There has been a revolution in the past 50 years in the United States in the care and education of children born with disabilities. The revolution started with the Education of All Handicapped Children Act, first passed and lightly federally funded in 1975 and now called the Individuals with Disabilities Education Act (IDEA), reauthorized initially in 2002. These transformations have not been without enormous costs, both human and financial.
A society that requires that these children go to school, despite the challenges they bring to education, will also require that they have the assistance that they need to get through the school day. Some of this assistance is in the form of aides in the classroom, and other kinds of assistance may translate into a need for wheelchairs for certain individuals. If the system breaks down, as it did in Long Island, New York, in 2009, children cannot get to school, sit properly in the classroom, or do homework. In the case of the New York situation, the company that sold and serviced wheelchairs ended that part of their business because of declining reimbursement from Medicaid and Medicare. The appliance delivery system can be fragile, and the concerns expressed by parents and consumers mean that the chronic health needs of these persons with disabilities, who are often dependent on these wheelchairs to maintain independence and inclusion, can be called into question (Whittle, 2009).
When dozens of wheelchair users were impacted by the end of this part of the business of this Bethpage, New York–based firm, there were also ripples created in the public sector. Looking for an explanation, a state senator and a member of the assembly from that district tried to find out why it took 9 months from the time of a request to the reception of the approved customized wheelchair by a person who is dependent on this appliance for mobility (Whittle, 2009).
Finding, as Whittle (2009) stated, a new vendor because the wheelchair division of Home Care Supply could not be financially sustained by so few orders receiving approval was, and continues to be, daunting for users and their parents. Highly skilled specialists employed at these sorts of companies take measurements and assemble a customized chair, often for a child or adolescent who uses it in a school setting as well as at home. Rationing by inconvenience reached beyond Bethpage, so that customers in Queens County, a part of New York City, were also looking for new venders and companies that did repairs (Whittle, 2009, p. A13).
With the “great recession” advancing and state budgets running excessive deficits, even fiscally conservative states like Kansas have had to rein in Medicaid expenditures because state revenues have not kept up with state expenses. Reimbursements to providers of durable medical equipment were sharply reduced in 2010 and businesses throughout Kansas were unwilling to operate at a loss to fulfill orders for Medicaid recipients, who clearly could not cross state lines to utilize their benefits (Hollingsworth, 2010).
The story of the loss of access on Long Island, NY, and in Kansas to wheelchairs and their maintenance represents a microcosm of the needs expressed by cohorts of children born prematurely. The lower the gestational age is at birth, as shown in a Norwegian study (Moster, Lie, & Markestad, 2008), the higher the need will be for long-term care of these individuals. The risk of being born with cerebral palsy was 900 times greater for infants born between 23 and 27 weeks of gestation, compared with those born at 37 weeks or later. Intellectual disability was 4.4% for children born between 23 and 27 weeks of gestation (vs. 0.4% for those at 37 weeks or later). Last, premature births were 10 times more likely than non–premature births to result in that person receiving a disability pension. For the cohort in the study who were born between 1967 and 1983, the risks of medical, and even some social, disabilities (e.g., level of education attained) in adulthood increased with decreasing gestational age (Moster et al., 2008).
Those born prematurely may not represent all the cases in which long-term care is required for a child, but disability during childhood leads to increased therapy costs, home adaptations, and specialized day care. Families who are poor when a child is born may have greater difficulty managing with a child with a disability than families who start out above the poverty line, and families with a child with a disability may become poor as a result of extra expenses. The National Survey of America's Families, conducted in 2002 by the Urban Institute and Child Trends (Abi-Habib, Safir, & Triplett, 2004), found that among the 42,000 households reached, those families with a child who had a disability expressed more concern that the their food would run out, that food would not last, or that meals would be skipped. In addition, parents of a child with a disability were twice as likely as other parents to receive emergency funds or be unable to pay the rent (Parish et al., 2008).
The need for services and the cost of care for a child with a serious chronic illness or disability are exacerbated when the two conditions of poverty and disability are combined. In fact, the analysis of recent cross-sectional data derived from the 2005–2006 National Survey of Children with Special Health Care Needs chartbook (CSHCN; Health Resources and Services Administration, 2009), found that parents of children with neurologic conditions were more likely to report unmet health care needs for their child than other parents of children with special health care needs. Parents of children with special healthcare needs with at least two conditions reported more visits for health care services, the need for more services, and more unmet needs than parents of children with special health care needs with a single condition (Bitsko, Visser, Schieve, Ross, Thurman, & Perou, 2009, p. S343).
The co-occurrence of neurologic and other medical conditions poses a difficult problem in care coordination for this population. Primary care, mental health care, education, and specialized medical services are requirements that may be difficult to optimize in a service system that does not create financial incentives to furnish care coordination. In the data analysis performed by Bitsko et al. (2009), they were able to identify conditions included in the 4th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM; American Psychiatric Association, 1994) that strongly correlated with poor access to service and a disproportionate set of service needs. As Bitsko et al. stated:
Notably, the non-DSM-disorder subgroup was least likely to have unmet needs or to be dissatisfied with care coordination, whereas the 2 subgroups of CSHCN with multiple conditions had the greatest unmet needs and dissatisfaction with care coordination. Care coordination may be more challenging for children with multiple conditions, which could result in more unmet needs among this subgroup of CSHCN. (p. S349)
A federal–state–sponsored insurance program can assist these children but offers limited benefits. The State Children's Health Insurance Programs (SCHIP) is a federal–state–funded program that allows families who do not qualify for Medicaid but do not have access to employer-based health insurance (or cannot afford to purchase an individual or family policy) to cover their child with preexisting conditions. The program provides a standard benefit package with modest premiums and minimal or no copayments for doctors' visits. Although there are children's health insurance programs in every state through which parents can voluntarily purchase subsidized insurance for a child, there are still gaps in coverage for this population.
The National Survey of Children with Special Health Care Needs, 2005–2006 (Health Resources and Service Administration, 2009) found that almost 9% of the families surveyed said that the children with special health care needs had no insurance for at least part of the study year. In addition, even among those with insurance, parents volunteered in one out of every three interviews that the insurance coverage was inadequate, given the child's condition, and one out of five families spent $1,000 or more in out-of-pocket medical expenses. Almost as many parent respondents said the child's conditions caused financial problems for the family. This information is available in Chartbook 2005–2006 (Health Resources and Service Administration, 2009) for this important national study.
It is especially difficult to establish promotion of access to a variety of services when the family or the child is uninsured. Uninsured persons, whether healthy or with one or more chronic conditions, receive less in the way of services than those with insurance. Bitsko et al. (2009) reported that,
Among CSHCN with neurologic conditions, those with 2 or more neurologic conditions (either at least 2 DSM conditions or 1 of each type) were more likely than CSHCN with a single DSM condition to have inadequate insurance, be uninsured, have public health insurance, and be living in poverty. (p. S348)
This discussion of how mental health and neurologic disorders can create complications in the delivery of health care and other services to children with special health care needs can also be applied to the kinds of barriers service providers encounter when attempting to look at adults with similar kinds of constellations of disorders. Do the models of care that have been constructed for adult patients with comorbidities address the types of mental health services required when there are multiple needs, among them psychiatric interventions? Often the research on children's service needs sets the agenda for studies of adults, a population equally in need of high-value care.
Arnold Birenbaum, PhD (E-mail: email@example.com), Professor of Pediatrics and Associate Director of the Rose F. Kennedy University Center for Excellence in Developmental Disability Education, Research and Service, Albert Einstein College of Medicine, Pediatrics, 1410 Pelham Parkway South, Kennedy 240, Bronx, NY 10461.