Implications of Electronic Health Records for Disability Policy, Present and Future Presented at: The Many Faces of  Perso...
Background Material <ul><li>Stapleton, O’Day, Livermore and Imparato, 2005 “Dismantling the Poverty Trap: Disability Polic...
Overview <ul><li>The potential for EHR to improve today’s public disability programs serving  working-age  adults </li></u...
Today’s Programs <ul><li>SSDI and SSI </li></ul><ul><ul><li>~9 million working-age beneficiaries </li></ul></ul><ul><ul><l...
Government Expenditures for Working-Age People with Disabilities, FY2002 <ul><li>Federal expenditures: $226B </li></ul><ul...
EHR has the potential to greatly reduce administrative cost and improve the quality of service <ul><li>All programs use me...
Case Study: SSDI/SSI <ul><li>The disability determination process is broken </li></ul><ul><ul><li>About 1 of 3 allowances ...
What if universal PHR records were available? <ul><li>The applicant could give a disability examiner immediate access to t...
With restricted access to the PHR database for program administration and research <ul><li>SSA could potentially identify ...
VA disability programs may be a valuable laboratory <ul><li>VistA is in place and in the EHR vanguard </li></ul><ul><li>VA...
Disability Programs will Evolve with EHR <ul><li>The current support system for people with disabilities is the wrong targ...
The current support system is out of step with: <ul><li>The ADA, the Rehab Act, and IDEA </li></ul><ul><ul><li>Recognize t...
The Current Support System Creates a Poverty Trap for Many People with Disabilities <ul><li>Many have limited skills or fa...
Other Major Support System Problems <ul><li>Incredibly complex </li></ul><ul><ul><li>Multiple programs </li></ul></ul><ul>...
Employment of people with disabilities is low and has been declining <ul><li>Measurement is problematic and controversial ...
The support system for people with disabilities is on a collision course with the “deficit bus” <ul><li>The factors drivin...
A transformation toward policies that emphasize greater self-sufficiency and less paternalism is underway  <ul><li>Objecti...
Some of the Challenges to Change <ul><li>The population is extremely heterogeneous </li></ul><ul><ul><li>A system that ser...
Some key characteristics of a successfully reformed system <ul><li>Greater consumer control </li></ul><ul><li>Replacement ...
EHR in a 21 st  Century System <ul><li>Political viability requires evolution of EHR toward consumer control, an important...
EHR in a 21 st  Century System (cont.) <ul><li>A PHR system with restricted access for program administrators would enable...
EHR in a 21 st  Century System (cont.) <ul><li>A PHR system would support greater cross-program uniformity of medical defi...
Conclusion <ul><li>Broad-based EMR and, especially, PHR systems could greatly improve the administration of the current pu...
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  1. 1. Implications of Electronic Health Records for Disability Policy, Present and Future Presented at: The Many Faces of Person-Centric Electronic Health Systems: A National Symposium to Examine Use-Cases for Healthy, Chronically Ill and Disabled User Communities Claremont Information and Technology Institute Claremont Graduate University Presented by: David C. Stapleton Director Cornell University Institute for Policy Research December 2, 2005
  2. 2. Background Material <ul><li>Stapleton, O’Day, Livermore and Imparato, 2005 “Dismantling the Poverty Trap: Disability Policy for the 21 st Century, Policy Brief.” http:// www.ilr.cornell.edu/edi/pubs.cfm </li></ul><ul><li>Stapleton and Burkhauser (eds.), 2003, The Decline in Employment of People with Disabilities: A Policy Puzzle , Kalamazoo: W. E. Upjohn Institute. </li></ul><ul><li>Goodman and Stapleton (forthcoming) “Federal Program Expenditures for Working-age People with Disabilities.” J. of Disability Policy Studies . </li></ul><ul><li>Social Security Advisory Board, Disability Decision Making: Data and Materials , 2001 www.ssab.gov </li></ul><ul><li>Social Security Advisory Board, The Social Security Definition of Disability , 2003 www.ssab.gov </li></ul><ul><li>D.C. Stapleton and M.D. Pugh, Evaluation of SSA’s Disability Quality Assurance (QA) Processes and Development of QA Options that will Support the Long-term Management of the Disability Programs. Report to the Social Security Administration, 2001. </li></ul>
  3. 3. Overview <ul><li>The potential for EHR to improve today’s public disability programs serving working-age adults </li></ul><ul><li>The potential for EHR to support and shape tomorrow’s public disability programs </li></ul>
  4. 4. Today’s Programs <ul><li>SSDI and SSI </li></ul><ul><ul><li>~9 million working-age beneficiaries </li></ul></ul><ul><ul><li>Over $100B in cash support each year </li></ul></ul><ul><li>Medicare and Medicaid </li></ul><ul><ul><li>Linked to SSDI & SSI </li></ul></ul><ul><ul><li>Medicaid covers many others with disabilities </li></ul></ul><ul><ul><li>Over $100B each year </li></ul></ul><ul><li>Veterans Compensation, Disability Pensions and Health </li></ul><ul><li>Housing </li></ul><ul><li>Food Assistance </li></ul><ul><li>TANF and EITC </li></ul><ul><li>Education </li></ul><ul><li>Vocational Rehabilitation </li></ul><ul><li>Transportation </li></ul><ul><li>Assistive Technology </li></ul>
  5. 5. Government Expenditures for Working-Age People with Disabilities, FY2002 <ul><li>Federal expenditures: $226B </li></ul><ul><ul><li>11.3% of federal outlays (up from 6.1% in 1986) </li></ul></ul><ul><ul><li>2.2% of GDP (up from 1.4%) </li></ul></ul><ul><li>State expenditures on federal-state programs in FY2002: $50B </li></ul><ul><ul><li>$45B for Medicaid </li></ul></ul><ul><li>$207B (75%) to support SSDI/SSI recipients </li></ul><ul><li>$21B (7.5%) for programs to support veterans </li></ul><ul><li>$4B (1.5%) for education, training, and employment support </li></ul>
  6. 6. EHR has the potential to greatly reduce administrative cost and improve the quality of service <ul><li>All programs use medical data in a variety of ways </li></ul><ul><ul><li>Benefit administration </li></ul></ul><ul><ul><ul><li>Eligibility determination </li></ul></ul></ul><ul><ul><ul><li>Tailoring of benefits to the beneficiary </li></ul></ul></ul><ul><ul><li>Management and Research </li></ul></ul><ul><ul><ul><li>Resource allocation </li></ul></ul></ul><ul><ul><ul><li>Identification of prevalence trends and cost drivers </li></ul></ul></ul><ul><li>Use of existing data for both purposes is limited by the fact that program data are for program participants only </li></ul><ul><ul><li>Data on those in program target populations, including those not served, are scarce </li></ul></ul><ul><ul><ul><li>Aborted National Survey of Health and Activity (a.k.a. Disability Evaluation Study) </li></ul></ul></ul><ul><ul><li>Basic questions are unanswered: </li></ul></ul><ul><ul><ul><li>How many are not being served and what are their characteristics? </li></ul></ul></ul><ul><ul><ul><li>If a program change is made, how will utilization and expenditures change? </li></ul></ul></ul>
  7. 7. Case Study: SSDI/SSI <ul><li>The disability determination process is broken </li></ul><ul><ul><li>About 1 of 3 allowances are made only after an initial denial followed by an appeal </li></ul></ul><ul><ul><li>Mean processing times </li></ul></ul><ul><ul><ul><li>Initial decision: ~ 3 months </li></ul></ul></ul><ul><ul><ul><li>Appeals to administrative law judge: ~11 months </li></ul></ul></ul><ul><ul><ul><li>Appeals to the Appeals Council: ~10 months </li></ul></ul></ul><ul><li>Since 1994, extensive SSA efforts to fix the process have yielded only limited improvements </li></ul><ul><li>Problems of obvious relevance to EHR </li></ul><ul><ul><li>Collection of applicant medical records from providers </li></ul></ul><ul><ul><li>Quality of data obtained from providers </li></ul></ul><ul><ul><ul><li>Hard to decipher </li></ul></ul></ul><ul><ul><ul><li>Difficult to find relevant information in paper records </li></ul></ul></ul><ul><ul><ul><li>Non-uniform terms and recording practices </li></ul></ul></ul><ul><ul><ul><li>Biased toward allowance </li></ul></ul></ul><ul><ul><li>New medical record information is often added late in the process </li></ul></ul><ul><ul><ul><li>Delays in obtaining information </li></ul></ul></ul><ul><ul><ul><li>Changes in conditions </li></ul></ul></ul><ul><ul><ul><li>Strategic behavior of applicant </li></ul></ul></ul>
  8. 8. What if universal PHR records were available? <ul><li>The applicant could give a disability examiner immediate access to the applicant’s PHR records </li></ul><ul><li>Records would be complete as of the time of the application, and would be updated in real time when new medical information is generated by providers </li></ul><ul><li>Medical data standards promulgated to support PHR would increase uniformity of reporting and could incorporate specifications of particular interest to SSA </li></ul>
  9. 9. With restricted access to the PHR database for program administration and research <ul><li>SSA could potentially identify and sanction providers with a strong pro-allowance bias, and therefore rely more heavily on PHR evidence for program administration </li></ul><ul><li>SSA and CMS could better determine the size and medical characteristics of the target population </li></ul><ul><li>SSA and CMS could better determine how programmatic changes would affect applications, awards and program expenditures </li></ul><ul><li>SSA and CMS could better understand the medical needs of program beneficiaries, and the extent to which those needs are met in an efficient manner by health care providers, to support program changes that would improve medical service delivery to beneficiaries </li></ul>
  10. 10. VA disability programs may be a valuable laboratory <ul><li>VistA is in place and in the EHR vanguard </li></ul><ul><li>VA provides medical and income supports to a large number of veterans with disabilities </li></ul>
  11. 11. Disability Programs will Evolve with EHR <ul><li>The current support system for people with disabilities is the wrong target for EHR development </li></ul><ul><li>Major, comprehensive system reforms are needed </li></ul><ul><li>EHR can play a critical role in supporting and shaping those reforms </li></ul>
  12. 12. The current support system is out of step with: <ul><li>The ADA, the Rehab Act, and IDEA </li></ul><ul><ul><li>Recognize the abilities of people “with disabilities” </li></ul></ul><ul><ul><li>Aspirations and rights to be included in mainstream social activities </li></ul></ul><ul><ul><li>Aspirations for greater self-sufficiency and improved standard of living </li></ul></ul><ul><ul><li>Existing programs reflect past paternalistic approach </li></ul></ul><ul><li>Advances in the understanding of “disability” </li></ul><ul><ul><li>Medical model of disability has been replaced by the social model </li></ul></ul><ul><li>Advances in medicine and technology </li></ul>
  13. 13. The Current Support System Creates a Poverty Trap for Many People with Disabilities <ul><li>Many have limited skills or face other challenges to attaining a reasonable standard of living on their own </li></ul><ul><li>The poverty trap: </li></ul><ul><ul><ul><li>Live on public cash and non-cash benefits that are sufficient to attain a low standard of living, or </li></ul></ul></ul><ul><ul><ul><li>Self-support through work at an equally low standard of living </li></ul></ul></ul><ul><li>Programs do not adequately encourage and help people with disabilities to help themselves </li></ul>
  14. 14. Other Major Support System Problems <ul><li>Incredibly complex </li></ul><ul><ul><li>Multiple programs </li></ul></ul><ul><ul><li>Multiple federal and state agencies working independently </li></ul></ul><ul><ul><li>Hard to navigate </li></ul></ul><ul><ul><li>Program interactions </li></ul></ul><ul><ul><li>Little standardization of disability definitions, data collection, procedures </li></ul></ul><ul><li>Consumers often have limited options and control </li></ul><ul><li>Why would anybody work under these circumstances? </li></ul>
  15. 15. Employment of people with disabilities is low and has been declining <ul><li>Measurement is problematic and controversial </li></ul><ul><li>Causes are unclear </li></ul><ul><ul><li>Reductions in the incentive to work are the most likely cause </li></ul></ul><ul><li>People with disabilities, as a group, did not benefit from the 1990s economic expansion </li></ul>
  16. 16. The support system for people with disabilities is on a collision course with the “deficit bus” <ul><li>The factors driving large deficits will only get worse as the baby boom generation retires </li></ul><ul><li>Disability expenditures are growing much faster than total outlays </li></ul><ul><li>Already significant discussions of cuts to Medicaid, SSI, SSDI </li></ul><ul><li>Cuts will be painful because the only options Congress has are to tighten eligibility and reduce payments </li></ul>
  17. 17. A transformation toward policies that emphasize greater self-sufficiency and less paternalism is underway <ul><li>Objectives: </li></ul><ul><ul><li>Increase earnings and total income </li></ul></ul><ul><ul><li>Reduce growth of public expenditures </li></ul></ul><ul><ul><li>Give greater control to consumers </li></ul></ul><ul><li>The resources reforms can draw on: </li></ul><ul><ul><li>The underutilized abilities of this population </li></ul></ul><ul><ul><li>The waste in the current support system </li></ul></ul>
  18. 18. Some of the Challenges to Change <ul><li>The population is extremely heterogeneous </li></ul><ul><ul><li>A system that serves one subpopulation well may serve another poorly </li></ul></ul><ul><ul><li>The system must be able to tailor support to the medical and other characteristics of the individual </li></ul></ul><ul><ul><li>Example of what could go wrong: If applied indiscriminately, changes that promote self-sufficiency through work will harm many people – those we would not expect to contribute substantially to their own support </li></ul></ul><ul><li>History and competing interests suggest that the multiple federal and state agencies responsible for the relevant programs will have a difficult time cooperating </li></ul><ul><li>Beating the deficit bus </li></ul><ul><ul><li>Slow, incremental change is not enough </li></ul></ul>
  19. 19. Some key characteristics of a successfully reformed system <ul><li>Greater consumer control </li></ul><ul><li>Replacement of “inability to work” as the definition of disability for purposes of eligibility with a definition that is based on medical conditions and functionality </li></ul><ul><li>Elimination of automatic receipt of cash, health care, and other support, given program eligibility </li></ul><ul><li>Rebuttable assumption of ability to work </li></ul><ul><li>A “work security” benefit that helps and encourages people with disabilities to help themselves, including partial benefits for some </li></ul><ul><li>Greater integration of programs and standardization of rules and processes </li></ul><ul><li>Greater accountability for consumers, providers, and program administrators </li></ul>
  20. 20. EHR in a 21 st Century System <ul><li>Political viability requires evolution of EHR toward consumer control, an important feature of a Personal Health Record (PHR) system </li></ul><ul><li>Programmatic reliance on a PHR system requires: </li></ul><ul><ul><li>Limiting the ability of the consumer to exclude information from the record </li></ul></ul><ul><ul><li>Restricted access to the PHR database for research and management purposes. </li></ul></ul><ul><li>Can these be done in a manner that is consistent with PHR? </li></ul><ul><li>If future disability programs rely on a PHR system, the programs’ potential consumers will have an incentive to ensure that they have complete and accurate records. </li></ul>
  21. 21. EHR in a 21 st Century System (cont.) <ul><li>A PHR system with restricted access for program administrators would enable individuals who might need and qualify for some form of assistance because of a specific medical condition or functional limitation to readily verify that condition </li></ul><ul><ul><li>Temporary unemployment benefits and job re-entry assistance </li></ul></ul><ul><ul><li>Disability earned income tax credit </li></ul></ul><ul><li>A PHR system would make medical information needed to deliver various non-medical services, as well as medical services, readily available to service providers </li></ul><ul><ul><li>E.g.: job search services, assistive devices, transportation assistance </li></ul></ul>
  22. 22. EHR in a 21 st Century System (cont.) <ul><li>A PHR system would support greater cross-program uniformity of medical definitions in rules, regulations and processes </li></ul><ul><ul><li>International Classification of Functioning, Disability and Health ( ICF) </li></ul></ul><ul><li>A PHR system would support sharing of vital information across programs </li></ul><ul><ul><li>Benefit coordination </li></ul></ul><ul><ul><li>Learning from each other </li></ul></ul><ul><ul><li>Resource transfer </li></ul></ul><ul><li>A PHR system would support system transparency </li></ul><ul><ul><li>Required for fiscal and political sustainability </li></ul></ul><ul><ul><li>Easier to measure performance </li></ul></ul>
  23. 23. Conclusion <ul><li>Broad-based EMR and, especially, PHR systems could greatly improve the administration of the current public disability programs </li></ul><ul><li>More importantly, PHR systems could play a critical role in the transformation of the current programs to ones that place a greater emphasis on self-sufficiency and consumer choice </li></ul><ul><li>To be of greatest value, a PHR system needs to: </li></ul><ul><ul><li>Be universal </li></ul></ul><ul><ul><li>Establish and promulgate uniform standards, with input from disability programs </li></ul></ul><ul><ul><li>Have consumer records that can readily be accessed by the consumer and, with the consumer’s consent, program staff and various providers </li></ul></ul><ul><ul><li>Be accessible for research and management on a restricted basis </li></ul></ul>

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