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Youth with Disabilities in the Foster Care System:
Barriers to Success and Proposed Policy Solutions
Letter of Transmittal
February 26, 2008
The President
The White House
Washington, DC 20500
Dear Mr. President:
On behalf of the National Council on Disability (NCD), I am pleased to submit this report, entitled Youth with Disabilities in the Foster Care System: Barriers to Success and Proposed Policy Solutions. Under its congressional mandate, NCD is charged with the responsibility to gather information on the development and implementation of federal laws, programs, and initiatives that affect people with disabilities.
The goal for our country’s youth is to live healthy, happy lives and to become self-sufficient, contributing members of society as adults. However, there are subsets of youth who cannot reach these goals with ease. These youth need additional supports to assist them in their journey toward a healthy adulthood, as they are more vulnerable than the “average” youth and thus are more apt to fall through the cracks during their journey. Youth development researchers have determined that some specific youth populations are more vulnerable than others. This report examines one exceptionally challenged group in particular: older youth (specifically, preteen through young adult) with disabilities who are involved in the foster care system.
The child welfare community generally accepts the fact that while the American foster care system has come a long way in recent years, there is still much to be done to ensure the health and well-being of the children and youth it serves. Likewise, the disability community has seen great improvements in recent years but still advocates for additional needed change. But what is often overlooked among experts in both of these realms is the idea that foster care is indeed both a child welfare issue and a disability issue. This is due to the alarmingly high numbers of foster youth with mental, developmental, emotional, learning, and physical disabilities. The purpose of this report, therefore, is to shift the lens through which youth advocates and service providers view the importance of ensuring the well-being of foster youth. This new lens asserts the importance of understanding the prevalence of disability among foster youth and better ascertaining who should be held accountable for this uniquely challenged and often underserved population.
NCD stands ready to work with you and the Office of Domestic Policy to ensure that the recommendations within this report become a reality.
Sincerely,
John R. Vaughn
Chairperson
National Council on Disability Members and Staff
Members
John R. Vaughn, Chairperson
Chad Colley, Vice Chairperson
Patricia Pound, Vice Chairperson
Milton Aponte, J.D.
Victoria Ray Carlson
Robert R. Davila, Ph.D.
Graham Hill
Marylyn Howe
Young Woo Kang, Ph.D.
Kathleen Martinez
Lisa Mattheiss
Lonnie Moore
Anne M. Rader
Cynthia Wainscott
Linda Wetters
Staff
Michael C. Collins, Executive Director
Martin Gould, Ed.D., Director of Research and Technology
Mark S. Quigley, Director of External Affairs
Julie Carroll, Senior Attorney Advisor
Joan M. Durocher, Senior Attorney Advisor
Sharon M. Lisa Grubb, Special Assistant to the Executive Director
Geraldine Drake Hawkins, Ph.D., Senior Program Analyst
Brenda Bratton, Executive Assistant
Stacey S. Brown, Staff Assistant
Carla Nelson, Secretary
Acknowledgments
The National Council on Disability thanks Betsy Brand, Director, American Youth Policy Forum, and Caroline Christodoulidis, Program Associate, American Youth Policy Forum, for conducting the research for this report.
Table of Contents
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Executive Summary
Youth with disabilities who are also in the foster care system are one of the most vulnerable populations in the United States, yet little attention is focused on the unique challenges they face as they negotiate their way through multiple systems to adulthood. The National Council on Disability (NCD) has decided to delve into the confusing and confounding world faced by these youth, draw attention to their situations, and start a dialogue about how federal, state, and local policies and practices can be more supportive of these young people.
The purpose of this report is to provide policymakers, primarily at the federal and state levels, with information about youth with disabilities in foster care, so that policymakers can begin to understand the characteristics of this population; the challenges they face; how they fare with regard to safety, permanency, self-determination and self-sufficiency, enhanced quality of life, and community integration; and how the complex array of existing programs and services could be better designed to improve these outcomes.
This report will shed light on the poor outcomes of youth with disabilities in foster care, especially with regard to education, employment, and other indicators of well-being. While the federal investment in the multiple systems with which these youth come in contact is significant, the disconnectedness and lack of coordination across programs and agencies call into question the effectiveness of government efforts. The report will therefore describe various policy recommendations for federal and state policymakers that focus on improving coordination, holding systems accountable, developing leadership and the capacity of the system to work more effectively with these youth, improving transitions to adulthood and educational outcomes for them, and better data-sharing and information management. A brief summary of these recommendations will follow at the end of the report (Chapter 4).
The goal for America’s youth is to live healthy, happy lives and to become self-sufficient, contributing members of society in adulthood. However, there are subsets of youth who cannot reach these goals with ease. These youth need additional supports to assist them in their journey toward a healthy adulthood, as they are more vulnerable than the “average” youth to fall through the cracks during this journey. This report will examine one exceptionally challenged group in particular: older youth (specifically, preteen through young adult) with disabilities who are involved in the foster care system.
The child welfare community generally accepts the fact that while the American foster care system has come a long way in recent years, there is still much to be done to ensure the health and well-being of the children and youth it serves. Likewise, the disability community has seen great improvements in disability laws in recent years but still advocates for additional needed change. But what is often overlooked among experts in both of these realms is the idea that foster care is indeed both a child welfare issue and a disability issue, because of the alarmingly high numbers of foster youth with mental, developmental, emotional, learning, and physical disabilities. The purpose of this report, therefore, is to shift the lens through which youth advocates and service providers view the importance of ensuring the well-being of foster youth. This new viewpoint focuses on the importance of understanding the prevalence of disability among foster youth and better ascertaining who should be held accountable for this uniquely challenged and often underserved population.
Scope of the Issue
At any given point in time in the United States, approximately 500,000 youth are in the foster care system, although nearly 800,000 youth are served by this system per year. Separately, almost 13 percent of all youth ages 6 through 14 have at least one documented disability. Recent reports estimate that youth with disabilities are between 1.5 and 3.5 times more likely to have experienced abuse or neglect than youth without disabilities. Although determining the cause of a disability for an abused young person is often difficult, research has assessed that disabilities are often caused and/or exacerbated by abuse. At the same time, data suggests that youth born with disabilities are more often abused, and also more often relinquished to the child welfare system (either by choice or force). And finally, abuse and trauma also occur within the system; in one study, one-third of foster youth reported some type of perceived maltreatment while in the foster care system. The challenge in determining cause of disability for foster youth is just one of the barriers to ascertaining how to best support this vulnerable population.
Whatever the cause, some troubling patterns regarding disability emerge among foster youth. One acclaimed study of foster youth alumni found that over half of those studied had mental health problems, compared with 22 percent of the general population. Of these people, 25 percent had post-traumatic stress disorder (PTSD), versus 4 percent of the general population, and 20 percent experienced major depression, versus 10 percent of the general population. Social phobia, panic syndrome, and generalized anxiety disorder were also more prevalent among these alumni. Regarding education, it is estimated that 30 to 40 percent of foster youth are in the special education system, a significantly higher percentage than non-foster care youth. And one California study found that 8 percent of foster youth studied had some type of physical impairment. These statistics help illustrate the disproportionality of the numbers of youth in foster care who have disabilities.
Outcomes for youth with disabilities in the child welfare system are overwhelmingly negative as well. Both youth with disabilities and foster youth are more likely to drop out of school and less likely to attain a postsecondary education. One study found that only about 9 percent of youth with disabilities attend four-year colleges, and another 5 percent attend vocational, technical, or business schools. Meanwhile, only about 20 percent of foster youth make it to college, and their rate of completion is around 5 percent. These percentages are staggeringly low. They compare with the national averages of about a 60 percent college access rate for high school graduates and a 20 percent completion rate among adults under age 25.
Other negative outcomes for this population exist as well. By the age of 19, nearly 50 percent of young women in foster care have been pregnant, compared to 20 percent of their non-foster care peers, and 38 percent have been arrested, compared to the national average of about 7 percent. Other studies have estimated that about 22 percent of former foster youth experience homelessness, 33 percent have no health insurance, and only 43 percent are employed—all rates that are much lower than the national averages.
This data indicates that far too many youth with disabilities in foster care are not transitioning into healthy adulthood and are not becoming productive members of society. Unfortunately, these negative outcomes reflect the incompetencies and insufficiencies of the systems, programs, and people that serve these youth. More could certainly be done, at many levels, to ensure success for these youth.
Issue Areas Examined
This report identifies the following main issue areas of utmost importance regarding youth with disabilities in the foster care system:
- Federal and state investments in youth with disabilities in the foster care system
- Education and training needs
- Transitions to adulthood and connectivity issues
- Coordination, collaboration, and accountability issues
- Issues around the use and sharing of data
Federal and State Investments in Youth with Disabilities in the Foster Care System
Despite the progress that has been made to enhance the laws that affect people with disabilities and foster youth, many believe that still deeper, broader, and smarter investments must be made at the federal and state levels to demonstrate that the future of youth with disabilities in the foster care system is important to everyone. For example, despite the billions of federal dollars spent on foster youth every year, some experts believe that the existing funding structure is too rigid and as a result is hampering states’ abilities to truly serve these youth in the ways that are needed. And some assert that this rigid funding structure incentivizes placement into the foster care system to the detriment of more “family-friendly” supports such as preventative services, reunification, and even adoption. Some think the lack of flexibility most negatively affects youth with disabilities, whose families often do not have enough access to the mental and other health services that may, if provided, make foster care unnecessary.
Another federal funding issue centers on eligibility. Although any child can be placed into foster care, independent of income status, currently a child or youth is eligible for federal foster care funding support only if his or her family meets income eligibility requirements from 1996. This is because the eligibility requirements for foster care support have not updated in more than 10 years, despite program changes and inflation.
Investments could also be made at the federal level in better linking policy with research. An example discussed in this report is the issue of alarmingly high numbers of youth with disabilities in foster care being overinstitutionalized despite research linking negative outcomes with institutionalization, and despite the fact that evaluations of alternate care models have found that family- and youth-centered models are not only more effective and healthier for youth, but also cost significantly less than institution-based care models.
Federal and state investments are also noted as necessary in the realm of recruiting and training foster parents so that they are more inclined and better equipped to care for youth with disabilities. Such investments would help address the disproportionate number of these youth remaining in the foster care system—and especially in institutional settings—for long periods. Better recruitment efforts and high-quality training would enhance these young people’s opportunities for permanency and well-being and greatly decrease the high rate of recidivism that is strongly correlated with foster youth who have disabilities.
Last but not least, the onus should fall on the Federal Government to do more to reduce the negative stigmas associated with both youth with disabilities and youth who have experienced the foster care system. What both groups have in common is that the public has almost no understanding of their life situations and characteristics, and that they are stigmatized largely as a result of this lack of understanding. Public awareness campaigns can help increase public understanding and encourage those who work with or on behalf of these youth to be more knowledgeable about the issues that affect them. They can also bring to light the detrimental effects of stigmas on youth.
Education and Training Needs
Time and again, experts in many fields note that success in education is one of the most important indicators of success later in life. Therefore, meeting the educational needs of this vulnerable population should be deemed a top priority by the teachers, caseworkers, foster parents, dependency court judges, and mental health professionals who interact with these youth.
Some of the negative outcomes associated with too many youth with disabilities in foster care have been discussed above. Many believe that these negative outcomes prove that not enough is being done to ensure the educational success of these youth. Thankfully, more is being done now than ever before. The Individuals with Disabilities Education Act (IDEA) works to ensure that the specific needs of each individual student with disabilities are met, while the McKinney-Vento Homeless Assistance Act works to reduce the barriers often associated with homeless and foster youth changing schools often, including issues surrounding enrollment and the transfer of records. However, owing to eligibility issues, the McKinney-Vento Act does not serve all foster youth. And IDEA’s processes, although improved in recent years, do not sufficiently consider the special situations of youth involved in the child welfare system, such as experiencing frequent school moves and having no parents to help make decisions on their behalf.
In some cases, federal laws indeed exist to help provide the needed services to students, but not nearly enough money is appropriated to the programs to make enough of a difference. This report discusses the lack of federal support for both mental health services and counseling services for public school students. It argues that these are two important services that can serve both preventative and intervention functions and should therefore be made available to the youth who need them, which includes youth with disabilities in foster care.
Just as important as primary and secondary school services are access to and success in postsecondary learning opportunities such as college or career and technical training. Because both youth with disabilities and youth transitioning out of the foster care system show negative outcomes for postsecondary education attainment, a larger investment must be made to facilitate their success. One of the main barriers to access is lack of monetary resources, as many youth with disabilities in foster care have low or no incomes. Although the Chafee Foster Care Independence Program’s Educational and Training Vouchers Program (ETV) has helped greatly, these limited funds cannot possibly help all youth in need, so additional access to monetary support, such as federal financial aid, is necessary.
Other, nonmonetary barriers to postsecondary attainment exist in the systems themselves. For example, the college application process can be extremely daunting, especially for youth with no supportive adults in their lives. Schools and the Federal Government may not recognize the role they must play in easing this process for youth with significant needs. There is also the concern of low expectations for both youth with disabilities and youth in foster care. These low expectations link back to the stigma issue discussed earlier. Furthermore, not all caseworkers, foster parents, and other adults in “helping” professions are the best information resources for these youth, despite their (often) good intentions. All of these barriers further exacerbate the challenge these youth face as they endeavor to access and succeed in postsecondary learning opportunities.
Transitions to Adulthood and Connectivity Issues
A healthy transition to adulthood for all youth should be the primary concern for all, as far too many negative implications are associated with youth not becoming healthy, productive, economically sufficient adults. Unfortunately, a large number of youth with disabilities transitioning out of foster care end up disconnecting with society and are unable to reconnect for one reason or another. The repercussions felt by these young people, the systems with which they interact, and the country as a whole are indeed profound and long-lasting. Therefore, just as important as education is the need to provide services and supports to youth transitioning to adulthood.
Transition is a daunting experience for youth with disabilities in the foster care system. They often need more services than average youth, require the support of more caring adults in their lives, and must also understand a whole host of laws, regulations, and policies with which most youth usually do not come in contact. They need to know when their Medicaid benefits expire, how to access independent living skills programs, and whether they are eligible for housing, among many other rules and processes. Some youth with disabilities also need to rely on caring adults to help them perform basic functions like eating, bathing, and getting around. Due to the challenging situations of many of these youth as they enter adulthood, many youth development experts believe that youth with disabilities transitioning out of foster care should be eligible for transition services up to age 24, when needed, instead of age 21.
Despite the progress that has been made to ensure the comprehensiveness of services offered to youth as they transition to adulthood, much remains to be done in terms of both access to services and the provision of the right services. Some experts believe that the services provided are often not pertinent to real-life challenges. Others believe that not enough is being done to incorporate the ideologies of community integration, self-determination, and self-advocacy into the transition curricula. If policy were better linked with sound research, these components might be more regularly connected to the life skills and independent living curricula provided to youth with disabilities and youth transitioning out of foster care. Due to the funding limitations of programs like the Chafee Foster Care Independence Program (CFCIP), not all youth who need these services receive them. As this report discusses, eligibility issues also affect transition services.
The creation of both the CFCIP and the Individualized Education Program (IEP) has been a significant step in the right direction for ensuring healthy transitions for these young people. But unfortunately, these two systems often operate independent of one another. A recent study has determined that still more must be done to coordinate these two very important services so that these youth have the supports they need to transition adequately.
Coordination, Collaboration, and Accountability Issues
Currently, there is no one federal or state system responsible for youth with disabilities in the foster care system. Instead, separate systems are working toward separate goals with many different procedures. Every now and then, collaborative efforts that are backed with accountability are supported nationally and at the state level, but these collaborations are often limited in time and scope. For this particular group of vulnerable youth, some efforts are being made (and are discussed in this report), but much progress still needs to be made in order to better coordinate services comprehensively for these young people.
An increased federal oversight role is the first crucial step to the delivery of a coordinated system of care. This can be facilitated by the funding of the Federal Youth Coordination Act and the continued (and enhanced) support of the Court Improvement Program and similar efforts. The collaborations and partnerships created through such vehicles must be strategic in nature, as partnerships that are not strategic often do not facilitate positive change. Many youth-serving (and adult) systems are intertwined in the lives of youth with disabilities in foster care, but not all are able to collaborate effectively with one another.
These strategic cross-systems collaborations also require the assistance of high-level state leaders and high-quality accountability systems in order to flourish. This report finds that leadership at the state level should come from a partnership between the highest court system and the executive office.
Another practice that many believe to be effective in fostering a collaborative approach is the adoption of the “youth development” approach across all youth-serving systems. When systems such as education, child welfare, and juvenile justice are all on board with the same overall goals of helping all youth reach productive, healthy, economically sufficient adulthoods, they provide the opportunity to help all youth flourish, independent of their life situations. Unfortunately, this ideal has not yet been recognized to its full potential nationally.
In order to accomplish true collaboration, it is believed that more cross-training must occur among the adults who interact with and provide supports for these multisystem youth. Right now, there is a dearth of knowledge about disabilities (e.g., how to identify them correctly) among child welfare, school, and delinquency and dependency court personnel as a whole. Likewise, schools and many other systems lack a basic knowledge about the intricate workings of the child welfare system. Lack of awareness about the life situations that these youth confront further hinders their ability to receive the supports that they truly need.
Issues Around the Use and Sharing of Data
In recent years, the child welfare system has seen amazing improvements in the data systems funded by the Federal Government, the type of data collected, and how this data is organized. Likewise, the education system’s IEP process has improved immensely in recent years and continues to house data on students with disabilities in public education systems in an effort to provide better targeted services and improve student outcomes.
Despite such progress, many data-related issues persist. For agencies’ information systems to help decisionmakers understand the youth who are tracked, with the overall goal of improved services and youth outcomes, the following basic needs have been identified: adequate funding to build capacity; identification, consistency, and accuracy within the systems; improvements in collected information; and cross-systems sharing of data.
Arguably, two of the most important data systems the child welfare system operates are the Adoption and Foster Care Analysis Reporting System (AFCARS) and the Child and Family Services Reviews (CFSR), which provide information about youth served and the adequacies of the agencies that serve them. Despite the cost to maintain these data systems, their importance still outweighs their cost. Without data systems like these, accountability for providing the services that these vulnerable youth need could not be maintained and improvements could not be made. Their capacity must be enhanced in an ongoing manner to continue improving their information collection efforts.
The accuracy of the information that various information systems present must also be ensured in order to gain a better understanding of the situations of these youth and to subsequently serve them better. This includes making information housed in these data systems compatible across the board, such as by using similar terminology and definitions across systems (as feasible) and tracking progress in similar ways.
Using data well also involves holding states accountable for reporting accurately in a timely manner. There is speculation that AFCARS seriously underreports and misreports disability status for foster youth. The implications of inconsistent, inaccurate, and unreliable data are immense. When an accurate picture of an extremely vulnerable population such as this one cannot be assessed, then policymakers and service providers have no idea how many and what types of resources and services must be devoted to them to help them thrive. It is the youth who suffer as a result.
Policy Recommendations
As a response to the issues involved with serving youth with disabilities in the foster care system, this report makes several policy recommendations that can be used as a launching pad for further intensive and detailed discussions with involvement from a wide range of stakeholders, including the youth themselves. The broader points of these recommendations follow:
- Provide increased flexibility to states and communities so programs and services can be most effectively structured to meet the needs of youth with disabilities in foster care.
- Increase federal support in the departments of Health and Human Services, Education, Justice, and Labor for research and demonstrations to identify effective policies and practices that lead to positive outcomes for youth with disabilities in foster care.
- Improve training for foster care parents and increase recruitment of individuals willing to foster youth with disabilities.
- Strengthen secondary and postsecondary educational supports for these youth to improve access and success.
- Improve access to individualized, comprehensive transition services for youth with disabilities aging out of foster care.
- Fund the Federal Youth Development Council, authorized by the Federal Youth Coordination Act, as well as similar federal coordinating efforts.
- Strategically increase collaboration among the education, juvenile justice, child welfare, labor, dependency court, and health and mental health systems.
- Require states to develop a common youth development approach across multiple systems to improve outcomes for all youth.
- Improve training of youth professionals across systems.
- Provide resources and technical assistance to help states enhance their data collection and reporting systems.
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Introduction
Youth with disabilities who are also in the foster care system are one of the most vulnerable populations in the United States, yet little attention is focused on the unique challenges they face as they negotiate their way through multiple systems to adulthood. The National Council on Disability (NCD) has decided to delve into the confusing and confounding world faced by these youth, draw attention to their situations, and start a dialogue about how federal, state, and local policies and practices can be more supportive of these young people.
There is an enormous overlap of youth with disabilities and young people in the foster care system. Indeed, many advocates for these youth assert that foster care is a disability issue because the prevalence of disabilities among these youth is so high.[1] Yet many individuals and systems associated with youth in the foster care system know little about the disability world and even less about ways to help youth with disabilities become self-sufficient and self-determined adults. The many systems that interface with these vulnerable youth, including family courts, child welfare, juvenile justice, health and mental health, and education, are disjointed, disconnected, and sometimes even at odds with one other. This situation is somewhat a result of the inherent complexities involved in these enormous systems, but blame can also be placed on the lack of a collaborative attitude owing to weak federal and state encouragement.
Much more can be done to guarantee that youth with disabilities in foster care are provided the complete support, encouragement, and assistance they need to ensure their safety, permanency, and well-being.[2] Additionally, more opportunities can be provided to enable them to meet the adulthood goals of self-determination, enhanced quality of life, and community integration.[3] At the same time, it is worth noting that there have already been a plethora of notable system and policy improvements in the care for these youth, most of which have occurred in just the last 15 to 20 years. But while these improvements provide a ray of hope, there is still much left to be done.
The purpose of this report is to provide policymakers, primarily at the federal and state levels, with information about youth with disabilities in foster care, so that policymakers can begin to understand the characteristics of this population; the challenges they face; how they fare with regard to safety, permanency, self-determination and self-sufficiency, enhanced quality of life, and community integration; and how the complex array of existing programs and services could be better designed to improve these outcomes.
This report will shed light on the poor outcomes of youth with disabilities in foster care, especially with regard to education, employment, and other indicators of well-being. While the federal investment in the multiple systems with which these youth come in contact is significant, the disconnectedness and lack of coordination across programs and agencies call into question the effectiveness of government efforts. The report will therefore offer policy recommendations for federal and state policymakers that focus on improving coordination, holding systems accountable, developing leadership and the capacity of the system to work more effectively with these youth, improving transitions to adulthood and educational outcomes for them, and better data-sharing and information management. A brief summary of these recommendations will follow at the end of the report (Chapter 4).
Large numbers of research and policy reports were reviewed and two focus groups were held with a wide range of experts in the disability, mental health, child welfare, juvenile justice, family court, and education fields, including practitioners, administrators, and policy specialists. These meetings occurred in San Diego, California, and Washington, D.C. These focus groups helped identify important policy barriers and recommendations for improving program delivery to youth with disabilities in foster care. Lastly, several people with and without disabilities who had received foster care were interviewed about their personal experiences. Perhaps their stories help frame the need for systemic and comprehensive change more than any article or piece of research can. Quotes from these individuals are inserted throughout the report to illustrate the difficulties they faced as they tried to gain the knowledge, skills, abilities, and attitudes to become self-sufficient and self-determined.
These stories clearly demonstrate how broken the system really is. And it appears that it is not just broken in one or two places for a handful of youth, but it is broken in many places for a large number of young people. The fact that the outcomes for youth with disabilities in foster care are so poor should be evidence enough of the need to take a comprehensive and serious look at federal and state policies and programs that serve them, no matter how challenging this may be. While policy usually deals with discrete problems instead of cross-systems issues like this one, advocates recognize the serious need for the interventions on behalf of these particular youth to be holistically designed to better support them. Significant effort must be dedicated to crafting new approaches and redesigning existing programs to ensure that services are comprehensively and strategically delivered on an ongoing basis. Helping youth with disabilities in foster care reach healthy, productive adulthood requires taking a broad view of the multiple programs and policies and basing them on positive youth development principles so that the programs and policies share common visions and goals.
For most parents, the goal is to help their children become mature, self-sustaining, and happy adults who find productive work, develop meaningful relationships, and earn a living wage. They do this by creating safe, nurturing environments that allow young people to explore, learn, and develop, knowing there are multiple safety nets and caring adults to help when they hit a rocky patch. These are the underpinnings of healthy youth development, and most young people with family supports can negotiate the maze of service providers (e.g., education, mental health) when needed and remain on track.
But youth with disabilities in foster care are at a severe disadvantage in moving toward healthy adulthood for a wide range of reasons, not the least of which may be the disability itself. Having a disability, compounded by the fact that foster care youth may lack a supportive adult network to help them develop personal attributes and abilities and to navigate through some extremely complex systems, blunts or impedes their efforts to develop the educational, occupational, social, personal, and life skills for success. In addition, many of the programs that exist to help youth with disabilities in foster care are not based on youth development principles, or they lack a youth-centered philosophy. For example, it is not uncommon for youth with disabilities in foster care to be pulled out of school in the middle of class for a court hearing, not only disrupting the learning cycle, but also sending a message to the youth that schooling is unimportant. In a youth-centered system that coordinated its systems, every effort would be made to keep students in class and to arrange for court appearances after school has ended in the afternoon.
Helping young people prepare for successful adult life is a complex undertaking. But helping youth with disabilities in foster care do so requires the commitment, dedication, and hard work of dozens, likely hundreds, of judges, attorneys, health and mental health care workers, caseworkers, educators, advocates, foster parents, and all the other caring adults who come in contact with these youth over the years. Federal and state policies and programs must be structured to recognize this long-term investment across systems and to design a new youth-centered approach. We hope this report will continue the press for positive change.
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Chapter 1: Scope of the Issue
Youth with disabilities and youth in the foster care system are two of the populations considered to be at highest risk of not transitioning into and leading successful, healthy, and economically sufficient adult lives. But when youth have disabilities and are also in the foster care system, their vulnerability compounds. Even before they become adults, they encounter a tremendous number of barriers to living healthy, safe childhoods and adolescences. Unfortunately, youth with disabilities are overrepresented in the foster care system for many complicated reasons.
The Numbers: Youth with Disabilities and Youth in the Foster Care System
On September 30, 2005, approximately 513,000 children and youth were in the foster care system.[4] Concurrently, the U.S. Census Bureau has estimated that just under 13 percent of children ages 6 through 14 have at least one disability.[5] Many of these children and youth overlap.
Research conducted in 1993 by the National Center on Child Abuse and Neglect found that of all children abused, about 17 percent had disabilities.[6] This rate is about twice the rate for youth without disabilities,[7] demonstrating the overrepresentation of youth with disabilities who are abused. To look at these statistics the other way around, several studies have also shown that youth with disabilities are anywhere between 1.6 and 3.4 times more likely to be abused, compared with youth without disabilities.[8]
In addition to the severe disproportionality of youth with disabilities in the foster care system, data shows a serious overrepresentation of African-American youth in the system. Indeed, these two groups are by far the most overrepresented groups in the foster care system.[9] Furthermore, the Council for Exceptional Children reports that African-American children are also disproportionately represented in the special education system.[10] As will be noted later in this section, both youth with disabilities and African-American youth also stay in the foster care system for longer periods than
other youth.
Although studies like the ones mentioned above can estimate rates of abuse for youth with disabilities, determining how many youth with disabilities are actually receiving services in the child welfare system is difficult owing to various methods of determining, assessing, and recording disability information on a state-by-state basis. This important issue will be discussed in more detail in Chapter 3.5.
Abuse and trauma can also happen within the child welfare system. This abuse is often caused by foster families, youth workers, and other agency personnel. In one recent study, one-third of foster care alumni self-reported some form of perceived maltreatment (“by a foster parent or another adult”) while in the system.[11] Abuse can cause disabilities as well. The exact percentage of abuse-caused disabilities is unknown but is estimated to represent a full 25 percent of all developmental disabilities.[12]
This muddled picture of abuse and involvement in the child welfare system for youth with disabilities is partially a result of the fact that precise cause of abuse cannot often be determined. It is further frustrated by the inconsistent and sometimes inadequate reporting methods that states use to record this information. This dearth of clear information has resulted in a serious, nationwide lack of understanding about youth with disabilities in the foster care system.
But despite the challenges of obtaining accurate information about youth with disabilities in foster care, certain information about this population has been collected. For example, one study has determined that between 20 and 60 percent of children entering foster care have developmental disabilities or delays, compared with about 10 percent of the general population.[13] These include cerebral palsy, developmental delays, learning disabilities, mental and emotional health issues, and speech, hearing, and vision impairments.[14] Foster care alumni studies have also found patterns. The Northwest Foster Care Alumni Study (Pecora et al., 2003) found that more than half of alumni studied had mental health problems, compared with 22 percent of the general population.[15] Of those studied, 25 percent experienced post-traumatic stress disorder (PTSD), compared with 4 percent of the general population, and 20 percent experienced major depression, compared with about 10 percent of the general population. Other commonly diagnosed mental disorders among these foster care alumni included social phobia, at 17 percent, panic syndrome, at 15 percent, and generalized anxiety disorder, at 12 percent.[16] Regarding physical disabilities, one California study found that 8 percent of foster youth studied had some type of physical impairment, compared with between 1 and 2 percent of the general youth population.[17]
Needless to say, disabilities are extremely prevalent among youth who receive foster care, which is what makes these young people’s situations and issues enormously worthy of exploration.
Placements and Permanency for Youth with Disabilities in the Foster Care System
In 2005, the average consecutive stay in foster care was just under 29 months.[18] While in care, foster youth may reside in a variety of different settings, including relative family foster care, nonrelative family foster care, kinship care, guardianship care, and institutional settings such as group homes, residential centers, and others. For short periods, most frequently after being removed from home, some youth live in homeless and emergency shelters, hospitals, or trauma intake centers.[19]
Reunification with parents is the most common type of placement that foster youth receive upon exiting the system. In 2005, it was estimated that 54 percent of the youth who exited from care were reunified with their families.[20] However, reunification does not guarantee stability and permanence, and indeed, a large number of youth leave and reenter the system throughout their adolescence; this includes previously reunified youth. The Child Welfare League of America (CWLA) reports that a full 25 percent of youth who exit out-of-home care will at some point reenter.[21] This figure is extremely high. Reentry into the system often means that youth are abused again or neglected, including in cases of reunification with birth parents, a significant issue not to be overlooked.
The U.S. Children’s Bureau (via the Adoption and Foster Care Analysis and Reporting System [AFCARS]) reports that 11 percent of foster youth exited to kinship care in 2005.[22] This number represents only placements upon exiting the system; in reality, about 24 percent of youth live with relatives while they are in the foster care system.[23] Another 18 percent of youth live in institutions such as group homes, residential treatment centers, and different types of hospitals.[24] A large percentage of foster youth determined to have disabilities reside in these types of settings. The issue of institutionalization of foster youth with disabilities is discussed in full in Chapter 3.1.
Adoption is considered a “permanent” setting for youth, despite the fact that some adopted youth reenter the foster care system after they are placed with families. According to the Urban Institute, adoptions from foster care increased substantially between 1995 and 2005. In 1995, approximately 26,000 children were adopted from foster care; by 2000, that number had reached 51,000, and it remained steady through 2005.[25] (AFCARS data from 2005 reported that 18 percent of foster youth who exited from care that year exited to adoption.[26]) The number of youth waiting to be adopted is declining as well: In 2000, 132,000 children were waiting to be adopted; by 2005, this number had declined to 114,000.[27] Despite these positive trends, research still shows that older youth, especially older youth with disabilities, are remaining in the foster care system longer, on average, than youth without disabilities. According to 2005 AFCARS data presented by CWLA, a full 58 percent of foster youth who exited to emancipation (i.e., “aged out”) that year had been in the system for at least the three consecutive prior years. Among foster youth with disabilities, 67 percent of those who exited care via emancipation were in the system for at least three years.[28] These numbers clearly show the disproportionality of both older youth and youth with disabilities in the foster care system for extended periods.
Outcomes: Young Adults with Disabilities Entering Adulthood from the Foster Care System
During adolescence, youth in the foster care system with and without disabilities experience more undesirable situations than the “average” youth. As a group, they are less likely to graduate from high school, more likely to come into contact with the juvenile justice system, more likely to get pregnant earlier, and more likely to experience homelessness. Approximately 24,000 youth nationwide transition out of the foster care system via emancipation annually;[29] as these youth enter adulthood, these serious issues seldom disappear and are indeed more often exacerbated.
By the age of 19, nearly 50 percent of young women in foster care have been pregnant, compared with 20 percent of their non-foster care peers.[30] One study of former
foster youth determined that by age 19, 38 percent of the youth had been arrested, whereas nationally, only about 7 percent of youth are arrested.[31] A full 25 percent
of adult prisoners have been in the foster care system at some point in childhood or adolescence.[32]
A survey of foster care alumni found only 43 percent of them to be employed, and of those, a full 47 percent were earning wages below the poverty line (i.e., “underemployed”).[33] Thirteen percent of these youth were determined to be homeless,[34] although other studies have estimated that about 22 percent of former foster youth experience homelessness throughout adulthood.[35] Approximately 33 percent of former foster youth have no health insurance, versus 18 percent of the general population.[36]
Transition to adulthood is an enormously important issue for youth with disabilities experiencing foster care and will be covered more fully in Chapter 3.3.
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Chapter 2: Systems That Intersect with Youth with Disabilities in the Foster Care System
Youth with disabilities in the foster care system come in contact with many systems throughout their lives—more than “average” youth. Like all youth, they interact with the education system through attending school. It is hoped that, like most young adults, they will interact with the labor system when they transition to adulthood and enter into employment. But unlike most youth, they also interact with the child welfare and foster care systems. Therefore, they also interact with the dependency court system. Youth with disabilities will also interact with various health systems, and youth with behavioral or mental health issues specifically will interact with mental health system services. Lastly, youth with disabilities in foster care have a higher than average chance of coming in contact with the juvenile justice system.
Youth with disabilities in foster care are considered “multisystem” youth when they come into contact with multiple systems such as the child welfare, health, mental health, and/or juvenile justice systems.
For these young people, navigating these various systems and fully understanding their place within them is daunting at best, but can be impossible at worst. In order to truly succeed, they require multiple supports and resources, most of which call for the involvement of reliable, caring, knowledgeable, and often persistent adults. And youth who have severe disabilities often require even more support. This report investigates the issues involved in navigating the systems of care that have been developed to assist these vulnerable youth in their journey toward adulthood.
Appendix B lists the major federal programs and funding sources by which youth with disabilities in foster care are most often served via the systems in which they come in contact.
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Chapter 3: Challenges and Proposed Solutions
As noted, youth with disabilities in the foster care system may interact with multiple systems throughout their childhood and journey to adulthood, including the child welfare, dependency court, health and mental health, education, juvenile justice, and labor systems. Navigating through these complex systems is much more often a challenge than a smooth ride. Many issues surface, and these issues are often prevalent across multiple systems and agencies. The largest issues for this unique population have been identified as the following:
- Insufficiencies in the federal and state investments in youth with disabilities in the foster care system
- Inadequacies in the provision of education and training services for these youth
- Inadequacies in the provision of transition services and in addressing connectivity issues for these youth
- Coordination, collaboration, and accountability issues for the systems involved in serving these youth
- Issues around the use and sharing of data and information pertaining to these youth
The next five sections of this report will investigate these five crosscutting issues and propose policy recommendations that can help to address them.
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Chapter 3.1: Federal and State Investments in Youth with Disabilities in the Foster Care System
The federal laws that support children and youth in the child welfare system have progressed immensely in the last few decades. As a result of some of these more recently implemented federal laws, foster youth are supported by more systems and policies, in more ways, and for more years. Additionally, with the improvements made to the Individuals with Disabilities Education Act (IDEA) in recent years, more youth receiving special education services are receiving the supports they need.
But these laws are still far from perfect, and as a result, far too many youth are still not being supported in the ways they need. Outcomes for most youth with disabilities in foster care regarding educational attainment, economic sufficiency, and health are still far too bleak. Many believe that deeper, broader investments that must be made at the federal and state levels in order to send a more absolute message that the futures of youth with disabilities in the foster care system, who are often more challenged to succeed than youth without special needs, are of importance to all.
Needed investments involve the following:
- Granting more spending flexibility to the states so that they can make more localized decisions about what is best for their youth
- Altering eligibility requirements at the federal level to better support more youth
- Using research to inform policy and practice
- Investing in foster parents so that young people’s safety, permanency, self-determination, and well-being are enhanced
- Reducing stigma and increasing knowledge about this population by supporting public awareness campaigns around the issues involved
The specific laws mentioned in this section primarily relate to the child welfare system. However, because such a large percentage of foster youth are affected by disabilities, these laws are extremely pertinent to many youth with disabilities as well.
More spending flexibility must be granted to the states to allow them to address the unique needs of this population.
Through Title IV-E of the Social Security Act, the Federal Government currently spends approximately $5 billion per year to reimburse states for foster care expenditures on welfare-eligible children and youth.[37] Title IV-E is an uncapped entitlement but may be used only for youth in the foster care system. This money made up 65 percent of total federal child welfare spending in fiscal year 2004, while adoption assistance funding (also authorized under Title IV-E) represented another 22 percent. Federal funding that can be used for preventative services (but is not always), which mostly comes from the Title IV-B programs (Subparts 1 and 2) and discretionary programs through the Child Abuse Prevention and Treatment Act (CAPTA), made up only 11 percent of federal child welfare spending in 2004.[38] Only the remaining 2 percent of federal child welfare funding was spent on independent living programs,[39] a noticeably negligible percentage.
(These percentages do not take into account monies from other federal programs that do not specifically fund child welfare services but are sometimes used for these purposes, such as Temporary Assistance for Needy Families [TANF], the Social Services Block Grant [SSBG], and Medicaid. Funds from programs like these, which are used for child welfare services, totaled another $5 billion in 2002.[40])
Despite the billions of federal dollars spent on foster youth, many child welfare experts believe that the funding structure is too rigid and is, as a result, hampering states’ abilities to truly serve foster youth. Most argue that better outcomes can be achieved by allocating additional resources to both prevention services (e.g., family substance abuse counseling) and reunification services. Many also believe that the current funding structure, in which the majority of funding goes to the foster care system, actually encourages foster care placement over prevention services, reunification, and even adoption, which are considered more family-centric options.[41] Some, but not all, believe there should be more federal support for kinship care so that youth are not unnecessarily placed into the foster care system when they could be healthily supported by family members instead.[42]
Flexible spending would expand the list of federally reimbursable child welfare services, thereby allowing states to prioritize their own activities (within certain parameters). Some states are already experimenting with flexible child welfare spending by taking advantage of a limited number of “demonstration waivers” that have been granted to a handful of states for the expressed purpose of testing alternative uses and funding structures for child welfare dollars with the goal of improving foster youth outcomes. These waivers are cost-neutral, meaning that states are allotted the same amount of child welfare funding as they would be normally (e.g., through Title IV-E), but with less strict guidelines on how these funds must be used, although waiver demonstration programs do require rigorous evaluations.[43] Examples of activities that are being funded in these demonstration programs include strengthened family assessments; intensive services to reduce out-of-home placement rates; assisted guardianship and kinship permanence; family decision meetings; and improved access to substance abuse and mental health treatment.[44] Since 1996, 19 states have implemented 27 child welfare waiver demonstrations, which, according to a U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation issue brief, “indicates widespread interest in more flexible funding for state child welfare programs.”[45]
Some child welfare experts also believe that spending flexibility would especially help agencies better serve foster youth with mental, emotional, and developmental disabilities, as it would allow these agencies to devote resources toward newer care models that current research shows are demonstrating positive outcomes specifically for these youth, such as wraparound services and therapeutic foster care.[46] (Both of these care models are discussed in more detail later in this chapter.)
The Pew Commission on Children in Foster Care has made its own policy recommendations regarding the issue of spending flexibility. It promotes the use and expansion of the federal waiver program and also believes that when states reduce their foster care expenditures, they should be allowed to reinvest their unused funds in other sanctioned child welfare services related to “prevention, treatment, and support once a child leaves foster care.”[47]
A specific problem that some experts note as being caused by the current inflexible federal child welfare funding structure is that some parents are effectively forced to place their children into the foster care system when the children require special services that the families cannot afford. This problem indicates that the current funding structure may not be properly supporting services that would help prevent the need for foster care placement, especially for young people with special needs. The Government Accountability Office has reported that in fiscal year 2001, “child welfare directors in 19 states and juvenile justice officials in 30 counties estimated that…parents placed over 12,700 children into the child welfare or juvenile justice systems so that these children could receive mental health services.”[48] The Keeping Families Together Act, which has been introduced several times by Congress but not yet enacted, addresses this issue directly. This act would provide states with grants to build the infrastructure to serve youth with mental health issues more efficiently while keeping them with their families.[49]
One promising strategy being implemented in many states that focuses on providing preventative family service activities with the goal of reducing removals of youth from their homes is called “differential response.” Differential response offers local authorities more flexibility in deciding how to respond to reports of abuse and neglect by taking into consideration the severity of the issue, the immediacy of child safety concerns, and individual family needs. In 2007, New Jersey implemented a new Differential Response Pilot Initiative in four counties. “Differential response tells families they do not have to wait for child abuse or neglect to occur before they can get help to keep their children safe, stable and well,” said New Jersey Department of Children and Families Commissioner Kevin M. Ryan in a press release.[50] He continued that it “is about building and maximizing the use of community resources such as child care, housing assistance, and wraparound services that target families’ unique needs.”[51] According to the press release, three of the four counties implementing the initiative “will focus on connecting families to emergency housing and utility assistance, domestic violence services, day care, mental health, marital and family counseling, and employment training and placement.” One of the priorities of the program is to provide supports for “at-risk families” so that “long-term involvement in government programs can be avoided.”[52]
Some child welfare experts also believe that kinship and guardianship care should be more fully supported at the federal level. According to a report released by Generations United, of the approximately 500,000 young people awaiting placement at any given time, 124,000 (about 25 percent) live with relatives.[53] However, in some states, relatives receive federal assistance only if these youth remain in the foster care system—not if the relatives become legal, permanent guardians. [54] Some think this restriction deters too many of these adults from becoming legal guardians. (Usually, the “guardianship” designation allows a caregiver to access services on behalf of a child or youth, but unlike adoption, after which parental rights are relinquished, a youth’s birth parent is able to reclaim custody of the child from a guardian.[55] The specifics of guardianship laws differ by state.)
Kinship and guardianship care advocates argue that research shows that children and youth placed in the care of relatives are just as safe, or safer, compared with youth placed in unrelated foster families. According to national data, these youth are also less likely to switch caregivers than nonrelative-placed youth (82 percent were living with the same caregivers one year later, versus 65 percent of nonrelative-placed youth).[56] However, other sources indicate that youth in kinship care do not necessarily fare better than other out-of-home youth in terms of living situations and life outcomes and in some cases actually fare worse. For instance, in 2002 it was found that 54 percent of youth in kinship care were living with families with incomes below 200 percent of the federal poverty level.[57] This is one reason why the federal funding of kinship care is controversial.
The Kinship Caregiver Support Act has been introduced several times in recent years by Senator Hillary Rodham Clinton (D-NY) but has not yet been enacted. This act would establish a program to provide federal assistance to states for subsidized guardianship programs to assist relative caregivers and their children. The Child Welfare League of America (CWLA), as well as many other child welfare organizations, endorses this act.[58] These advocates believe that federal child welfare funding should be flexible enough at the state level to allow for the support of kinship and guardianship care as deemed necessary, and that an investment in kinship care will lead to more positive outcomes for the families who devote their time and resources to taking care of their kin, as well as for the youth themselves. This may be an especially beneficial policy for youth with disabilities in the foster care system, who are generally adopted less often and therefore may be able to find permanency and stability more easily through the kinship care option.
Eligibility requirements for laws pertaining to this population should be reexamined to ensure that they are consistent, current, and supportive.
Although any youth, independent of income status, can be placed into foster care, today a young person is eligible for federal foster care support only if his or her family meets income eligibility requirements from 1996, the last year that the federal Aid to Families with Dependent Children (AFDC) program existed before it was replaced by Temporary Assistance for Needy Families (TANF).[59] This is because eligibility requirements have not been updated to take into consideration the new law or inflation rates since 1996. As a result, from 1998 to 2005, an estimated 35,000 more children and youth became ineligible for federal foster care assistance because of their family income levels.[60] In 1998, 53 percent of all American children in foster care were receiving support, whereas in 2005, only 46 percent received it.[61]
Because federal law requires states to ensure the protection and care for all of their children, states have been forced to make up the difference between what is required to fund the necessary services and what they receive from the Federal Government. The states lost an estimated $1.9 billion in federal foster care support between 1998 and 2004, an enormous amount of money for the states to make up. [62]
This “lookback,” what the Pew Charitable Trust’s “Kids Are Waiting: Fix Foster Care Now” campaign is calling this policy, ties eligibility to a program that has not been in existence for 11 years as of 2007, affecting the eligibility for federal assistance of families who adopt. Pew asserts that this effect is creating disincentives to adoption for foster youth.[63]
Most advocates and foster care experts agree that the outdated eligibility requirements are unfair to thousands of families and must be updated to fairly serve all of the low-income youth and families in need of support, instead of just some of them.
Research should inform policy and practice. Proven best practices should be endorsed, and information about them should be disseminated at the federal and state levels.
More now than ever before, research and data collection increasingly provide us with more accurate and more insightful views into the situations and outcomes of youth with disabilities and youth in the foster care system. And the data that has been uncovered about these populations has both influenced and been influenced by practice in multiple fields. With the current focus on accountability and data, more and more programs and practices are now facing more rigorous evaluation to determine their effectiveness and worth. But this research and the insight it brings to multiple systems is all for naught if it is not used to inform and influence policy in a positive way. Many believe that the best means to ensure that research is linked to policy and practice is for the Federal Government to take a primary role in funding not just data collection, but also research that determines promising practices and evaluations that measure programs that implement these practices.
As noted earlier, the Federal Government is already investing in research in the child welfare arena—for example, by evaluating the states whose child welfare agencies are implementing waiver demonstration programs to try innovative methods for serving youth in foster care. Of course, the funding for program and practice evaluations should extend beyond publicly funded programs so that more “out-of-the-box” practices can also be taken into consideration. Research should also be conducted into interventions for specific populations, such as youth with disabilities in foster care.
However, still more can be done at the federal level regarding research. For example, while the Children’s Bureau performs data collection, it very rarely funds research. As a result, schools of social work and other research institutions are left to fund and conduct research on their own about youth in the child welfare system. Research and the dissemination of results would be greatly strengthened by support from the Children’s Bureau, which could include providing grants and even conducting research.
As an example of the importance of using research to inform policy and practice, the majority of this section focuses on what research is showing to be characteristic of youth with and without disabilities in foster care who are placed in group homes and other institutional placements. It also shares research on promising practices for serving foster youth with behavioral issues and some severe disabilities.
The group home is one type of institutional residence for youth in the foster care system. The purpose of most group home placements is to provide youth with intensive mental health services, including psychopharmacological therapeutic interventions. According to research, the most common reasons for being placed in residential treatment centers are “severe emotional disturbance (clinical depression, PTSD, anxiety disorders, and so forth); aggressive/violent behaviors; family/school/community problems; and physical, sexual, or emotional maltreatment.”[64]
In general, only youth with severe mental health and behavioral problems are supposed to be placed in group care. Indeed, group homes are intended to be placements of last resort, as they are considered extremely “restrictive environments” for youth.[65] Even so, it has been shown that youth without mental health problems are assigned to group care from time to time as a result of the absence of available foster care placements[66] (although it is not known how regularly this occurs). Such placements are especially prevalent for older youth, who are traditionally more difficult to place into family care. What this means is that some youth are living in more restrictive settings than they require.[67] In fact, most child welfare experts believe that most foster youth who have disabilities should be placed in noninstitutional environments, such as family foster homes, whenever possible. The exception is when these youth need specific, intensive services that are accessible only in certain settings.[68] Some believe that unnecessarily restrictive settings actually worsen certain disabilities and behavior problems in certain situations. In fact, the Surgeon General’s 2000 report on children’s mental health indicated that “residential treatment has not shown substantial benefit to children and youth with mental health problems,” and that research “hints at the possibility that residential treatment may have adverse effects because of the contagion of problem behavior from one child to another.”[69]
Research has determined that many negative characteristics are associated with foster youth being placed in group homes and other institutional settings, especially compared with foster youth residing in foster homes, who have been shown time and time again to generally fare better.[70] According to a recent U.S. Department of Health and Human Services report, 72 percent of institutionalized foster youth experience problems with family, 57 percent experience problems at school, 22 percent suffer skill deficits at school, 66 percent are aggressive, 34 percent have been involved in delinquent behavior, 31 percent have substance use problems, almost half are victims of abuse or neglect, and about 20 percent experience posttraumatic stress.[71] Youth in group homes are more likely than those in foster or kinship care to report that they do not like the people they live with and that they see their biological families less.[72] They are also less positive in general about their living experiences.[73]
One study has determined that among young adults who were in foster care for at least one continuous year, those living in family foster care settings ended up functioning better as adults than those in group care in most areas, including attainment of higher levels of education, lesser likelihood of arrest, fewer substance use problems, higher likelihood of having close friends, and more satisfaction with income levels and their lives in general. However, it is important to note that it is impossible to infer causality regarding these statistics, which means that it cannot be determined that residential placement type causes negative characteristics and outcomes, because institutionalized youth may have already been prone to these characteristics before entering their placements.[74] Nevertheless, these statistics are extremely important, because understanding the barriers that exist for youth in group homes can and should help in developing strategies to address the special needs of these youth.
One of the negative outcomes of group home placement that foster youth advocates say can be confirmed, however, is the fact that fewer youth residing in group homes are adopted. The Child Welfare League of America has determined through studying Adoption and Foster Care Analysis Reporting System (AFCARS) data from 2005 that compared with all foster youth who exited the system in any manner after existing in it long term (three or more years), those who exited via emancipation were 7 percent more likely to live in group homes when they exited, and 5 percent more likely to live in another type of institution.[75] A foster care alumnus and special education teacher in the San Diego Unified School District who teaches foster youth with disabilities notes that this is because parents often adopt after being foster parents first. Also, because fewer parents choose to foster youth with behavior problems, and youth placed in group homes are usually labeled as such, fewer of these youth end up being adopted or even fostered.[76] “So,” this teacher concludes, “one of the major ‘outcomes’ of group home placement [on many occasions] is the permanent loss of a loving family.”[77]
Indeed, according to 2005 AFCARS data, 60 percent of adoptive parents were foster parents first, another 25 percent were relatives, and only 15 percent were “nonrelative,” nonfoster parents.[78] In other words, 85 percent of adopted youth are adopted by relatives or foster parents, while only 15 percent are adopted by nonrelatives who are not foster parents.
Research is now beginning to determine best practices that should be used in group home settings to support youth, as well as alternative practices that can be implemented in place of institutionalization that may better help many of the types of youth who are commonly placed into group homes and other residential settings, including youth with disabilities.
Despite the 2000 Surgeon General’s report referenced earlier, which found that group homes are not often beneficial to youth and may even be detrimental to their development, positive findings (from other sources) have also emerged from residential programs—specifically, those that use the following types of exemplary practices:
Family involvement, supervision and support by caring adults, a skill-focused curriculum, service coordination, development of individual treatment plans, positive peer influence, enforcement of strict code of discipline, building self-esteem, family-like atmosphere, and planning and support for post-program life.[79]
However, the Surgeon General’s report maintains that evidence shows youth with severe emotional or behavioral disorders to have more positive outcomes when they are provided with “home- and community-based treatments such as multisystemic therapy, intensive case management, and treatment foster care,”[80] instead of being placed in group homes. “Even for youth in danger of hurting themselves (suicidal, runaways, and so forth), brief hospitalization or intensive community-based services may be a more apt intervention than [residential care],” according to the report.[81]
Two of the more often endorsed alternative methods to caring for foster youth with disabilities are therapeutic foster care and wraparound services, as more and more research illuminates their positive effects. Therapeutic foster care is considered the least restrictive form of out-of-home therapeutic placement for children and youth with severe emotional disabilities. Care is provided in private homes with foster parents who have been specially trained in therapeutic care.[82] Program models vary, but all have in common the following: foster parents are specially trained to handle youth with disabilities, usually only one young person is cared for per home, a higher foster parent stipend is awarded, and foster parents receive extensive preservice training and in-service supervision and support.[83] Therapeutic foster care is often funded jointly by child welfare and mental health agencies.[84] The Surgeon General’s Mental Health Report notes that therapeutic foster care programs are inexpensive to start because of limited facility and staff costs; it also references a study that found that these programs cost half as much as residential treatment center programs.[85] Although there are not yet many comprehensive studies about therapeutic foster care programs, existing research shows promising trends. All of the studies mentioned in the Surgeon General’s report showed that “youths in therapeutic foster care made significant improvements in adjustment, self-esteem, sense of identity, and aggressive behavior. In addition, gains were sustained for some time after leaving the therapeutic foster home.”[86]
One of the barriers to serving large numbers of youth with therapeutic foster care is the lack of enough adults who are willing to become therapeutic foster parents, despite the fact that this service is not permanent. This issue may be partially due to how expensive the services are that many youth in therapeutic care need versus how much the state is willing to pay for them. According to the special education teacher in San Diego, “In California, a RCL 12 [Rate Classification Level 12] (moderate to high needs) group home is paid $5,613 per month [by the state] to care for a youth…” But therapeutic foster parents are “often paid a rate closer to $700 per month—in spite of the fact that the higher needs of the youth might require a foster parent to work less per week or to take more time off from work.”[87] The teacher asserts that this funding structure ends up favoring institutionalization over more family-centered options by reimbursing institutions at far higher rates than therapeutic foster parents—despite the fact that family-based options are less expensive.[88]
The Surgeon General’s report also references the therapeutic group home as a relatively new and thus far promising model of care for youth with serious emotional disturbances. The report recommends that more research be done on this practice.[89] When federal agencies support the performance of research on alternative care models like therapeutic foster care, they demonstrate their investment in foster youth, and especially those with disabilities.
“Wraparound services” are considered an approach to care, instead of a program, and are a relatively newly recognized model of care. According to the Surgeon General’s Mental Health Report, “the wraparound approach is based on a belief that the child and family should be placed at the center of an array of coordinated health and mental health, educational, and other social welfare services and resources, which a case manager wraps around the patient and family.”[90] Wraparound services have been shown to be beneficial for all youth who have multiagency needs, but recent research indicates that the approach is most effective for children and youth with emotional disturbances.[91] Providing wraparound services involves assembling a team of experts to create an individualized plan of services and then evaluating that plan. The National Wraparound Initiative, an organization that provides resources on the wraparound philosophy and effective practices, is working to create standards for effectiveness around this promising approach to care.[92] The Federal Government should support more research on wraparound services, as well as the work of organizations like the National Wraparound Initiative, with the goal of more comprehensively serving youth with disabilities without overinstitutionalizing them.
One example of a program that offers community/family-oriented wraparound services is a residential program called the Whitaker School in North Carolina, of which a study was conducted in 2000. This program operates under the “Re-education model,” which is “based on systems theory in that emotional conflict is derived from interpersonal and system level problems, such as service provision problems in the mental health system.”[93] The Whitaker School is particularly targeted to students who have not been treated successfully in more traditional residential care programs. Most of the adolescents in the Whitaker School study had major psychiatric diagnoses such as conduct disorder, attention deficit hyperactivity disorder (ADHD), major depression, and PTSD, and 80 percent had documented abuse on their records.[94] The success rate (which was based on frequencies of illegal activity, school attendance, and hospitalization) was found to be 58 percent in this program, which is significantly higher than the success rate of traditional residential programs.[95]
The problems with institutional group care highlighted here, along with the compelling newly emerging evidence that supports alternatives to institutionalization, together illustrate the concern that child welfare research and practice do not always align with the policies and funding structures developed to support youth, and those with disabilities in foster care specifically. The Federal Government should be more involved with relevant research to understand what works for this challenged population and then better align its policies to support practices that are deemed promising.
In addition to supporting research that can help ascertain promising practices for serving youth with disabilities and behavior issues in the foster care system, the Federal Government should actively disseminate the high-quality information that is collected. The Pew Commission on Children in Foster Care recommended this in its 2004 recommendations.[96] Proper dissemination tactics include providing technical assistance to help program and agency personnel fully understand the nuts and bolts, and the hows and whys, of service and program implementation. Some child welfare advocates and experts also believe that the government should take one step further by rewarding (through monetary incentives) the states and programs that implement the best practices that research has shown to be effective.
One positive step is the development of the various National Resource Centers (NRC) funded by the U.S. Department of Health and Human Services’ Children’s Bureau. The NRCs conduct free training and technical assistance for states that request it, appear at conferences, collect information, and disseminate information on their Web sites. These efforts should continue to be supported at the federal level to make more information about “what works” readily available to the departments and agencies that support foster youth with disabilities.
An investment in the recruitment and training of foster parents is an investment in safety, permanency, and positive well-being for foster youth.
The adults who commit to serving as caring, nurturing foster parents are the single most valuable component of the foster care system. Indeed, this system is completely dependent on caring people and well-functioning systems to provide youth with disabilities in foster care with the support and services they need to thrive. However, not enough adults make the commitment to care for foster youth, and especially youth with disabilities, which is part of the reason why most of the approximately 20,000 youth transitioning out of the foster care system every year do so unattached to any family. When adults do commit to fostering youth, many feel frustrated about the lack of training, support, and resources they receive to prepare them for success.
To give more foster youth, and especially those with disabilities, the chance to enter into loving, nurturing families, the Federal Government must make a serious investment in the targeted recruitment of foster care parents, as well as in thorough training of foster parents and supporting funding and resources. These investments would assist foster parents greatly while helping to reduce the disproportionality of youth with disabilities who are left in the system for prolonged periods. [97]
According to research, there is no single “profile” of a family willing to foster “difficult” youth.[98] Studies in the 1970s and 1980s determined that religiously affiliated adults were less likely to adopt African-American children but more likely to adopt children with mental or physical disabilities, that politically liberal adults were more likely to adopt African-Americans, and that single parents were more willing to adopt children with mental disabilities.[99] However, a more recent study tried to establish whether factors such as education and income levels, marriage status, working in a helping profession, and having social support from family influenced an adult’s decision to foster children and youth with emotional and behavioral disorders.[100] Although some patterns were uncovered, significant profiles did not emerge.[101]
The study also determined that the youth prospective foster parents consider least “desirable” to care for are those with HIV, teenagers, those with fetal alcohol syndrome, drug-exposed infants, youth with physical disabilities or serious illnesses, and youth with serious emotional or behavioral problems.[102] The behavioral problems that these adults determined to be least acceptable were fire starting, behaving destructively, and acting out sexually.[103] Of course, youth who are less desirable to care for are more likely to remain in the foster care system for several years and are also more likely to be institutionalized.[104] The prevalence of negative outcomes associated with both long-term and institutionalized foster youth means that more targeted investment in healthy, accurate placements, as well as permanency for these youth, is especially necessary.
The authors of the study argue that statistics like those cited above, despite their limits, are crucial for understanding how to recruit foster parents to take on more “challenging” foster youth. Because fewer families are willing to foster youth with disabilities, “it is essential that agencies target recruitment efforts to attract families who are willing to foster children with emotional or behavioral problems.”[105] The authors add that inappropriate placements often lead to compromised child well-being and more frequent disruptions when they do not work out.[106]
“The fostering of kids with disabilities is often low because the idea is so overwhelming and unfamiliar to [adults],” explains an official at Special Families Foster Care in San Diego, California.[107] The truth is that “many older kids in the foster care system are considered ‘unadoptable,’ and even ‘unplaceable,’ if they have a disability, so they are institutionalized,” added a program manager in the Juvenile and Family Law Department of the National Council of Juvenile and Family Court Judges.[108] This official asserts that agencies must therefore invest in targeted and comprehensive recruitment strategies to make sure that the right adults are being recruited and matched with the right youth, and that they are trained properly to work comfortably with youth with disabilities.[109]
Some advocates in the disability community believe that more should be done to recruit adults with disabilities to care for foster youth with disabilities. Cox et al. (2003) indicate that targeting recruitment to more adults working in “helping professions” (such as teachers, social workers, and hospital employees) may yield more positive results in terms of matching parents with youth with disabilities and increasing these young people’s permanency outcomes.[110]
Still another issue in the battle to recruit parents to care for youth with disabilities is stigma. Child welfare personnel and prospective foster parents alike have negative perceptions regarding youth with disabilities. When the recruiters themselves hold negative or stereotyped attitudes about children with disabilities, they cannot debunk the stigmas or fears that potential parents may have. A program manager at the Child Welfare League of America believes that partnering foster care agencies with disability organizations may help to reduce stigma at all these levels.[111]
A prevalent issue that both current and prospective foster parents acknowledge involves training and support. As the Special Families Foster Care official noted, many prospective foster parents are overwhelmed by the idea of fostering youth with disabilities. This can partially be attributed to the fact that a large majority of parents are not given any or enough information about disabilities during their foster parent trainings. Even without taking disability information into consideration, the number of training hours mandated by the states for foster parents varies widely and is quite meager in some states. For example, Minnesota mandates only six hours of (basic foster care) training, while Utah mandates 32 hours.[112]
One may infer that training programs with fewer mandated hours teach little information about the intricacies of fostering youth with disabilities. However, even more established, national foster parent training curricula often leave out this information. Two widely used training curricula are Parent Resources for Information, Development, and Education (PRIDE) and the Massachusetts Approach to Partnerships in Parenting (MAPP). Neither provides extensive information about disabilities to the foster parents they train.
For example, the MAPP curriculum discusses the “effects of maltreatment on development” and “approaches to behavior management,” but that is the closest it comes to addressing fostering youth with disabilities.[113] The PRIDE curriculum discusses the “developmental needs of infants and children who have experienced trauma, loss, and separation” in its final training session, but nothing more specifically relevant to disabilities is discussed.[114] However, some agencies are working to include disability information in their trainings. A special education teacher in the San Diego Unified School District notes that Special Families Foster Care in San Diego, with whom he is currently training to become a therapeutic foster parent, uses the PRIDE curriculum for its basic foster parent training but also adds specific disability information and other pertinent information to its trainings.[115] Clearly, this practice should be replicated more widely so that more parents are familiar and comfortable fostering youth with a variety of disabilities.
Foster parents who support youth with disabilities often share their frustrations with the lack of resources, supports, and training they receive from child welfare agencies. Foster parent Tamara Connor of Topeka, Kansas, states,
Foster families need training in positive behavior supports. They need training on how to entertain and provide stimulation to children with significant disabilities. They need medical training beyond CPR and first aid. The list can go on and on.[116]
Janel Sheppard is a foster care alumna who suffered greatly when she was placed, during her adolescence, with a range of unsuitable foster parents, including “adults who were drinking heavily, doing drugs, on the verge of divorce, and were at times extremely physically, mentally, and emotionally abusive.” She says,
If I could change policy or practice related to foster care, I would change the screening, training, and process for people becoming foster parents. I would [also] make it mandatory for each parent to speak to a former foster parent [to get better acquainted with the realities of fostering a child].[117]
Cox et al. (2003) also recommend specific training on disabilities so that fewer parents will feel uncomfortable fostering these youth and so that they are fully prepared when they actually do. “Information about how to effectively foster [youth with emotional and behavioral disabilities] should be highlighted during pre- and post-service trainings…. [S]uch trainings should provide information on effective discipline strategies as well as information about how to interpret a child’s worrisome behaviors within the context of past trauma.”[118]
While some advocates believe that foster parents caring for youth with disabilities should receive higher stipends (and many states provide higher stipends), Connor believes that additional money alone is not enough. She believes that monetary incentives and adequate training should go hand-in-hand with added support networks and other resources for foster parents fostering youth with disabilities:
I believe the key is training, support, and a team of people working together. I don’t believe we [should] just pay foster families more [for fostering youth with disabilities]; I believe that we need to provide support for them. They need staff in their homes providing hands-on training, providing respite, providing therapy, and just dropping by to make sure everyone is OK. The state I live in [Kansas] pays our foster families a lot of money to take care of children with mental retardation and developmental disabilities (MR-DD). It used to be that the state paid less but then also purchased respite/attendant care for foster children. I believe that this was much healthier for everyone; the families are now supposed to purchase it themselves with the money they get, but most do not. [As a result] these families are at a high risk for burn-out. They could probably benefit from a par |
