Category Archives: Children with Disabilities

The Evidence-Based Movement

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“Despite decades of efforts and trillions of dollars in spending, rigorous evaluations typically find that around 75 percent of programs or practices that are intended to help people do better at school or at work have little or no effect,” says Future of Children senior editor Ron Haskins in a recent New York Times op-ed related to his new book.

Haskins isn’t arguing for massive budget cuts for federally funded social programs—instead, he’s hoping the new Congress won’t cut funding for evaluation research, which is a relatively new federal initiative. Evaluation research helps us know which programs work and don’t work; then we can expand what works and modify or eliminate what doesn’t work. Haskins concludes his op-ed by affirming that “social policy is too important to be left to guesswork.”

Research is one of the best tools to inform policy decisions because it’s more objective than political ideology. A lot is at stake when deciding which programs will be used to tackle social problems. This is especially true when considering child-related issues because what happens to people as children is likely to have lifelong effects. Regardless of what Congress decides to do, the Future of Children can be used as a nonpartisan resource to promote effective policies and programs for children and families based on the best available research.

For instance, when addressing childhood disability, begin with our volume “Children with Disabilities.” You’ll learn about the importance of policy measures that increase coordination between different types of services. Additionally, you’ll see how technology can improve outcomes but can also expand disparities unless access is provided equitably.

If you’re interested a multigenerational approach, read our volume “Helping Parents, Helping Children: Two Generation Mechanisms.” You’ll learn about what the most promising programs are doing for families. For example, you can read about how preschool and home-visiting programs can alleviate children’s stress, how increasing parent’s education levels can strengthen children’s healthy development, how improving parent’s health can improve children’s health, how carefully timed income support can promote children’s healthy development, and how helping poor families build assets can help children succeed.

For those interested in improving the literacy of young Americans, see “Literacy Challenges for the Twenty-First Century.” You’ll read of the breadth and complexity of literacy challenges, but also find policy implications such as the need to focus more attention on informational text and analytical writing in K-12 education, as well as arguments to increase access to strong preschool programs for children from low-income and non-English-speaking families.

Whatever your political persuasion, the best research can bring people together to solve social problems. Whenever possible, let’s leave guesswork behind and follow the evidence. To read our research publications, visit futureofchildren.org.

Higher Autism Rates: What Can Be done?

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The newest data on Autism Spectrum Disorder (ASD) from the Centers for Disease Control and Prevention (CDC) offer an alarming picture of childhood disability in America. Approximately 1 in 68 children who were 8 years old in the 11 participating states in 2010 were identified with ASD. This new estimate is more than twice as high as the earliest estimates from 2000 and 2002. The CDC states that “we don’t know what is causing this increase. Some of it may be due to the way children are identified, diagnosed, and served in their local communities, but exactly how much is unknown.”

People with ASD can have numerous strengths, but the challenges associated with ASD and other disabilities can be persistent and costly for individuals, families, and society. In the Future of Children issue on Children with Disabilities, Stabile and Allin calculated that the average annual cost (in 2011 dollars) to families of children with disabilities was approximately $10,800, and approximately $19,700 to social programs such as Medicaid and special education.

Even though there might be extra costs early on, Aron and Loprest note that early detection and intervention is crucial, and both sets of authors point out that early detection can provide long-term cost savings. However, some families are not screening their children due to barriers such as limited access and the belief that it’s unnecessary. Stabile and Allin emphasize that mental health problems, as opposed to physical disabilities, appear to be particularly associated with negative effects on future wellbeing in adulthood.

Having previously practiced social work in a treatment program for adults with ASD, ADHD, and learning disabilities, I’ve seen first-hand the difficulties that such adults can experience. These include difficulty developing and maintaining relationships (especially romantic relationships), finding and keeping gainful employment, and having healthy self-esteem after years of being bullied by peers.

With the increased prevalence of ASD among children, policy makers should remember that this is not simply a childhood disability, but a lifelong disorder with potentially significant long-term costs and challenges. Clearly, we need more research to understand the causes of ASD, but the funding and evaluation of expensive interventions to prevent and reduce the negative aspects associated with ASD, and other disabilities, during childhood and early adulthood might be justified given the research found in this Future of Children issue.

College for Students with Disabilities

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Future of Children authors Sandy Baum, Charles Kurose, and Michael McPherson write that as postsecondary enrollment expands in the US, student demand for academic and personal support services is increasing. Academic support programs such as developmental or remediation courses help older, returning students or high school graduates who need additional training to reach college-entry level. Personal support programs may provide services such as child care or transportation. All of these programs seek to improve student experiences and college outcomes.

Students with learning disabilities are a rapidly growing population that has received relatively little attention in terms of college preparation and support. Many of these children participate in special education programs before finishing high school. Authors Laudan Aron and Pamela Loprest explain that the special education system has helped to increase their access to and participation in public education, but there is room for improvement. An often challenging point for these children is in the transition into adulthood. Janet Currie and Robert Kahn report that high schools offer services to help students make the transition but no one is required to monitor the effectiveness of services for adults once they enter the community.

As college enrollment among students with learning disabilities increases, demand for personal and academic support services should also increase. Thus, a growing number of traditional universities are seeking to improve resources for students with disabilities, including supplemental support programs. For the latest research and policy recommendations on this topic, see the Future of Children issues on Postsecondary Education and Children with Disabilities.

ADHD and the Transition to Adulthood

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Future of Children researchers Janet Currie and Robert Kahn find that attention-deficit/hyperactivity disorder (ADHD) is almost three times more likely than asthma to contribute to childhood disability. Indeed, more than one in five parents of a child with a disability report that ADHD is an underlying condition. However, Neal Halfon and colleagues note that ADHD is not limited to children, and recent studies underline its growing prevalence across the lifespan.

Recently, Fox News highlighted findings of the first population-based study to follow children with ADHD into adulthood. The Mayo Clinic study found that nearly a third of children diagnosed with the disorder still had ADHD by age 27. Furthermore, among those who still had the disorder as adults, 81 percent also had at least one other psychiatric disorder. Some research has suggested that children with ADHD may be somewhat more likely to experience setbacks such as repeating a grade or going to prison.

These findings have important implications for practitioners and policymakers who are concerned with children’s mental health. Future of Children authors Liam Delaney and James P. Smith report that although we have strong evidence that medication combined with behavioral interventions can alleviate some symptoms of ADHD, we know little about the long-term consequences. For vulnerable populations making the transition to adulthood, including children with mental health problems, D. Wayne Osgood and colleagues recommend strengthening programs and improving existing systems of care for children and adolescents. See the Future of Children issues on Children with Disabilities and the Transition to Adulthood for more information.

IEP Should Prepare Teens for Adulthood

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Education is important for all children, but even more so for children with disabilities, whose social and economic opportunities may be limited.

The special education system has given children with disabilities much greater access to public education, established an infrastructure for educating them, helped with the earlier identification of disabilities, and promoted greater inclusion of these children alongside their nondisabled peers.

Once a child is identified as eligible for special education services, a team that includes the child’s parents and representatives of the public education system is charged with developing an individualized education program (IEP). The IEP outlines academic goals and incorporates all the services and supports necessary to meet the child’s unique needs.

The services and supports can include transportation, speech-language pathology and audiology, psychological services, physical and occupational therapy and many other individual services according to the child’s unique needs (The Future of Children: Children with Disabilities, Spring 2012).

Most parents of children with disabilities, educators and physicians are familiar with the IEP, but not all are aware that the Individuals with Disabilities Education Act mandates that an individualized transition plan (ITP) must also become part of the IEP once the child reaches his or her sixteenth birthday. (In some states, the age is even lower.)

The ITP prepares disabled youth for the transition to adulthood. One of the major differences between an IEP and an ITP is that the student becomes part of the ITP planning team. Parents and multidisciplinary representatives of the public school system continue to be a part of the team.

The types of goals differ once the ITP is included in the IEP. Federal law requires that the IEP be revised yearly to include goals for academic and school-related progress for the coming year. The ITP expands the time frame and range of goals. The team must consider skills and behaviors that will be required by the student for adulthood, as well as the student’s interests. As the goals being set will assist the student’s transition into adulthood, they often need to be long-range goals that won’t be completed in a given year.

One critical goal is determining whether the student will graduate with his or her classmates. Other transitional goals could include training opportunities that would strengthen skills needed for living in the community (general housekeeping, hygiene, public transportation skills and skills that would promote inclusion in recreational activities). Students with chronic illness need to learn medical self-management.

“Transition to adult life presents challenges and opportunities for practitioners guiding families of children with disabilities.” Thoughtful planning, beginning at a young age and supported in the home, can increase the chances that these young folks will be prepared to take on adult roles and responsibilities (AAP News, Nathan J. Blum, MD, FAAP & Stephen H. Contompasis, MD, FAAP).

Children with Disabilities: Medical Care, Education, and Cost

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A recent Child Trends Research Brief, “Children with Disabilities: State-Level Data from the American Community Survey,” uses data to look at the diverse needs of children with disabilities. Several critical findings and topics were also noted in the Future of Children’s recent issue on Children with Disabilities.

Both the Child Trends research brief and the Future of Children note that there is little consensus in defining children with disabilities. “Researchers tend to focus on the individual causes of disability such as autism, asthma, cystic fibrosis, or attention-deficit/hyperactivity disorder” (Future of Children). Regardless of the definition, children with disabilities need more specialized care medically, environmentally, and educationally. Parents of these children “often need to advocate for their child across multiple domains, from managing the child’s medical care, to ensuring an appropriate and individualized educational plan is in place, to meeting significant expenses that may arise due to the disability” (Child Trends).

“During 2008-2010, there were 2.9 million U.S. children with one or more disabilities. These comprised four percent (one in every 25) of all non-institutionalized children, ages birth to 17. Nearly one in three disabled children (31 percent) were living in poverty (compared with 20 percent of all children). Most children with disabilities (94 percent) were covered by health insurance; more than half (58 percent) were covered by public insurance programs.” (Child Trends)

As Child Trends notes, health insurance is vital for children with disabilities. The Child Trends brief cites Peter Szilagyi’s Future of Children chapter, “Health Insurance and Children with Disabilities,” which observes that the number of children with disabilities covered under private insurance declined by about 10 percent during from 2000 to 2008, while public insurance coverage increased. The two main public health insurance programs are Medicaid and SCHIP (known since 2009 as the Children’s Health Insurance Program or CHIP). Nearly half of children with special health care needs who have insurance are covered by one of these two programs; 90 percent are enrolled in Medicaid, the other 10 percent in CHIP. These are among several programs that provide health services for children disabilities. As Child Trends points out, “children with disabilities who are insured get more timely and comprehensive care, and that their parents are more satisfied with their child’s health care than are parents of children with disabilities who lack insurance.”

Mark Stabile and Sara Allin, in their Future of Children chapter, “The Economic Costs of Childhood Disability,” calculate that the direct costs to families, the indirect costs through reduced labor supply, the direct costs to disabled children as they age into the labor force, and the costs of safety net programs for children with disabilities all together average $30,500 a year per family with a disabled child. They note that the cost estimates on which they base their calculation vary widely depending on the methodology, jurisdiction, and data used.

Regarding education advances, Future of Children’s Laudan Aron and Pamela Loprest point out in their article, “Disability and the Education System,” that the special education system has given children with disabilities much greater access to public education, established an infrastructure for educating them, helped with the earlier identification of disabilities, and promoted greater inclusion of these children alongside their nondisabled peers. Despite these advances, many problems remain, including the over- and under-identification of certain subgroups of students, delays in identifying and serving students, and bureaucratic, regulatory, and financial barriers that complicate the program for everyone involved.

Despite improvements in recognition, early intervention, diagnosis, and a range of treatment and intervention programs, significant social disparities persist. The negative implications for health care, dependency, and educational costs of a growing number of disabled children lend urgency to our efforts to better understand and address, this growing health, economic and social liability (Future of Children).

Prevention of Disability in Children: The Role of the Environment

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Over the past fifty years, the number of reported childhood disabilities has steadily increased and the nature and consequences of disability have changed drastically. Prior to 1960, the poster child for childhood disabilities would have been a child with polio, wearing leg braces and using crutches for support. Today’s poster child could be a child with autism. Where the pre-60s child wore his disability for the world to see, in many cases today’s child experiences his disability internally. Over the past several decades, predominant childhood disabilities have shifted away from physical disorders toward mental health disorders. (Future of Children: Childhood Disabilities)

Much public attention and many resources are focused on medical research to identify risk factors and mitigate symptoms of disability for individual children. However, Stephen Rauch and Bruce Lanphear, in their chapter “Prevention of Disability in Children: Elevating the Role of the Environment,” argue for a broader focus on environmental influences that put entire populations at risk. “Identifying and eliminating or controlling environmental risk factors that incrementally increase the prevalence of disability is the key to preventing many disorders,” they write.

When seeking to prevent disability, there are three levels that need to be considered. Primary prevention seeks to keep disabilities from developing. Secondary prevention utilizes methods of screening and early detection to identify problems before they can do “too much damage.” Tertiary prevention focuses on restoring health and function to people who have already developed a disability. Tertiary and secondary prevention are the primary efforts of the clinical community. But in order to reduce the prevalence of disability in the population, primary prevention is essential.

The causes of many disabilities in childhood are complex and result from the interplay of environmental risk factors and genetic susceptibility. Purely genetic and purely environmental disabilities exist, but they are rare. Children are particularly vulnerable to environmental stressors; they pass through several delicate developmental stages and, pound for pound, they eat and breathe more environmental contaminants than adults. An exposure that is harmless in adults can have a dramatic effect when it occurs during fetal development or early childhood.

One example of an environmental risk for disabilities in children is lead in house paint. Lower IQ and ADHD in children have both been linked back to lead as has criminal behavior in adulthood. A cost-benefit analysis of requiring lead based paint to be removed concludes that every $1 spent to reduce lead hazards in housing would produce between seventeen and two hundred twenty one dollars in benefits by reducing screening and treatment for lead toxicity, ADHD treatment, and special education.

(Rauch and Lanphear Future of Children: Childhood Disabilities)

In a long awaited move, the CDC recently cut the threshold for lead poisoning. This new lower threshold “means public health agencies have a bigger job to screen children for lead and to prevent exposure in the first place,” said Lanphear in an interview with John Ryan of Seattle station KUOW “The new standard from the Centers for Disease Control and Prevention nearly doubles the number of children considered to have lead poisoning. Now, one out of 40 American kids has what’s deemed a dangerous level of lead in their blood, reported Northwest public radio.” (http://www.nwpr.org/post/cdc-cuts-lead-poisoning-threshold)

This change in lead level standards is just one example of how our regulations and knowledge about environmental risk factors changes over time. In the face of such changes, it makes sense to consider a preventive approach that shifts the entire population’s health curve in a positive direction. As Issue Editors Janet Currie and Robert Kahn summarize in the introduction to Children with Disabilities, “the heart of [Rauch/Lanphear’s] argument is that societal choices can shift the curve of child health outcomes to increase the probability that some children will be moved from a nondisabled to a disabled state. Exposure to chemicals in the environment, for example, may decrease the attentiveness of all children, but in a subset of more vulnerable children, the exposure may lead to symptoms and impairment that warrant an ADHD diagnosis. The implication is that society should pay attention to shifting the entire distribution of health outcomes in a positive direction and that doing so will reduce the toll of childhood disability. Such a public health focus on prevention is a useful comple­ment to the usual medical focus on improving technology or the quality of medical care for children who already have disabilities.”

For more information, read our Children with Disabilities volume: www.futureofchildren.org.

The Transition to Adulthood for Children with Disabilities

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Prior Future of Children research underlines the challenges faced by youth approaching adulthood, particularly among those from disadvantaged backgrounds with no postsecondary education on the horizon. Even thornier is the pathway to adulthood for youth from more vulnerable populations such as those challenged with a chronic illness, mental health issues, or physical disabilities. A recent study highlighted by CBS News indicates that one in three young adults with autism has completed no college or technical schooling and has no paid work experience seven years after graduating high school. This is urgent news considering that roughly half a million autistic children will be reaching adulthood in the next ten years.

Recognizing the importance of education for children with disabilities before and throughout the transition to adulthood, the United States has made many advances in special education over the past few decades. The special education system gives children with disabilities greater access to public education and provides an infrastructure for their schooling. Moreover, some services even extend through early adulthood, which is more than can be said for other vulnerable populations. The federal Individuals with Disabilities Education Act (IDEA) requires that secondary schools develop individualized transition plans including long-term education goals, vocational training, and general life skills.

Despite these advancements in special education, Laudan Aron and Pamela Loprest indicate in their chapter Disability and the Education System, that many problems remain, including the over- and under-identification of some subgroups of students, delays in providing service to students, as well as bureaucratic and financial barriers that often complicate effective service provision. In addition, some needed services may not be available when children have reached adulthood. A recent article in US News and World Report indicates that families of children with autism often describe leaving high school as “falling off a cliff” because of the lack of services for adults on the autism spectrum.

Providing these children with needed support before and after the transition to adulthood has substantial immediate and long-term economic costs and benefits. A recent article in CNN Health reports that out-of-pocket medical expenses are growing fastest among Americans 18 years old and younger. The Future of Children volume, Children with Disabilities indicates that these expenses are higher among families caring for a child with a special health care need. In their chapter, The Economic Costs of Childhood Disability, Mark Stabile and Sara Allin suggest that due to these high costs to children and families, the benefits of effective interventions to prevent and reduce childhood disability might well outweigh the societal costs of such programs.

On May 23, 2012, the Anderson Center for Autism hosted an event for more than 350 practitioners and parents, which featured research from the Future of Children’s Children with Disabilities volume, and discussed effective early interventions for children with disabilities. For more discussion on evidence-based policies and intervention programs for special needs children and those making the transition to adulthood, see the Future of Children volumes Children with Disabilities and Transition to Adulthood. Add your voice by commenting on the Future of Children blog.

Minority Birth Rate Surpasses Whites in US

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New 2011 census estimates show that for the first time, racial and ethnic minorities make up more than half of the children born in the U.S. For these newborns of America’s first “majority minority” generation, and for all Americans under 50, Hispanics are the second-largest population group after whites of European descent (Wall Street Journal).

These findings come amidst data from the Pew Hispanic Center, which show that net immigration from Mexico has stopped, or possibly reversed. “The current congressional and Supreme Court interest in reducing immigration – and the concerns especially about low-skilled and undocumented Hispanic immigration – represents issues that could well be behind us,” notes William H. Frey, a demographer at the Brookings Institution who analyzed the census data, in the Huffington Post.

In fact, census data reveal that immigration is not the main driving force behind America’s growing diversity. Data for 2010 show Hispanic women give birth to 2.4 babies on average compared to 1.8 babies for non-Hispanic whites, and minority women are younger on average, so more of them are of childbearing age (Wall Street Journal). In addition, as Princeton professor and director of the Mexican Migration Project Doug Massey notes in Reuters, “net zero migration doesn’t just mean undocumented migrants are staying in Mexico; it also means those already here aren’t going home…” The census has forecast that non-Hispanic whites will be outnumbered in the United States by 2042.

This demographic shift has implications for United States’ policy, particularly in the area of education.

A substantial percentage of minority children, especially those with Latin American origins, are falling behind in school. Evidence from the Future of Children’s volume on Immigrant Children shows that three policy reforms – increased attendance in quality preschool, improved instruction in English, and increased attendance in postsecondary education – would lift their wellbeing as adults and increase their economic and social contributions in American society.

“Today’s minority youth are coming of age in an aging society… which will depend increasingly on the productivity of younger workers,” write Immigrant Children issue editors Marta Tienda of Princeton and Ron Haskins of Brookings. “At a critical juncture in its history, the United States has an opportunity to invest in [minority] youth and enable them to contribute to national prosperity.”

For more information on the country’s changing demographics, immigrant children, and education reform, see the Future of Children volumes on Fragile Families, Immigrant Children, Transition to Adulthood, and America’s High Schools.

How Do We Define and Measure Disabilities in Children?

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On Tuesday, May 8th 2012, the Brookings Institution hosted an event featuring the Future of Children’s most recent volume, Children with Disabilities and its corresponding policy brief, “The SSI Program for Children: Time for Change?“

Issue Editor Janet Currie, the Henry Putnam Professor of Economics and Public Affairs and director of the Center for Health and Wellbeing at Princeton University, highlighted the major themes from the volume including the documented increase in disabilities; the recent shift in disabilities from physical to mental health disorders; the significant costs associated with disabilities for individuals and families; the fragmentation of services; and the possibilities for improving the wellbeing of children with disabilities with the medical home model, new technologies, and prevention efforts.

Researchers’ efforts to track trends in disability and understand the causes and implications of the recent increase in diagnoses have been seriously complicated by changes over time in how disability is defined, which criteria should be used for screening, which services should be made available, and to what extent particular conditions are actually considered disabling.

These fundamental challenges of definition and measurement over time became more important as the discussion continued to the Supplemental Security Income (SSI) cash assistance program for children with disabilities. Ron Haskins, Co-Director of the Center on Children and Families at the Brookings Institution, asked a panel including keynote speaker Kenneth Apfel of the University of Maryland and former commissioner of the Social Security Administration, who presented on the history of the program, if it was time to change SSI.

The panel, which also included Marty Ford, Chief Public Policy Officer for the Arc of the United States, Matt Weidinger, Majority Staff Director of the Committee on Ways and Means, U.S. House of Representatives, Jonathan Stein, General Counsel at Community Legal Services of Philadelphia, and Michael Wiseman of the Office of Retirement and Disability Policy, emphasized the need to create a new vision for SSI. They contend that SSI should maintain the income stability it provides for severely disabled children (and there was debate as to how this should be done). It should also look more carefully at reviewing SSI recipients over time to better understand their differing disability levels, and to support them, particularly as they transition to adulthood.

Eventually, the conversation turned to the inevitable: budget constraints. As Ron Haskins and Matt Weidinger noted, Congress is going to cut funding, possibly looking even to means-tested programs such as SSI.

Given that, what is realistic? “And, what are the outcomes that show that SSI is working?” Weidinger asked.

Janet Currie’s response brought the conversation back to one of the volume’s key findings: without a consistent definition of disability and data that tracks children over time, it is difficult to discuss research-based outcomes of SSI. This is not because the program does not work, but because the data simply does not exist. But the credibility of the program should not be discounted simply because of a lack of evidence.

In the meantime, as the volume notes, “researchers must pay attention to how disability is defined and develop workable definitions that can be implemented in national surveys and maintained over time. Only in this way can they learn whether the increasing numbers of children with disabilities represent an exploding epidemic or an emerging, more nuanced understanding of what it means to be disabled… policy makers should be mindful that whether or not the number of special needs children is growing, large numbers of children must live with a diagnosed disability and these children merit attention.”

To listen to the panel’s recommendations for improving the SSI program, click here.

To read the Children with Disabilities volume, click here.