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Appendix A

In Miami-Dade County, the impacts on paid employment and earnings were 9. In the final evaluation report of this site, Fraker et al. In summary, the post-Ticket Act demonstration projects and programs indicated a mix of success in promoting employment outcomes. As with the findings for earlier SSA demonstrations projects, the MHTS and YTD interventions, which offered more customized supports to more narrowly targeted interventions, had relatively stronger impacts programs and demonstrations such as TTW and BOPD, which had less individually targeted approaches in targeting participants for services.

An important caveat for the interventions described above is that it is too early to assess long-term impacts that could have important implications for assessing the costs and benefits of the demonstration. For example, there is a potential that some demonstrations could produce a net benefit on participant outcomes and spending by other government agencies, even if there is not a direct reduction on spending for SSDI and SSI if the demonstrations result in less government spending elsewhere.

This issue is particularly relevant in YTD and MHTS, given that the positive participant outcomes related to employment and employment service use could lead to other improved long-term outcomes such as social engagement , leading to a lower need for future services or use of expensive supports e. In an attempt to examine the effectiveness of alternative approaches in providing supports to people with disabilities to improve their employment outcomes, the Ticket to Work and Work Incentives Improvement Act of legislated the test of an initiative that extends Medicaid coverage to individuals who are at risk of—but may have not yet applied for—SSA disability benefits.

All participating states used random assignment, offered the program to eligible adults 18 to 62 years old who were working at least part time, and excluded persons who indicated that they had pending disability applications or were receiving SSDI or SSI benefits. Each of the four participating states—Kansas, Hawaii, Minnesota, and Texas—developed its own intervention, target population, and recruitment methods within CMS guidelines.

None of the DMIE projects had an impact on employment and earnings. A major challenge in detecting employment and earning impacts was that control group members in all sites generally remained employed over 90 percent throughout the demonstration. The DMIE was associated with a statistically significant reduction of 2. The authors noted that the short time frame may have limited impacts, particularly on SSA disability benefits given that it takes some time to apply for and become eligible for these benefits.

DMIE is notable because it represented an attempt to target services to people with disabilities before they entered SSDI or SSI, though the findings reveal the challenges of identifying a target population at risk for benefits. In all sites, most of the control group remained employed throughout the demonstration, and the one site that had impacts on SSDI participation had very low rates of SSDI entry by the control group 4.

If future interventions could more precisely identify populations at risk for program entry or loss of employment, then early intervention impacts might be stronger than those reported for DMIE. However, most of these have not been rigorously evaluated Rangarajan et al. Consequently, many service providers continue to use more traditional approaches to providing employment services—especially sheltered and segregated approaches—to people with intellectual and other severe disabilities, in part because a universally agreed upon set of best practices for serving this population does not exist Kregel and Dean These programs are voluntary and generally offer a combination of competitive employment and health services to populations that are recruited through social service agencies.

Each of these evaluations provided a rigorous evaluation of employment outcomes and included detailed documentation of the services delivered so the findings could be replicated in other settings. The follow-up period on these studies typically was one to three years, and sample sizes tended to be small from less than 50 to over Bond summarized 12 randomized controlled studies that compared supported employment with established vocational services, and Bond et al. A major advantage of the IPS model relative to other models was that it has been well documented in a practice manual Becker and Drake The supported employment findings in these small-scale studies consistently showed strong impacts on employment.

Bond et al. In the later studies focusing on the IPS model, Bond et al. Although the studies provided important information on employment, they tested different types of service models and lacked information on key outcomes, such as earnings. A major advantage of EIDP over the previous studies is that it was structured to provide a detailed comparison across supported employment models, regions, and subgroups. The study was designed to determine new ways of enhancing employment opportunities and quality of life for consumers with psychiatric conditions.

The treatment groups received services under different supported employment service models designed specifically for people with psychiatric conditions, including the IPS model described above, whereas other experimental sites enhanced their service model by providing novel features such as developing special connections to employers.

There were 1, participants assigned to treatment and control groups at the EIDP study sites, and the evaluation tracked outcomes for two years. As with the supported employment findings of the s, Cook et al. Specifically, Cook et al. Cook et al. Although the earnings impacts in these studies were statistically significant and represented significant increases in monthly income, they were generally not enough to move people off benefits.

One recurring theme in the supported employment findings that was consistent with the SSA demonstrations was the importance of customized supports to meet the needs of the individuals. They noted the results confirm the importance of communication between service providers, integration of mental health and rehabilitation services, and a strong emphasis on vocational services in meeting employment goals. Over the past few decades, the employment interventions for people with disabilities have experienced mixed success in promoting employment and earnings outcomes and little success in reducing reliance on SSI and SSDI benefits.

The size of employment and earnings impacts are relatively small in comparison to what might be needed to eliminate the need for SSDI or SSI benefits and the associated benefits through Medicare and Medicaid. In part, the limited impacts likely reflect that most participants targeted in these demonstrations receive substantial cash and other supports that are terminated due to substantive work and must navigate a fragmented system of supports to access additional services.

Based on existing findings, the strongest interventions appear to customize supports and target services specifically to younger populations, which is perhaps not surprising given that younger populations have long-term work potential. For example, the supported employment and MHTS interventions targeted customized supports to those with psychiatric impairments and repeatedly generated small, but significant, positive impacts in a variety of employment settings. Several youth projects, including the STETS and TETD demonstrations and three ongoing YTD projects, showed strong employment and earnings impacts, particularly in projects where the supports were individually customized.

Conversely, employment impacts have generally been smaller for interventions with a broader focus or where the supports did not substantially differ from existing services. For example, TTW offers an employment-based program to the majority of SSDI and SSI eligible beneficiaries that—from the beneficiary or private employment provider perspective—at initial rollout was not radically different from the supports that were previously available. Another lesson that these demonstrations illustrate is the importance of testing intervention service delivery prior to full-scale implementation to ensure everything operates as intended.

BOPD and YTD both provide excellent examples of how testing and careful monitoring of intervention services can lead to improvements in service delivery. Conversely, the lack of testing in TTW led to substantial initial implementation problems. As policymakers continue to develop ideas to promote the employment and economic self-sufficiency of people with disabilities, the lessons from past and ongoing employment demonstrations are providing insights into promising interventions.

Nonetheless, the successes identified in this review of intervention options, particularly those assisting younger beneficiaries, hold promise for designing future approaches. Perhaps more importantly, the general approach of testing intervention supports to ensure adequate implementation and interest in participation prior to full-scale implementation is fundamental to ensuring that any new initiatives do not have unintended consequences. The related literature includes assessments of the residual work capacity of SSDI beneficiaries Maestas et al. Project Network targeted a subgroup of beneficiaries applying for benefits.

However, in both cases, the subgroup of people not on the disability rolls represented a small portion of the demonstration target population. Among the subgroup that received SSDI benefits at the time of enrollment, the statistically significant impact on SSDI receipt was about 11 percent at the end of the six-year post enrollment period Decker and Thornton The estimates suggest that the demonstration was particularly effective in increasing earnings for the group with the highest IQ scores but ineffective for groups with low or moderate scores.

The estimated impact on earnings for people living independently at the time of enrollment was very large percent , which possibly reflects their greater independence or motivation Decker and Thornton The SSA-funded projects focused on testing new services for the Social Security claimants with disabilities. The RSA-funded projects focused on activities aimed at changing the overall system of supports for people with disabilities some of whom received other forms of public assistance and were designed to help them obtain employment and live independently.

One of the 12 SSA-funded projects that targeted high school students with an emphasis on education and employment aspirations was excluded from the study because the administrative data for the project was not sufficient for measuring impacts on these outcomes. To test this method, they compared findings from the propensity score matching methodology to the random assignment findings in the four sites that had implemented random assignment. Presumably, if the propensity score matching method was unbiased, it would produce results similar to those based on random assignment.

Hence, this finding might be important in considering the applicability of non-experimental designs more generally in other settings where volunteer rates are low. We chose interventions that had an intensive employment focus and a completed evaluation. At the time of their review, five projects had been canceled and only four were complete. Of the completed demonstrations, we only exclude the Accelerated Benefits demonstration, which, although it had an employment component, had the dominant provision of providing early access to a health plan to SSDI beneficiaries in the Medicare waiting period.

The employment supports in the Accelerated Benefits demonstration, which were delivered telephonically, were substantially less intensive relative to the employment supports described in this section. Hence, they concluded the effects were too small to differentiate from historical variation. Variations of supported employment models exist, including for people with nonpsychiatric impairments, though they all emphasize the provision of ongoing individualized supports to meet a competitive employment outcome.

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Autor and Duggan suggest using a mandatory short-term disability insurance program. Mann and Stapleton suggest testing an approach using a disability support administrator to address the fragmentations in the existing system. Finally, Liebman and Smalligan suggest testing several options and reforms to develop an evidence based approach to reforming disability policy. Stapleton and Wittenburg provides a review of several of the aforementioned proposals.

Disability insurance system. Economic Policy , 25 63 — Berkowitz M: The ticket to work program: the complicated evolution of a simple idea. In Paying for results in vocational rehabilitation: Will provider incentives work for ticket to work. Washington, DC: Urban Institute; — Bond GR: Supported employment: evidence for an evidence-based practice. Psychiatric Rehabilitation J , 27 4 — Submitted to the national council on disability, social security study consensus validation conference.

Psychiatric Rehabilitation J , 31 4 — Burkhauser RV, Daly MC: The declining work and welfare of people with disabilities: what went wrong and a strategy for change. In The declining work and welfare of people with disabilities. Policy Brief. Arch Gen Psychiatry , 62 5 Soc Sec Bull , Fraker T: The youth transition demonstration: lifting employment barriers for youth with disabilities.

Rockville, Maryland: Westat; Except Child , 53 6 — Kornfeld R, Rupp K: Net effects of the project NetWork return-to-work case management Experiement on participant earnings, benefit receipt, and other outcomes. Supported employment: a direct comparison of long-term earnings outcomes for individuals with cognitive disabilities.

In Achievements and challenges in employment services for people with disabilities: the longitudinal impact of workplace supports.

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Richmond, Virginia: Virginia Commonwealth University; Liebman J, Smalligan J: An evidence-based path to disability insurance. Cambridge, MA: Working Paper. John F. Kennedy School of Government at Harvard University; Livermore GA, Goodman N: A review of recent evaluation efforts associated with programs and policies designed to promote the employment of adults with disabilities. Luecking RG, Wittenburg DC: Providing supports to youth with disabilities transitioning to adulthood: case descriptions from the youth transition demonstration. J Vocational Rehabil , — Santa Monica, CA: Rand; Issue brief report No.

In Paying for results in vocational rehabilitation: will provider incentives work for ticket to work. Am Stat , 62 3 — Soc Secur Bull , 66 2 — Rupp K, Bell SH: Provider incentives and access in the ticket to work program: implications of simulations based on the project NetWork field experiment. Please review the Duty to Accommodate policy in Annex 1E. To enable people with disabilities to overcome physical, technological, or informational barriers, various types of accommodation may be required, including:.

Analysts should be aware of the appropriate accommodations required, and incorporate them into each stage of policy design, implementation and evaluation. Links to tools, policies, guides and other sources of information on accommodation are provided in Annex 1E. It is important to note that all government documents should use appropriate and inclusive language that helps to eliminate the stigma of disability and the perception of people with disabilities as "dependent".

Safety and protection from victimization are essential for all Canadians. People with disabilities can experience higher levels of victimization in the form of abuse, violence, neglect, harassment or discrimination, often because of economic and physical vulnerability. Every effort should be made to empower people with disabilities by increasing their knowledge of self-protection and protective environments, as well as by helping them recognize personal vulnerabilities and environmental risk factors.

There are a number of national, provincial, and local disability organizations within Canada. Disability organizations hold important first-hand knowledge and expertise on disability-related issues. Stakeholder consultation is an effective way to tap into this expertise, as is engaging individuals with disabilities and their families in the policy-making process.

Over the past few decades, a number of publications, position papers and court decisions have helped shape disability policy in Canada. The reports provide an overview of existing data, knowledge gaps, and accessibility supports available to people with disabilities. The key principles that informed the development of the Guide include full participation, equality of opportunity, opportunity for independent living, and economic self-sufficiency.

Breaking down these barriers can help facilitate the full inclusion and participation of people with disabilities. Every person with a disability should have the opportunity to remain in his or her local community and receive needed supports from mainstream education, health, employment, and social services, as well as specialized services and supports where required.

The principle of independent living advocates for a society where people with disabilities have opportunities to live life to its fullest and take advantage of what society has to offer. Independent living enables people with disabilities to self-actualize and fulfill their rights and responsibilities as Canadian citizens. Promoting self-sufficiency and independence is of key importance to program design and service delivery. While individual needs will differ, the starting presumption should be one of independence, rather than dependence, with public services providing the support needed to maximize the self-sufficiency of people with disabilities.

This section will help to ensure that people with disabilities are considered and included in each stage of research and knowledge development. Developing inclusive policies, programs and services requires adequate knowledge of the conditions of all Canadians, including those with disabilities. Research is needed on the social, economic and participation issues that affect the lives of people with disabilities and their families.

When designing research projects and data collection instruments such as surveys or polls, specific issues that impact people with disabilities need to be considered. Researchers should ask themselves what knowledge gaps remain and what further research is required on the issue. The expertise of the Office for Disability Issues or recognized community organizations may be helpful in identifying potential knowledge gaps. It is essential that all research projects be conducted in a manner that takes into account the unique needs and situations of people with disabilities so that they can fully participate in the research process.

This may require additional considerations and accommodation. People with disabilities should be able to access, interpret and benefit from the results of research and knowledge development projects. Sharing the knowledge that is gained from research is key to building an inclusive society. It is important to share research results with other branches and departments, and where appropriate, with disability organizations.

If not, is there a justifiable reason to not include them? This section shows how you can ensure that policies, programs and services are, from the outset, designed to be inclusive of people with disabilities. Any decision by government may have an impact on people with disabilities. It is necessary to ensure that government policies and practices do not have unintended negative consequences on people with disabilities and their families. To prevent barriers to accessibility, policy and program design should consider the needs of people with various types of disabilities, and allocate sufficient funds for disability-related costs and expenses.

People with disabilities are the leading voice on issues related to the experience of disability. Involving people with disabilities and disability organizations in the policy-making process helps ensure that people with disabilities are integrated into community life on their own terms and that their priorities, goals and aspirations are reflected in government policies, programs and services.

People with disabilities are not a homogeneous group. There can be considerable variations in the type and severity of disability. Government policies and programs should ensure equality of access to support services regardless of gender, age, cultural background, type of disability, or how the disability was acquired. In addition, every effort should be made to ensure that people with disabilities can access, read, and understand all information that is made available to the public.

To prevent barriers to accessibility, policy and program design should consider the needs of people with various types of disabilities. Please see Key Stakeholder. Please see Annex 1C for a list of key resources. Links to tools, policies, guides and other sources of information on policy and program development are provided in Annex 2. This section will help you ensure that monitoring and evaluation frameworks attached to programs and services take into account people with disabilities.

For example:. This section will help you to design and deliver services that are accessible from the outset and that can accommodate the needs of people with disabilities. To ensure services are accessible, it is important to be aware of the obstacles encountered by people with disabilities.

At the same time, the creation of a minimum data set on disability should be explored; such a data set could be included in all population-based surveys. The selection and development of survey domains--e. NHRS focuses on a baseline cohort aged in AHEAD includes persons aged 70 or over in Where feasible, control groups should be included among survey respondents to compare findings on persons with disabilities to persons without disabilities. Participants made a number of recommendations on obtaining updated disability data.

Among them were the following. Expand the number of disability questions on the Current Population Survey. Include among them one or more questions on working conditions and ask the questions monthly. Expand AHEAD's survey modules to capture more aspects of disability and test experimental approaches.

Extend NHRS to younger age groups; among other things this could permit capture of data before and after the onset of disability for some individuals. Add Supplemental Security Income status to questions on children in the Consumer Expenditure Survey, the Survey of Income and Program Participation and all other major economic surveys. Incorporate hypotheses and measures from epidemiological studies into the development of national surveys; for example, it is possible that clinically-derived measures of cognitive impairment could be adapted to large-scale surveys.

Consider more focused surveys rather than oversampling on large surveys; one possibility is a survey of families who have children with developmental disabilities to evaluate the impact of cash payments. Make greater use of questions from national surveys, e. With appropriate weights, national surveys could thereby be used for State-level estimation. For the planned redesign of the National Health Interview Survey, retain the conditions list and incorporate questions on work capacity plus cognitive, social and physical functioning.

Some federally-sponsored surveys have disability data that could be more fully utilized. The National Institute on Mental Health is currently sponsoring the development of a new national survey with disability-related measures titled Use, Needs, Outcomes and Costs in Child and Adolescent Populations. In addition to national surveys, it will be necessary in the future to make greater use of subnational data sources, such as:. Insofar as possible, national surveys should be replicated at the State level or at least key data elements from these surveys incorporated into State surveys.

State and local government monitoring systems are another potential source of useful data on persons with disabilities. The benefits to State and local governments in increasing access to their data need to be highlighted. CDC sponsors Disabilities Prevention categorical grants. Thirty States participate and have research and surveillance systems for traumatic brain injury, spinal cord injury, spina bifida, cerebral palsy, fetal alcohol syndrome, Down syndrome, mental retardation, and sickle cell anemia. Subsequent to the meeting, one participant sent a letter proposing a way to generate longitudinal data from States.

The idea is to identify at least several States preferably large ones that have maintained strong data sets on persons with disabilities. Such data sets could be pooled across a specified number of years. One largely untapped area is proprietary data bases. It was suggested in the meeting that private firms might be more willing to make their data available if they got some tangible return. Also, the incentive to share data might be enhanced if it were possible to pool data from several sources e. The potential for analyses of data on disability issues is great.

Several specific suggestions emerged from the participants.

Key figures

Identify the top ten questions of disability policy interest and invite researchers to address them. For example, the National Institute on Aging supports nine Demography on Aging Centers around the country; they are available as resources for analyzing policy issues on elderly persons with disabilities, as well as conducting basic research. Use new techniques of computer mapping to highlight geographic areas of high and low disability rates. Develop more theory-driven and hypothesis-driven surveys on disability rather than trying to answer every conceivable question.

Often survey development is guided by policy issues which prove to be transitory. Survey data should focus rather on longer term issues and concerns that undergird policy development. Use disability data to monitor the differential impacts of cutbacks in public programs, to evaluate program effectiveness and to improve program operations. While additional data on disability are needed, more could be done to analyze existing data.

In fact, in an era of cutbacks more will have to be done to analyze existing data. While generally well-received, the paper was faulted for failing to highlight problems with self-reported data on functional status. There was some question about the advisability of oversampling based on functional status, since the measures are inherently "soft" and since functional status itself is very changeable. Also, it was noted that too little attention was paid to the need for data on pre-disability and post-disability status and to longitudinal data overall.

Participants throughout the day identified actions that ASPE might take to foster disability data development and analyses. One post-meeting correspondent supported the creation of a single agency to manage Federal statistical programs and respond to policy research priorities. Advisory focus groups of key constituencies e. Bring together State officials, private sector representatives and members of the disability community to discuss data design and data access issues. Conduct smaller meetings devoted to the data needs of specific groups of persons with disabilities.

Promote faster access to Federal data sets through such mechanisms as early results workshops. A current candidate for release of public use tapes as soon as possible is the Disability Survey. Facilitate linkages between survey data and administrative records; e. Also, try to broaden the kinds of information collected for administrative purposes; e.

Similar content. Eustis, Ph. Clark, D. Adler, M. Introduction II. Data on Working Age Adults V. References X. We asked participants to assist us to: Assess disability-related national data sets pertaining to health and long-term supports, particularly as related to the policy issues discussed below. Identify next steps in analyzing available disability data. Definition of Disability There are many ways to define "disability".

Major disability-related initiatives which would benefit from more current data and data analyses include the following: President's Disability Policy Review The White House has undertaken a broad review of Federal disability policy through a group chaired by Carol Rasco and Alice Rivlin. Health Care Reform Initiatives Access to health insurance is a major concern for persons with disabilities. Potential Changes in Medicare and Medicaid Many States are using managed care plans to serve their Medicaid beneficiaries.

Long-Term Support Reform Debate continues concerning the feasibility of a Federal program to provide block grants to States for home and community-based services, including personal assistance services PAS , for persons with disabilities. Welfare Reform Initiatives Approximately one-third of women receiving Aid to Families with Dependent Children AFDC either have a disability, have a child with a disability or may reside with another adult with a disability Adler, The Changing Federal Role: A Devolution; B Reinvention A major theme of the current Congress is transferring responsibility for social programs to the States, generally by means of block grants.

Federal Data Bases The United States has a wide variety of data bases on persons with disabilities--national, State and private. Other specific recommendations for improving disability data collection include: Routine inclusion of disability measures in ongoing national data collection systems LaPlante in National Council on Disability, , p. Data from the survey are relevant to the following policy questions: What are the characteristics of people with disabilities who rely on DHHS programs?

These include: Use and costs of PAS and related supports. Strengths and Weaknesses The sheer size of the working age population with disabilities is immense. The Commission has authority to examine: causes of program growth; eligibility criteria and determination; relative merits of voucher rather than cash benefits; effects of SSI benefits on children and their families; and merits of alternative approaches to helping children achieve future independence and employment, including closer involvement of private organizations in providing services. Existing Data Sources Little information exists on children with disabilities.

Program records from SSI and the special education programs also contain disability data. Strengths and Weaknesses It is difficult to measure disability in children-much more so than for adults. Key Policy Concerns While data on older adults with disabilities is more extensive than for other populations, there are significant gaps. Strengths and Weaknesses For purposes of determining disability status among the elderly, surveys tend to focus on the ability of respondents to carry out ADLs and IADLs. Existing Data Sources In light of a variety of policy and program concerns, data needs on special populations can be grouped into four categories: a prevalence data for the population as a whole and major subgroups; b data on socioeconomic status, health status, functioning and related demographic characteristics; c data on service use, service needs, service costs; and, d data on developments over time for special populations as they move from childhood to adulthood to old age.

Strengths and Weaknesses The principal limitations across the three national surveys include: Inadequate flexibility in the data to distinguish between mild and moderate disability from severe disability. Small or non-representative sample sizes. Key Questions In developing a disability data strategy that meets ASPE's specific policy research agenda and at the same time serves the interests of the research community more broadly, a number of questions suggest themselves.

Content What are the relative priorities on collecting data at the level of: persons? Coverage Since many major national surveys cover only the civilian noninstitutionalized population, how can coverage be extended to persons in institutions, persons in the armed forces and persons living abroad as part of an overall disability data strategy? Sampling How can existing sampling frames, which are built around housing units and group quarters institutional and non-institutional , be changed to identify more easily persons with disabilities who live in alternative housing arrangements assisted living facilities, board and care homes, independent living facilities, etc.

Periodicity What can be done to collect data on persons with disabilities on a more regular and predictable basis? Access What can be done to assure the timely production of useful and widely available public use tapes? Administrative Records What can be done to improve access to administrative records and link them to national survey data?

Subnational and International Estimation To what extent should Federal resources be expended to generate estimates at the State and sub-State level on the prevalence, incidence and types of disability? Modeling How can microsimulation models on financing and personal assistance services for persons with disabilities be developed and what would be the critical features of such models? Potential Next Steps The following is a list of potential next steps for ASPE that could help articulate and support a policy relevant disability-related data strategy.

Encouragement of linkages of administrative records to survey data. Purpose To provide a current series of information on the quality and quantity of the housing stock in America, as well the characteristics of its occupants. Design There are two components of the American Housing Survey: a national sample and rotating samples of metropolitan areas.

Initial sample of housing units was drawn in and partly replaced in and ; updated continuously. Data collected through interview of unit occupants, or if vacant, informed persons such as landlords, rental agents, neighbors. Content Housing costs, physical condition and age of the unit, utilities used, residential mobility, neighborhood services available to residents, and needed housing improvements. Detailed demographic and income data are collected for household members.

The supplements included questions on difficulty getting around, health conditions causing difficulty, and housing modifications needed. Coverage Housing units from urban and rural areas. Sample Approximately 56, units in the national survey. Also samples 44 metropolitan areas throughout the U.

Future Ongoing Comments Data collection focuses on housing units, as well as individuals and families in the units. Survey regularly goes back to the same home to measure change. Thomas Juster, University of Michigan Willard Rodgers, University of Michigan Beth Soldo, Georgetown University Sponsor National Institute on Aging Frequency , with biannual follow-ups for all respondents Purpose Monitor transitions in physical and cognitive capacity in advanced old age; relate changes in health and economic resources to intergenerational transfers; examine the relationship of late life changes in physical and cognitive health patterns.

Content Physical and cognitive health, economic status, family structure, demographics, housing, service use. Disability Measures ADLs, IADLs, use of devices, personal assistance, financial management abilities; tests of memory and acuity, Wechsler Adult Intelligence Scale, Dementia Test; quality of life scale, depression diagnosis and treatment; condition list. Products Public use data tapes; wave I data currently available. Future Proposed continuation of the survey from Comments Detailed ADL questions: if get help, how often, which devices are used, if have difficulty.

Health and Retirement Survey Contact F. Purpose To look at factors that affect the age at which people retire and the evolution of health and economic status during retirement. Content Health and cognitive conditions, retirement plans, attitudes and perspectives, family structure and transfers, employment status and job history, disability, demographics, housing, mobility, income, wealth, health insurance, and pension plans. Disability Measures Physical and cognitive functioning, physiological measurements of health and functioning, chronic conditions, job-related limitations, employment history, welfare disability applications, SSDI application, and benefits received.

Coverage Wave I interviews of persons born between and and their spouses. Sample 7, households 12, persons. Products Preliminary data tape of Wave I is currently available, more complete data available in early ; data from Wave II available in spring of Future Proposed continuation of the survey from , with possible introduction of a new cohort in Comments detailed measures of functioning and cognitive impairment excellent source of information on the incidence of disability and impact on work status and employer response to disability Current Population Survey CPS ; March Supplements Contact Jack McNeil Sponsor Bureau of the Census for Department of Labor's Bureau of Labor Statistics Frequency Monthly since Purpose To obtain data on employment and unemployment.

Design Longitudinal. Nine waves of interviews are conducted at four month intervals over a 30 month period for each panel. There is a standard core interview supplemented by periodic topical modules. All disability measures are found on selected topical modules. Content Monthly data on demographic and employment characteristics, with a March supplement on work disability, health insurance and program participation.

Disability Measures Work disability for persons aged fifteen and older prevented or limited in work, left job for health reasons, under age 65 and receiving Medicare or SSI, receipt of SSDI. Coverage Civilian non-institutionalized population. Sample Approximately 50, households annually. Products Publications, public use data tapes.

Trends in Social Security Disability Insurance

Future Redesign for is underway. House of Representatives. Design Every dwelling in the country receives either the short form with basic population and housing questions. The disability questions are about the ability to work, mobility, and self-care limitations. These questions are asked of the adult population aged 15 and over, and proxies may be used to answer these questions. Content Basic demographic and housing characteristics of the population. Disability Measures Persons are asked if they have a physical, mental, or other condition for at least six months that limits their ability to work or entirely prevents them from working, difficulty With activities such as going outside or shopping, and difficulty taking care of their personal needs.

Coverage Households; Group Quarters - institutional and non-institutional. Sample All U. Future Plans for Year in progress. Design Personal interviews and self-reports. Phase II Fall Fall is administered about six months after Phase I to about 40, respondents with serious disabilities.

The disability system and programs to promote employment for people with disabilities

Data linkages with SSA and Medicare records can also be made. Content Phase I collects data on the prevalence, severity, type, duration, and disabling conditions; the health care, demographic, socioeconomic, health insurance, and program characteristics of people with and without disabilities. Phase II collects data on service use and expenditures and aspects of daily life housing, long-term care services, home care, personal assistance, respite care, transportation, employment, accommodations, work history, vocational rehabilitation, relationships, family structure, family impact and child care.

Disability Measures Disability measures in Phase I include standard limitation of activity measures and detailed measures of sensory impairments, functioning of specific body systems, six separate ADLs, six separate IADLs, mental illness, assistive devices, childhood disability, and functioning for children under five. People with mental retardation and other developmental disabilities using the legislative definition can also be identified.

Sample , households or , over two years. Comments the only national comprehensive survey of children's disability and persons with developmental disabilities that has occurred in this country, the first such survey to have occurred on the working age population since , and the most complete disability survey on all ages disability definitions are exhaustive and state-of-the-art and sample sizes are quite large there is a potential for re-interviewing respondents with disabilities at some point in the future, if funds permit Epidemiologic Catchment Area Study ECA Contact William Narrow Sponsor National Institute of Mental Health Frequency One-time.

Purpose To assess the prevalence of mental and addictive disorders and to estimate service use. Content Use of health services: ambulatory specialty mental and addictive, general medical, and human services, as well as admissions to hospitals and residential treatment centers; diagnostic data. Disability Measures Receipt of disability compensation; having to give up regular activities; diagnosis of mental illness; symptoms used as indication of impairment; unable or limited in work because of emotional or mental impairment. Sample 18, household ; 2, institutional.

Future Ten year follow-up being conducted at Baltimore site; mortality follow-up at New Haven site. Comments largest and most comprehensive community-based epidemiologic study in the mental health field provides information on need and demand for mental health services allows for comparison of service use patterns by persons with different diagnoses not nationally representative permits ability to assess use of multiple facilities Longitudinal Study of Aging LSOA I and II Contact Julie Dawson Weeks, NCHS Sponsor National Center for Health Statistics, National Institute on Aging Frequency Baseline survey in , and followup waves in , , Purpose To measure change in health status, physical functioning and living arrangements, including movement into and out of institutions, among a cohort of older Americans as they move into and through the oldest ages.

Personal interview at baseline, telephone interview at followup. Information on basic demographic characteristics, work history, conditions and impairments, community services, income and assets obtained at baseline. Also questions on impairment, health related retirement, and prevalence of disabling health conditions.

Sample 7, elderly persons. Update on cause of death and Medicare coming in Comments first longitudinal study of the community-based elderly population use of the LSOA I and II together will enable users to identify changes in functional status, medical conditions and impairments, living arrangements, and social supports across cohorts can be linked with HCFA Medicare files and National Death Index efforts are being made to include disability measures in LSOA II that allow for the ability to "crosswalk" estimates of prevalence of disability across surveys, e. Design Personal interview.

Content To be determined. Disability Measures Measures of physical disability and mental impairments. Specifics yet to be determined. Coverage National household population age 18 to Sample To be determined. Products To be determined. Purpose To measure the incidence and prevalence of use of illicit drugs, licit drugs used illegally, alcohol, and tobacco. To analyze patterns and demographic correlates of substance use. Sensitive data are accessed through self-administered answer sheets. Continuous data collection with calendar year survey periods.

Content Drug-related variables, e. Disability Measures Questions on respondent problems associated with drug use are used to measure drug dependence. Coverage U. Sample Stratified multistage area probability sample. Sample size: 18, Future Survey planned for proposed for Comments Rapid reporting of survey results six months after data collection.

Purpose Originated from the need to provide valid estimates of health care spending by different age groups, to describe the effects of the Medic-are program on its beneficiaries, and to model the effects of proposed program changes. Content Utilization, sources of payments for services, health insurance coverage, health status and functioning, access and satisfaction.

Only sample survey of Medicare disabled program beneficiaries. Coverage All Medicare beneficiaries; community and institutional residents. Sample 12, round one ; 11, two ; 11, three ; 12, four ; approximately 16, eleven ; survey is supplemented annually and subject to rotation after round thirteen. Products Public Use file for Round 1 and Round 4 is available linked with Medicare claims ; fully linked public use file will be available in Future Plans to follow some individuals for up to four years. Comments functioning questions indicate severity of impairment by asking if the person gets help, if someone stands by, or if special equipment is used data are linked to Medicare administrative files, providing information on services used because it has three rounds per year, facilitates analysis of changes in the beneficiaries and their use of services; follows individuals through different care settings surveys those who have Medicare coverage: a not nationally representative of individuals under age 65 who have a disability or of the potentially disabled population, but b is representative of the population age 65 and over no disability indicators for cognitive impairment, severe mental illness, or general emotional problems longitudinal design permits observation of individual changes over time National Comorbidity Survey Contact Ronald Kessler, University of Michigan Sponsor U.

Purpose A congressionally mandated survey designed to study the co-morbidity of substance use and non-substance psychiatric disorders; the survey examines not only prevalence and incidence, but also risk factors. Design Stratified, multistage area probability sample; supplemental survey of nonrespondents. Content Affective, anxiety, substance use, and other psychiatric disorders; risk factor questions such as parental psychopathology, childhood family adversity, social networks and support, stressful life events and activities; utilization of services; unmet need.

Disability Measures Disability days and work cutback days to mental disorders, substance use disorders, and other reasons; truncated set of ADL-type questions.

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Coverage Persons aged in civilian, noninstitutionalized population in the 48 contiguous States; supplemental sample of students living on campus or in group housing. Sample 8, respondents Products Public use data tapes will be available in the next couple of years.

Future Possible reinterview and a new cross-section of data for the year Comments a first survey to administer a structured psychiatric interview to a national probability sample in the United States use of the Composite International Diagnostic Interview CIDI , which can be administered by trained interviewers who are not clinicians also used in the ECA capability of studying regional variation and urban-rural differences relies on retrospective reports to assess prevalence of lifetime disorders; need for longitudinal data to meet this limitation diagnostic assessment based on a single structured interview National Health and Nutrition Examination Survey NHANES Contact Vicki Burt ext.

Purpose To assess the health status of the US population; to estimate the national prevalence and investigate trends in selected disease and risk factors; and to monitor trends in prevalence, awareness, treatment, and control of diseases. Design Respondents are interviewed at home, then examined, tested and interviewed again in a mobile examination center. Includes questions on use of assistive devices. Respondent are asked about receipt of Social Security benefits due to disability.

Coverage Civilian, non-institutionalized population aged two months and older. Products Public use tapes, publications. Purpose To measure changes in individual participants' characteristics between NHANES I and NHEFS; to track morbidity, mortality and institutionalization associated with suspected risk factors; and to provide a natural history of chronic disease and functional impairment.

Design Personal interviews or telephone interviews are conducted with subjects or their proxies. Also collected are nursing home and hospital records of overnight stays, and death certificates of decedents. Content All waves were. Collects morbidity, disability, and mortality data; demographic information; medical history and health care facility stays; functional status; health habits and risk factors such as blood pressure, smoking, cholesterol levels, alcohol consumption, nutritional deficiencies, estrogen use, impaired pulmonary function, and weight.

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Disability Measures Extensive functioning measures. Also questions on chronic diseases. Sample 14, persons between the ages of 25 and 74 in Products Public use data tapes and documentation are available from the National Technical Information Service. Data from the study will be released in Future No current plan to reinterview subjects after the follow-up; however, there are plans to continue to follow passively through death certificates.

Purpose To provide nationally representative data on the health status, health related behavior, and use of health services by the U. Design Core questionnaire on health and disability status. Periodic supplements on selected topics; e. Face-to-Face home interviews with trained Census personnel. Content Demographics, health and disability status, acute and chronic conditions, use of doctors and hospitals, income, health insurance, and program participation.

Disability Measures The core questionnaire measures limitations at four levels: unable to perform major activity, limited in major activity, limited in nonmajor activity, and not limited in activity. Looks at prevalence of chronic conditions or impairments and restricted activity days. Sample 50, households , persons annually; in will include approximately 40, households and , persons. Products Publications e. Future Major redesign of questionnaire for is underway.

Comments repeated cross-sectional, with capability for providing longitudinal information; can establish trends in prevalence of disability using core, cannot estimate how many ADL or IADL limitations a person has core interview does not have information on cognitive impairment; does include information about chronic and mental conditions; new design will include measures of depression only asked IADL questions in certain circumstances no measures of assistive devices within core, however, this subject was covered in supplement for those age 65 and above, core asks if need help with ADLs and IADLs, but not for each ADL and IADL individually; also asked of persons under age 65 who report limitations While there are some gaps with disability measures in the core interview, many of these issues are addressed in the various supplements, such as those described below.

For the special questionnaires, one adult is subsampled from the family; self-response is required. In some supplements, questions are asked of everyone in household, and proxy responses are allowed. Comments questions regarding development, learning, and behavior may give an indication of the number of individuals with such problems, but there is insufficient information regarding severity Mental Health Supplement Disability Measures Diagnosis of major mental illness, ADLs, IADLs, social functioning, disability payment due to mental illness.

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Comments duration and severity of problems in functioning perhaps the best information currently available about the disabilities of adults with serious mental illness; however, it contains no reliable information on children with serious mental illness Supplement on Assistive Devices Disability Measures Sets of questions about specific devices for mobility, hearing, vision, and speech; special features in the home designed for disabled persons.

Comments may slightly overestimate those with chronic illnesses or impairments who use devices such as wheelchairs, etc. Comments mental health questions do no relate to a specific diagnosis of illness; do not know what the reason is for certain emotions Access to Care Survey Disability Measures Focuses on unmet needs, particularly on the acute care side; asks what kinds of services were needed. Design Separate questionnaires for disabled elderly in the community and those in institutions. Occasional supplements on informal caregiving , , healthy aging , and decedents , Household interviews were screened via telephone.

Content Demographics, health and disability status, measures of physical and cognitive functioning; housing and neighborhood characteristics; use of medical providers and prescription medicines; use of formal and informal long-term care; health insurance; income and asset information. Disability Measures Institutional questionnaire looks at cognitive functioning and limitations in ADLs. Community questionnaire asks about limitations in ADLs and IADLs, cognitive functioning, who provides help, and use of devices and personal assistance.

Sample 5,, community interviews; 1, institutional interviews. Products Publications; public use data tapes. Future Decision to be made about survey. Comments excellent source of information about disability in the older population provides large samples of the "oldest" old population currently have four points in time to use in longitudinal comparisons includes information on severity of limitations and use of assistive devices some questions are not asked in both community and institutional questionnaires, making it difficult to compare people moving from different care settings for persons in institutions, ADL questions are answered by a proxy which may or may not be beneficial National Medical Expenditure Survey-Household Survey, Survey of American Indians and Alaska Natives, Institutional Population Component NMES Contact Barbara Altman Sponsor Agency for Health Care Policy and Research AHCPR Frequency Decennial approximately : , Purpose To obtain information on health care utilization, expenditures, and sources of payment.

Design Separate surveys for nationally representative samples of the civilian north institutionalized population, American Indian and Alaskan Native population, and for residents of nursing homes and facilities for persons with mental retardation. Four or five rounds each survey year. Content Demographics; health status; health care access and utilization for the complete year, expenditures and sources of payment; insurance status; employment information; income and assets; facility information and institutional expenditures in institutional survey.

Disability Measures Detailed ADL and IADL measures; duration and intensity of impairment; use of devices; indicators of work and activity limitations; modified indicator of physical functioning; yearly total of disability days; indicators of receipt of disability benefit; ICD-9 coding indicating individual conditions; separate question asks specifically about mental retardation, cerebral palsy, spina bifida, and autism. Coverage Civilian non-institutionalized population; institutionalized population in nursing and board and care homes and facilities for persons with mental retardation.

Sample Approximately 14, households in civilian population and 2, households in the American Indian and Alaskan Native population; nursing and personal care homes; facilities for persons with mental retardation; 5, residents of nursing and personal care homes; 4, residents of MR facilities. Future New survey planned for currently in pretest stage; will not include the mental retardation facilities or special data collection on American Indians or Alaska Natives.

Comments institutional population sample tracks resident's movement between facilities and into the community cannot provide prevalence estimates for conditions associated with disability provides multiple measures of disability that allow for comparisons or creation of combination of measures provides possibility of analysis at the family level and at the individual level National Mortality Followback Survey NMFS Contact Jim Spitler James A. Frequency Intermittent: , , , , , Purpose To supplement information on the death certificate with information on important characteristics of the decedent that may have affected mortality.

Content Demographic characteristics, socioeconomic status, health status, lifestyle patterns, measures of physical and cognitive functioning, use of formal and informal long-term care, health insurance, income and asset information, cause of death, and lifetime nursing home use. Disability Measures Questions asked of next-of-kin concern memory impairment, decedent's need for assistance or special equipment to perform specific ADLs during last year of life, and presence of specific chronic conditions. Coverage For survey adults aged 25 and over who died in For survey, persons aged 15 and over who died in Sample Information is gathered on approximately 20, deaths selected from the Current Mortality Sample; a 10 percent sample of death certificates were received from the States.

Products Publications, public use tapes. CD-Rom for surveys after Design Telephone interview of approximately 25 minutes with persons with disabilities. Proxies used when person with the disability was unavailable or unable to be interviewed. Also a comparison group of a sample of 1, adults without disabilities were asked a number of the survey questions. Many questions from survey were also asked in a survey.