Preventing unemployment and disability benefit receipt among people with mental illness: Evidence review and policy significance.

OBJECTIVE: We identify effective services to assist 3 groups of people with mental illnesses become or remain employed and prevent dependence on disability cash benefits: (a) individuals, including youth, who are experiencing an initial episode of psychosis; (b) employed individuals at risk of losing jobs due to mental illness; and (c) individuals who are or may become long-term clients of mental health services and are likely to apply for disability benefits. METHOD: We searched for articles published between 1992 and 2015 using key word terminology related to employment support services and each subgroup, and prioritized articles by study design. RESULTS: The individual placement and support model of supported employment is more effective than traditional vocational programs in helping people with serious mental illnesses who are engaged in treatment or receiving disability benefits obtain competitive employment. Some early intervention programs effectively serve people who experience a first episode of mental illness, but more research is needed to demonstrate long-term outcomes. Less is known about the effectiveness of employment interventions in preventing unemployment and use of disability benefits among individuals at risk for job loss or long-term mental illness. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: States can fund employment supports to help prevent the need for disability benefit receipt by creatively combining federal sources, but the funding picture is imperfect. Medicaid expansion and other provisions of the Affordable Care Act may fund employment supports and assist in reducing dependence on disability benefits. (PsycINFO Database Record

American Recovery and Reinvestment Act investments in data infrastructure.

AIM: This article describes American Reinvestment and Recovery Act comparative effectiveness research data infrastructure (DI) investments and identifies facilitators and barriers to implementation. MATERIALS & METHODS: We reviewed original project proposals, conducted an investigator survey and interviewed project officers and principal investigators. RESULTS: DI projects assembled or enhanced existing clinical datasets, established linkages between public and private data sources and built infrastructure. Facilitators included building on existing relationships across organizations and making collection as seamless as possible for clinicians. CONCLUSION: To sustain DI, investigators should reduce the burden of comparative effectiveness research data collection on practices, adequately address data privacy and security issues, resolve or lessen the impact of data-linking issues and build research capacity for other investigators and clinicians.

Intimate partner violence, health status, and health care access among women with disabilities.

BACKGROUND: Evidence suggests that intimate partner violence (IPV) against women with disabilities is more pervasive than against women without disabilities. However, little is known about the relationship between IPV, health status, and access to care among women with disabilities. OBJECTIVES: This study 1) describes the prevalence of IPV among women with disabilities and compares IPV prevalence among women with and without disabilities, 2) examines if health status and health care access differ between women with disabilities experiencing IPV and those not experiencing IPV, and 3) examines the association between IPV, health status, and health care access among women with disabilities. METHODS: We conducted secondary analyses of data from 23,154 female respondents to the 2006 Behavioral Risk Factor Surveillance System in 7 states administering the IPV module in 2006. Of these respondents, 6,309 had a disability. We performed chi(2) and logistic regression analyses to address the study objectives. RESULTS: Women with disabilities are significantly more likely to have experienced IPV as compared with those without disabilities (33.2% and 21.2%, respectively). Women with disabilities who have experienced IPV are 35% less likely to report their health as good to excellent and are 58% more likely to report an unmet health care need owing to cost than their disabled counterparts not experiencing IPV, when holding selected sociodemographic factors constant. IMPLICATIONS: Practitioners should be aware of the increased risk of IPV among women with disabilities and its association with health status and access to health care. Practitioners, policy makers, and disability advocates should work together to remove barriers to accessing the health care system for women with disabilities, particularly those experiencing IPV.

Dismantling the poverty trap: disability policy for the twenty-first century.

Working-age people with disabilities are much more likely than people without disabilities to live in poverty and not be employed or have shared in the economic prosperity of the late 1990s. Today's disability policies, which remain rooted in paternalism, create a "poverty trap" that recent reforms have not resolved. This discouraging situation will continue unless broad, systemic reforms promoting economic self-sufficiency are implemented, in line with more modern thinking about disability. Indeed, the implementation of such reforms may be the only way to protect people with disabilities from the probable loss of benefits if the federal government cuts funding for entitlement programs. This article suggests some principles to guide reforms and encourage debate and asks whether such comprehensive reforms can be successfully designed and implemented.

Rural residents with disabilities confront substantial barriers to obtaining primary care.

OBJECTIVE: To learn about the health care experiences of rural residents with disabilities. STUDY SETTING: Rural areas in Massachusetts and Virginia. STUDY DESIGN: Local centers for independent living recruited 35 adults with sensory, physical, or psychiatric disabilities to participate in four focus group interviews. DATA COLLECTION METHODS: Verbatim transcripts of interviews were reviewed to identify major themes. PRINCIPAL FINDINGS: Interviewees described the many well-recognized impediments to health care in rural America; disability appears to exacerbate these barriers. Interviewees reported substantial difficulties finding physicians who understand their disabilities and sometimes feel that they must teach their local doctors about their underlying conditions. Interviewees described needing to travel periodically to large medical centers to get necessary specialty care. Many are poor and are either uninsured or have Medicaid coverage, complicating their searches for willing primary care physicians. Because many cannot drive, they face great difficulties getting to their local doctor and especially making long trips to urban centers. Available public transportation often is inaccessible and unreliable. Physicians' offices are sometimes located in old buildings that do not have accessible entrances or equipment. Based on their personal experiences, interviewees perceive that rural areas are generally less sensitive to disability access issues than urban areas. CONCLUSIONS: Meeting the health care needs of rural residents with disabilities will require interventions beyond health care, involving transportation and access issues more broadly.

Primary care experiences of people with psychiatric disabilities: barriers to care and potential solutions.

This study examined the barriers that 16 focus group participants with psychiatric disabilities confront in obtaining primary care services and their recommendations on improving quality of care. They cited a) difficulty identifying a primary care physician with good empathic and communication skills, b) physicians' misunderstanding of the nature of psychiatric disability, c) inadequate information about the side effects of psychotropic medications, and d) costs due to inadequate insurance coverage. In addition to suggestions for improving patient-physician communication and expanding physician knowledge, participants emphasized strategies to become empowered in their relationships with physicians and to obtain personal support.

Challenging expectations: how individuals with psychiatric disabilities find and keep work.

The results of this qualitative study involving in-depth interviews of 32 individuals with psychiatric disabilities document the importance of beliefs and expectations with regard to employment. Each of the participants were either currently receiving Social Security benefits or had received them in the past due to his or her psychiatric disability. The authors briefly describe the systemic and programmatic barriers to employment that study participants encountered. They discuss how negative beliefs and expectations concerning employment are imbedded within the policies and programs that impacted these participants. They also describe the representative experiences of three study participants who were successful at overcoming these barriers and maintaining employment. Finally, they identify and discuss some of the common factors that may have contributed to successful employment.

Improving health care experiences of persons who are blind or have low vision: suggestions from focus groups.

Persons who are blind or have low vision face special challenges in obtaining care that is safe, effective, timely, and patient centered. To explore perceptions of care and recommendations for improvements, we conducted 8 interviews with experts and 2 focus groups with 19 persons, all of whom are blind or have low vision. Interviewees perceived that they confront special barriers to care because of being blind or having low vision. Barriers fell into 4 broad categories: basic respect, including concerns about physicians thinking they cannot participate fully in their own care; communication barriers, including difficulties interacting with physicians and office staff; physical access barriers, including difficulties getting to and around physicians' offices; and information barriers, including receiving written materials in inaccessible formats (eg, not in Braille, large print, or audiotape). Using common courtesy and individualized communication techniques, physicians and office staff could improve health care experiences of blind and low-vision patients.

Physical and sensory functioning over time and satisfaction with care: the implications of getting better or getting worse.

OBJECTIVE: To determine whether those persons whose sensory or physical functioning improved or worsened over one year are more or less satisfied with their health care. DATA SOURCES: 1996 and 1997 Medicare Current Beneficiary Survey (MCBS). STUDY DESIGN: The MCBS surveys a nationally representative, longitudinal panel of Medicare beneficiaries about their sociodemographic attributes; vision, hearing, and various mobility functions; and 10 items representing satisfaction with and access to health care. Using multivariable logistic regression and controlling for sociodemographic factors, we computed adjusted odds ratios of dissatisfaction with care, examining the effects of changes in sensory or physical functioning. Analyses accounted for MCBS sampling weights. DATA EXTRACTION METHODS: We identified 9,974 community-dwelling respondents, 18 years old and over who answered the 1996 and 1997 MCBS. We assessed five categories of sensory or physical functioning (vision; hearing; walking; reaching overhead; and grasping and writing) and compared 1996 and 1997 responses to identify those whose functioning improved or worsened. PRINCIPAL FINDINGS: Worsened functioning was strongly associated with older age, low income, and low educational attainment. Improved functioning was rarely significantly associated with satisfaction; an exception involved substantially lower rates of dissatisfaction with "ease and convenience" of getting to physicians. Worsened functioning was often statistically significantly associated with dissatisfaction, always with adjusted odds ratios >1.0. Across all five functional categories, persons whose functioning worsened displayed significantly greater dissatisfaction with overall quality, ease, and costs or care. CONCLUSIONS: Persons whose functioning improved rarely reported better satisfaction than did those whose functioning did not improve, while those whose functioning worsened expressed more systematic reservations about their care.

Communicating about health care: observations from persons who are deaf or hard of hearing.

BACKGROUND: Achieving patient-centered care requires effective communication between physicians and patients. Persons who are deaf or hard of hearing face considerable barriers to communicating with physicians. OBJECTIVE: To understand perceptions of health care experiences and suggestions for improving care among deaf or hard-of-hearing individuals. DESIGN: 4 semistructured group interviews, 2 conducted in American Sign Language (for deaf individuals) and 2 using Communication Access Realtime Translation (for hard-of-hearing individuals). Men and women were interviewed separately. Tapes of interviews were transcribed verbatim for analysis. SETTING: Greater Boston, Massachusetts, and Washington, DC, in 2001. PARTICIPANTS: 14 deaf adults (23 to 51 years of age) and 12 hard-of-hearing adults (30 to 74 years of age). MEASUREMENTS: Commonly expressed themes or views organized around dimensions of communication. RESULTS: Concerns coalesced around 6 broad themes: conflicting views between physicians and patients about being deaf or hard of hearing; different perceptions about what constitutes effective communication (such as lip reading, writing notes, and sign language interpreter); medication safety and other risks posed by inadequate communication; communication problems during physical examinations and procedures; difficulties interacting with office staff, including in waiting rooms; and problems with telephone communication, such as lengthy message menus. Participants offered extensive suggestions for improvements, starting with clinicians' asking patients about their preferred communication approach. Having patients repeat critical health information (such as medication instructions) can identify potentially dangerous miscommunication. CONCLUSIONS: As the population ages, physicians will encounter many more persons with hearing limitations. Physicians are not reimbursed for making some accommodations, such as hiring sign language interpreters. However, ensuring effective communication is essential to safe, timely, efficient, and patient-centered care.

Quality dimensions that most concern people with physical and sensory disabilities.

BACKGROUND: People with physical and sensory disabilities face important challenges in obtaining high-quality health care. We examined whether persons who are blind or have low vision, who are deaf or hard of hearing, or who have mobility impairments or manual dexterity problems are satisfied with the technical and interpersonal aspects of their care. METHODS: By using a 1996 nationally representative survey of 16 403 community-dwelling elderly and disabled Medicare beneficiaries, we identified persons with disabling conditions. Adjusted odds ratios (AORs) and 95% confidence intervals (CIs) controlled for demographic characteristics and managed care membership in predicting dissatisfaction with 12 dimensions of care. RESULTS: Of an estimated 33.58 million noninstitutionalized Medicare beneficiaries, 64.1% (an estimated 21.51 million) reported at least 1 potential disability and 29.5% (an estimated 9.89 million) reported more than 1 potential disability. Roughly 98% of people with and without disabilities believed their physicians were competent and well trained. But statistically significantly more people with disabilities reported dissatisfaction with care for 10 of the 12 quality dimensions. Persons reporting any major disability were more likely to be dissatisfied with physicians completely understanding their conditions (AOR, 2.4; 95% CI, 1.9-3.1), physicians completely discussing patients' health problems (AOR, 2.4; 95% CI, 1.9-2.9), physicians answering all patients' questions (AOR, 2.3; 95% CI, 1.7-3.1), and physicians often seeming hurried (AOR, 1.6; 95% CI, 1.4-1.9). CONCLUSIONS: Persons with disabilities generally reported positive views of their care, although they were significantly more likely to report poor communication and lack of thorough care. These findings held regardless of the disabling condition. Thoughtful systematic approaches are required to improve communication and to reduce time pressures that might compromise the health care experiences of people with disabilities.

Does U.S. federal policy support employment and recovery for people with psychiatric disabilities?

Evidence suggests that a high percentage of people with a psychiatric disability can recover--find meaningful work, develop positive relationships, and participate fully in their communities. Evidence also suggests that work is an essential component of recovery. However, few people with a serious psychiatric disability are actually employed and most of those who are employed work only part-time at barely minimum wages. To assess the impact of federal programs such as Social Security Disability Insurance, vocational rehabilitation, medical insurance, and psychiatric services upon employment, we conducted a qualitative study of 16 employed and 16 unemployed individuals with psychiatric disabilities. All of our participants had disabilities severe enough to qualify them for Social Security Disability benefits. They told us that current federal policies and practices encouraged employment and integration of only a few participants, in a particular stage of their recovery, and placed significant barriers in the employment path of others.

Satisfaction with quality and access to health care among people with disabling conditions.

OBJECTIVE: To compare satisfaction with health care between persons with and without disabling conditions. DESIGN: Responses to 1996 Medicare Current Beneficiary Survey. SETTING: Nationally representative of the United States population. STUDY PARTICIPANTS: Community-dwelling Medicare beneficiaries, older and younger than 65 years (n = 16 403). MAIN OUTCOME MEASURE: Adjusted odds of being dissatisfied or very dissatisfied with five general quality measures and five access-to-care measures by five disabling conditions (blind or low vision, deaf or hard of hearing, difficulty walking, difficulty reaching, manual dexterity difficulties). Multivariable logistic regressions on dissatisfaction adjusted for age group, sex, disabling condition, race, ethnicity, urban versus rural residence, education, household income < $25 000 versus > or = $25 000, having a usual source of care, proxy respondent, and managed care. RESULTS: Of an estimated 33.58 million non-institutionalized Medicare beneficiaries, 64.1% (estimated 21.51 million) reported at least one disabling condition. Among younger beneficiaries, 10.4% with any major disability were dissatisfied with their care overall, as were 4.6% without disabilities. Nevertheless, persons with disabilities generally had significantly higher adjusted odds of dissatisfaction. For elderly persons with any major disability, the adjusted odds ratios (95% confidence interval) of dissatisfaction were: 3.2 (2.4-4.3) for overall quality; 3.2 (2.2-4.6) for access to specialists; 4.4 (3.1-6.4) for follow-up; and 4.2 (3.1-5.7) for ease of getting to doctors. Elderly managed care enrollees were less satisfied with access to specialists, but more satisfied with costs. CONCLUSION: The quality domains generating the greatest dissatisfaction were anticipated, given the nature of disabling conditions. Improving these areas requires attention inside and outside the health care system. Redesigning practice settings and procedures, and changing payment policies offer the only solutions to some problems.

Obesity among adults with disabling conditions.

CONTEXT: Obesity, a leading cause of preventable death and chronic disease, is associated with disability. Little is known about obesity among adults with specific disabilities. OBJECTIVES: To determine the prevalence of obesity in adults with physical and sensory limitations and serious mental illness. DESIGN, SETTING, AND PARTICIPANTS: The 1994-1995 National Health Interview Survey of 145 007 US community-dwelling respondents, 25 626 of whom had 1 or more disabilities. MAIN OUTCOME MEASURES: Likelihood of being obese, attempting weight loss, and receiving exercise counseling among adults with and without disabilities. RESULTS: Among adults with disabilities, 24.9% were obese vs 15.1% of those without disabilities. After adjusting for sociodemographic factors, adults with a disability were more likely to be obese, with an adjusted odds ratio (AOR) of 1.9 (95% confidence interval [CI], 1.8-2.0). The highest risk occurred among adults with some (AOR, 2.4; 95% CI, 2.3-2.5) or severe (AOR, 2.5; 95% CI, 2.3-2.7) lower extremity mobility difficulties. After further adjustment for comorbid conditions, adults with disabilities were as likely to attempt weight loss as those without disabilities, except for adults with severe lower extremity mobility difficulties, who were less likely (AOR, 0.7; 95% CI, 0.5-0.9]), and adults with mental illness, who were more likely (AOR, 1.4; 95% CI, 1.2-1.8). Physician exercise counseling was reported less often among adults with severe lower extremity (AOR, 0.5; 95% CI, 0.4-0.7) and upper extremity (AOR, 0.7; 95% CI, 0.5-1.0) mobility difficulties. CONCLUSION: Obesity appears to be more prevalent in adults with sensory, physical, and mental health conditions. Health care practitioners should address weight control and exercise among adults with disabilities.

Health plan selection criteria by people with impaired mobility.

BACKGROUND: Many decision-support tools for consumers selecting a health plan include a module measuring peer-group satisfaction with service and quality of care. The most widely used tools are sufficient for most people, but fail to report measures that are important to many individuals with disabilities. OBJECTIVES: To elicit health plan selection and assessment criteria by groups of people with one type of functional impairment arising from different origins. RESEARCH DESIGN: Observational study and qualitative analysis of structured focus groups. Content analysis of CAHPS survey instruments. SUBJECTS: Each participant had a mobility impairment arising from spinal cord injury, cerebral palsy, rheumatoid arthritis, or multiple sclerosis. Each participant had a choice of health plans. Focus groups were conducted in Phoenix, Philadelphia, and Washington DC. RESULTS: People with mobility impairments arising from the studied conditions desire comparative health plan information on the reliability of transportation to medical appointments, the ability to use an experienced and knowledgeable specialist as a primary provider, and accessible buildings and examination equipment. This study population also seeks information about the experience of their peers in each health plan, especially about benefits administration. CONCLUSIONS: People with mobility impairments arising from spinal cord injury, cerebral palsy, multiple sclerosis, or rheumatoid arthritis currently have little information and little bona fide choice of health plans and physicians. This group of people seeks specific information within the areas of benefit coverage, benefits interpretation and administration, provider panels, accessibility to clinics and equipment, and how to navigate the health plan's grievance and appeals process.