Section 5: Research gaps and topics for further investigation of mental health and disability
This Chartbook is based on the best available information on mental health and disability. Available measures and statistics are limited by the specific surveys conducted by a range of federal agencies and research studies. As we developed this Chartbook, a number of information gaps became apparent. More work is needed to address those gaps and to improve our knowledge of the prevalence and needs of individuals with disability due to mental disorders.
First, there is incomplete and sometimes-contradictory information on prevalence, or estimates of how many people have a disability due to mental disorders. Until 2003, when information from the NCS-R began to be released, the only study that collected in-person information using established diagnostic measurement was the ECA survey, conducted between 1980 and 1985. While the ECA information was collected two decades ago, this study still provides important information on disorders, since self-reporting tends to undercount the prevalence of mental illness. Recent statistical work by Kessler and others shows that the ECA data provide good estimates that can be validated in other studies. While the ECA study was criticized for developing estimates based on only five U.S. locations, the estimates are still valuable. But with new medications and new attitudes regarding mental illness in the last fifteen years, it is time for new face-to-face data collection and new estimates of prevalence. Regardless of the study or survey method used, there is an undercount of actual prevalence due to reluctance to report stigmatizing conditions for one’s self or for family members.
Some of the questions that need to be answered include:
Some of the needed information will come from scientific and genetic studies. But there is also a great deal that can be accomplished through improved population studies and better measures.
Most of the work on estimation and on service needs has focused on adults and there is a need for more work on this age group. For the working age population, more information is needed on the extent to which mental disorders are disabling with respect to work, family life, and community participation. For children and for individuals beyond 65 years, much more work is needed.
Some mental disorders, including dementia, are associated with aging. These disorders sometimes are included in mental health measures, and sometimes are included separately as age-related conditions. Mental disorders in aging, and how they are related to disability, warrant further study.
New measures of mental disorders in young children have been developed and provided the basis for estimates used in the Chartbook. Additional research is needed on treatment and prevention, and on the relationship between demographic and environmental factors and mental disorders and disability due to mental disorders in children. Much of the information on children comes from the schools, where the disorders may not be recognized or clearly described except in behavioral terms.
In particular, we found little information on youth between the ages of 16 and 22 years, when the first incidence of many serious disabling mental disorders, such as bipolar disorder and schizophrenia, often occurs. This group is not readily identified in school statistics and may never receive special education services.
Mental disorders obviously have a great impact on the Social Security Disability system and on employment services, where new enrollments have expanded over time. Our treatment systems as well as our service and employment systems appear inadequate to address the needs of the many people with disability due to mental disorders. More research is needed about the extent to which these people have access to appropriate services, and the extent to which service use affects employment and independent living outcomes.
More information is also needed on the relationship of the service system to the criminal justice system. There is considerable evidence from NIH studies and other studies conducted with parents and caregivers that lack of access to treatment and services can lead to institutionalization in juvenile or adult justice systems. How much of the identified need for prisons and correctional institutions is related to lack of knowledge and services in the mental health system?
Continued research supported by the National Institute on Disability and Rehabilitation Research, the National Institute of Mental Health and others can improve our understanding of how mental disorders are disabling, and which community systems are needed to reduce or eliminate barriers to full participation for people with mental disorders.