Online CEUs
Health Service Disparities: Access, Quality, and Diversity
CHAIR: Spero M. Manson, Ph.D., University of Colorado.
ACCESS, BARRIERS, and QUALITY
Pathways into, through, and out of service systems are issues of critical importance when addressing access to care, adequacy or appropriateness of care, as well as quality. This panel addressed these issues examining the impact of race, ethnicity, and cultural attitudes.
David T. Takeuchi, Ph.D.,
Indiana University
Dr. Takeuchi discussed the importance of race as a separate and independent factor in children's mental health status, as well as access to and quality of care. Over the past two decades, it has been common to advocate for a more universal approach to resolving the disparities found among racial groups. Despite one's position regarding whether race has or has not declined in significance in American society, an advocacy for policies that attempt to reduce socio-economic status (SES) differentials is seen as a more effective public policy strategy to gain acceptance among all racial groups and, equally important, policy makers.
While this approach is popular and well meaning, it tends to ignore an evolving body of research that finds race to have a strong effect on mental health variables, independent of SES. For example, a recent study assessing health outcomes for 50 states found a strong association between racial composition and health. The greater the minority composition, the poorer the child health profiles. When race was included in analytical models, income and equality did not have a significant association with child health outcomes. Another significant variable linked to improved child health outcomes was the willingness of states to fund social welfare programs. These analyses suggest that simply focusing on income inequality will not resolve racism and its consequences. Racism is a continuous problem and creates a social environment characterized by alienation, frustration, powerlessness, stress and demoralization, all of which can have pernicious consequences on mental health. There are programs that are trying to make health systems more equitable through education, and attempting to reduce stereotypes and prejudice by providing information about different racial groups. Research indicates, however, that individuals who have preexisting racist beliefs may actually have these beliefs reinforced through such educational programs.
In order to address ethnic and racial inequities in children's mental healthcare, racism must be viewed in a broader context, focusing on institutional racism and the racial hierarchy of society and its systems, including healthcare. It is unclear how to do this, but two examples to consider would be Native Americans' building casinos to address economic inequity; and Native Hawaiians' current effort to achieve sovereignty. These are two natural situations in which it can be seen how health outcomes will be influenced.
Margarita Alegría, Ph.D.,
University of Puerto Rico
Dr. Alegría discussed challenges in advancing equity in mental healthcare for children of color. She presented three arguments for increased focus on racial and ethnic differences. First, race, ethnicity and culture of children play a major role in shaping the care provided to them by health institutions. Racial, ethnic and cultural differences influence the expression and identification of the need for services. Studies have shown ethnic and racial differences in youths' self-reports of problem behaviors, caregivers' value judgments of what is normative behavior, and caregiver expectations of the child. Ethnic and racial bias in who gets identified, referred and treated within certain institutions has also been documented. For example, African American youth are more frequently referred for conduct problems to corrections rather than psychiatric hospitals, even with lower or equal measures of aggressive behavior. Quality of care is also impacted. For example, ADHD is less often treated by medications in minority groups than in white populations. There is also increased probability of misdiagnoses among minority individuals, affecting subsequent care.
Second, there are challenges in identifying the mechanisms by which ethnicity, race, and culture account for disparities in behavioral and emotional problems and service delivery. Understanding these mechanisms has important implications for how to intervene correctly. Factors that mediate such challenges may be related to lack of early detection by providers and parents; untrained and culturally insensitive providers; and lack of parent and provider knowledge of efficacious treatments. For example, Latino youths have the highest rate of suicide, yet they are less likely to be identified by their caregivers as having problems. Disparities in services may be due to different barriers such as insurance status and settings where mental healthcare is delivered. Minority children tend to receive mental health services through the juvenile justice and welfare systems more often than through schools or special settings.
Third, efforts to address racial and ethnic disparities in mental health and service delivery are constrained by profound socio-environmental, institutional, and market forces. For example, managed care, by targeting medical necessity, may be constrained in obtaining the complexity of funding streams that are necessary to service minority children in the schools, juvenile justice settings or welfare agencies. Expansion of Medicaid eligibility for near poor families may not prove sufficient to increase mental health service usage, if it is not tied to increased provider availability and provider payment incentives to treat minority populations within depressed inner-city communities. Thus, a critical analysis of how residential, institutional, and market policies may create disparities is needed, and more importantly, how these policies are implemented in ways that result in disparities. There is a need to address these disparities by moving beyond the healthcare sector, examining neighborhoods where minority children live (areas of economic disadvantage, concentration of violence in certain areas), addressing the institutions with which minority children interact (i.e., the referral bias in the various systems), and addressing the role of managed care and the lack of culturally competent providers in the various systems.
Suggestions to address these disparities include: (1) Ensure that efforts focus not only on equalizing access to treatment, but also on equalizing outcomes of care; (2) Aggressively monitor institutional progress towards an equitable and compassionate system of mental healthcare for children of color; and (3) Move beyond policy interventions in the healthcare system to more socio-educational approaches, where government agencies are not agents of control but agents of support.
Kenneth B. Wells, M.D., M.P.H.,
UCLA/RAND
Dr. Wells presented new preliminary data from three national surveys on access to specialty mental healthcare. The findings demonstrated high levels of unmet need for specialty care for children and adolescents and substantial ethnic disparities in access to such care. Detailed findings will be presented in a forthcoming article. Dr. Wells also drew attention to key issues in formulating public policy to address unmet need for child services. One set of issues relates to children in the public sector, where differences within and across states in implementation of policies to cover uninsured children result in children with varying degrees of vulnerability to unmet need for mental healthcare. Policies that guarantee coverage for uninsured children across diverse populations and geographic areas are needed to address this problem. Another set of issues applies to the private sector, where there has been much debate about the feasibility of implementing parity for mental health and physical health services for both children and adults; yet prior studies suggest that children have more to gain from parity, as they tend to be high utilizers if they use services and more quickly reach plan limits on coverage (Sturm, 1997). Thus achieving parity of coverage in the private sector may be especially important for addressing the unmet need for child mental health services. Yet, Dr. Wells indicated that the meaning of parity is changing under managed care, as the defined benefit does not necessarily directly correspond to the level of care provided under management policies (Burnam and Escarce,1999). Finally, Dr. Wells provided an example of the promise of quality improvement for mental disorders for adults, Partners in Care; in that study, depressed primary care patients from clinics using quality improvement programs had better one-year clinical outcomes and retention in employment than similar patients in clinics without quality improvement programs (Wells, et. al., 2000). These kinds of studies should be developed for children and adolescents with major mental disorders, as we develop practice-based solutions across public and private sectors to address unmet mental healthcare needs of diverse child and adolescent populations.
Suggestions for future research include: (1) Develop access and mental health quality of care indicators for children and adolescents; (2) Profile unmet need for under- and uninsured subgroups in particular areas, in light of disparity in coverage and implementation across federal and state programs; and (3) Monitor access and quality of care for children and adolescents nationally. Suggestions for policy changes include: (1) For the uninsured, replace existing programs or fill the diverse gaps in federal and state policies; (2) For the privately insured, start with parity of mental health coverage with medical conditions, and enforce tougher mandates for implementation. In addition, the management and quality under parity needs to be evaluated; and (3) For the publicly insured, implement quality improvement, and reduce delays and the financial barriers to mental healthcare.
REACHING OUT TO AND ENGAGING FAMILIES
This panel discussed the challenges affecting access to and coordination of mental healthcare for children and families, including the lack of availability of non-traditional services. One critical question addressed how to better engage families in evidence-based services and treatments.
Barbara J. Friesen, Ph.D.,
Portland State University
Dr. Friesen argued that effective mental health services require cultural competence, full family participation and appropriate services and supports. Family support and participation can provide benefits, including reduced need for inpatient treatment, shorter length of inpatient stay, better service coordination, increased likelihood that a child will return home following out-of-home placement, and increased caregiver satisfaction. When families were involved in the child welfare system, they were more likely to follow through with treatment and the caseworkers were more likely to provide appropriate care.
There are several significant barriers to family participation and effective treatment for children's psychiatric disorders. First, stigma attached to mental disorders results in families feeling at fault for their child's mental illness. Low-income families are most likely to receive disrespect from healthcare providers. Second, family and service providers lack information. Third, gaps in services are a major problem. Even when a family is armed with information about exactly what they are looking for, very often they cannot find it. Other practical, tangible barriers include cost; many families have gone bankrupt trying to care for their children. The most damaging policy is one in which parents need to give up custody in order to get services for their children. Distance can also be a barrier to care. Sometimes families must travel long distances to receive appropriate care for their child.
Suggestions for engaging families include: (1) Develop anti-stigma campaigns to educate the public and healthcare providers; (2) Train services providers in effective, family-centered treatment approaches; (3) Support family members and family organizations who can improve access to services through a variety of outreach and support roles; and (4) Evaluate these practices.
C. Veree’ Jenkins,
Family Involvement Coordinator, Family HOPE, West Palm Beach, Florida
Ms. Jenkins described her family's experience overcoming the ravages of the mental illness of her son, Joel. She called it the story of "J.O.E.L.: Joy Overcoming Everything Logical." She emphasized the importance of faith in dealing with a child's mental illness. Joel had a journey through mental illness, substance abuse, the juvenile justice system and early fatherhood. All along the way, no one ever asked the family their faith and what they believed in, said Ms. Jenkins. In a substance abuse treatment program, Joel had his bible taken from him, told it was a crutch preventing him from overcoming his substance abuse problems. But, Ms. Jenkins said, you need faith in God to make it through these systems; you put faith in the hands of the therapist managing your care and sometimes are let down. Finally, Joel went to the church where he found ‘wrap-around faith’ where they provided mentoring, counseling services 24 hours a day, seven days a week, helped him get a job, and get rid of his guns and provided other assistance. Ms. Jenkins encouraged consideration of faith-based organizations, which can provide safe havens, camps, music, art, and all sorts of activities that can be very helpful to a family in need. Joel is now drug, alcohol and cigarette free. He is a law-abiding citizen, married, a good parent, employed and owns his home. A recent graduate of the McCollough Seminary, he is Assistant Youth Pastor of his church. As a family, Joel, Ms. Jenkins and her husband work together to share their faith and hope with others.
Lynn Pedraza, Ed.S.,
Family Member
Ms. Pedraza described how her family, which includes biological, foster and adoptive children, encountered many challenges trying to navigate the multiple systems often involved in the care and treatment of children with mental disorders. So much of the mental health world operates from a deficit perspective requiring families to prove their needs, rather than strengths, to get services. Workers have coerced parents and threatened to take children away when families try to fight for appropriate services. Suggestions to engage families include: (1) Put mental health at the forefront of health policy decisions and research efforts; (2) Research should focus on the human side of mental health, the connections to others, trust, pleasure, joy and respect. In other words, examine what caring looks like and what happens when this caring is incorporated into mental health services; and (3) Researchers need to become involved with families and their children long enough and deeply enough to really understand the multiple factors that affect children and their families. Researchers need to listen to families.
DISCUSSANTS
Brenda Souto,
National Alliance for the Mentally Ill
Ms. Souto described her experiences as a parent of a child with several disorders. She has been her son's case manager for 20 years and has had good experiences with psychiatrists and psychologists in Maryland, a parity-enforced state. Trying to find good services was another problem. She cited a report, Families on the Brink, that NAMI released a year ago, summarizing the stigmatization of families who often are blamed for no-fault brain disorders. She said the most unfortunate result of the lack of access to mental healthcare is when the family is forced to relinquish custody of their ill child to the state in order to get needed mental health services.
Carl Bell, M.D.,
Community Mental Health Council, Chicago
Dr. Bell described the insufficient infrastructure in the community health system. Back in 1980, President Jimmy Carter pushed for a plan to increase the infrastructure. But the plan never came into being because Carter lost the presidency. Dr. Bell encouraged conference participants to make sure they take action to ensure the agenda moves forward. He is particularly interested in African Americans. In order to fix the problems of African Americans within these various systems, African Americans must be involved in the conversations. The black community trusts the community centers but not the universities. Black people are concerned about who is testing their children and why. Partnerships between community-based organizations and the universities is one way to make technical expertise available to train community-based staff. Such efforts are underway at Dr. Bell's agency and the University of Illinois in Chicago, but they are costly. Few community agencies have the resources needed to train their staff in evidence-based interventions. Community-based organizations need to receive funding to assist them in training their staff and such support is necessary to help infuse evidence-based interventions into community-based services.
Michael M. Faenza, MSSW,
National Mental Health Association
Mr. Faenza noted that this session's presentations demonstrate children's mental health as a social justice issue. The disparities in access and treatment highlight the social injustice issues that come into play in children's services. He highlighted challenges in diagnosing mental disorders in children, and a need for more research in diagnosis and treatment. Because so much negative public attention is focused on overprescription of psychotropic medications and overdiagnosis in young children, particular sensitivity around such issues is needed to prevent the damage that such publicity could do. The prevalence of mental disorders and substance abuse disorders in the juvenile justice system suggests a starting point for change in operative services systems for children.
Phillipa Hambrick,
Family Member
Ms. Hambrick described her experiences as a grandmother and mother, providing family care to four grandchildren in need of mental health services for ADHD and major depression. She had difficulty getting services for these children, due to distance or because the children were put on a waiting list for services. The children eventually received services through the school system and through youth and family services. But such services must be expanded and made more comprehensive, she said. If she were to move, her children would lose the services because they would be in a different jurisdiction.
