Recognizing disparities in health care for children with special health care needs

Introduction

Children with Special Health Care Needs (CSHCN) refers to the population of children “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 amount beyond that required by children generally.” ¹ This population is estimated to be about 14 million children, age 0–17, in the United States. ² According to Preskitt et al., 41% of these 14 million children are considered underinsured, meaning their health care needs are unmet or the quality is significantly impacted by lack of adequate insurance. These children utilize a significant amount of health care and other medical services as well as having bigger out-of-pocket medical expenses than physically healthy children. ³

Disparities in access to and quality of health care exist between CSHCN and physically healthy children and this inequality begins at a young age and continues into adulthood, often increasing with age. Health disparities refer to the irregularity in health care end results between divisions of the population, in this case CSHCN and physically healthy children. These irregularities can affect quality of life and increase the proportion of sickness and disease risk factors. Cheak-Zamora and Thullen report caregivers of these vulnerable children view the quality of the health care their child is receiving as lacking in a wide range of areas including significant shortages of health care providers trained to care for CSHCN and ineffectual and inconsistent care coordination. ⁴ They also have serious unmet needs when attempting to utilize specialist providers related to household income, race, and insurance coverage. Unfortunately, specialists are necessary for CSHCN to realize advancement and increased function.

Availability of high-quality health care is directly related to improved health for CSHCN. The Maternal and Child Health Bureau ¹ has identified six vital, fundamental measures of access and delivery of health care to CSHCN. These six measures are:

including families in health care decisions

Caring for a child with special needs is a complex task with many different factors impacting the child’s future quality of life. Many of these aspects are presently substandard and need to be reviewed and amended. The disparities that exist can and must be corrected. The following paper will examine the six measures the Maternal and Child Health Bureau has outlined and how access and quality of health care for CSHCN compares to the health care received by physically healthy children. Possible solutions to fix these disparities will then be examined.

Families left out in the decision-making process

The primary caregivers of CSHCN are generally the parents. A study by Earle and Heymann ⁵ assert 53% of parents caring for a child with special health care needs are employed outside the home and most work full time. The cost related to time spent away from work, out of pocket expenses, and loss of wages due to medical appointments for these children significantly affects a family with worries associated with job insecurity, missed mortgage or rent payments for housing, and food shortages. In addition, CSHCN miss school three times as often as physically healthy children, which results in further missed days at work for the primary caregiver. The parents’ income impacts the quality of their child’s health care. According to Cheak-Zamora and Thullen, ⁴ parents of CSHCN are 51% less likely to be included in health care decisions for their child than parents of physically healthy children. This disparity not only affects the child with special needs, but it affects the entire family when loss of wages and medical expenses occur.

The parents should be included in all decisions made related to the health care of their child, but often times, they are not due to multiple factors. Inkelas et al. ⁶ report language barriers such as a limited understanding of English, total family income, the educational level of the child’s mother (high school only or below), the child’s age, and race and cultural background all influence how much the caregivers are involved in the decision-making process for their child’s health care needs. In addition, how severe the child’s special health care needs are also negatively affects the child’s access to care. Overall, health care providers afford less time and minimal information to parents of CSHCN.

Limited medical home access

The medical home is defined as a model for primary care excellence that is all-encompassing, patient-focused, easily accessible, and uses the care team approach to deliver safe, high-quality health care. According to Cheak-Zamora and Thullen, ⁴ CSHCN are at a distinct disadvantage when it comes to having access to a medical home. Sannicandro et al. ⁷ report CSHCN have limited access to medical home support when they are Black, Hispanic, live in a home with a family structure other than two biological parents, and if their special needs alter their capability of managing their activities of daily living.

Additionally, health insurance coverage, household income, and the size of the family are directly related to how much medical home services are used. Sannicandro et al.’s ⁷ study took information from two surveys conducted nationwide on CSHCN, one in 2005/2006 and the other in 2009/2010 and compared the results. The comparison showed a decline in access to medical home support as well as care coordination during this five-year interim.

Primary care physicians and pediatricians have an important function in the medical home model. Their responsibilities include that of assisting families in the access of services such as therapies, obtaining referrals for specialists, and guiding the health care decisions made for CSHCN. These functions are often problematic for health care providers due to a lack of understanding of what resources are available and the complicated system of federal, state, and local aid and assistance. ⁸

The need for health care transition services

Health care transition services, in this context, refer to the process by which young people with special health care needs are moved from pediatric focused to adult-focused health care. The age group being discussed is 19–30 year olds with developmental disabilities (DDs). DD is defined as a severe, chronic state of health that affects cognitive and/or physical abilities, is diagnosed before age 22, results in an inability to manage at least three major activities of daily living (i.e., dressing, bathing, feeding, grooming), and causes dependency on aid for the duration of life. ⁹

The health care transition process is designed to educate young people with DD so they can reach an understanding in what skills will be necessary for them to take care of their own health care needs. To make this transition favorable depends on procuring suitable adult primary and specialty care. Studies have shown CSHCN do not receive comparable health care transition services to that of physically healthy children.

The disparity in transition services may partly be due to a lack of health care providers trained to care for CSHCN. Cheak-Zamora and Thullen ⁴ report a serious shortage in health care providers who are educated and comfortable in managing services for CSHCN. A study by Prokup et al. ⁹ found 81% of medical students surveyed answered they have no training for providing health care services for patients with disabilities. In addition, 58% of medical schools report adding a course of study focused on caring for patients with disabilities is not a primary concern. A study conducted by researchers at the Ohio State University Wexner Medical Center’s Nisonger Center ¹⁰ found young adults in health care transition at a greater disadvantage receiving needed care than their physically healthy counterparts. The young adults with DD surveyed had two times as much trouble trying to see a specialist and reported having at least one health care need unmet.

Barriers to community services

CSHCN have a much lower probability of being able to access services in their community. Sannicandro et al. ⁷ contend these children have about a 67% lower chance of receiving services compared to physically healthy children. Parents of CSHCN, when surveyed, respond with less than optimal health care experiences, particularly unmet needs and inadequate benefits. ⁶ Services such as specialty therapy and recommended durable medical equipment are often necessary for CSHCN to improve their quality of life but Martin and Huffman ¹¹ state these children are much more likely to have unmet needs for these services. Complex, moderately-severe to severe health conditions and the age of the child have the most impact on access to health care with teens experiencing more limited access than other age groups. ⁶

Some potential barriers to CSHCN receiving necessary community services are transportation, handicap accessibility, financial burdens, scheduling difficulties, and office personnel’s understanding of disabilities and their willingness to work with these patients.

The most important question to ask these patients and their families is what their needs are and then be open to assisting in meeting those needs. ¹¹

Inadequate health insurance

Proper insurance coverage for the multiple health care conditions CSHCN require is an ongoing issue. CSHCN utilize more health care and supplementary services than physically healthy children. Out-of-pocket expenses, loss of wages due to caregiving responsibilities, and the complexity of the health care system itself can drain a family financially. Sannicandro et al. ⁷ report these children have about a 25% lower chance of having health insurance that meets their needs.

CSHCN who have insufficient insurance coverage (underinsured) experience comparable unmet needs to those without any insurance in terms of financial burden and access to care. ³ DeJong et al. ⁸ report these children utilize Medicaid and other federal and state-funded insurance as well as other programs that provide for the care of a disabled child. These government programs have been experiencing severe cutbacks and shortages in recent years which negatively impact CSHCN. According to The Henry J. Kaiser Family Foundation, ¹² the Children’s Health Insurance Program (CHIP), a state and federally funded system, had its federal funding expire in September of 2017.

What this means for CSHCN is a reduction in their health care insurance coverage and, in turn, negative implications for receiving timely care, and getting prescription medications. Families already in a financial crisis will undoubtedly be forced to incur medical debt. Families with CSHCN are often dependent on programs such as food stamps, social security, and Medicaid and a reduction or cancellation of benefits can cause detrimental implications.

Lack of early interventions

The one area surveyed where CSHCN scored higher than physically healthy children is the access to early health care screening and follow-up evaluations. ⁴

This survey is questioned by the researchers for validity because the questions asked may be misinterpreted and thus indicate a higher satisfaction level than is the case.

The Centers for Disease Control and Prevention (CDC) ¹³ recommends every child be monitored for developmental delays and disabilities during routine well-child appointments with their physician. The Individuals with Disabilities Education Act (IDEA) ¹⁴ states every child under the age of three years’ old who is at risk should receive appropriate intervention services. This treatment service is provided by each individual state system. The problem arises with the fact that often these children do not have access to routine well-child appointments with their physician for a number of reasons including lack of services in their community, monetary restrictions, and transportation. For these reasons and others, they are excluded from early intervention opportunities which negatively affect their future health, functionality, and success as an adult.

The disparity of health care for CSHCN

Advocating solutions

Obtaining health care transition services

Young adults with disabilities, 19–30 years of age, are less likely to receive sufficient assistance with health care transition when changing from a pediatrician to a primary care physician. Walker ¹⁷ states there are four questions that should be asked of these individuals when seeking to improve the quality and accessibility of their health care. First, survey patients with DD, asking how content they are with their health care, specifically the quality of the care they are receiving and if they feel their provider takes enough time with them to explain and teach. Ask the patient about any perceived unrealized health care need. Then examine possible obstacles to receiving care these patients may face, such as issues with transportation, schedules, and out-of-pocket medical expenses. And lastly, spend time with the patient with DD and find out what they need and then be open to making the needed changes.

These patients could substantially benefit from having a patient advocate to help guide them through the process of finding a suitable health care provider, trained in the care of patients with special needs. Health care transition support services can offer assistance by making sure the patient continues having access to health care, enabling the patient to assume control over their own care, and successfully transitioning to an adult health care provider. Crane ¹⁸ writes one of the objectives of Healthy People, 2020 is to increase health care transition services to young adults with special health care needs.

Pediatricians can assist in the process of transition early by talking with the patient and the family and expanding the discussion yearly as the child matures. The pediatrician and the rest of the care team can put together a thorough medical report that includes the patient’s health history and a treatment plan to implement in the case of an emergency. In addition, specific recommendations for how to communicate with the patient should be included such as if the patient is verbal or nonverbal. This report will accompany the patient when transitioning to an adult health care provider. IDEA mandates all public schools must make available transition planning services until the child reaches the age of 21. This service and the child’s Individual Education Program (IEP) teachers and therapists can together help to make for a successful transition. ¹⁸

Access to services provided in the community

CSHCN are much more limited in their access to community-based services than physically healthy children. Some of the reasons for this include a lack of trained health care providers and escalating out-of-pocket costs for services. In addition, families of CSHCN are often unaware of services in their community such as support groups, special education classes, and therapies.

Physicians and their staff who are proficient in the care of CSHCN and are knowledgeable about the availability of community-based services can provide an important support system for these families. In addition, a partnership between a physician treating CSHCN and an attorney who is knowledgeable in government assistance programs, insurance benefits, and legal rights can aide in the care of the patient and the family as a whole.

DeJong et al. ⁸ report most pediatricians caring for CSHCN do not consider pursuing social aspects of health to be within their scope of practice. Social aspects of health refer to economic status, insurance coverage, housing issues, food shortages, and job-related stressors. DeJong et al. ⁸ state studies point to a lack of training in medical professionals to screen for these social aspects and furthermore, the studies suggest giving these providers the tools they need to address problems the families of CSHCN face will improve understanding. Given this knowledge and training, medical providers can refer families for legal services in the community which can ultimately improve the patient’s and family’s well-being by improving access to services and reducing medical costs by navigating the complexities of government assistance and other available benefits for them. Attorneys well versed in assistance programs, insurance benefits, community-based services, tenant rights, and employer-related issues can significantly reduce stressors these families face on a daily basis and thus increase the likelihood of positive health outcomes.

Appropriate health insurance

Health insurance for CSHCN is an extremely relevant topic when discussing disparities in health care access and delivery. Preskitt et al. ³ state having insufficient insurance is more of an obstacle to care than having no insurance at all. Because of necessary limits to household income stipulated by federal and state Medicaid programs, many families do not qualify for assistance but in fact, can afford only the minimum coverage their health care plans offer, often with high deductibles. This makes out-of-pocket medical expenses a serious financial burden and forces families of CSHCN to make difficult decisions regarding their child’s needs versus the family’s needs.

Martin and Huffman ¹¹ report with regards to therapies, 19.6% of parents who responded to a survey state their child has unrealized medical needs due to costs involved and 6.7% state that lack of insurance is the reason. There must be needed changes made to the health care system in the United States. Cheak-Zamora and Thullen ⁴ recommend state and federally funded assistance programs be measured for quality improvement throughout the development process, not just at the beginning and end.

Funding for state and federal assistance programs such as Medicaid are in jeopardy of experiencing massive budget cuts during the current political administration. Current budget proposals in Congress are pushing for $800 billion in Medicaid cuts over the next 10 years.

According to Paul, ¹⁹ the increase in Medicaid funding under the ACA decreased the amount of bankruptcies and the amount of delinquent health care bills by $3.4 billion in just two years. It has been shown Medicaid contributes to families’ well-being by offering financial security against unanticipated health care costs.

Special interest groups, foundations that represent CSHCN, and individual citizens must lobby their local, state, and federal representatives to vote against budget cuts for these important programs. The proposed health care reform designed to replace the ACA did not pass Congress earlier this year in large part because of the outcry of our representatives’ constituents. Phone calls and letters written to state and federal representatives and senators can emphasize their constituents’ positions regarding these issues. Families in the United States with CSHCN must pass the word to their friends, coworkers, neighbors, and contacts to put pressure on their representatives to vote against any health care reform that cuts funding or denies access to health care for those with preexisting conditions. A new health care reform is currently being written in Washington and time will tell what provisions it has made for CSHCN but it is imperative that everyday citizens read the fine print of these proposed reforms and let their voices be heard if they disagree with the changes written in.

Early and ongoing examinations

Pediatricians, other health care providers, and government agencies agree it is imperative all children should be evaluated for disabilities and DD during routine doctor visits. The IDEA ¹⁴ is a law written in, 1975 and amended in, 2015 that guarantees special education and services to children with disabilities. Infants and children up to two years of age qualify for early services under the IDEA. In addition to the IDEA, the U.S. Department of Education’s Office of Civil Rights, the Rehabilitation Act of 1973, and the Americans with Disabilities Act of, 1990 all offer assistance to CSHCN and their families. It is vitally important that families with CSHCN are made aware of these agencies and can access benefits from their resources.

A network of patient advocates, established in the community and educated in all available resources should be contacted. A patient advocate, whether it be a health care professional, social worker, or attorney, can assist and guide families in accessing government assistance programs they were previously unaware of. This kind of early intervention can significantly improve the quality of care and the health status and functionality of the CSHCN. Routine doctor visits in a private practice, free health clinic, or state health department is a good time to offer the guidance of a patient advocate to the caregiver.

Patient advocates can be volunteers or financially supported by funding provided by foundations, donations, and government agencies. Some insurance companies and employers offer patient advocate services. Many hospitals have patient advocates on staff. Volunteer patient advocates can be retired health care professionals or other individuals with a special interest in working with this vulnerable population. One such network is the Patient Advocate Foundation, but there are many more. Patient advocates can help with finding the right health care provider, negotiating medical bills, and assistance with identifying available services the family might benefit from. Families of CSHCN can call the National Information Center for Children and Youth with Disabilities and request early intervention services. However, this cannot be accomplished unless the caregiver is knowledgeable about this process and has the necessary information to make the call. A patient advocate can remedy this situation. If no such network of patient advocates exists in a particular community, one should be established.

Conclusion

The disparities CSHCN experience with health care access and delivery are significant and can span their lifetime. They typically have less than adequate medical care, access to services, and health insurance than their physically healthy counterparts. They also have more health care expenditures, medical equipment expenses, and health-related challenges. These disparities need to be addressed and solutions found in provider offices, government agencies, medical schools, and organizations dedicated to assisting CSHCN. Solutions are possible but it will take insight into this unique population and dedication on the part of legislators, health care professionals, the deans of medical schools, and others who have an invested reason in wanting to see change and improvement. It will also take perseverance and persistence among the families and caregivers of CSHCN to push for equality and improvement by utilizing all available resources. A valuable resource that may often be overlooked is the Human Resources department at the caregivers’ employer. With the help of patient advocates, attorneys, and medical professionals, these families can stay current on proposed federal and state health care bills and get involved in local grassroots movements designed to draw attention to disparities these children experience on a daily basis.