue to result in many young adults with disabilities being unable to become functional, contributing members of their communities.
“It’s very, very limited. If they’re lucky enough, I had a parent in here yesterday whose son graduated from high school and for the summer he was lucky enough to get accepted into a camp for individuals with disabilities. The camp is paid for by federal monies, she was able to get some sort of grant because she’s jobless and there is no father. So the boy is able to go and spend several weeks at camp but in two weeks he’s coming home to nothing and literally mom is in tears cause she just got a job and the boy’s coming home and her fear is she’s going to have to quit her job to stay at home with her son, so now her little step that she’s made progress with is going to be taken away.”―Rural Service Provider
Furthermore, according to service providers, parents are often unprepared to handle the reduction in services previously assisted by the school system once the youth graduates from high school. For example, speech therapy and physical activity opportunities decrease once the youth graduates high school. The loss of services upon graduation leads to eventual declines in youth functioning and quality of life. Over and over, service providers discussed the lack of planning for transitional issues on the part of parents and, in some cases, schools. Parents were described as waiting to the last minute to apply for transitional services, often because they were unaware of the time requirements for waiting lists and eventual receipt to any of the services. Schools, on the other hand, were described as beginning the transition discussion with parents too late in the process.
Both rural and urban service providers suggested overcoming challenges related to transition by encouraging discussions among schools, service providers, and families of disabled children as early as 6th grade. However, the state of Georgia only requires transition to begin at the beginning of high school or the age of 16 years [
Whereas parents of children with disabilities face numerous challenges in accessing services for their children, there are several factors that facilitate access to services. Both rural and urban providers can and do attempt to help overcome challenges through identifying parents’ needs and limitations and adapting service provisions to meet their needs. Some of the facilitators mentioned by both urban and rural service providers are―availability of transportation and resources (financial and institutional). To overcome transportation challenges, rural service providers mentioned that they include parents in service provisions and train them to deliver services on their own in lieu of more frequently accessing services. Whereas in urban areas, the availability of public transportation makes it more feasible to access support services for youth with disabilities and their parents.
Apart from the aforementioned services, some urban service providers offer family therapy services such as training and coaching for the parents. The training and coaching focuses on developing skill sets among parents which helps them in identifying and fulfilling the specific needs of their child and also deals with connecting parents to resources that they need such as vocation services, transition services, life and social skills sessions, community training, cognitive therapy, physical therapy, speech and language therapy, and occupational therapy.
Consistent with existing literature [
Findings from the present study supported the work of others that there is a critical interplay between roles of the family and social environments in which one lives [
These inequities are particularly acute when considering transition services out of the school for youth with special need. Providers in this study echoed findings from many previous studies that the process of finding employment, pursing additional educational or vocation training, and being included into the community [
Despite the many difficulties that families of children with disabilities face, service providers and families reported key strategies to meet the needs of their child. Rural providers used educational strategies to teach parents how to better care for their child and be less dependent on transportation to access the service. Urban service providers reported using additional educational techniques such as parent-to-parent training and coaching. The importance of collaboration between the family and provider has also been highlighted in the literature [
Delivery of services with youth with disabilities has been and remains a challenge. Studies that focus on the perspective of those providing services, particularly those with a “solution-orientation” are rare. The study discussed herein sought to shed light on not only the challenges faced, but also the solution-based approaches to the provision of services for youth with disabilities in rural southeast Georgia, USA.
This study was supported in part by funds from the Office of the Vice President for Research and Economic Development and the Jack N. Averitt College of Graduate Studies at Georgia Southern University.
MoyaL. Alfonso,AshleyWalker,AkratiGupta,JosephTelfair,GavinColquit, (2015) “It All Goes Back to the Services”: A Rural/Urban Comparison of Service Providers’ Perceptions of Challenges and Facilitators to Disability Services. Open Journal of Preventive Medicine,05,434-440. doi: 10.4236/ojpm.2015.510048