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Update of ASPE Activities Related to Community-Integration Executive Order for People with Disabilities

Publication Date
Nov 30, 2003

U.S. Department of Health and Human Services

Update of ASPE Activities Related to Community-Integration Executive Order for People with Disabilities

Linda Bergofsky

U.S. Department of Health and Human ServicesOffice of the Assistant Secretary for Planning and Evaluation

December 1, 2003

PDF Version: (12 PDF pages)

This paper was compiled for the New Freedom Interagency Workgroup by the Office of Disability, Aging and Long-Term Care Policy within the U.S. Department of Health and Human Services. For additional information, you may visit the DALTCP home page at or contact the DALTCP representative, Linda Bergofsky, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. Her e-mail address is:

The opinions and views expressed in this report are those of the author. They do not necessarily reflect the views of the Department of Health and Human Services.













National Survey of Direct Care Workers: ASPE has designed a national survey of nursing assistants in long-term care (LTC) to examine wages, working conditions, worker perception's of their workplace, job responsibilities, and the role of supervision. The survey draft is complete and should be pre-tested in early 2004. The survey will be fielded in conjunction with the National Center for Health Statistics, National Nursing Home Survey and we expect the survey to go into the field in Summer 2004, and for analysis to be completed by December 2004.

National Initiative to Improve the Recruitment and Retention of the Long-Term Care Paraprofessional Workforce: ASPE is undertaking a multi-year effort. To date, activities have included: (1) Development of the National Clearinghouse that highlights promising practices of providers related to the recruitment and retention of direct care workers. Website contains 40+ practices at; (2) Preparation of Issue Briefs that highlight issues important to states and providers such as wage pass-throughs, and on-the-job training; and (3) Development of a resource guide for measuring LTC work. This guide is intended to help LTC organizations improve their use of measurement tools to understand direct care workforce problems. The guide was co-funded by the Office of Policy of the Department of Labor.

Better Jobs/Better Care $15.5 Million Initiative of Atlantic Foundation and the Robert Wood Johnson Foundation (RWJF): ASPE helped facilitate the development of this demonstration and applied research program to create changes in policy and practice that will lead to the recruitment and retention of high-quality paraprofessional or "direct care" workers in both nursing homes and home and community-based settings. The demonstration and evaluation grants have been awarded and the first annual grantee meeting was convened in November 2003. More information can be found at

National Symposium on the Recruitment and Retention of Direct Care Workers: ASPE, along with the Department of Labor, is convening a Symposium to bring together providers, researchers, policymakers and state officials to discuss and debate policy and programs related to the future of the direct care workforce. With a number of efforts already underway to recruit, retain and train direct care workers, this Symposium will address the program intervention issues, and will synthesize the empirical data and qualitative experiences of private and public efforts. The Symposium will have approximately 150 attendees and will be held in late Spring 2004.

Coordination with Department of Labor on Apprenticeship and Training: ASPE has been working with the Department of Labor's Employment and Training Administration (ETA) on possible apprenticeship programs to enhance training and create greater career ladders for direct care workers.

Assessing the Suitability of TANF Recipients as Long-Term Care Workers: For this project, ASPE will assess the suitability of skills, employment history, and characteristics of TANF recipients in direct care jobs in the LTC industry. By analyzing survey data and conducting case studies in selected states, the study will describe the personal characteristics and skills of TANF recipients as they relate to their potential in a LTC setting, lessons learned from programs that have attempted to link TANF recipients with positions in the LTC field, and potential ways that workforce development systems and welfare-to-work policies and practices have facilitated or hindered efforts to link recipients with jobs in the industry.


Update of Technical Assistance Compendium: ASPE updated the Compendium of HHS Activities related to the implementation of the Community Integration Executive Order. The Compendium can be found on the ASPE website at

Handbook of Medicaid Services for People with Severe Mental Disorders: ASPE is completing a multi-year project to develop a Handbook that describes and clarifies Medicaid's federal rules and regulations governing the application of Medicaid Options--particularly the Rehabilitation, the Targeted Case Management, and Clinic Options--in creating an array of community-based mental health services for working age adults with severe mental disorders. The handbook should be available January 2004.

Lexicon of Technologies in Long-Term Care Settings: ASPE is developing comprehensive and systematic information on existing and emerging technologies in LTC care settings, documenting and evaluating ease of use, cost benefit ratio, and contribution to the quality of life of people with disabilities and caregivers. Included in the report will be an examination of the barriers to the implementation of such technologies.

Community Alternatives to Psychiatric Residential Treatment for Children and Youth with SED: The purpose of this project is to: understand barriers that impede the ability of states to develop community alternatives to psychiatric residential treatment facilities for children and youth with serious emotional disturbances (SEDs); identify the creative ways that states have developed these alternatives, including a description of the supports and services they provide; and portray how states have organized available federal, state and local funding for community alternatives for children with serious emotional disturbances who would otherwise be in psychiatric residential treatment facilities. This information will be used by the Federal Government to design, enhance, and/or administer programs, which provide community services as an alternative to psychiatric residential treatment for children and youth with serious emotional disturbances.

Alternative Risk Adjustment Approaches to Assessing the Quality of Home Health Care: The purpose of this project is to develop and test alternative modeling approaches to assessing the quality of home health care. There are a total of 41 quality measures used for home health care in the context of the outcome-based quality improvement (OBQI) framework. The modeling approach currently used for risk adjustment of home health quality measures is a data-driven "stepwise" approach in which a separate set of risk factors is used for each OBQI quality measure. This project will develop a "theory- and evidence-based" modeling approach in which a common set of risk factors will be used for all OBQI quality measures, supplemented by additional risk factors specific for each indicator, if necessary. The project will also examine the feasibility of using risk factors from other administrative data sources (e.g., Medicare home health claims) in addition to the Outcome and Assessment Information Set (OASIS), the data source from which the home health quality measures and factors used to risk adjust these quality measures are drawn. Findings from this project will contribute to CMS's future plans for continued refinement of risk adjustment and outcome measures. These findings will also provide home health care providers with a better understanding of current and alternative modeling approaches to risk adjustment of home health quality indicators, an issue they have long expressed their interest in learning more details. Finally, these findings will be instrumental in supporting the efforts of the Secretary's Advisory Committee on Regulatory Reform to streamline the OASIS instrument by identifying the relative contribution of each OASIS item in risk adjustment models and outlining what items can be excluded from the instrument without jeopardizing the reliability of the risk adjusted quality indicators and explanatory power of the risk adjustment models.

State Assisted Living and Residential Care Policy Compendium: ASPE originally funded the National Academy for State Health Policy to do its state-by-state analysis and Compendium of regulations related to residential LTC services. The Retirement Research Foundation funded the study in 2000 and 2002. Since then it has become an invaluable resource to state and federal policymakers, consumer groups, providers, and the public at-large about the state of state policy in residential LTC, in particular assisted living. ASPE will continue the support in 2003 (for a 2004 edition). This is an important inventory of a continually changing landscape of state assisted living and residential care policy.


Implementation Evaluation and Case Studies for Medicaid Buy-Ins: ASPE released a series of reports that compare the design and implementation experiences of different states opting a Medicaid Buy-In for PWDs, and used the information gathered to inform both state and federal policymakers about strategies for improving systems that support the employment of people with disabilities. The reports can be found at:

Issue Briefs on Employment Supports for People with Disabilities: ASPE released a series of reports investigating the factors that affect the ability of people with significant disabilities to work. These products provide information to people with disabilities themselves and others interested in improving employment opportunities for people with significant disabilities. The report can be found at:


State Innovation Grants: ASPE funded three grants among last year's planning grantees totaling approximately $1 million to promote innovative services to people with disabilities (over and under 65).


Analysis of Liability Issues for Community Workers: An Issue Brief is being prepared for ASPE that describes how state liability laws impact community workers such as consumer-directed and informal caregivers. The brief will be available on the ASPE website.

Effect of Reducing Falls on Long-Term Care Expenses: This project is aimed at developing a range of possible strategies or "interventions" to reduce an older person's risk of falling in their home, and at developing potential methods for conducting a formal evaluation to determine the effectiveness of the aforementioned possible interventions. ASPE anticipates that the evaluation will be based on a controlled-experimental design. For example, a random sample of community-dwelling elders would receive a focused intervention that could include home safety, environmental hazard and health status assessment, and comprehensive and periodic follow up to reduce the risk. A matched control group will receive no intervention. For convenience, the sample will be limited to older persons who are LTC insurance policy holders. The contractor will produce a final report that contains a detailed description of proposed interventions and a methodology for selecting the sample, collecting data, and measuring outcomes to determine the effectiveness of the intervention (i.e., reducing the incidence of falls and associated acute health and LTC costs).

Study of Negotiated Risk Agreements in Assisted Living Facilities: ASPE has an interest in better understanding of how states currently treat negotiated risk agreements in assisted living settings as a matter of public policy and how providers currently use risk agreements as a tool for balancing safety and risk for consumers. States currently have primary oversight responsibility for assisted living. To date, 13 states require a negotiated risk process as a condition for licensure. The primary deliverable is a report that clearly describes the range of issues with negotiated risk agreements, including how and why states are increasingly requiring them through regulation, how providers are interpreting the requirement, how negotiated risk happens in practice, and the impact on or experience of consumers and providers. Of particular interest is how state policy and providers address mental competence in the context of negotiating risk with residents. A final report is expected September 2004.

Implications of the Nurse Practice Act on Workforce: ASPE is preparing a descriptive analysis of Nurse Practice Acts in each state and examining their potential impact on direct care worker's and consumer-directed care models.


Examination of Rider 37: In part as a response to the 1999 Olmstead vs. L.C. decision, in 2001, the Texas state legislature included a rider in its appropriations act to promote choice, independence, and community integration for nursing home residents who express a desire to live in the community. This program, commonly referred to as Rider 37, allows money that is being spent for a person living in a nursing facility to be moved to the state's community-based care budget when an individual elects to move to the community. Any interested Medicaid nursing facility resident who meets medical and functional eligibility criteria for one of the state's community care waivers is eligible, regardless of his/her length of stay under Medicaid. To date there have been 1,150 cumulative transitions. This model of "money following the person" or MFP comports with the Administration's broad goals to promote home and community-based services as part of its New Freedom Initiative. This project will conduct field research and analyze state administrative data to understand the experience Texas has had in implementing this MFP initiative.


Cash and Counseling--The Next Steps: New findings from the Cash and Counseling Demonstration controlled experimental design evaluation were reported in the journal Health Affairs (online) on November 19. The co-sponsors of the research--the Robert Wood Johnson Foundation and HHS--issued a joint press release. Previously published findings from the evaluation (Health Affairs, March 2003) focused on treatment/control group comparisons with respect to quality of care; the latest article focuses on comparisons with respect to access and costs. Experimental group participants (those who received the allowance and arranged their own services) had significantly greater access to personal assistance services than members of the control group (those who could only receive personal care from traditional Medicaid-authorized agency providers. The analyses indicate that agency providers were not able to deliver all the care that beneficiaries were entitled to receive: the agencies did not deliver any services at all to some beneficiaries and, on average, those who did receive services received only 60% of the hours authorized in their care plans. Although their improved access to care meant that experimental group members had higher Medicaid personal assistance services costs than control group participants, experimental group members also used significantly less nursing home care than control group participants. Over a two-year period, total Medicaid costs were the same for both groups. That is, savings from reduced nursing home use fully offset the increased costs associated with "cash and counseling" participants' improved access to Medicaid-funded personal assistance in the community.

The Robert Wood Johnson Foundation and HHS (specifically, ASPE and AoA) are preparing to co-sponsor a new round of "cash and counseling" program replications in ten states. HHS and the Robert Wood Johnson Foundation will jointly funding technical assistance; however, all grants to states will be funded entirely by the Foundation. The "call for proposals" is expected to be issued in December; states will have 3 to 4 months to prepare their grant applications and awards will be made in the summer of 2004.


Case Studies of Nursing Home Transition Programs: ASPE recently completed case studies of Nursing Home Transition Programs in eight states. The programs being evaluated were developed and implemented with funding from an ongoing grant initiative sponsored by the CMS and ASPE. Each case study attempted to determine the most significant barriers faced by nursing home residents in returning to the community, and to glean the relative success or failure of the strategies used by grantees to overcome these barriers. As CMS and ASPE intend to continue making additional grants in this area, an evaluation of grantee activity will assist federal policymakers in further grant making, and state policymakers in developing transition programs. Due to the diversity of grants and the lack of up specificity in terms of outcomes or intervention in the request for proposals, findings cannot be generalized across states. However, demonstration sites each report that identifying candidates, establishing their service package, and moving them back to the community proved much more difficult than initial expectations. Sites also demonstrate that only a small percentage of the total nursing home population resides in facilities "inappropriately."


Coordination of Care for Medicaid Beneficiaries with Chronic Illness: The purpose of this project is to conduct a qualitative study of fee-for-service based care coordination programs for Medicaid beneficiaries (both dual and non-dual eligible) with chronic illness. The contractor will synthesize the literature related to such programs, develop a typology of existing programs and conduct four case studies. As states grapple with the increasing cost of medical care, coordinating the acute medical and LTC services that persons with chronic illness often require is likely to emerge as an important cost containment strategy. While this type of coordination is often attempted through capitation based managed care, fee-for-services based programs have considerable appeal to states because they can be implemented without lengthy waiver negotiations and because they can enroll relatively large numbers of beneficiaries.

Health Promotion and Aging: A Blueprint for Change for the 21st Century: In December 2003, ASPE held a town hall meeting that highlighted the important contributions of family caregivers in caring for the elderly on the "front lines" of LTC; acknowledged the importance of health promotion activities for family caregivers; and provide examples of HHS-sponsored efforts that encourage the health and well-being of America's family caregivers. The event was hosted by Deputy Secretary Claude Allen.

Analyses of Informal Caregiving-Evidence from the Informal Caregiving Supplement to the1999 National Long-Term Care Survey: The purpose of this project is to obtain updated and expanded information to update the booklet "Informal Caregiving: Compassion in Action," which was published in 1998 jointly by ASPE and AoA). This project will also be used to convene a Technical Expert Panel meeting to discuss the design of future waves of the Informal Caregiving Supplement to the National Long-Term Care Survey, one of the major data sources used to produce informal caregiving estimates in the aforementioned ASPE/AoA booklet. The original booklet can be found at:


Using MSIS Data for Analysis of Medicaid Long-Term Care and Mental Health Expenditures: ASPE is organizing the 1999 MSIS data to describe the population of LTC and mental health care eligibles and service recipients, their service utilization, and expenditures. All states submitted electronic data for the first time in 1999. The potential for developing annual, national reporting on institutional and community-based Medicaid service use for these two populations is being explored through this five state pilot study. The report can be found at:

To obtain a printed copy of this report, send the full report title and your mailing information to:

U.S. Department of Health and Human ServicesOffice of Disability, Aging and Long-Term Care PolicyRoom 424E, H.H. Humphrey Building200 Independence Avenue, S.W.Washington, D.C. 20201FAX:  202-401-7733Email:


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