Improving the Well-Being of Our Children

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					                        Improving the Well-Being of Our Children
                                         Closing the Gap between Research and Policy




                                                                April 8, 2005
                                                               Yale University
                                                            New Haven, Connecticut

                                A report from the symposium sponsored by
            Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services


Improving the Well-Being of Our Children: Closing the Gap between Research and Policy            29
On April 8, 2005, Yale University’s Interdisciplinary Center for Bioethics and Casey
Family Services, the direct service agency of the Annie E. Casey Foundation, con-
vened a multidisciplinary group to explore ways to deepen the synergy between re-
search and policy and, thereby, improve outcomes for children, youth, and families.
The symposium, Improving the Well-Being of Our Children: Closing the Gap between
Research and Policy, focused on three critical areas: early childhood development and
education, supporting youth who are transitioning from foster care, and universal
health coverage for children.

This document, which includes an executive summary and a full report, was pre-
pared and produced jointly by Yale University’s Interdisciplinary Center for Bioeth-
ics and Casey Family Services, and was edited by Madelyn Freundlich.
       Improving the Well-Being of Our Children
                 Closing the Gap between Research and Policy




                                April 8, 2005
                               Yale University
                            New Haven, Connecticut

                    A report from the symposium sponsored by
Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
Improving the Well-Being of Our Children




                     Executive Summar y
                          Hosted by Yale University’s Interdisciplinary Center for Bioethics and Casey
                     Family Services, Improving the Well-Being of Our Children: Closing the Gap between
                     Research and Policy brought together more than 150 people—researchers, policy-
                     makers, advocates, service providers, and community members—to explore ways
                     that the synergy between research and policy can be deepened to improve outcomes
                     for children, youth, and families. The symposium was developed with a recognition
                     that bridging research and policy is critical to the development, implementation,
                     and evaluation of services for vulnerable children, youth, and their families but that
                     often, the synergy between research and policy is missing. As noted by Raymond L.
                     Torres, executive director of Casey Family Services, in his welcoming remarks, the
                     goal of the symposium was to bring together experts from across the country to col-
                     lectively examine how “we move knowledge forward, how we make a difference.”
                          Because of the critical need to demonstrate program outcomes, research is es-
                     sential to public policy change. Research can expose problems in program and
                     policy design and implementation, and provide both the impetus and the evidence
                     for change. The results of research may be the last question that is asked in the for-
                     mulation of policy, but it is research that will provide the basis for sound policy. As
                     Professor Edward Zigler noted in his opening remarks, there is a critical need for
                     knowledge but there must be a synergy between the knowledge developed through
                     research and policy because “public policy is simply not the inexorable readout of
                     science and knowledge.” Michael Brennan, state senator from Maine, further elabo-
                     rated on this point, stating, “The essence of public policy is blending together what
                     we think and what we know with how we feel and our passion—then we have good
                     public policy.”
                          The urgency of bridging the gap between research and policy was a key theme
                     throughout the discussions that took place at the symposium. Frances Padilla, ex-
                     ecutive director of the Universal Health Care Foundation, set the tone in her in-
                     troductory remarks, exhorting the participants that “If there has ever been a time
                     for the gulf between policy and research to be closed, it is now.” Given that many
                     of the systems that are expected to serve children, youth, and families are “broken”
                     and the economic and moral dilemmas that this reality poses, she urged “coura-
                     geous action.” Laura Lee Simon of the Connecticut Commission on Children
                     echoed this call, observing that “closing the gap between research and policy is not
                     for the faint-hearted or for those who do not have staying power because finding the




2                                              Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
solutions to the health and mental health and educational and social welfare needs      “What I am saying is that foster children
of children rarely has been easy.”                                                       need stability and understanding. While
    The symposium focused on three critical issues that demand a greater syn-            they’re still young, they need to deal with
                                                                                         any issues that they may have and have
ergy between research and policy if positive outcomes are to be achieved for chil-
                                                                                         someone to talk to, so when they get
dren, youth, and families: early childhood development and education, support-           older, they make the right choices in life.”
ing youth who are transitioning from foster care, and achieving universal health
coverage for children. Presenters and participants examined these issues from a         Erika Castillo, age 23,
range of perspectives.                                                                  formerly in foster care




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy                                               
Improving the Well-Being of Our Children




                                        Executive Summar y, continued
“I am speaking for every young          Early Childhood Development and Education
mother who struggles to make a better         Research has determined the factors that are associated with high-quality early
life for herself and her children. We
                                        childhood development and education programs and has made clear that invest-
need more day-care providers like
                                        ments in high-quality programs can result both in positive outcomes for children
Elizabeth Cellotto Day Care. How can
we get services that we need without    and long-term cost savings. Research also has documented the negative outcomes
having to pay so much money?”           for children when the two ingredients that are necessary for quality early childhood
                                        care and education are absent: adequate financing and government oversight. In the
Jasmine Langley, 18-year-old            current policy environment, child care is viewed as a parental, as opposed to a pub-
mother of a 2-year-old daughter         lic, responsibility. As a result, early childhood education and development programs
                                        are not well funded; are not developed in an integrated manner; are subject to
                                        widely varying licensing standards and often, limited government oversight; and, as
                                        a consequence, generally do not address well the needs of children and their fami-
                                        lies, particularly families who work. As research has demonstrated, a viable, coher-
                                        ent system of early childhood education must be universal, offer affordable services,
                                        provide public funding, and ensure quality teacher training. The question is how to
                                        create public will for the implementation of this broad vision of early childhood de-
                                        velopment and education. It also is essential that a commitment is made to ongoing
                                        studies that continue to document the characteristics of good-quality child care and
                                        pre-kindergarten programs and that demonstrate the positive outcomes and cost
                                        savings associated with these programs.




                                                                 Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
Youth Transitioning from Foster Care
     Research has shown that youth transitioning from foster care at the age of ma-
jority, who nationally number about 20,000 youth each year, often experience par-
ticularly troubling outcomes in relation to their safety and well-being. In addition
to these youth, some youngsters exit before age 18 and then re-enter care. For both
groups, there are important research questions about the quality of services and sup-
ports that they receive after leaving foster care. Through the use of administrative
data, outcome studies, and program-specific evaluations, there is a growing knowl-
edge base about the challenges that these youth face and the types of services and      “As researchers, we have to be reminded
                                                                                        that behind every statistic is somebody’s
supports that can most effectively support their transition to adulthood. These stud-
                                                                                        child or somebody’s grandchild or
ies, for example, have indicated that youth more successfully make the transition
                                                                                        somebody’s mom or somebody’s dad.”
to adulthood when they leave care with established family relationships and em-
ployment experience. In order for research to more fully inform policy in this area,    Laura Lee Simon, Connecticut
mechanisms are needed to organize coherently the many findings from research            Commission on Children
and evaluation. The bridging of research and policy is particularly important with
regard to systems issues that impact outcomes for transitioning youth, including the
disproportionate representation of children of color in foster care. Equally critical
to the effective development of policy is the ability to clearly communicate research
findings to state legislators, the vast majority of whom are not social workers and
may not be familiar with the issues. Although research provides a common ground
for discussion with legislators, the development of working relationships with them
is key, as is the direct involvement of youth as advocates.




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy                                           5
Improving the Well-Being of Our Children




                     Executive Summar y, continued
                     Universal Health Coverage for Children
                          Research has shown that children with health insurance have better outcomes,
                     receive more preventive care, and have access to primary health care. Yet, up to 10
                     million children in the United States are uninsured, and the children at the great-
                     est risk of being uninsured are poor, noncitizen, and Latino. Research has not well
                     addressed many of the issues regarding the insuring of uninsured children, includ-
                     ing the effectiveness of different outreach and enrollment programs. One recent
                     study, however, assessed whether community-based case managers were more ef-
                     fective than traditional State Children’s Health Insurance Programs (schip) and
                     Medicaid outreach and enrollment methods with low-income Latino families. This
                     study found that case managers were significantly more effective in enrolling fami-
                     lies, assisting the families to remain continuously insured, and reducing the time
                     for families to obtain health insurance. Three goals must guide any public policy
                     strategy that aims to ensure children’s access to health care: increasing enrollment
                     in insurance programs for children, improving the effectiveness of care to promote
                     children’s healthy development, and strengthening the capacity to care for children
                     with special health care needs.




                                              Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
Cross-Cutting Themes                                                                       Erika Castillo
     There are many obstacles to creating a synergy between research and child and              Erika entered foster care at the age of 9
                                                                                           along with her three siblings. She lived in 15
family policy in the United States: the historical view of family as a private institu-
                                                                                           different foster homes and was separated from
tion with full responsibility for health care, juggling work and family, and meeting
                                                                                           her siblings with whom she “barely spent time.”
its own needs; class and race barriers; the absence of an organized family constitu-       She reports spending most of her life “feeling
ency to advocate on family issues; the lack of a coherent, tangible family message         unwanted and afraid of who I would become
that resonates with the public; turf-driven constituencies that focus on single issues     in the future.” Erika describes herself as having
rather than the larger context of families’ needs; permission to blame others, par-        social and educational skills that “weren’t too
ticularly the poor and single mothers, for social and economic downturns; and a            good,” and having been “robbed of my child-
                                                                                           hood” and “robbed of ever having a bond with
lack of attention to prevention. Research and policy, however, can be merged suc-
                                                                                           my sister and brother.” Erika’s life changed at
cessfully when several key ingredients are in place: values, a clear context, sufficient
                                                                                           the age of 21 when her daughter, Saria, was
time to embrace and implement change, public will, media support, and data.                born. Erika says that Saria is the best thing that
     Whether research is bio-medical or social science, and whether quantitative or        has ever happened to her and she is striving to
qualitative in nature, it can provide evidence to drive the development of policy and      give her child the life that she never had but
practice. In order for research to do so effectively, it must focus on all children and    always wanted. Among her fondest memories
recognize the context in which they live. It must be multidisciplinary and incorpo-        are the positive experiences she had while in the
                                                                                           care of Casey Family Services: getting together
rate many different research approaches. Research findings must be translated in
                                                                                           with other children during the holidays, joining
ways that are useful to policymakers. Finally, it is essential that parents and youth
                                                                                           with others in fun activities, and camping.
be engaged in the planning for, and assessing of, research and policy.




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy                                                          
Improving the Well-Being of Our Children



                                         Early Childhood Development and Education
                                               The importance of good-quality programs that enhance early childhood de-
                                          velopment and education has been recognized both nationally and in Connecticut.
                                          As Shelley Geballe of Connecticut Voices for Children stated in her introductory
                                          remarks to this session: “There is in Connecticut … a re-emerging sense of urgency
                                          about the need to create a high-quality and affordable system of early care and
                                          education that not only promotes the health and safety of our youngest residents,
                                          but prepares them socially and educationally for kindergarten.” Lynn Kagan of
                                          Columbia University and Yale University clearly stated the goal: “There is a social
                                          imperative to build a high-quality system, not to simply fund individual programs,
                                          but to build the programs and infrastructure that support quality.”
                                               Research has made significant contributions to the understanding of what con-
                                          stitutes quality in early childhood development and education. Rigorous studies
                                          have yielded consonant and compelling results that have demonstrated that invest-
                                          ments in high-quality early care and education can result in positive outcomes for
                                          children and can save costs. They also have revealed significant problems in the cur-
                                          rent provision of these services.
                                         • Studies suggest that 0 percent of children served through early intervention
                                            programs located at day-care centers would have experienced serious behavior
“We have learned in talking to teen         problems later in life or required special education if they had not received
 parents that day care is probably the
                                            early intervention.
 number one barrier that prevents them
                                         • Factors such as teacher training, mentoring, and cultural programs have an im-
 from finishing school.”
                                            portant impact on the quality of early care and education.
Barbara Edinberg, Bridgeport Child       • Teachers with ba degrees generally provide a higher quality of early care.
Advocacy Coalition                       • States with limited regulations for early care and education tend to have lower
                                            quality programs.
                                         • Early care and education staff have the highest turnover rate of any workers
                                            who care for young children. Low pay is an important factor in the high rates
                                            of staff turnover.
                                         • A 1995 study found that in Connecticut, only 1 percent of all children in early
                                            care and education programs were receiving high-quality care; 8 percent were re-
                                            ceiving care that was, at best, mediocre. The results for infants and toddlers were
                                            even poorer: 0 percent of the programs were low quality or injurious to children.




8                                                                   Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
    The research demonstrates that two ingredients are necessary for quality early          Margie Powell
childhood care and education: adequate financing and government oversight. High-                 Margie is the mother of -year-old Anna.
quality systems are characterized by an infrastructure that supports quality teachers       It took 15 months for Margie to find a space in
                                                                                            a day-care center for her child so that she could
and quality teaching (Connecticut Charts-A-Course, the statewide professional de-
                                                                                            return to graduate school and obtain her msw.
velopment system for early care and education and program improvement, is exem-
                                                                                            Anna had difficulty feeding herself and commu-
plary in this regard); stringent regulations; sound data and a quality accountability       nicating with others. Margie and her husband
program; parent engagement; and the public will to ensure that young children               could not convince the various providers with
receive quality care.                                                                       whom they consulted to assess Anna. One day
    The policy environment surrounding early childhood development and educa-               at day care, Anna had a seizure. A neurologist
tion programs is one, as pointed out by Helen Blank of the National Women’s Law             determined that she had been having petit mal
                                                                                            seizures, which explained her pronounced lan-
Center, in which “there is a deep-seated feeling that child care is a parental, not a
                                                                                            guage delays. Because of this diagnosis, Margie
public, responsibility. As a result, states are building their systems piecemeal.” State
                                                                                            was at last able to enroll Anna in Birth to Three
systems of early care and education are governed by widely varying licensing stan-          services, but Anna already was 2 and a half
dards and generally do not adequately address the needs of children or the needs of         years old. The program identified gross and
families who work. Programs, for example, often are part-day and do not operate             fine motor skill issues which could have been
year-round. Very few parents who need assistance receive help in paying for early           addressed much earlier if Anna had been able
care and education. A recent study by the National Women’s Law Center revealed              to enroll at a younger age. When Anna turned
                                                                                            , she transitioned to her school’s special educa-
that between 2001 and 200, changes in state policies resulted in fewer families
                                                                                            tion system. The school took the position that
being eligible for child care and the imposition of higher copayments for parents
                                                                                            her speech was “still emerging” and provided
who received child-care assistance. In Connecticut, for example, the child-care sub-        only sporadic “enhancement services.” When
sidy is now  percent less than the actual subsidy in 2002, not taking inflation into      Anna turned 5, Margie enrolled her in private
account. Similarly, families are not being well served by federally funded child-care       school, but it became clear that Anna was not
programs: federal child-care assistance reaches only one in seven eligible children.        ready for school. Her behavior escalated into
    The National Women’s Law Center’s study also revealed that child-care provid-           bedwetting, kicking, and biting. Margie asked
                                                                                            for an independent evaluator but could not
ers have experienced significant reductions in the rates that they receive, and that in
                                                                                            cover the cost ($5,000) and insurance did not
the majority of states, rates do not reflect actual costs of providing care. In the wake
                                                                                            cover this service. Finally, Margie took Anna to
of funding cuts, many child-care programs have been forced to close their doors and         a Yale center for evaluation and it was only then
others are on the brink of bankruptcy. In Connecticut, Care for Kids offers child-care      that Margie was able to work with professionals
subsidies to low-income working families. Because of state budget cuts, however,            on Anna’s disabilities and develop an appropri-
the program has been closed to new families. As Barbara Edinberg of the Bridgeport          ate plan for her. Anna, at last, was enrolled in
Child Advocacy Coalition pointed out, “What this means is that you don’t have the           an inclusion classroom and received speech and
                                                                                            occupational therapy. At age , Anna now loves
money to pay for child care and the child-care center doesn’t have the revenue.” There
                                                                                            going to school and is “doing beautifully.”
are day-care centers in Connecticut that are experiencing deficits in the range of $5,000
to $10,000 per child because of inadequate resources to cover basic operating expenses.




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy                                                          9
Improving the Well-Being of Our Children


                                               Early Childhood Development and Education,
                                               continued
Jasmine Langley                                         The policy debate in the arena of early childhood development and education
       Jasmine is 18 years old and a mother of a   has focused primarily on pre-kindergarten programs, many of which shortchange
 2 year old. She attends high school in New        children and their working parents. The focus needs to be on these programs, but
 Haven and works part-time as a mentor for
                                                   attention also must be given to developing and supporting strategies for serving
 younger minority children. Her daughter
                                                   infants and toddlers. Early Head Start reaches only three percent of eligible chil-
 attends a school-based, accredited day-care
 program, Elizabeth Cellotto Day Care, that
                                                   dren and states have not moved forward to fill this service gap. Despite the results
 is provided free of charge. The program is ex-    achieved by the family support movement and home-visiting programs, very young
 tremely supportive, providing transportation      children continue to have very low visibility at the federal level.
 and emotional support for parents and ensuring         In synthesizing the contributions of research and the realities of the current
 that children receive up-to-date immuniza-        policy environment, George Coleman of the Connecticut Department of Education
 tions. Jasmine says that without this program,
                                                   pointed out that “preschool is not a panacea. Preschool is very important in terms
“I would definitely not be in school because of
                                                   of leveling opportunities, in terms of making better futures for children, but it is
 babysitting problems.” Jasmine’s daughter has
 attended the program since she was  months
                                                   not sufficient in itself.” Systems that provide preschool education and systems that
 old and is thriving. At age 2, she can count to   enable parents to work must come together. A viable, coherent system is one that
 10 and say her abc s. She has a good relation-    involves all children in preschool, offers affordable services, provides public funding
 ship with other children and her teachers.        for child care, and ensures quality teacher training.
 Jasmine says, “they care about my baby and             The question is how to move the country toward a commitment to a broad vi-
 my baby cares about them” and “because my
                                                   sion of early childhood development and education. Though the case for the impor-
 daughter is comfortable, I’m comfortable.”
                                                   tance of these programs is being made, these programs continue to be only partially
 She worries, however, about the future. She
 has been accepted into a college program but
                                                   funded. It may be possible to build a more powerful argument for these programs
 says, “I can’t find high-quality day care without through an emphasis on the country’s intellectual capacity in a world of global com-
 having to pay a high amount of money. I don’t     petitiveness. This issue is one of concern to legislators. Equally critical is the build-
 know how this college thing is going to work      ing of public will, particularly through engaging the public in the budget process.
 out for me.”                                           There has not been an ongoing commitment to federally supported research on
                                                   early childhood development and education. When Head Start was first implement-
                                                   ed, there was federal support for research that led to a broad base of knowledge and
                                                   generated public support that made it difficult to de-fund the program. It is essen-
                                                   tial that a commitment be made to ongoing studies that document the characteris-
                                                   tics of good-quality child care and pre-kindergarten programs and that demonstrate
                                                   the cost savings associated with these programs. As an example of how research
                                                   can impact policy, a 1995 study that demonstrated the relationship between North
                                                   Carolina’s limited child-care regulations and the state’s poor quality programs led
                                                   the state to develop a systematic approach to improve state child-care regulations.




10                                                                         Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
Improving the Well-Being of Our Children: Closing the Gap between Research and Policy   11
Improving the Well-Being of Our Children



                                                     Youth Transitioning From Foster Care
Sharnita Newman                                           Adolescence is a time of normative developmental challenges for all youth but
      Sharnita entered foster care at the age of    may be particularly challenging for youth in foster care. As pointed out by Ben
and was transferred to Casey Family Services at      Kerman, research director, Casey Family Services, adolescence “is a particularly
the age of 11. Her mother was addicted to alco-
                                                     trying time for young people growing up in the child welfare system. They have a
hol and drugs and remains addicted to this day.
                                                     legacy of trauma that is superimposed on the other normative developmental transi-
Sharnita entered care after her mother abused
her. Her sister entered care later, and, prior
                                                     tions, whether they have been abused or neglected.”
to coming to Casey, she and Sharnita did not              Research has shown that youth aging out of foster care—who nationally num-
live together or visit with one another. Once        ber about 20,000 each year—often experience particularly troubling outcomes. In
in Casey’s care, the girls were placed together.     addition to the youth who age out of foster care at age 18 or older, some exit before
They lived together until Sharnita “aged out” of     age 18 and then re-enter care. For both groups of youth, there are important re-
 foster care and they had the same social worker
                                                     search questions about the quality of services and supports that they receive after
throughout their stays in care. Sharnita’s his-
                                                     they leave foster care.
tory before coming into Casey’s care involved
many placements, including one move in which
                                                          Research and evaluation play extremely important roles in providing information
 she was simply told by a social worker to place     as to whether programs and polices are achieving desired goals and whether policies
all of her personal belongings in a garbage bag      support the development of specific programs and practices that are most effective
and “get in the car.” After graduating from high     in achieving those goals. Research and evaluation also play critical roles in clarifying
 school, Sharnita went to college and became         what is not yet understood. Through research and evaluation, we can continue to
pregnant at the age of 19. Sharnita reports,
                                                     monitor performance and identify emerging child, family, and systems needs.
“everything once again became a struggle for
                                                          Research regarding the experiences of youth transitioning from foster care has
me…and I’ve pretty much been struggling since
then.” Nonetheless, Sharnita is now at Southern
                                                     developed along several lines. One important line of research has used adminis-
Connecticut State University working on a bsw        trative data, largely flowing from the federal Adoption and Foster Care Analysis
degree and she also is working full time. She is     and Reporting System (afcars). Administrative data permit an assessment of the
married and has two daughters, ages 12 and .        growth or shrinkage in the population of foster youth as a result of policy changes,
                                                     practice shifts, and other influences. Another line of research has taken the form
                                                     of outcome studies which have documented the clear disadvantages that youth in
                                                     foster care face when compared to their peers who are not in foster care. Through
                                                     longitudinal studies, it has been possible to develop a strong knowledge base regard-
                                                     ing the needs of youth and the risk and protective factors that need to be considered
                                                     in developing programs to serve these youth. It has become clear, for example, that
                                                     youth who have the benefit of permanent family connections and pre-discharge em-
                                                     ployment experiences fare better once they leave care. Longitudinal studies continue
                                                     to be needed to enhance the understanding of risk and protective factors and for-




12                                                                             Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
tunately, studies of this nature are underway. A third line of research has taken the
form of program-specific evaluations. These studies have demonstrated inconsisten-
cies in the quality of programs designed to prepare youth for adulthood. This work
has demonstrated that some programs are succeeding in achieving shorter-term
outcomes such as work readiness, but not much is understood about the long-term
impact of these programs. Program evaluation is critical to enrich the understand-
ing of which programs work, whom they work for, and what is needed to support
their success.
     In order for research to fully inform policy, it is essential that a mechanism be
developed to organize coherently the many findings from research and evaluation.
As Gary Stangler of the Jim Casey Youth Opportunities Initiative noted, “It is less
a matter of program research than it is of synthesizing and aggregating the research
because policies are broader than programs.” It is this type of bridging that is neces-
sary for research to truly inform policy, particularly with regard to systems issues
that require a broad response, such as the disproportionate representation of chil-
dren of color in foster care.
     The Pew Commission on Children in Foster Care focused on key policy areas
in which aggregated research findings are needed to develop good policy. There is,
for example, very little understanding of how the financing of foster care, one of the
Commission’s areas of focus, relates to the research on the well-being of children.
There is little empirical support for the Commission’s recommendations regard-
ing the restructuring of Title IV-E with regard to funding child welfare agencies.
Research, however, strongly supports the Commission’s recommendation regard-
ing subsidized guardianship. With regard to permanence for older children and
youth (an area that was not directly addressed by the Commission but which was
key to the Commission’s discussions), there is virtually no research that examines
permanence and permanent connections for youth despite research that indicates
that for emancipated youth, the most important predictor of positive outcomes is
the presence of a committed adult in the youth’s life. Would permanence for youth
be more broadly achieved if fiscal incentives were developed for states that achieve
family permanence for youth in a variety of ways? Research is needed on the impact
of incentives at both the systems level and at the individual level. One approach




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy     1
Improving the Well-Being of Our Children


                     Youth Transitioning From Foster Care,
                     continued
                     that is being pursued by the Jim Casey Youth Opportunities Initiative is provid-
                     ing matched savings accounts for youth. It is expected that this approach will help
                     change individual youth behaviors through fiscal incentives. The approach also pro-
                     motes the use of youth advisory boards and youth leadership training as nonfiscal
                     incentives that may impact outcomes for youth.
                          State legislatures are critical bodies in developing policy that impact youth who
                     transition from foster care. Interestingly, fewer than one percent of legislators are
                     social workers, highlighting the importance of presenting information to legislators
                     in a way that will be meaningful to them. As noted by Maine State Senator Michael
                     Brennan, “anecdote always trumps research” for legislators. Consequently, although
                     research provides a common ground for discussion with legislators, “it’s the relation-
                     ship that makes the difference.” Social workers are skilled in developing relation-
                     ships and need to utilize those skills in their advocacy efforts. Youth involvement
                     is also a critical element. Through legislative leadership and the advocacy of youth
                     themselves, for example, Maine became the third state in the country to provide a
                     tuition waiver for youth in foster care to the state university and community college
                     system. As a result, the number of youth in care going on to higher education in the
                     state doubled in one year.
                          Research is needed on a range of other issues affecting transitioning youth. In
                     Connecticut, for example, there is generous access to college scholarships. The issue,
                     however, is the readiness of youth in foster care to transition to college. As Janice
                     Gruendel of the Connecticut Governor’s Office noted, there are also issues of work-
                     force development and the need to “take a work and learning perspective coupled
                     with clinical supports” for youth.




1                                             Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
Achieving Universal Health Coverage
for Children
      Dr. Myron Genel of the Yale School of Medicine opened this panel, noting            “Anna (my daughter) is where she is
 that: “Nothing better illustrates the gap between research and public policy than         because my husband and I fought hard
 that stark fact that despite all of our efforts, up to 10 million children lack health    for the assessment and services she
                                                                                           needed. Imagine all the parents and
 insurance in this country.” There never has been a national commitment to provide
                                                                                           children who never get these services
 universal health coverage for children in the United States, and the data reflect this    and they don’t know how to get them.
 lack of commitment:                                                                       No child should have to go through what
• Currently, 11. percent of all children in the United States are uninsured.              my child went through. No parent should
• The number and proportion of uninsured children have increased in nine of the            go through what I went through.”
   past 12 years.
• Poor children are at the greatest risk of being uninsured. One quarter of children      Margie Powell, mother of 6-year-old Anna
   living in families with incomes less than 100 percent of the federal poverty level
   are uninsured, compared to six percent of children in families with incomes great-
   er than 500 percent of the federal poverty level.
• Noncitizen children are at greater risk of being uninsured:  percent of nonciti-
   zen children, compared to 1 percent of citizen children, lack health insurance.
• Latinos are the most uninsured racial and ethic group of children in the United
   States. One-fifth (21 percent) of Latino children (.1 million) are uninsured com-
   pared to seven percent of white children, 1 percent of African-American children,
   and 12 percent of Asian/Pacific Islander children.
• Among poor uninsured children, the largest number is Latino (1.1 million) com-
   pared to smaller numbers of white (2,000), African American (55,000), and
   Asian/Pacific Islander (0,000) children.

    Half of the uninsured children in this country are eligible for public pro-
grams, namely for Medicaid or the State Children’s Health Insurance Programs
(schip). Nonetheless, states used less than 20 percent of the $2 billion allocated by
Congress for schip in the first five years of the program.
    There are many research issues regarding the insuring of uninsured children.
One key issue is that, although Medicaid and schip outreach and enrollment
programs exist, few have been evaluated formally and there are few randomized
control trials comparing the effectiveness of various outreach and enrollment pro-
grams. Glenn Flores of the Medical College of Wisconsin and Children’s Hospital
of Wisconsin reported on one such study: a randomized trial to evaluate whether
community-based case managers were more effective than traditional schip and




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy                                           15
Improving the Well-Being of Our Children


                     Achieving Universal Health Coverage
                     for Children, continued
                     Medicaid outreach and enrollment methods (for example, direct mailings, press
                     releases, newspaper inserts, health fairs, and door-to-door canvassing) in insuring
                     uninsured children. The study utilized trained, bilingual Latino staff who provided
                     Latino families with information and assistance on eligibility for health insurance
                     programs. They also served as family advocates, that is, liaisons between families
                     and the Medicaid and schip programs. A large percentage of the Latino families in
                     the selected communities were poor and single-parent households, and many par-
                     ents were noncitizens and had not completed high school. The study found several
                     positive effects of community-based case managers:
                    • A significantly higher proportion of the families with case management obtained
                       health insurance compared to the families reached through traditional methods:
                       9 percent versus 5 percent.
                    • A substantially higher proportion of the families with case management was in-
                       sured continuously: 8 percent compared to 0 percent of the families reached
                       through traditional methods.
                    • There was a much lower rate of loss of insurance among the families with case
                       management: 18 percent compared to 2 percent among families reached through
                       traditional means.
                    • Being uninsured continuously was much lower among families with case manage-
                       ment:  percent compared to  percent of the families in the traditional outreach
                       group.
                    • The mean time to obtain insurance was much shorter for families with case
                       management: 8.5 days compared to 15 days for the families in the traditional
                       outreach group.
                    • Families in the case management group were more satisfied with the process: 92
                       percent reported being “very satisfied” or “satisfied,” compared to 0 percent of
                       the families in the traditional outreach group.




1                                            Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
    Based on these findings, the researchers concluded that the case management
program could serve as a national model for insuring uninsured children given the
rigorous scientific approach utilized in this evaluation.
    Three critical goals must guide any public policy strategy that aims to ensure
children’s access to health care:
    Increasing enrollment in insurance programs for children. As Paul Dworkin of the
University of Connecticut School of Medicine stated, “Public policy must acknowl-
edge the imperative that all children have adequate health coverage through the
public or private sectors, and gaps in coverage must be eliminated.”
    Improving the effectiveness of care to promote children’s healthy development. High-
quality care is essential to promoting the best outcomes. Research has demonstrated
that children and their families require comprehensive services; effective outreach;
culturally-competent care coordination and case management; and effective col-
laboration with community-based organizations and agencies. There are particular
barriers to both pediatric and mental health care coordination and case manage-
ment when children are served through managed care organizations.
    Strengthening the capacity to care for children with special health care needs.
Children with special health care needs represent 15 to 20 percent of the pediatric
population and are disproportionately poor and disadvantaged because of exposure
to adverse health influences. Children with chronic needs require child health care
providers who serve as comprehensive medical homes, that is, provide accessible,
family-centered, coordinated, comprehensive, continuous, compassionate, and
culturally-effective care. There are several initiatives in Connecticut to strengthen
health practices as comprehensive medical homes for children.




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy      1
Improving the Well-Being of Our Children


                     Achieving Universal Health Coverage
                     for Children, continued
                         Three key questions must be answered as the synergy of research and policy is
                     considered in relation to universal health coverage for children:
                   1. Do we have the right data? In the area of child health, the answer is, generally, yes.
                       Research demonstrates that children with health insurance have better outcomes,
                       more preventive care, and access to primary care. General and cost-benefit data
                       are needed, however, on the types of health care coverage programs that work
                       best, particularly for vulnerable populations. Even when we know what works, the
                       question is how to integrate the information into the health care system.
                   2. What factors impede and promote the ability to link child health research and
                       policy? Despite the volumes of research on child health and books on translating
                       research into practice, there is little in the literature on translating research into
                       policy. As Sally Cohen of the Yale School of Nursing stated, “There is the field of
                       the research on dissemination — figuring out how to disseminate research into
                       policy. And we really need more of that.”
                   . What might be the characteristics of child health research and policy or the link-
                       age between them that are different from the linkages in the other areas discussed
                       at this symposium? Everyone needs health care, whereas not everyone needs child
                       care or is connected with foster care. On the other hand, people may go a long
                       time before getting health care, whereas parents may need child care everyday.
                       In both health care and child care, there are two tiers: a “Cadillac” tier for those
                       who can afford quality care and a second tier for those who cannot. In both areas,
                       there are issues of access to affordable quality care. In health care, there is the ad-
                       vantage of pediatricians who often have access and influence with decision-makers.

                          The panel was asked to respond to the following hypothetical: If a philanthropy,
                     in partnership with others in New Haven, wanted to ensure that 90 percent of the
                     1,800 to 1,900 babies born in the city each year were ready to enter kindergarten
                     five years later, healthy, eager to learn, and ready for school success, what would
                     need to be done?




18                                              Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
 Panelists responded with the following:                                                     “I would put forward that we … need to
• Ensure that all children have health insurance.                                             engage parents and youth in planning
• Ensure that all children have a medical home.                                               for and assessing research and policies.
                                                                                              In the children’s mental health area
• Develop a good-quality program of home visitation for new parents.
                                                                                             … families have been engaged as
• Partner with parents, encouraging them to read to their children every night,               advisors as research studies have been
   starting at six months of age, and to have dinner with their children every night.         undertaken. I think it’s a very important
• Support parents in ensuring home safety.                                                    step as we look forward.”
• Support community-based resources in the positive roles that they play in promot-
   ing children’s development.                                                               MaryLee Allen, Children’s Defense Fund
• Have a mechanism for early identification of children who are at risk for adverse
   developmental and behavioral outcomes; identify the community-based programs
   that can meet these children’s needs; and build in outreach in a culturally-appro-
   priate, acceptable way that links children and families to these programs.
• Enroll children in high-quality child care, early intervention, and Head Start programs.




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy                                                 19
Improving the Well-Being of Our Children



                                         Cross-Cutting Themes
“We need to develop evidence in a             Several perspectives were brought to a consideration of the themes that cut
 robust way, but evidence is necessary    across the three areas of the symposium’s focus: early childhood development and
 but not sufficient to make change.       education, youth transitioning from foster care, and universal health coverage for
 Making change at the policy level is
                                          children. Elaine Zimmerman, executive director of the Connecticut Commission
 hard, but worth our personal effort.”
                                          on Children, focused on the obstacles to creating a synergy between research and
Dr. Alan Fleischman                       policy:
                                         • A historical view in this country of family as a private institution with full re-
                                            sponsibility for providing health care, juggling work and family, and meeting the
                                            family’s needs
                                         • Class and race biases that have perpetuated barriers to viewing shared needs with-
                                            in health and family policy
                                         • The lack of an organized family constituency to advocate on family issues
                                         • The lack of a coherent, tangible family message that resonates with the public
                                         • Turf-driven constituencies that focus on single issues rather than the larger
                                            context
                                         • Permission to project and blame others, particularly the poor and single mothers,
                                            for social and economic downturns
                                         • Lack of attention to prevention

                                          She offered the ingredients of a successful merging of research and policy:
                                         • Ethical values that provide a foundation for change
                                         • A clear context: a good idea at the right time
                                         • Sufficient time to embrace and implement change
                                         • Public will: a strong constituency
                                         • Media support
                                         • The research: Research needs to be ready to meet political needs.

                                             She emphasized that research must be accessible to policymakers, with findings
                                         ideally summarized in no more than four paragraphs; that research must be under-
                                         stood as a civic tool and designed in such a way that the public can access it; and
                                         that researchers must see themselves as part of the formula for change.




20                                                                  Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
       Dr. Alan Fleischman, National Children’s Study, National Institutes of Health,
  stated that research, whether bio-medical or social science, and whether quantitative
  or qualitative, results in evidence that can be accumulated and drive both the devel-
  opment of policy and changes in practice. In The Belmont Report,1 the United States
  developed for the first time a clear articulation of policy regarding the involvement
  of children in research. The report outlined the types of permissible research with
  children, including minimal risk research which generally characterizes social policy
  research and greater-than-minimal risk research with a prospect of direct benefit,
  which characterizes much medical research. He emphasized the critical need to in-
  volve children in research.
       Dr. Fleischman described the current efforts in planning and implementing the
  National Children’s Study as an important example of research with children. It
  will examine outcomes for children that are affected by environmental factors, in-
  cluding outcomes of pregnancy, the health of the newborn, the neurodevelopment
  and behavior of children throughout childhood and into adulthood, and issues of
  injury, asthma, and obesity. This study illustrates the complexity of the questions
  that research is attempting to answer.
           Although there are legislative solutions to the issues discussed in the sym-
  posium, Dr. Fleischman pointed out that there also are opportunities to go directly
                                                                                                            “It is important to always remember that
  from evidence to practice and from policy to practice.                                                     in addition to the data, in addition to
       Finally, MaryLee Allen of the Children’s Defense Fund summarized 11 key                               the numbers, in addition to the statistics,
  themes that had emerged throughout the symposium:                                                          we’re still talking about people, and we
1. There is a need to focus on all children and not “zero in” on one group. She said,                        are talking about their lives.”
   “Sometimes in policy, we get caught up in the intricacies of program and the pro-
    cess, and in that process, lose sight of the children. In research, sometimes the same                  Lamond Daniels, Community Liaison,
    thing happens.” The question is, “How do we ensure that all children learn, all                         Casey Family Services
    children are healthy, and all children who need to enter the foster care system have
    the experience that is so important in improving their outcomes for the future?”
2. It is critical to recognize the context in which children live and the context in
    which policies are implemented.




  1
      The report, Protection of Human Subjects. The Belmont Report: Ethical Principles and Guidelines for
  the Protection of Human Subjects of Research, can be accessed at:
  http://www.cdc.gov/od/ads/ethcodes/belm-eng.pdf

  Improving the Well-Being of Our Children: Closing the Gap between Research and Policy                                                                21
Improving the Well-Being of Our Children



                         Cross-Cutting Themes, continued
                    .   The gap needs to be closed between research and policy, as well as among research,
                         policy, and practice.
                    .   Research needs to be multidisciplinary.
                    5.   There is no single answer to closing the gap between research and policy. Different
                         types of research are needed: quantitative and qualitative, longitudinal, compari-
                         son designs, and research using administrative data.
                    .   Research needs to be used to support the development of systems, not simply the
                         development of programs.
                    .   Research needs to support responses to intergenerational or transgenerational
                         needs as well as the needs of all groups of children.
                    8.   Funding for quality research and data collection must be a part of all good policy.
                    9.   We must translate research into policies in ways that can be understood. At the
                         same time, however, we must ensure that policymakers do not simply embrace
                         one aspect of what is learned through the research and dismiss the rest.
                   10.   It is essential to engage parents and youth in the services that their children re-
                         ceive, in the decisions that are made, and in research and policy development.
                   11.   The best research is no substitute for adequate funding and resources.




22                                               Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
Acknowledgements
    Appreciation is expressed to the following organizations for their generous support
of Improving the Well-Being of Our Children: Closing the Gap between Research and Policy:

     Connecticut Health Foundation
     Friends of the Yale-New Haven Children’s Hospital
     Universal Health Care Foundation of Connecticut
     Yale University Institution for Social and Policy Studies
     Yale University School of Nursing

    We also extend great appreciation to the Connecticut Commission on Children
and the Edward Zigler Center in Child Development and Social Policy for serving as
advisors to the symposium.




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy       2
Improving the Well-Being of Our Children



                     Acknowledgements, continued
                          We wish to thank the remarkable individuals who served as presenters and who
                     facilitated the stimulating exchange of ideas. These individuals are listed on the fol-
                     lowing page. We also wish to thank a number of other individuals who contributed
                     significantly to the symposium:

                     Roye Anastasio-Bourke                              Jonathan Moser
                     Public Affairs Manager,                            Program Coordinator, Yale University’s
                     Casey Family Services                              Interdisciplinary Center for Bioethics

                     Lili Beit                                          Lee Mullane
                     Graduate Student, Harvard School of                Director of Communications,
                     Public Health                                      Casey Family Services

                    Sandra Bishop-Josef                                 Carol Pollard
                    Assistant Director, The Edward Zigler               Associate Director, Yale University’s
                    Center in Child Development and Social              Interdisciplinary Center for Bioethics
                    Policy, Yale University
                                                                        Autumn Ridenour
                     Jane Edelstein                                     Program Coordinator, Yale University’s
                     Proceedings Transcriber                            Interdisciplinary Center for Bioethics

                    Sarah Greenblatt                                    Carol Ripple
                    Director, Casey Center for Effective Child          Research Consultant,
                    Welfare Practice, Casey Family Services             the Annie E. Casey Foundation

                    Julius Landwirth
                    Associate Director, Yale University’s
                    Interdisciplinary Center for Bioethics

                     Zachary Lawrence
                     Researcher and Editor, Yale University’s
                     Interdisciplinary Center for Bioethics




2                                              Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
Presenters
MaryLee Allen                                           Paul Dworkin
Director, Child Welfare and Mental                      Chair of Pediatrics, University of
Health Division, Children’s Defense Fund                Connecticut School of Medicine;
                                                        Physician-in-Chief, Connecticut
Helen Blank                                             Children’s Medical Center
Director of Leadership and Public Policy,
National Women’s Law Center                             Barbara Edinberg
                                                        Assistant Director, Bridgeport Child
Michael Brennan                                         Advocacy Coalition
State Senator, Maine; Chair of the Senate
Health and Human Resources Committee;                   Alan Fleischman
Senate Majority Leader                                  Senior Advisor, New York Academy
                                                        of Medicine; Ethics Advisor, National
Erika Castillo                                          Children’s Study, National Institutes
Former foster youth with Casey Family                   of Health
Services; Mother; Home Health Aide
                                                        Glenn Flores
Sally Cohen                                             Director, Center for the Advancement of
Associate Professor, Yale University School             Underserved Children; Associate Professor
of Nursing; Director, Center for Health                 of Pediatrics, Epidemiology and Health
Policy and Ethics                                       Policy, Medical College of Wisconsin;
                                                        Director of Community Outcomes,
George Coleman                                          Children’s Hospital of Wisconsin
Interim Commissioner, Connecticut
Department of Education                                 Shelley Geballe
                                                        President, Connecticut Voices for Children
Lamond Daniels
Community Liaison,
Casey Family Services




Improving the Well-Being of Our Children: Closing the Gap between Research and Policy                25
Improving the Well-Being of Our Children



                     Presenters, continued
                     Myron Genel                                        Frances Padilla
                     Professor Emeritus, Child Health Research          Director of Programs, Universal Health
                     Center, Department of Pediatrics, Yale             Care Foundation of Connecticut, Inc.
                     School of Medicine
                                                                        Laura Lee Simon
                     Janice Gruendel                                    Chair Emerita, Connecticut General
                     Senior Advisor for Early Childhood,                Assembly Commission on Children
                     Governor’s Office, State of Connecticut
                                                                        Gary Stangler
                    Sharon Lynn Kagan                                   Executive Director, Jim Casey Youth
                    Virginia and Leonard Marx Professor                 Opportunities Initiative, Inc.
                    of Early Childhood and Family Policy,
                    Teacher’s College at Columbia University;           Raymond Torres
                    Professor Adjunct, Yale Child Study Center          Executive Director, Casey Family Services

                     Ben Kerman                                         Edward Zigler
                     Director of Research, Casey Family Services        Director, Emeritus, The Edward Zigler
                                                                        Center in Child Development and Social
                     Jasmine Langley                                    Policy; Sterling Professor of Psychology,
                     Board member of Elizabeth Celotto Child            Emeritus, Yale University
                     Care Center; Mother
                                                                        Elaine Zimmerman
                     Sania Metzger                                      Executive Director, Connecticut
                     Director of Policy, Casey Family Services          Commission on Children

                     Sharnita Newman
                     Former foster youth with Casey Family
                     Services; Student at Southern Connecticut
                     State University; Mother




2                                              Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services
    casey family services is the direct service agency of the Annie E. Casey
Foundation. Founded in 19, Casey Family Services is headquartered in New
Haven, Connecticut, with operating divisions in Connecticut, Maine, Maryland,
Massachusetts, New Hampshire, Rhode Island, and Vermont. It is a fully licensed
and accredited nonprofit child welfare agency providing foster care, as well as post-
adoption, preservation, and reunification services for families. In addition, Casey
Family Services has established a number of specialized and innovative commu-
nity-based programs to help strengthen families and enable parents to provide the
healthy, nurturing environments their children need to grow and thrive. The Annie
E. Casey Foundation is a private foundation dedicated to promoting public policies,
human service reform, and innovative programs that meet the needs of disadvan-
taged children and families in the United States.



     yale's interdisciplinary center for bioethics focuses on the
general development of the discipline of bioethics and sharing the University’s com-
mitment to serve the local, national, and international communities in addressing
bioethical questions of urgent importance to all humankind. The Center’s Executive
Committee has operated with the conviction that Yale offers a unique opportunity
for pursuing the questions of bioethics. It is distinctive among comparable universi-
ties in that it encompasses professional schools of Medicine, Nursing, Law, Divinity,
Forestry & Environmental Studies, and Management, as well as departments of
Epidemiology and Public Health, Philosophy, Religious Studies, natural and social
sciences, and the humanities.
Improving the Well-Being of Our Children




127 Church Street
New Haven, CT 06510
Phone:    203.401.6900
Fax:      203.401.6901
www.caseyfamilyservices.org




The Annie E. Casey Foundation
701 St. Paul Street
Baltimore, MD 21202
Phone:    410.547.6600
Fax:      410.547.6624
www.aecf.org




Yale University’s Interdisciplinary Center for Bioethics
For more information, visit www.yale.edu/bioethics




28                                                         Yale University’s Interdisciplinary Center for Bioethics and Casey Family Services

				
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