1. The Problem
Children with disabilities are among our nation's most vulnerable citizens. Their needs for health care, educational and social services, and income support are widely recognized as worthy government investments. By our estimate, in the United States, government-funded programs spend over $60 billion each year to help more than 15 million children with disabilities. Despite these major expenditures, many children with disabilities continue to face enormous difficulties in getting the supports, services, and benefits they and their families need. The complexity and fragmentation of the current child disability service system make it difficult for families to understand what benefits are available, how to access them, and how to piece together supports that best match their children's needs. In addition, contradictions and disincentives in the system sometimes work against the efficient delivery of services, especially early-intervention and prevention services.
In this fractured system, the outcomes for children with disabilities are often poor health and functioning, lower educational attainment, poverty and lifelong dependence on public support, juvenile delinquency, and an inability to live independently. In short, many children with disabilities are not able to achieve their full potential. Public childhood-disability programs should do more to help them reach this goal.
This book takes a hard look at the current system's problems and promotes a vision for an improved system. We start by examining the breadth of these children's needs. This starting point is somewhat unusual. Most discussions of and recommendations for improving services for children with disabilities focus on one type of need—such as their health or education. An effective system of programs, however, must support many types of needs, and productive discussions on how to improve the system of programs serving children with disabilities must also have a cross-system focus.
The starting point for our analysis is the three largest publicly funded programs supporting children with disabilities: special education, which provides educational and related services; Supplemental Security Income (SSI), which provides financial support to poor children; and Medicaid, the public health insurance program for poor children that pays for many health services. These three public programs serve the greatest numbers of children and cost the most money, and as such they must be central to any improved system.
Historically, policymakers, service providers, researchers, and advocates have addressed children's needs piecemeal. Such compartmentalization and specialization are understandable given the scope and complexity of the problems and the challenges in reforming even one part of the full system. Most professionals and experts, coming to the problem with specialized backgrounds and training, naturally zero in on one part of the system or one public program. While these focused efforts are critical to success, so is a complementary systemwide cross-program perspective.
Families of children with disabilities don't see their children's needs dividing neatly along program lines. Rather, their needs for income and for medical, educational, and other disability-related services are closely interrelated. So while Medicaid and special education are funded and administered separately, for many children with disabilities, health care needs and educational services merge. A child with significant emotional or behavioral problems may require both educational and health-related out-of-school services. Children without proper care for chronic asthma due to lack of health insurance may find their education disrupted by frequent emergency room visits and hospitalizations. Some poor families that include children with disabilities may qualify for income support but still find out-of-pocket costs for specialized equipment or other disability-related needs unaffordable, with the result that their children's medical problems worsen.
Families of children with disabilities look to health professionals, teachers, therapists, and caseworkers to supplement what they themselves provide. Yet behind these front lines are state, local, and federal programs that administer, fund, and regulate support services. In some cases, many layers of administrators and government decisionmakers stand between the service provider and federal program funding. For example, a child with developmental disabilities may receive services from a training center under contract to a local government agency funded by a state Department of Mental Retardation and Developmental Disability that gets money from Medicaid, which is funded jointly by the state and federal governments. The complex layers of conditions set by this variety of funders and service providers govern the family's access to services. A community trying to provide seamless coverage for a particular service might need to piece together funding from different sources depending on a family's income, whether the child meets special-education criteria, and the child's age.
Families are not the only ones who would benefit from an improved childhood disability system. A web of community programs would make the most of the billions of dollars government spends to help children with disabilities. For example, providing therapeutic services for children can enhance their performance in school, possibly increasing their chances of graduating and even reducing their need for public income support as adults. Efforts to improve health and functioning rely on connections between many players in the system, including parents, teachers, primary physicians, specialists, and other service providers. But different players rely on funding from different parts of the system, each with differing, and sometimes conflicting, rules and accountability systems.
Schools serving children with special needs must distinguish between medical needs and educational needs that can be funded by special education. A child who gains access to adaptive technology in school through special education may have no source of funding to use this same technology at home. A child who is uninsured because his family income is too high to receive public insurance may not have his condition managed effectively, leading to many missed school days, which in turn will limit the effectiveness of the special-education instruction for which he does qualify. Children whose disabilities have been extensively documented to qualify them for government disability income support may not receive needed special-education services, because their parents are unaware of available services and the systems do not share information or assessments with each other.
Programs and government systems tend to think narrowly about the specific area of need they focus on, while these children's and families' needs are broad. As one of the few studies looking at childhood disability from a cross-system family perspective put it,
Metaphorically, the issue is how to satisfy the horizontal needs of people and families through the use of traditionally vertical service-delivery sectors/strands. The claim is for a policy response to ensure that services are coordinated, that professionals collaborate with each other, and that funding streams are "braided" with each other?(Turnbull, Beegle, and Stowe 2001, 138)
The policy response these authors call for assumes that the "vertical" service-delivery system will remain. And indeed, a number of communities have made progress in coordination, collaboration, and combining funding streams toward the goal of an improved community system within current state and national system structures. However, we argue for additional change to the larger system itself. We believe working toward changes in special education, SSI, and Medicaid, the three major government programs supporting children with disabilities, is necessary to truly improve community service systems.
These problems are not new. A decade ago, a study by the Urban Institute (Aron, Loprest, and Steuerle 1996) called attention to the shortcomings of single-issue programs for children with disabilities. That study documented the system's size and complexity and revealed the many disconnects within and between specific programs. A decade later, the service systems for children with disabilities remain as fractured and dysfunctional as ever, while many of the problems have become even more pressing. The number of children in the system and the costs of supporting them are growing, legislation and regulation have become more complex and charged, and the demand for better outcomes and greater accountability is increasing.
Progress has been made on articulating a vision for an improved system and on initial efforts to implement pieces of it across the country. Many experts from different backgrounds and different vantage points now agree that an ideal system must be family-centered, community-based, culturally competent, coordinated and integrated, accessible, and comprehensive. This new vision and its supporting principles have been most fully developed and articulated within the maternal and child health community, largely with the support of the Maternal and Child Health Bureau's Children with Special Health Care Needs (CSHCN) program.
So far, special education, SSI, and Medicaid have progressed little towards this unified vision. The breadth and pace of change must accelerate in all three, given their importance to children with disabilities, their families, and society.
Why Focus on Improving Services to Children with Disabilities?
Several reasons argue for identifying and addressing preventable causes and consequences of childhood disability and for publicly supporting children with disabilities. First, as a society, we have decided that extending such support is the right thing to do. Within the disability community and the public at large, the general movement has been toward supporting the independence and inclusion of all people with disabilities in mainstream society. In 1990, for example, the Americans with Disabilities Act codified the civil rights of people with disabilities through anti-discrimination and "reasonable accommodation" provisions, and the Supreme Court's 1999 Olmstead decision challenged federal, state, and local governments to develop more services, programs, and activities for individuals with disabilities "in the most integrated setting appropriate to the needs of qualified individuals with disabilities" (Olmstead v. L. C. (98-536) 527 U.S. 581 (1999), ch. 1, p. 7). When disability begins in childhood, the potential benefits of helping children reach their full potential become even greater.
Second, chronic illness and disability in childhood are a major drain on the nation's educational and health systems. Childhood disability accounts annually for 66 million days of restricted activities and 27 million school absences; these are over and above those caused by the acute and chronic conditions that affect all children (Newacheck and Halfon 1998). Almost a quarter of children with chronic disabling conditions—about 900,000 children—have limited ability to attend school long term (Newacheck and Halfon 1998). Children with disabilities who have special health care needs make up about 15 percent of all children but account for about 53 percent of children's hospital days and 42 percent of total medical care costs. Alleviating the pressures on public systems by supporting children with disabilities and their families is clearly in the nation's best interest.
Third, the investment-value of helping children should not be forgotten. Effective use of public (and private) dollars early in a child's life can generate significant savings for society at large. Childhood-onset disabilities account for more than one-third of all years of disability in the U.S. population, making improvements in their management and prevention critical (U.S. Department of Health and Human Services 1991). Children with disabilities are less likely than other kids to enjoy a host of positive outcomes, including many of the milestones of growing up. For example, one study of a group of special-education students three to five years after leaving high school found that only 57 percent were in competitive employment, only 27 percent had achieved some postsecondary education, and only 37 percent were living independently. Nearly a third had had contact with the juvenile justice system (Wagner et al. 1993).
Finally, the prevalence of disability among children has increased substantially in the last several decades. Data spanning 1979 to 2000 reveal major increases in activity-limiting disabilities among children younger than 18. For white children, the increase was 47 percent (from 41 per thousand to 60 per thousand) and for black children, the corresponding increase was 77 percent (from 38 per thousand to 67 per thousand) (Newacheck et al. 2003). Specific learning disabilities—affecting about half of the nation's 5.8 million special-education students—have risen 233 percent since 1976–1977, compared to a mere 13-percent increase over this same period for children in all other disability categories combined (U.S. Department of Education 2002). The number of children diagnosed with Attention Deficit/Hyperactivity Disorder (ADHD) (and related claims for cash disability benefits) has grown similarly (National Commission on Childhood Disability 1995). While these increases partly reflect improvements in our understanding, awareness, and detection of specific disabilities, they are nonetheless alarming. And increased prevalence of childhood disabilities has major implications for the many programs serving these children.
Plan for the Book
Meeting the Needs of Children with Disabilities reviews the current service system and its many challenges and spells out what it would take to build a better system—a community-based, family-centered, and fully integrated system.
Since children with disabilities are too often poorly or partially understood, chapter 2 examines what the term "children with disabilities" means, exploring some of the conceptual and practical challenges involved in identifying them, reporting on the prevalence of disabilities among children, and recounting what we know about these children and their families. We also look at the connection between poverty and disability and the children's varying service needs.
Chapter 3 introduces the major public programs serving children with disabilities and their families—special education, SSI, and Medicaid—and lays out their basic purposes, benefits, and eligibility criteria. It also reviews some key challenges these programs now face. Understanding these problems is essential to connecting the programs and creating a more effective system for serving children with disabilities. The chapter also discusses the often-critical roles of other, smaller federal and state programs serving these children. We compare program size and recent estimates of total program expenditures and participation and present new estimates of the overlap in participation. We also discuss differences in the roles that federal versus state and local funding play in each program.
Chapter 4 describes three major challenges to improving services for children with disabilities—early intervention and prevention; eligibility; and access to services and benefits. We discuss the role of early-intervention and prevention services for children with disabilities and how the programs? current structures limit these efforts. We then examine the inconsistencies in how eligibility is defined, determined, and implemented across programs, and consider the challenges that arise when some programs (Medicaid and SSI) are means tested, while others (special education) are not. Finally, we discuss the barriers to accessing benefits and services—the problems eligible families face in applying for and getting services, health insurance's role in expanding access to health and health-related services, and the limitations of coverage.
Chapter 5 describes the system we should be moving toward, ways to get there, and some of the challenges along the way. We first lay out the conceptual elements of an ideal system of services for children with disabilities—family centered, community based, culturally competent, coordinated and integrated, and accessible and comprehensive. We then discuss promising initiatives that incorporate these elements into a system of care and lessons to be drawn from them. While many communities have developed coordinated systems that incorporate some of these elements, most cover a limited geographic area and address only a subset of children's needs. Even so, these systems are starting points for community-level integration, and they suggest how specific challenges to integration can be overcome in certain settings. We end by enumerating the ways that the three major programs can contribute to an improved system of services for all children with disabilities.
