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Workplace PAS > Annotated Bibliography on Workplace Personal Assistance Services

Annotated Bibliography on Workplace Personal Assistance Services, including trends in employment of people with disability related to increased availability of workplace PAS.

Susan Stoddard Ph.D., FAICP, Tanya Temkin, MPH MCP, and Lita Jans, Ph.D., InfoUse

Bailey, C. (2004). Minnesota's 2003 PCA consumer survey. Saint Paul, MN: Wilder Research Center.

This study examined the experiences and views of 455 participants in the state's Medicaid-funded personal care assistance (PCA) program. PCA consumers can receive services from an agency that hires, schedules, and manages workers or they can opt to do these tasks themselves. PCA services include assistance with activities of daily living, health-related functions, redirection and intervention for behavior, and instrumental activities of daily living, including assistance at the place of employment.

The vast majority of respondents said the PCA program improved their health and safety, reduced stress, and enabled them to stay at home. Forty-six percent said PAS services enabled them to do paid or volunteer work, though only 31% of working-age consumers did such work. About 22% of consumers with paid or volunteer jobs received PCA services at work. The most common type of assistance was with eating or meals, followed by help with job-related tasks such as filing or communicating. About three-fourths of consumers with worksite PAS had it paid for by Medicaid, and 18% had it paid for by their employers. Among those who said they did not have PAS at work, most said they did not need it, but others reported not having enough service hours and not knowing how to set up PAS at work.

Most working-age respondents were not enrolled in the state's Medicaid Buy-In program, and most were not aware of it.

PDF available at: http://www.dhs.state.mn.us/main/groups/ disabilities/documents/pub/dhs_id_029338.pdf

Baldridge, D.C., & Veiga, J.F. (2006). The impact of anticipated social consequences on recurring disability accommodation requests. Journal of Management, 32 (1), 158-179.

This study, based on survey data from 229 employees with hearing impairments and an expert panel, confirmed previous findings that employees with disabilities frequently refrain from making requests for accommodations they need. In this study, the accommodations most relevant to workplace PAS (WPAS) were professional notetakers, sign language interpreters, computer-aided transcription, and co-worker or supervisor assistance with writing down words to supplement oral communication. Across all different kinds of accommodations, the monetary cost and sense of imposition on others contributed directly and indirectly to employees deciding not to ask for an accommodation, even when it would clearly help them in their work. Findings also showed that monetary costs and imposition on others negatively influenced employee’s perceptions of the social costs of asking for the accommodation. Perceived social costs made it less likely that employees would request needed accommodations in the future.

Web link to purchase full article for $25: http://jom.sagepub.com/cgi/content/abstract/32/1/158

Barcus, J.M., & Targett, P. (2003). Maximizing employee effectiveness through use of Personal Assistance Services at the workplace. Journal of Vocational Rehabilitation, 18(2), 99-106.

Many people with disabilities require Personal Assistance Services (PAS) or assistance with routine activities, including dressing, eating, preparing meals, or going to the bathroom. In the workplace, adequate assistance with those daily activities and modifications to some work tasks can allow people with disabilities to obtain and keep jobs, and advance in their careers. The authors discuss a variety of accommodations in the workplace, including PAS, equipment modifications, and other changes in the workplace that make it possible for qualified people with disabilities to accomplish work tasks, but in a slightly different way than others without disabilities. The benefit to business is a reliable and dedicated labor pool of people with disabilities who are eager and willing to work.

Web link to purchase full article for $20: http://iospress.metapress.com/openurl.asp?genre=article&issn=1052-2263&volume=18&issue=2&spage=99

Barnett, K. (2004). Personal assistance services study: Report of findings. Richmond, VA: Virginia Commonwealth University, Survey and Evaluation Research Laboratory.

This survey of PAS users in Virginia's Home and Community Based Services Medicaid Waiver programs addressed use of PAS at home and, if applicable, at work.

Respondents ranged from 18 to 91 years of age. The vast majority (94%) received PAS at home for an average of 63 hours a week. Respondents overwhelmingly reported significant functional limitations, requiring PAS for multiple activities of daily living.

Only 17 respondents (2%) reported having a paid job; eight of these received PAS in the workplace. Of these, only 2 had their PAS paid for by Medicaid. Six employed respondents said that working would be impossible without PAS, and all eight rated their workplace PAS as very good to excellent. Among unemployed respondents, only 9% indicated that they could work if PAS was available in the workplace. The report concludes that employment is a significant challenge for those in the state's HCBS waiver programs.

PDF available at: http:// www.dmas.virginia.gov/downloads/pdfs/mb-pas_survey_final_reportL.pdf

Barrett, J.C. (2003). Being an effective workplace personal assistant. Journal of Vocational Rehabilitation, 18(2), 93-97.

The author has worked as a personal assistant (PA) supporting employees with significant disabilities in a range of different jobs. He discusses five core attributes of an effective PA: reliability, punctuality, loyalty, honesty, and a commitment to effective communication. The article notes differences between workplace personal assistance services (WPAS) and PAS that is provided in the home. For example, it is often important for workplace personal assistants to maintain a somewhat formal, professional relationship with both the employee and the supervisor. The personal assistant must understand the employee’s job tasks and establish an effective work routine. The author notes the importance of the role of the PA in expanding employment opportunities for people with disabilities, and describes the rewards of a meaningful career as a personal assistant.

Web link to purchase full article for $20: http:// iospress.metapress.com/openurl.asp?genre=article&issn=1052-2263&volume=18&issue=2&spage=93

Bell, H.S. (2003). Creating financial incentives to serve partial benefit recipients in the Ticket to Work program. Washington, D.C.: Urban Institute.

This paper examines the rationale for expanding reimbursement to employment networks (ENs) that deliver or coordinate employment, rehabilitation, and support services for SSDI or SSI recipients who hold "tickets" issued by the Social Security Administration. ENs cannot receive reimbursement for such services from SSA until the recipients they serve have earnings high enough to end their receipt of cash benefits. However, it is consistent with the overall policy goals of the Ticket To Work and Work Incentives Improvement Act (TWWIIA) to reimburse providers who serve less-employable recipients who can work, but cannot achieve sustained earnings that result in termination of their cash benefits.

The main challenges of implementing such a change in the payment system would be to set reimbursement terms that would be sufficiently profitable for ENs, and making the plan administratively feasible to SSA and understandable to providers, advocates, and recipients. The paper presents various options for designing and implementing an expanded provider reimbursement policy.

PDF available at: www.ssa.gov/work/panel/panel_documents/pdf_versions/Reducing%20Cash%20Benefits%20%20FINAL%2012-06-03.pdf

Black, W.E., Liu, S., & Ireys, H.T. (2006, May). How much are Medicaid Buy-In participants earning? Working with Disability Issue Brief, 1. Retrieved July 5, 2006 from Mathematica Policy Research web site: http://www.mathematica-mpr.com/publications/PDFs/howmuchmedicaid

By the end of 2004, 32 states operated a Medicaid Buy-In program, with a nationwide enrollment of more than 76,000 people. The Buy-In program allows adults with disabilities to have Medicaid insurance coverage even when they are working. This issue brief describes the earnings of workers with disabilities who participated in the Medicaid Buy-In program in one of 27 states with participant data in 2004. About two-thirds of Buy-In participants (66 percent) reported at least some earned income to the IRS on W-2 forms in 2004. The percentage of Buy-In participants with earned income varied from a low of 38 percent in Missouri to a high of 95 percent in Illinois. Among people who participated in the Buy-In program, average reported annual earnings were $7,246 (about 78 percent of the federal poverty level). Average reported earnings varied greatly from state to state, with a low of $4,337 in Iowa to a high of $14,342 in South Carolina. A number of factors affected earning levels across the states, including program context (e.g. local economies, social service infrastructure), program features (e.g. income limits, asset limits, outreach methods), and participant characteristics (e.g., age, education level, health and disability status, work experience). Although the majority of Buy-In participants are earning income, their earnings are generally low and vary greatly across different states.

PDF available at: http://www.mathematica-mpr.com/publications/PDFs/howmuchmedicaid

Center for Workers with Disabilities. (2002). Building work incentives using Section 1902(r)(2) of the Medicaid statute. (Report No. 02-2). Washington, D.C.: Author.

Section 1902(r)(2) of the federal Medicaid statute allows states to use more flexible rules in calculating financial eligibility for state Medicaid programs for a broad range of working and non-working recipients. By permitting more generous disregards of income and resources, states can extend Medicaid coverage to those who would otherwise be ineligible, and can allow working recipients to keep more of their monthly earnings and retain savings accrued from earnings without losing eligibility for Medicaid. Section 1902(r)(2) can be used to benefit numerous categories of Medicaid eligibles, including working recipients participating in a state Medicaid Buy-In (MBI) program, individuals formerly participating in MBI, and those who are not MBI participants.

This report outlines the provisions of Section 1902(r)(2), the categories of individuals to whom states have extended Medicaid coverage through this provision, and, specifically, its use to provide work incentives to participants who would otherwise be ineligible for Medicaid or who would be forced to spend higher amounts of their earnings towards their medical care.

PDF available at: http://cwd.aphsa.org/publications/docs/special_2.pdf

Center for Workers with Disabilities. (n.d.) Overview of MBI for working individuals with disabilities. Washington, D.C.: Author.

This overview of Medicaid Buy-In provisions reviews authorizing federal legislation, related work incentive provisions, and policy implications for states designing Buy-In programs. Features of Buy-In provisions related to financial eligibility, premiums, and cost sharing under the Balanced Budget Act of 1997 and the Ticket to Work and Work Incentives Improvement Act (TWWIIA) are reviewed and compared. Challenges for states include defining "employment" under their Buy-In programs in ways that do not conflict with federal law, meeting the maintenance-of-effort requirement of TWWIIA, and enabling individuals over age 64 (who can not participate in Buy-In programs under TWWIIA) to continue their Medicaid coverage while working or retaining their assets. Other considerations for states include costs associated with Buy-In programs, the problem of SSDI recipients limiting their earnings to retain their cash benefits, and the contradiction between SSA eligibility standards for disability and work incentives such Buy-In provisions.

PDF available at: http://www.aphsa.org/disabilities/statetostate/docs/mbioverview.pdf

Center for Workers with Disabilities (n.d.). PAS eligibility criteria: Technical assistance for the Medicaid Infrastructure Grants. Retrieved May 25, 2006, from http://www.cms.hhs.gov/TWWIA/Downloads/PASeligibilitycriteria.pdf

This report describes criteria for Personal Assistance Services (PAS) that states must meet in order to receive a Medicaid Infrastructure Grant (MIG) from the Centers for Medicare & Medicaid Services (CMS). The Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA) required that states receiving MIGs must make PAS available to allow people with disabilities to remain employed. This report summarizes the structure for determining whether a state is conditionally or fully eligible to receive a MIG, based on how many hours the PAS services will enable a worker to work, whether the PAS services are delivered inside and outside the home (including at the workplace), and the extent to which working people with a need for PAS anywhere in the state can receive services. Conditionally eligible states provide PAS “inside and outside the home through their Medicaid programs in a statewide manner sufficient in amount, duration, and scope to support an individual who is working 40 hours per month” (or about 10 hours per week). Conditionally eligible states have been allowed to receive funding while making progress toward improving their Medicaid PAS. A fully eligible system meets all conditional eligibility criteria but also allows workers to be supported in full-time competitive employment. Fully eligible systems must meet additional criteria, including an established system for evaluating requests for services, providing assistance with instrumental activities of daily living (IADLs), and the capacity to provide services during both day and night, seven days a week, if they are needed by the worker.

PDF available at: http://www.cms.hhs.gov/TWWIA/Downloads/PASeligibilitycriteria.pdf

Center on an Aging Society (2004). Workers affected by chronic conditions: How can workplace policies and programs help? (Issue Brief Number 7). Washington DC: Georgetown University.

This Issue Brief reviews the policies and programs of employers toward workers with chronic conditions and toward workers needing to care for family members with chronic conditions. The paper reviews the data on people with a chronic condition in the working age (18-65 years) and cites reports on the number of people in the workplace with responsibility to care for others with chronic conditions. Cost implications for workers and businesses are presented. Also presented are employer approaches such as work-life policies, workplace accommodations, flexible work arrangements, leave policies, resource and referral services, and supports for workers.

PDF available at: http://ihcrp.georgetown.edu/agingsociety/pdfs/workplace.pdf

Cinsavich, S. & Rado, G. (2002). ,Medicaid Buy-In: Concept and Implementation. Policy Brief - Volume 4, Number 2 - April 2002 Boston, MA: Institute for Community Inclusion. Retrieved January 14, 2004, from http://www.communityinclusion.org/publ

This policy brief provides an overview on Medicaid Buy-In programs (MBI). It explains the history of MBI programs, their relationship to Medicaid and SSI eligibility, and describes key features of existing MBI programs in 23 states. The Ticket to Work and Work Incentives Improvement Act (TWWIIA) of 1999 gave states the option of providing Medicaid coverage to individuals with a disability who might not otherwise be eligible for SSI or Medicaid because their earned income from working would be too high to qualify. States that exercise this option can set up a Medicaid Buy-In (MBI) program. This policy brief provides a brief history of the TWWIIA, and an overview of key features of existing MBI programs in 23 states. The brief defines and discusses aspects of TWWIIA such as the Federal Poverty Level (FPL), eligibility for people with potential disabilities, and the Continuing Disability Review (CDR) required under the Social Security Act It also covers key features of Medicaid Buy-in 23 state programs, such as requirements, income disregards, asset provisions, cost-sharing thresholds, premium payments and implementation dates A list of states with MBI legislation pending, or with no legislation is also provided The brief found that over half the states that have implemented an MBI program have done so under the authority of the Balanced Budget Act (BBA), and that all the state MBI programs cover individuals with disabilities on SSI/SSDI. The states vary in their income limit for eligibility, their application of SSI income disregards, and their cost-sharing thresholds.

Available at: http://www.communityinclusion.org/publ

Coble-Temple, A. (Summer, 2002). Understanding the differences between worksite personal assistance services (PAS) and personal PAS on the job: Why this is important to rehabilitation? Rehabilitation Psychology News, 29 (4). Retrieved May 5, 2005 from http://www.apa.org/divisions/div22/SummerConv2002news.html

This article distinguishes between a definition of PAS that focuses on health and personal care and a more expansive definition that recognizes PAS as assistance that enables a person with a disability to interact with the community and society as a whole. Viewing PAS as a civil rights accommodation that helps people with disabilities negotiate barriers in the environment supports the provision of PAS at the workplace. Workplace PAS can be divided into two types of assistance: job-related tasks involving various types of assistance with workplace mobility, use of office equipment, and cognitive tasks; and personal care tasks on the job. ADA guidelines interpret the former as a reasonable accommodation, but do not require employers to provide the latter. However, a person with a disability may need such services to function in the workplace. Rehabilitation counselors can help consumers identify their needs for PAS in the workplace and prepare them to ask for personal PAS as a reasonable accommodation and counter resistance from employers.

Available at: http://www.apa.org/divisions/div22/SummerConv2002news.html

Coble-Temple, A., Mona, L.R., & Bleecker, T. (2003). Accessing personal assistance services in the workplace: Struggles and successes. Journal of Vocational Rehabilitation, 18(2), 113-123.

This article analyzes and summarizes the results of focus groups conducted with 16 people with disabilities who utilized personal assistance services (PAS) in the workplace. The participants reported that discrimination in the workplace, vague policies about PAS, and difficulty finding willing and qualified assistants were barriers to effective PAS in the workplace. To overcome these barriers, participants recommended becoming a strong self-advocate, establishing informal networks and ways of providing services, and educating employers about the benefits of workplace PAS. Participants also emphasized the importance of improving public policy as it relates to workplace PAS.

Web link to purchase full article for $20: http:// iospress.metapress.com/openurl.asp?genre=article&issn=1052-2263&volume=18&issue=2&spage=113

Dautel, P., & Frieden, L. (1999). Consumer choice and control: Personal attendant services and supports in America. Report of the Blue Ribbon Panel on personal assistance services. Houston, TX: Independent Living Research Utilization.

This report includes a set of recommendations from a Blue Ribbon Panel convened to propose policies strategies for promoting community-based, consumer-directed programs for long-term care and other support needs of persons with disabilities. The Panel generated a set of priority and secondary recommendations for reform at the state and federal levels. The many federal-level recommendations included requiring states to cover provision of PAS in the workplace and other locations outside the consumer's home, and funding research on the feasibility of providing a sliding scale fee or buy-in option for services for individuals who are otherwise financially ineligible for such services.

Available at: http://www.ilru.org/html/publications/pas/blue_ribbon_panel.html

Dixon, K., Kruse, D., & Van Horn, C. (2003). Restricted access: A survey of employers about people with disabilities and lowering barriers to work. (Work Trends Survey, 3:6). New Brunswick, NJ: Rutgers University, John J. Heldrich Center for Workforce Development.

This report, based on a survey of 501 businesses throughout the U.S., describes the attitudes and experiences of employers in hiring and retaining employees with disabilities, providing accommodations and training for these workers, and policy strategies for increasing workplace accessibility.

Though the majority of employers say that their workplaces are accessible to workers with disabilities, only one-fourth said that their company employs at least one worker with a disability. Employers expressed diverse opinions about the reasons for this under-representation: one-third said that the greatest barrier to hiring is that the work could not be effectively performed by workers with disabilities, and one-fifth identified lack of skills and experience on the part of job seekers with disabilities as a major obstacle.

Employers recognized their own barriers to hiring people with disabilities, including discomfort or unfamiliarity with workers with disabilities and fear of the cost of accommodation. Most employers supported federal tax incentives for companies that hire workers with disabilities, and nearly three-fourths believe employers as well as employees and the government are responsible for ensuring equality in the workplace. The study concludes that, despite perceived barriers, employers would support opportunities to more aggressively recruit, hire, train, and support workers with disabilities.

Available at: http://www.heldrich.rutgers.edu/publications.asp

Fishman, E., & Cooper, B. (2002). Medicaid Buy-In options: Helping persons with severe disabilities and chronic conditions to work. New York: Mount Sinai School of Medicine.

This report examines the Medicaid Buy-In provisions under federal law and states' experiences in designing and implementing them. Findings were based on interviews with key informants in 15 states representing a range of program designs and enrollment numbers, including states that did not have a Buy-In program at the time. The study found that Buy-In programs had very strong political support in states that had such programs, but Buy-In adoption by other states was limited by fear of uncontrollable costs, among other reasons. Although the Buy-In program was meant to remove barriers to work primarily for those already eligible for Medicaid as SSI recipients or as "medically needy," most enrollees were beneficiaries of SSDI and Medicare. Overall enrollment among potential enrollees was low, however, due in part to their fear of losing their benefits as a result of work as well as by program design features.

Options for improvement include launching an education campaign conducted by the Federal government, expanding state demonstration authority for states, increasing the federal match for some or all groups of enrollees, eliminating eligibility inconsistencies between state vocational rehabilitation programs and work incentive provisions, and extending federal health coverage to uninsured working people whose disabilities may become work-disabling.

PDF available at: http://www.partnershipforsolutions.com/DMS/files/Buy-InPaper72.pdf

Folkemer, D., Jensen, A., Silverstein, R., & Straw, T. (2002). Medicaid Buy-In Programs: Case Studies of Early Implementer States. Washington, D.C.: U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and George Washington University.

This report addresses features of the Medicaid Buy-In in nine “early implementer” states: Alaska, Connecticut, Iowa, Maine, Minnesota, Nebraska, Oregon, Vermont, and Wisconsin. A common policy goal governing the design of the programs examined was expanding the provision of personal assistance services in order to help persons with disabilities obtain or enhance employment. This report is one of a series that includes a summary of lessons learned by these nine states, a policy guide, and a summary of conclusions for use by federal agencies.

Through discussions with key stakeholders in each state, the study identifies key design issues and themes, including general eligibility criteria for the Buy-In, resource limits, premium levels, the number of participants, and the interaction of Medicaid with other sources of assistance, such as state supplements to SSI or employer-provided insurance. The case studies describe state policy that governs the maximum number of hours and permitted locations for the provision of PAS, pre-existing SSI and regular Medicaid eligibility categories, other work initiative programs, and the effects of the Medicaid Buy-In on Medicaid eligibility, as well as the formal roles played by policymakers and stakeholders in developing the programs. Drawing from available state-level surveys, the studies examine perceived barriers to employment and individuals’ attitudes toward working.

Available at: http://aspe.hhs.gov/daltcp/reports/EIcasest.htm

Folkemer, D., Jensen, A., Silverstein, R., & Straw, T. (2002). The Medicaid Buy-In Program: Lessons Learned from Nine Early Implementer States. Washington, D.C.: U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and George Washington University.

This second in a series of three reports addressing Medicaid Buy-In implementation examines the policy and administrative structures of the Buy-In programs in the nine early implementer states described in the earlier report. Using data and eligibility standards for calendar year 2001, the study examines each program’s experiences and outcomes, and shows the effect of the programs on access to Medicaid coverage.

The study found that Medicaid Buy-In programs are typically managed by state Medicaid agencies, but with significant input from consumers and other state agencies. Eligibility standards and cost-sharing policies vary greatly across the states and may significantly impact enrollment. Information available at the time of the study was insufficient to show whether the programs are meeting their objectives, partly due to inconsistent formats for performance data across the states. Finally, state policies on general Medicaid eligibility and SSI, as well as federal policies on SSDI, affect access to and enrollment in the Medicaid Buy-In programs. The report concludes that experiences of other states provide only a limited resource for the design and implementation of a given state’s Medicaid Buy-In Program, and that programs should be assessed in the larger context of the state’s overall Medicaid program and other state-specific initiatives.

Available at: http://aspe.hhs.gov/daltcp/reports/EIlesson.htm

Gilbride, D. Stensrud, R., Ehlers, C., Evans, E., & Peterson, C. (2000). Employers' attitudes toward hiring persons with disabilities and vocational rehabilitation services. Journal of Rehabilitation, 66 (4), 17-23.

The three central questions of this study were: (1) what are employers' attitudes and perceptions toward hiring people with disabilities, (2) what are employers' perceptions of the effectiveness of services provided by state vocational rehabilitation agencies; and (3) are there differences in attitudes of Midwestern and Southern employers. Data were collected through a telephone survey on 123 employers who had hired a consumer of the state VR system in two Midwestern states and two Southeastern states.

The study found that a large majority of employers had hired a person with a disability before and were glad they had done so. However, most did not realize that they had had contact with VR. The small number of employers who knew they had interacted with VR were, in general, satisfied with VR overall but less satisfied with specific services. About half of the employers reported providing accommodations for employees with disabilities.

Most employers thought it would be more difficult to hire a person with blindness or mental retardation for the job position most frequently open at their businesses. Southern employers were significantly more likely to think that it would be hard to hire employees with mental or emotional disabilities.

Available at: http://www.findarticles.com/p/articles/mi_m0825/is_4_66/ ai_68865432/print.html

Gilbride, D., Stensrud, R., Vandergoot, D., & Golden, K. (2003). Identification of the characteristics of work environments and employers open to hiring and accommodating people with disabilities. Rehabilitation Counseling Bulletin, 46 (3), 130-139.

This study determined the characteristics of employers who are open to hiring and supporting people with disabilities, in order to help rehabilitation professionals better target their placement and educational activities. Through focus groups of successfully employed consumers with disabilities, experienced rehabilitation placement professionals, and employers who had successfully hired and retained workers with disabilities, key characteristics were identified in the categories of work cultural issues, job match, and employer experience and support. Findings of this study were found to be consistent with those of previous studies.

The implications of this study for rehabilitation professionals are that placement efforts should focus on a match between employee abilities with essential job functions; should evaluate the organizational culture of potential employers; and can use study findings to direct and focus employer educating and consulting activities.

Available at http://www.worksupport.com/Main/proed_Identification.asp.

Goodman, N., & Livermore, G. (2004). The effectiveness of Medicaid Buy-In programs in promoting the employment of people with disabilities: Briefing paper prepared for the: Ticket to Work and Work Incentives Advisory Panel. Washington, DC: Cornell University Institute for Policy Research.

This report is meant to provide the Advisory Panel with information about the features of states' Medicaid Buy-In programs and their potential to promote the employment of people with disabilities. At the time of the report, 29 states had implemented Buy-In programs; 15 of these had done so under the Ticket to Work and Work Improvement Incentives Act.

There was considerable variation across states in Buy-In eligibility criteria, premiums charged to participants, and enrollment rates. Most participants were covered by Medicaid prior to Buy-In enrollment, and tended to have low earnings. State policies tended to restrict access to their Buy-In programs to those with low SSDI benefits or low earnings. Buy-In programs appeared to provide significant supports for people with disabilities, notably through Medicaid coverage of prescription drugs and personal assistance services to SSDI beneficiaries who would not ordinarily qualify for Medicaid. However, many enrollees lacked clarity or knowledge about the benefits of the program.

The report concludes that while Buy-In programs appear to provide needed supports, they may not reduce work disincentives in the context of a complex system that defines disability in terms to inability to work.

PDF available at: http://www.ssa.gov/work/panel/panel_documents/pdf_versions/ Buy-in%20paper%20Goodman_Livermore%20072804.pdf

Gray, C., & Salley, S. (2004). MaineCare Personal Assistance Services in the Workplace. Portland, ME: University of Southern Maine, Muskie School of Public Service.

This report presents findings from Maine's CHOICES Project, funded by a Medicaid Infrastructure Grant, as well as a preliminary analysis of MaineCare (Medicaid) policies related to people with disabilities. As the report notes, "the focus of this report is personal assistance services through MaineCare funding, with a specific focus on services in the workplace. This preliminary report is designed to provide a basis for further research needed to determine personal assistance needs, demand, cost, benefit, or the impact of policies or practices."

A 2003 survey of enrollees in MaineCare's Workers with Disabilities Option (Maine's Medicaid Buy-In program) showed that most PAS users relied on help from unpaid workers; less than one percent relied on a paid personal assistant at work or to get to work. An even smaller number said they needed but were not getting PAS at the workplace. While a small number of non-working enrollees said they would need workplace PAS if they got a job, many more identified other workplace supports--such as ability to take unscheduled time off or control over work place--as essential to keeping a job.

Available at: http://choices.muskie.usm.maine.edu/PASreport.htm

Hanes, P., & Folkman, J. (2003). State Medicaid options that support the employment of people with disabilities. Portland, OR: Oregon Health and Science University, Center for Health and Disability Policy.

This study of early Medicaid Buy-In program implementation in seven states addresses the relationship between program design and enrollment characteristics and workers' perceived benefits of participation in the program. Using data from self-administered surveys of working-age adults with disabilities, focus groups, meeting summaries, and administrative data gathered by states and submitted to CMS, the study examined barriers to employment, to what extent Buy-In participants increased their earnings, attitudinal and quality of life changes resulting from working and increased earnings, and the role of individual and societal attitudes in furthering return-to-work policies.

The study found that evidence from these early implementer states was mixed and inconclusive. Program design features such as income and resource limits and the availability of benefits counseling influence program participation rates and earnings profiles. Individual worker characteristics and societal attitudes about disability can influence these outcomes as well. The study concluded that the effectiveness of Buy-In programs seems to depend on whether it is integrated into a larger state initiative to boost employment and earnings among people with disabilities. Further, individual factors such as time spent in the labor market and ongoing fear of losing health insurance and income supports may moderate the effectiveness of Buy-In programs.

PDF available at: http://www.chcs.org/usr_doc/BuyIn.pdf

Hernandez, B., Keys, C., & Balcazar, F. (2000). Employer attitudes toward workers with disabilities and their ADA employment rights: A literature review. Journal of Rehabilitation, 66 (4). Retrieved April 11, 2004, from http://www.findarticles.com/p/articles/ mi_m0825/is_4_66/ai_68865430/print.html

This review of 37 studies found that employers continue to express positive global attitudes toward workers with disabilities. However, they tend to be more negative when specific attitudes toward these workers are assessed. Although employers are supportive of the ADA as a whole, the employment provisions evoke concern. When appropriate supports are provided, employers express positive attitudes toward workers with intellectual and psychiatric disabilities. Affirming earlier reviews, employers with prior positive contact hold favorable attitudes toward workers with disabilities. Employers' expressed willingness to hire applicants with disabilities still exceeds their actual hiring, although this gap is narrowing. Workers with physical disabilities continue to be viewed more positively than workers with intellectual or psychiatric disabilities. (from the abstract)

Available at: http://www.nationalrehab.org/website/pubs/vol66no4.html)

Hinton, D. (2003, September). Personal assistance services on the job.(InfoBrief Issue 6). Washington, DC: National Collaborative on Workforce and Disability. Retrieved January 31, 2005 from http:// www.ncwd-youth.info/resources_&_Publications/info.php

This brief from the National Collaborative on Workforce and Disability, describes how Utah, Iowa, and West Virginia are adapting their Medicaid PAS programs to meet the needs of workers with disabilities. Iowa plans to extend PAS to the workplace through its state Medicaid plan by encouraging employers to hire personal assistants or train employees to provide PAS, or by allowing employees to set up a medical spending account to pay for personal assistants. Utah allows workers who work at least 40 hours a week and who do not get PAS from co-workers to hire their own assistants or get services from an agency provider; an employment support plan specifies the amount and duration of services for each participant. West Virginia's PAS program supports transportation services as well as assistance at home and at the worksite, with services generally limited to 60 hours a month. PAS plans are prepared by nurses and require a doctor's authorization.

Recent federal rules allow states to use federal funds to support a greater range of consumer-directed options in their Medicaid programs. States may want to consider designing programs tailored to the needs of youth with disabilities transitioning into the workforce.

Available at: http:// www.ncwd-youth.info/resources_&_Publications/info.php

Hoff, D., Dreilinger, D., Fesko, S., Fichera, K., Jordan, M., Marrone, J. et. al. (2001). Access for all: A resource manual for meeting the needs of One-Stop customers with disabilities. Boston: University of Massachusetts, Institute for Community Inclusion.

This manual is designed as a training and staff development tool for enhancing the ability of One-Stop systems to assist customers with disabilities, as well as a reference work for One-Stop staff, administrators, and customers. Chapters include an overview of significant issues in providing One-Stop services to customers with disabilities, complying with legal requirements ensuring accessibility, an overview of disability, a set of disability "fact sheets," information on job accommodations, job placement issues and resources, the Americans with Disabilities Act, the impact of employment on Social Security Disability benefits, transition and youth services, public and private disability service systems, developing transportation options for people with disabilities, and an extensive resource listing.

Available for $30 from web site: http://www.communityinclusion.org/onestop/onestopmanual.html

Holcomb, P., & Barnow, B. (2004). Serving people with disabilities through the Workforce Investment Act's One-Stop Career Centers. Washington, D.C.: Urban Institute.

This report examines the extent to which people with disabilities are served by the One-Stop system. Drawing on administrative data, prior studies, and key informant interviews, the study identifies barriers to service and promising strategies for improvement.

Barriers include lack of physical and programmatic access to One-Stop centers, staff ignorance about how to identify and serve customers with disabilities, and inappropriate referral of customers to state vocational rehabilitation agencies. Programmatic constraints include time and dollar limits on training One-Stop customers, and performance standards relating to employment, earnings, and credentials of customers who exit the program, without allowances for serving customers who face discrimination and other systemic barriers to employment.

However, there is a general consensus that, overall, the One-Stop system has made significant progress in reducing barriers to physical access and addressing special accommodation needs. There is also a widespread perception that One-Stops must make efforts to ensure programmatic access, not just physical and technological access. Federal initiatives such as Work Inventive Grants, Disability Program Navigator grants, and Customized Employment Grants, in particular, have helped make One-Stops more accessible and responsive to customers with disabilities.

Available at: http://www.urban.org/Template.cfm?NavMenuID=24&template=/TaggedContent/ViewPublication.cfm&PublicationID=9152

Ireys, H., White, J., & Thornton, C. (2003). The Medicaid Buy-In Program: Quantitative Measures of Enrollment Trends and Participant Characteristics in 2002. Washington, D.C.: Mathematica Policy Research, Inc.

The purpose of this study was to examine participation in state Buy-In programs and begin building a longitudinal database to track enrollment trends and participant characteristics. The report looks at Buy-In participation in 21 states with both Medicaid Buy-In programs and Medicaid Infrastructure Grants (MIGs) in 2002.

Using data compiled by these states from multiple sources, the study found that enrollment in Buy-In programs increased substantially between 1999 and 2002; the majority of first-time enrollees in 2002 were already enrolled in public health insurance and disability-related programs; and about one-fifth of Buy-In participants had reported earnings over the substantial gainful activity level of $800 per month. There was extensive variation between states in the number of Buy-In participants, the amount of their monthly premiums, and participants' average monthly reported earnings and Medicaid expenditures.

The report concludes with several critical policy questions to be addressed through continued collection and analysis of enrollment data; to what extent do Buy-In programs promote increased employment among individuals with disabilities? What are the advantages of Buy-In programs over other Medicaid-related work incentive programs? What is the relationship between health expenditures and earnings?. The report also urges enhancing state data with federal data from the Social Security Administration, Medicaid Statistical Information System, and Medicare.

PDF available at: http://www.cms.hhs.gov/twwiia/mathrpt1003.pdf

Jee, J. & Menges, J. (2003). The California Working Disabled Program: Lessons Learned, Looking Ahead. Oakland, CA: Lewin Group, for the Medical Policy Institute.

This report describes a study whose immediate goal was to identify factors that might explain why, less than 2 years after its implementation, enrollment in California's Medicaid Buy-In program reached only 10% of anticipated enrollment. To attempt to explain this, two types of analyses were conducted: qualitative research with enrollee and with county eligibility workers, and a quantitative study of Census Bureau and DHS data to model program eligibility alternatives that might allow more disabled workers to obtain coverage. The enrollment and cost implications of these alternatives were also explored. The California Working Disabled Medi-Cal Buy-In Program (CWD) was implemented in April 2000 to enable disabled individuals to participate in the workforce without the threat of losing their Medi-Cal coverage. However, as of June 2002, enrollment in CWD is far below original enrollment estimates and the number of individuals estimated to be eligible. This report examines some factors potentially affecting enrollment in CWD, and estimates the enrollment and cost impacts of certain programmatic changes. The report conducts a qualitative review of stakeholders' experience with CWD, as well as a quantitative analysis of Census Bureau and DHS data to model program eligibility alternatives that might allow more disabled workers in California to access Medi-Cal coverage. The report identified several elements which might increase enrollment of the current CWD program, such as increasing program outreach to potential enrollees, improving eligibility worker knowledge of CWD, improving program attractiveness, and addressing barriers to employment for disabled people. The report concludes that enrollment would not likely increase if eligibility requirements are expanded without also expanding program outreach and improving community and eligibility worker awareness of CWD.

Available at: http://www.chcf.org/topics/medi-cal/index.cfm?itemID=20684&subsection=medi-cal

Jensen, A., & Silverstein, B. (2002). SSDI state work incentive policy demonstration projects: Purposes, principles, and issues. University of Iowa, Rehabilitation Research and Training Center on Workforce Investment and Employment Policy.

Authorized SSA to establish demonstration projects that allow SSDI benefits to be gradually reduced rather than abruptly ended when beneficiary earnings exceed the level of "substantial gainful activity." The demonstrations are to consider the needs of people with significant disabilities who rely on access to health care and long-term services and supports such as PAS and assistive technology in order to work. This paper outlines principles and policy options involved in providing protections for participants; creating new options for gradual reduction of benefits and continued attachment to SSDI benefits; making SSDI demonstrations complement SSI, Medicaid, and the Ticket to Work program; evaluating enrollment and net fiscal impact; and designing equitable cost-sharing between federal, state, and local governments.

Available at: http:// www.uiowa.edu/~lhpdc/work/VII_policy/SSDI_Demo_Paper_Oct02%20Draft.doc

Jensen, A., Silverstein, R., Folkemer, D. & Straw, T. (2002). Policy Frameworks for Designing Medicaid Buy-In Programs and Related State Work Incentive Initiatives. Washington, D.C.: U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and George Washington University

This report, the third in a series of three, provides policy frameworks for states in designing, re-designing and implementing Medicaid Buy-In Programs. It offers guidance to states in determining the focus and policy objectives of their Buy-In programs; describes the various means of implementation through controlling eligibility, premiums and other program elements, and outline how states might redesign existing state SSI supplementation and Medicaid programs to provide work incentives.

The frameworks encourage the development of comprehensive, person-centered Buy-In programs that address the multiple barriers to work faced by people with significant disabilities. The design and implementation of programs are addressed within the context of a state’s overall Medicaid program and other state-specific and federal initiatives, such as the disincentive caused by the sudden loss of SSDI benefits at a specific earned income level. Drawing on the experience of the nine “early implementer” states, the report discusses policy trade-offs, eligibility criteria, use of premiums, and other program elements. States can also redesign their SSI supplementation and Medicaid programs to take advantage of Social Security work incentives or by making it easier to apply for both SSI and Medicaid.

Available at: http://aspe.hhs.gov/daltcp/reports/polfrmes.htm

Kaye, N., & Wysen, K. (2003). Using Medicaid to cover the uninsured: Medicaid participant Buy-In programs. Portland, ME: National Academy for State Health Policy.

This report presents findings from a study on the potential for using Medicaid as a means to cover the uninsured through participant Buy-In programs. Using findings from a literature review, a survey of Medicaid Buy-In programs, and an expert meeting of state Medicaid officials, the study addresses features of state Buy-In program financing and barriers to the program's success.

In most states, participants must pay a premium or enrollment fee to participate in the Buy-In program. States most frequently use a sliding scale to charge premium levels, either as a minimum dollar amount, a percentage of income, or through more complex formulas. States varied widely in the amount of premiums collected per month, in mechanisms used to collect premiums. A majority considered their premium collection program successful, but many perceived problems in the design of their Medicaid programs and premium collection policies.

Suggested modifications to current Medicaid rules that could extend coverage to the uninsured include making eligibility rules more flexible and allowing Medicaid to pay the full cost of services. Medicaid officials also suggested more flexibility in federal rules for co-payment and benefits eligibility and addressed possible changes in their state policies for premium collection and other program operations.

PDF available at: http://www.nashp.org/Files/Medicaid_buy-in_paper_5.03.pdf

Keller, J. (2003a). Using PAS service in Vermont to support employment-Part One: Current programs, promising practices and next steps for study. Burlington, VT: Keller & Fuller, Inc.

This report summarizes PAS programs and employment support services in Vermont relevant to people with psychiatric and cognitive disabilities. PAS programs administered by the state's Department of Aging and Disabilities, including PAS provided under the state's Medicaid plan, usually do not cover services provided in the workplace. Eligibility standards for these PAS programs may favor physical rather than cognitive disabilities, and covered services do not include cognitive supports such as cuing, prompting, and encouragement.

On the other hand, HCBS waiver programs targeted to people with serious mental illness, development disabilities, and traumatic brain injury cover employment-related services and cognitive supports, although these programs carry certain restrictions. Outcome studies show that participants in the waiver program for people with mental illness who received employment supports had better employment outcomes than those who did not.

The report describes promising practices in state Medicaid plans and waiver programs in West Virginia, Utah, and Oregon that cover employment-related PAS services, including workplace PAS, and that cover an expanded range of PAS services helpful to people with mental illness and cognitive disabilities.

Available at: http://www.dad.state.vt.us/dvr/vocrehab/vwii/s5_reports.htm

Keller, J. (2003b). Using PAS service in Vermont to support employment-Part Two: Gaps in current programs and possible remedies. Burlington, VT: Keller & Fuller, Inc.

The second of a three-part series of reports, this report focuses on how existing PAS programs in Vermont could be changed to better support employment of people with cognitive disabilities. Although the state provides PAS or PAS-like services for people with traumatic brain injury, mental disabilities, and development disabilities under a number of Medicaid waiver programs, eligibility standards exclude a number of individuals who could benefit from such services. Further, the types of PAS-like services most helpful to people with cognitive or psychiatric disabilities, such as cuing or help with life skills, are not covered by PAS programs that focus on hands-on physical assistance or long-term

Suggested remedies include creating a specific category of PAS services to be delivered at the worksite, and expanding eligibility and service provisions within the existing Medicaid program to include cognitive disabilities and cognitive support services needed to maintain employment, Other states that support PAS in the workplace, notably Utah, Oregon, and West Virginia, have implemented one or another of these options.

Available at: http://www.dad.state.vt.us/dvr/vocrehab/vwii/s5_reports.htm

Keller, J. (2003c). Using PAS service in Vermont to support employment-Part Three: Eligibility, Services, Utilization, and Costs. Burlington, VT: Keller & Fuller, Inc.

The final report of a three-part series proposes developing a new category of PAS apart from the existing Vermont state Medicaid plan that would provide employment supports for people with cognitive disabilities. Following Utah's EPAS (Employment-related Personal Assistance Services) as a model, such a program would be aimed at consumers who meet a broader definition of disability that includes cognitive impairments, and who are working or actively seeking jobs; would include assistance with daily activities needed to obtain and retain competitive employment; and would allow PAS services at the worksite. Covered services would include those particularly relevant to people with cognitive disabilities, including cuing, reassurance, redirection, and other work-related assistance, as well as assistance with activities of daily living.

Limited data sources for projecting cost, utilization, and costs versus benefits of such a program suggest that approximately 75 people statewide would be eligible for the new program, that most enrollees would need assistance in preparing for and returning from work rather than support at the worksite, and that increased program costs would be offset by increases in state payroll tax and sales tax, and reduced dependency on other state programs.

Available at: http://www.dad.state.vt.us/dvr/vocrehab/vwii/s5_reports.htm

Kiernan, W.E., Halliday, J.F., & Boeltzig, H. (2004). Economic engagement: An avenue to employment for individuals with disabilities. Boston: University of Massachusetts, Institute for Community Inclusion.

This report summarizes the discussion and conclusions of an expert panel convened to offer guidance to the Center for Medicare and Medicaid Services (CMS) in its support of states' efforts to increase employment access for people with disabilities. The panel identified the differing priorities of employers and disability programs: while the former are concerned with workforce development and profitability, disability programs focus on protecting benefits and minimizing economic risk to the individual. Future employment efforts could address both the employers' needs for a skilled workforce as well as the individual's needs for better access to employment and career development. Responding the expert panels' concerns, the authors posit the concept of economic engagement, integrating both workforce participation activities with workforce development efforts, to guide future program development efforts to benefit workers with disabilities, employers, and the larger community.

PDF available at: http://www.communityinclusion.org/publications/pdf/CMSreport.pdf

Kregel, J., O'Mara, S., & West, M. (2003). Consumer advocacy in the implementation of the Ticket to Work Act. Richmond, VA: Virginia Commonwealth University, Rehabilitation Research and Training Center on Workplace Supports.

This report identifies ways in which agencies involved in the implementation of the Ticket to Work (TTW) program can have adverse effects on beneficiaries, and provides recommendations to eliminate or reduce the potential for harm. Entities involved in TTW include Vocational Rehabilitation (VR) agencies; Employment Networks (ENs); Benefits Planning, Assistance and Outreach (BPAO) programs, and Protection and Advocacy for Beneficiaries of Social Security (PABSS) programs.

Conflicting interests between these agencies may lead to a number of negative consequences for TTW participants. PABSS programs lack the capacity to adequately represent beneficiaries with other agencies involved in TTW, cannot represent people who no longer receive cash SSI or SSDI benefits, and cannot engage in systems advocacy. Beneficiaries may receive inaccurate information about how work will affect their cash benefits or Medicaid/Medicare eligibility, or may be unable to locate an EN willing to accept Ticket assignments. In other cases, ENs who have accepted a Ticket assignment from a beneficiary may terminate the Ticket if the Ticket holder is seen as too costly to serve. Other conflicts and disincentives may thwart the efforts of beneficiaries to use the TTW to achieve successful employment outcomes.

The report concludes with a number of recommendations to upgrade program quality, reduce inter-program conflicts, and minimize disincentives in the TTW system.

Available at: http://www.ssa.gov/work/panel/panel_documents/briefingpapers.html

Kregel, J.,& Revell, W.G. (2003). An evolving partnership: The role of state vocational rehabilitation agencies in the implementation of the Ticket to Work program. Richmond, VA: Virginia Commonwealth University, Rehabilitation Research and Training Center on Workplace Support.

This report analyzes the role and apparent conflicts of state vocational rehabilitation agencies (SVRAs) in implementing the Ticket to Work program authorized under the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA).

For over 20 years, SVRAs have received payments for their services to beneficiaries through the Social Security Administration's VR Reimbursement program, as well as through the federal Rehabilitation Act. Although TWIIAA made SVRAs critical to implementation of the Ticket program, it allows non-traditional providers of rehabilitation services and other employment supports (Employment Networks, or ENs) to compete to accept participants' Tickets and receive payment from the Social Security Administration. Thus, most SVRAs see the Ticket to Work program as an economic threat that can divert funds to competing agencies. They also complain that the program has unduly burdened them with the work of explaining the program to SVRA consumers and applicants, tracking earnings for Ticket holders, and other administrative duties.

Critics of SVRAs counter that SVRAs have tried to minimize competition by ENs and divert Tickets to themselves, thereby thwarting the program's intent of increasing consumer choice. Still, SVRAs in a number of states have helped foster the development of ENs.

The report recommends measures to help SVRAs fulfill the goals of the Ticket program, to guarantee the rights and opportunities of beneficiaries, and to ensure opportunities for participation by alternative ENs.

Available at: http://www.ssa.gov/work/panel/panel_documents/briefingpapers.html

Lida, K. (2006, May). Highlights of fourth quarter MIG activities. Center for Workers with Disabilities. Retrieved August 10, 2006 from http://www.aphsa.org/disabilities/home/index.htm

This report summarizes the highlights of activities conducted by grantees under the Medicaid Infrastructure Grants (MIGs) during the fourth quarter of 2005, which are usually the culmination of activities conducted throughout the year. The summary includes activities related to the development of personal assistance services (PAS) in the workplace, as well as other activities related to Medicaid Buy-In, multi-agency outreach and collaboration, stakeholder outreach and collaboration, and outreach and information dissemination. With regards to PAS, the report highlights the activities of Illinois, Michigan, Missouri, Nebraska, New Jersey, Oklahoma, and South Carolina.

Available at: http://www.aphsa.org/disabilities/home/index.htm

Liese, H., and Sheen, J. (2003). Employment Personal Assistance Services (EPAS): Focus group report on program awareness and needs. Salt Lake City, UT: Utah Governor’s Committee on Employment of People with Disabilities.

In 2001, Utah initiated its Employment-Related Personal Assistance Program (EPAS) through the Utah Work Incentive Initiative (UWIN). Two years later, only a small number of consumers had enrolled. This report presents findings from two focus groups and a survey conducted to evaluate consumers' awareness of EPAS and their needs for PAS in the home and workplace.

Participants in the focus groups included working individuals who used EPAS, workers who did not use EPAS, and individuals who were not working but might benefit from EPAS.. The survey included 80 independent living centers.

Focus group participants receiving PAS in the workplace usually got such assistance from sources other than EPAS, either through employer-paid personal assistants or informal help from co--workers. Overall, they were pleased with the services but did not consider informal services a viable long-term option. Participants also expressed a greater need for assistance at home getting ready for work than in the workplace itself.

Barriers included difficulty in finding, hiring and keeping personal assistants; effects on relationships with co-workers, and disincentives in the service system. Survey respondents also reported problems locating PAS providers and funders.

PDF available at: http://www.uwin.org/uwin/EPASFocusGroup102903.pdf

Liu, S., Ireys, H, White, J., & Black, W. (2004). Enrollment patterns and medical expenditures for Medicaid Buy-In participants in five states. Washington, DC: Mathematica Policy Research, Inc.

The Center for Medicare and Medicaid Services initiated this study to examine selected policy questions related to participation in the Medicaid Buy-In program and to assess the feasibility of using federal databases as sources to answer these questions. The study used 2001 data for California, Iowa, Massachusetts, Minnesota, and Wisconsin.

The study addressed the questions of how many individuals were enrolled in the Buy-In program in 2001, how long they were enrolled, their demographic characteristics and disabilities; the percentage of dual enrollees in both Medicaid and Medicare; per-person medical expenditure; and the effect of structural features in each state's program on enrollment patterns and medical expenditures.

The study found that, before entering the Buy-In program, most participants were already enrolled in Medicaid, and few had private insurance. Most participants had multiple chronic conditions. Prescription drugs were the single most expensive Medicaid service. There was wide variation between states in the proportion of medical expenditures used for PAS, with California spending a proportionately large amount. The study attributes this to the state's multiple funding mechanisms for PAS and its extension of PAS services to the workplace.

The study also found that federal Medicaid and Medicare databases could be used to generate an integrated database that yielded descriptive information about Buy-In participation.

Available at: http://www.mathematica-mpr.com/publications/publications.aspx

Livermore, G.A. (2003). Proceedings of the Employment Network (EN) Summit: Summary of Work Group recommendations. Washington, D.C.: Cornell Center for Policy Research.

The Ticket to Work and Work Incentives Advisory Panel convened the EN Summit to address the low numbers of service providers who were accepting Tickets in the Ticket to Work program. Summit participants developed specific recommendations to increase recruitment and active participation of provider organizations in Employment Networks.

The Summit's five work groups focused on five topic areas: finance and payments, technical assistance and training; marketing and collaborative relationships; operating a successful EN, and recruiting non-traditional ENs and expanding EN capacity. A general consensus emerged that the most critical areas needing improvement were modifying the payment system to make it more lucrative for ENs; reducing administrative requirements associated with claims for payment; establishing a means for identifying and sharing best practices; and providing technical assistance and training to ENs to enable them operate successfully.

PDF available at: http://www.ccpr.cornell.edu/EN_summit_summary_080403.pdf

Livermore, G., Nowak, M., & Stapleton, D. (2001). The role of health insurance in successful labor force entry and employment retention. Falls Church, VA: The Lewin Group.

This report is one of a series in a study that seeks to identify the roles of supports in enabling people with disabilities to be successfully employed and improving employment outcomes. Through a series of focus groups of working people whose disabilities began before the start of employment, the study identified key issues related to private and publicly-funded health insurance as an employment support.

Available at: http://aspe.hhs.gov/daltcp/reports/fgfind.htm

Loprest, P., & Maag, E. (2001). Barriers to and supports for work among adults with disabilities: Results from the NHIS-D. Washington, D.C.: Urban Institute.

Using data from the 1994 and 1995 Disability supplements to the National Health Interview Survey (NHIS-D), this study investigates what policies might increase employment for adults with disabilities by comparing the 37% of adults with disabilities who work to those who do not. The study focuses on non-working adults with a high likelihood of working, i.e. those who reported that their disabilities did not limit their work, and those who believed accommodations would enable them to work.

Among those reporting difficulty looking for work, over half reported that no appropriate jobs were available. A greater proportion of non-workers needed accommodation than workers, though the types of accommodations most frequently needed were similar. Worksite features such as accessible parking or elevators were the most commonly identified type of needed accommodation, followed by work arrangements, equipment needs, and on-the-job assistance. About one-quarter of workers needing accommodations reported that their needs were unmet. Unmet needs were particularly high for people who needed job coaches or job redesign. Overall, people needing accommodations were much less likely to be working than those without accommodation needs. The study also looked at transportation needs, finding that although public transportation and special transit systems were widely available, use among both workers and non-workers was low.

PDF available at: http://www.urban.org/UploadedPDF/adultswithdisabilities.pdf

Luecking, R.G. (2003). Doing it the company way: Employer perspectives on workplace supports. Washington, D.C.: George Washington University, HEATH Resource Center.

"This paper examines workplace supports that have proven effective for people with disabilities and relates them to employer perspectives of hiring and accommodating people with disabilities. Employment supports are also examined using an organization development (OD) framework that often influences general human resource management. A review of the literature and two case studies illustrations strongly suggest that employer attitudes toward disability are less significant when making hiring decisions than other factors, notably the identification of workplace supports and interventions that also contribute to improvement of companies’ operational and organizational processes. Combining disability employment interventions with OD interventions can facilitate the achievement of a more universally designed workplace. Implications for education and employment programs are discussed." (source: from the paper's Abstract).

PDF available at: http://www.heath.gwu.edu/PDFs/Leuking(Doing%20it%20the%20company%20way).pdf

MacDonald-Wilson, K.L., Rogers, E.S., Massaro, J. M., Lyass, A., Crean, T. (2002). An investigation of reasonable workplace accommodations for people with psychiatric disabilities: Quantitative findings from a multi-site study. Community Mental Health Journal, 38, 35-50.

This study at the Center for Psychiatric Rehabilitation examined a range of different accommodations for people with psychiatric disabilities in the workplace, by looking at characteristics of 204 employers, 191 employees, and 22 outside agencies that provided services. The authors found that people with psychiatric disabilities often have difficulty interacting with others and interpreting social cues. They conclude that accommodations for people with psychiatric disabilities usually involve human assistance rather than assistive technology. Human assistance most often meant a job coach, but could also involve changes in the roles of supervisors or coworkers. The study also discusses the costs of accommodations for people with psychiatric disabilities.

PDF available at: http://www.bu.edu/cpr/products/articles/2002/macdonald-wilson-etal2002.pdf

Martin, N., & Owen, G. (2004). Survey of Minnesotans enrolled in the Medical Assistance for Employed Persons with Disabilities (MA-EPD) program. St. Paul, MN: Wilder Research Center.

This report presents findings from a random-sample telephone survey of 450 enrollees in Minnesota's MA-EPD program, the state's Medicaid Buy-In program. The survey is part of an overall program evaluation to gather baseline information from participants, establish consumer priorities for improvements, and identify barriers to employment and use of workplace PAS.

Nearly two-thirds of enrollees reported a primary disability of mental health problems, chemical dependency, developmental disability, or cognitive impairment. Of the one quarter of all working respondents receiving some type of accommodation on the job, almost two thirds said they used flexible work schedules. Four percent of working enrollees reported using workplace PAS; most non-users of workplace PAS said they did not need it. Nearly half of workplace PAS users got services for only one hour per day, and 90% felt they were getting enough PAS at work.

The largest benefit of the MA-EPD program reported by enrollees was the quality of their health care coverage and the prescription drug benefits. Health-related and disability issues, primarily weakness, tiredness, and fatigue, were the most commonly reported barriers to employment.

The report's recommendations include conducting more MA-EPD outreach to the population of PAS users, as well as other improvements in outreach, information and referral, administration, and program design.

Available at: http://www.dhs.state.mn.us/main/groups/disabilities/ documents/pub/dhs_id_029455.pdf

Maximus (2005). Inside employment networks. Alexandria, VA: Author.

This report presents descriptions of 32 Employment Networks (ENs) across the country participating in the Ticket to Work program. The ENs included businesses, independent living centers, faith-based organizations, local Workforce Investment Boards, and other agencies and organizations, and served a variety of targeted consumer groups. Through telephone interviews and document review, the study found several common themes and business practices shared by the ENs.

Most ENs had decided to participate in the Ticket program because they were positioned to do so and the program was consistent with their core business and mission. ENs tended to use existing organizational resources and staff to serve Ticket-holders, and most had at least one staff person dedicated to the Ticket program. ENs usually used up-front screening tools to assess Ticket-holders. Some ENs employed various marketing techniques, and others did no marketing Many ENs reported that local Benefits Planning Assistance and Outreach (BPAO) programs were valuable partners, and collaborated extensively with other organizations, including state Vocational Rehabilitation agencies and One-Stop Centers. While many ENs successfully used partnerships with employers to help Ticket holders find jobs, others reported that the local economy was a barrier to employment.

PDF available at: http://www.yourtickettowork.com/selftraining/booklet%20pages%20CS13%20stitched.pdf

McCormick, S., Julnes, G., & Liese, H. (2005). Outcomes from the consumer survey of the Utah Benefits Planning Assistance and Outreach Program. Salt Lake City, UT: University of Utah, Center for Public Policy & Administration.

This report presents findings from a survey of 173 consumers who received services under a Benefits Planning Assistance and Outreach (BPAO) program funded through the Social Security Administration, Utah's Medicaid Infrastructure Grant, and the state vocational rehabilitation and workforce development agencies. The program serves SSDI and SSI beneficiaries who want to learn how working will affect their cash benefits and Medicaid/Medicare coverage. It is one component of the state's WorkAbility program, which includes the state's Medicaid Buy-In, Ticket to Work, and Employment Related Personal Assistance programs.

The goal of the survey was to determine whether the BPAO program was meeting consumers' needs, if consumers felt they were more informed about how working would affect their benefits, and if the program was associated with an increase in the number of people who were employed. Among other findings, most consumers were satisfied with the services received, with those receiving more intensive services reporting greater satisfaction, and a large majority of respondents agreed that BPAO's services helped them understand how employment would affect their benefits. Although there was a 30% increase in employment, most respondents were not working. Findings indicate a need for greater outreach on WorkAbility's other programs, since relatively few BPAO consumers were making use of them.

PDF available at: http://www.workabilityutah.org/uwin/webpage/ products/BPAO_survey_report_jan05.pdf

O'Brien, D., Revell, G., & West, M. (2003). The impact of the current employment policy environment on the self-determination of individuals with disabilities. Journal of Vocational Rehabilitation, 19 (2), 105-118.

This paper describes two policy initiatives — consumers' use of Vocational Report Cards to evaluate community rehabilitation providers, and the Benefits Planning, Assistance and Outreach program authorized under the federal Ticket to Work and Work Incentives Improvement Act.

The Report Card is intended as a tool to provide consumers with informed choice in selecting vocational services. Based on input from focus groups of mental health consumers, it includes quality indicators of service outcomes and consumer satisfaction. The state VR agency developed and piloted the Report Card and has planned to extend its use, with modification, to all contracting community rehabilitation providers offering employment-related services.

The article summarizes early findings from the BPAO program nationwide, based on data collected by Virginia Commonwealth University, and describes how provider reimbursement features of the Ticket program might discourage providers from accepting Tickets, thus limiting consumer choice in obtaining employment-related services.

PDF available at: http://www.worksupport.com/Main/downloads/ios_impact.pdf

Pita, D.D., Ellison, M.L., Farkas, M., & Bleecker, T. (2001). Exploring personal assistance services for people with psychiatric disabilities. Journal of Disability Policy Studies, 12 (1), 2-9.

This article explores the concept of PAS applied to people with psychiatric disabilities, through a study of state policy, secondary analysis of PAS programs for all disability populations, and a needs assessment of mental health consumers. Findings indicate that state administrators confuse PAS with psychiatric rehabilitation and case management, which are services distinct from PAS but which may overlap (for example, assistance with scheduling clinic appointments or arranging transportation). The authors note that the context and purpose of the service, not the specific service rendered, distinguishes PAS from case management, with the former embodying independent living, empowerment, and non-reliance on professional and medical expertise. In general, administrators were unable to report the number of people with psychiatric disabilities served by PAS or how PAS services for this population differed from PAS provided to other populations.

Consumers surveyed most frequently identified transportation as the most important PAS service, as well as providing emotional support and help with negotiating service systems. Help with coping with on-the-job stress was mentioned by nearly half as very important. The findings point to the need for additional research on psychiatric PAS to inform future program planning, and the need for technical assistance for states implementing psychiatric PAS.

Available at: http://www.worksupport.com/documents/proed10.html.htm

President of the United States (2004). New Freedom Initiative: A progress report. Washington, DC: Author. This report is the third in a series of annual progress reports highlighting accomplishments under the New Freedom Initiative since its initiation in 2001. The New Freedom initiative aims to promote the full participation of people with disabilities in all areas of society by increasing access to assistive and universally designed technologies, expanding educational and employment opportunities, and promoting increased access into daily community life. The report describes actions of the President and federal agency leadership in achieving these goals.

Several federal activities focused on improving access to personal assistance services. For example, in FY 2003, the Centers for Medicare and Medicaid Services funded a $6 million demonstration grant for states and community-based providers to test new strategies to recruit, train, and retain direct service workers. The Administration on Aging has continued its National Family Caregiver Support Project to provide support systems for informal caregivers. Other initiatives have sought to meet the unmet transportation needs of people with disabilities, expand rental housing and homeownership opportunities, create community-based alternatives to institutionalization, and otherwise promote the full integration of people with disabilities.

Available at: http://www.whitehouse.gov/infocus/newfreedom/

Presidential Task Force on Employment of People with Disabilities (2002). People with disabilities: Strengthening the 21st century workforce. Washington, DC: Author.

This is the fourth and final report issued by the Presidential Task Force on Employment of People with Disabilities. It describes federal-level activities that had been completed and were then underway to eliminate barriers to employment for Americans with disabilities.

Federal initiatives addressed expansion of employment and training programs, expanding opportunities for youth with disabilities, employment in the federal government, implementation of the Ticket to Work program, supporting entrepreneurship for people with disabilities, veterans' issues, workforce development for providers of personal assistance services, and accessibility of community programs and services.

PDF available at: http://www.workworld.org/ptfead/ptfead_2002.pdf

Purdin, L., Liese, H., & Lehmann, S. (2003). Employer perception of need when hiring and retaining people with disabilities. Salt Lake City, UT: Utah Governor's Committee on Employment of People with Disabilities.

The report summarizes comments collected in 6 industry-specific focus groups on the topic of employers' needs when hiring and retaining workers with disabilities. Based on these comments, the report also suggests ways of helping employers hire and retain people with disabilities, and of disseminating relevant information to employers. The Governor's Committee on Employment of People with Disabilities in Utah conducted focus groups with employers in six industries (call centers, hospitality, manufacturing, technology, retail, and health care) in three major cities (Salt Lake City, Ogden, Provo) on their needs when hiring and retaining people with disabilities. The questions asked of the focus group participants ranged from their current practices and experiences in hiring and employing people with disabilities, to what additional types and sources of information would aid these employers most in recruiting, hiring and retaining people with disabilities. The governor's Committee found that employers in the focus groups generally desired more information on hiring people with disabilities, but were not aware of what information they needed or even what resources were available to them. Some of the specific areas in which additional information was requested were: ADA requirements, job accommodations, assistive technology, best practices of other employers, legal and financial issues, and lists of state-funded resources. The Governor's Committee also observed that employers preferred to receive information from quick and user-friendly sources, such as a telephone hotline, a website, or one-page fact sheets, and that employers preferred networking with other employers rather than receiving information directly from government agencies.

Available at: http://www.uwin.org/uwin/webpage/products.htm

Radtke, J. (1998). Achieving successful employment outcomes with the use of assistive technology. Twenty-fourth Institute on Rehabilitation Issues. Menomonie, WI: University of Wisconsin-Stout, Stout Vocational Rehabilitation Institute.

This document, developed by a study group of the Institute on Rehabilitation Issues, explores how vocational rehabilitation (VR) professionals can promote the use of assistive technology (AT) to help consumers achieve successful competitive employment.

The document addresses approaches to providing AT and the role of the VR counselor and other participants in the AT "team." A chapter on challenges to VR administrators and commissioners recommends strategies to strengthen the agency's commitment to obtaining AT for consumers who can benefit from it. The discussion of the process of AT service delivery covers the use of AT to prepare consumers for vocational rehabilitation and employment through the use of AT on the job, including both low-tech accommodations and high-end computer adaptations.

Creative strategies involving multi-agency collaborations are presented, including alternative funding resources, recycling technology, equipment demonstration centers, equipment loan banks, telecommunication device distribution programs, and other innovative programs.

Available for $21.95 from http://www.cec.uwstout.edu

Ratzka, A. (1996). STIL, the Stockholm cooperative for independent living. Retrieved June 26, 2006, from http://www.independentliving.org/docs3/stileng.html

This article describes a Swedish cooperative (STIL) created and managed by people with disabilities to provide personal assistance services (PAS) to its members. Background materials provide an understanding of context of the cooperative, including information about the Swedish social welfare system, and national insurance benefits. In STIL, the members with disabilities pool the funds that the national insurance allots to them for PAS services. The cooperative hires the personal assistants, who are supervised by the individual members who use their services. Personal assistance services are provided wherever they are needed, including the workplace. Existing members train new cooperative members in how to manage their PAS, and on-going peer support helps members solve any problems to become even better managers of their own PAS. STIL provides a model for a user-run PAS cooperative that has been adopted throughout Sweden and internationally.

Available at: http://www.independentliving.org/docs3/stileng.html

Rudrud, E. (2002). St. Cloud University. South Dakota Medicaid Infrastructure Grant. South Dakota Freedom to Work Survey Report. Black Hills Special Services through contract with the South Dakota Department of Human Services, Division of Rehabilitation Services. Centers for Medicare and Medicaid Services, Project Number P-91485/8.

According to the South Dakota Medicaid Program, two major employment barriers for people with disabilities are the lack of comprehensive PAS, and the lack of Medicaid buy-in for employed people with disabilities. The Freedom to Work Survey assessed the needs and opinions of over 1,000 South Dakotans with disabilities regarding employment, health insurance, current services, and additional services. The survey included individuals who had been employed during the last two years and experienced difficulties at their workplace, and individuals who had not worked during that time.

The survey reports information on recipients’ health insurance and employment status, the funding and source of home and workplace PAS (if used), the types of services or supports used and/or needed in the workplace, and reasons for not working. Among other findings, one-third of unemployed respondents reported fear of losing their disability cash benefits and/or health insurance as the major reason for not working, and 57% said they would consider working if their current health care benefits would not be lost. One third of working PAS users said that PAS at the workplace was provided through an agency, and 29% said they needed additional PAS at work. The Freedom to Work Project planned to further analyze the results in preparation for expanding PAS in South Dakota and developing a Medicaid Buy-In program.

Available at: http://www.sd-ccd.org/pdf/ftw/toc.pdf

Sally, S.T., & Glantz, L. (2004). MaineCare enrollees with disabilities work experience: Results from a 2002 survey. Portland, ME: University of Southern Maine, Muskie School of Public Service.

This report presents results of a survey of work experiences of people with disabilities enrolled in Maine's Medicaid program who had never been enrolled in the state's Buy-In program. Findings are compared to those of a similar survey conducted in 2001 with participants in the state's Medicaid Buy-In program.

Of the 524 people interviewed in the 2002 survey, only 12% were working for pay, though over half of those not working said they wanted to work. Working respondents most frequently reported using unscheduled time off and control over pace and schedule as work supports. Though a very small percentage of workers reported using paid PAS at the workplace or at home, 23% said they used unpaid PAS. Sixteen percent of non-workers said they would need workplace PAS in order to work, 22% said they would need PAS at home or to get ready for work, and 45% said they would require a job coach or help with work tasks.

Earnings and number of hours worked by MaineCare recipients were similar to those of Medicaid Buy-In participants. Over a third of MaineCare recipients were worried about losing their Medicaid benefits, and most working respondents did not have access to employer-provided health insurance. Findings suggest the need for more outreach and education on the Medicaid Buy-In option and other work incentives.

PDF available at: http://choices.muskie.usm.maine.edu/2002%20Survey%20Report.pdf

Sheen, J., Barkdull, C., & Holt, J. (2005). Employment Personal Assistance Services (EPAS) evaluation report. Salt Lake City, UT: Utah Department of Health.

Utah's EPAS program is a Medicaid-linked PAS program designed to support working individuals with disabilities at home and in the workplace. The purpose of this evaluation was to provide a description of the 35 participants in EPAS, to understand their perceptions of the program, and to identify strengths and weaknesses in program implementation. The study used state administrative data and interviews with service brokers and participants to develop preliminary findings and recommend improvements.

Over three-fourths of participants required help with transportation; about one-fourth required PAS in the workplace. In general, participants felt that the program had positive impacts on their work situation, capacity to work, and work attitudes. Although EPAS has contributed to participants' increased earnings and ability to maintain employment, many still had concerns about how work would impact their Social Security benefits and Medicaid coverage.

The study's recommended that EPAS provide additional training for participants in managing PAs, expand the number of fiscal employer agents, develop targeted outreach efforts, set up a pool of personal assistants for back-up support, and continue information and referral activities.

PDF available at: http://www.workabilityutah.org/uwin/ webpage/products/EPAS_Final3-20.pdf

Silverstein, R. (2003). The applicability of the ADA to personal assistance in the workplace. (Policy Brief). Boston, MA: The Institute for Community Inclusion.

Americans with significant disabilities often are unable to find health care coverage that allows them to live independently and be in the workforce. Personal assistance services (PAS) allow people with disabilities to obtain and retain employment. The fear of losing health care coverage and related services is one of the barriers to people with disabilities entering the workforce. Many states are analyzing how to provide coverage for PAS under Medicaid. States need to understand the obligations of employers to provide PAS under the Americans with Disabilities Act (ADA). This brief provides definitions of PAS and a review of Title I of the ADA, and it reviews statute, regulations, and policy interpretations from the Equal Employment Opportunity Commission (EEOC) and the Department of Labor. The brief lists types of PAS that are considered to be reasonable accommodations under the ADA because they are job-related. The brief also points out that the employer can always provide accommodations beyond those required by the ADA. Job-related assistance to perform job tasks most likely is considered a reasonable accommodation by the ADA, while assistance in performing personal tasks like eating, dressing, toileting, and personal hygiene generally will not be considered as a reasonable accommodation by the ADA.

Available at: http://www.disabilitypolicycenter.org/pas.htm

Siperstein, G.N., Roman, N., Mohler, A., & Parker, R. (2006). A national survey of consumer attitudes toward companies that hire people with disabilities. Journal of Vocational Rehabilitation, 24(1), 3-4.

Studies have shown that employers’ negative attitudes and fears may prevent them from hiring people with disabilities. A recent study polled 803 customers of businesses nationwide to learn more about their attitudes toward companies that hire people with disabilities. A large majority of the surveyed customers (75%) had direct experience with people with disabilities at businesses, and most of their experiences were positive. Ninety-two percent (92%) of customers responded positively to companies that hire individuals with disabilities, and 87% responded that they would prefer to patronize businesses that hire people with disabilities. While these findings do not directly affect PAS policies, this information clearly has implications for employers’ willingness to hire and accommodate people with disabilities.

Web link to purchase full article for $20: http://www.iospress.metapress.com/openurl.asp?genre=article&issn=1052-2263&volume=24&issue=1&spage=3

Stapleton, D., Nowak, M., & Livermore, G. (2001). The role of supports in successful labor force entry for youth with disabilities. Falls Church, VA: The Lewin Group.

This report is part of a series examining the role of supports in enabling people with significant disabilities to succeed in competitive employment, and improving employment outcomes for people with disabilities. Through a series of three focus groups, this study looked at the experiences of working individuals over age 18 who became employed after the onset of their disabilities.

The study found that employment and other success requires strong motivation; participants strongly preferred mainstream education over segregated special education; their transition to work was challenging; and participants value individualized services and supports that enable them to participate in society. Loss of health care coverage was a major concern in the transition process, as was understanding the complexities of moving from Medicaid/SSI eligibility as a child to eligibility as an adult.

Policy implications of the findings are that de-coupling Medicaid eligibility from SSI, as is done under the Medicaid Buy-In program, will motivate people to work and increase work expectations, and that federal policies should help make workplace accommodations more available. Services and supports should help youth with transitions in housing and health care as well as employment. Finally, policy should promote the use of individualized supports not provided directly by the government, including informal supports from family and friends.

Available at: http://www.aspe.hhs.gov/daltcp/reports/youthlfe.htm

State of California, Department of Social Services. (2003, October). All-county letter no. 04-43: In-Home Supportive Services (IHSS) in the workplace. (Available at http://www.dss.cahwnet.gov/getinfo/acl04/pdf/04-43.pdf.)

This letter to all California county welfare directors and IHSS program managers explains implementation of AB 925, a state bill passed in 2002 allowing consumers of Medicaid-funded personal assistance services to utilize PAS services in the workplace. The legislation allows people who use In-Home Supportive Services to transfer service hours authorized for use in their homes to their workplaces. The memo notes that recipients cannot receive additional service hours in the workplace beyond those authorized for use in the home, defines what types of reimbursable services may be provided in the workplace, and specifies that recipients must get county approval before transferring service hours to the workplace.

Available at: http://www.dss.cahwnet.gov/getinfo/acl04/pdf/04-43.pdf

Stoddard, S., & Kraus, L. (2006). Arranging for personal assistance services and assistive technology at work. A report of the Rehabilitation Research and Training Center on Personal Assistance Services. Disability and Rehabilitation: Assistive Technology, 1(1-2), 89-95.

For an employee with a disability, reasonable accommodation can make the difference in finding work, maintaining employment, and succeeding on the job. Today, employers and employees are more aware that appropriate accommodations, including workplace personal assistance services (PAS) and assistive technology, improve an employee's ability to succeed. While assistive technology is widely used as an accommodation, workplace personal assistance is less understood. This study qualitatively analyzed 60 interviews with workplace PAS users, employers, and employment organizations familiar with workplace PAS. The study found that requirements for personal assistance accommodations focus on task-related needs. Personal care needs at work are not included in the Americans with Disabilities act but may be needed by the employee. Employers and PAS users have developed many creative ways to address PAS need. Organizations can construct approaches to fit their particular needs, abilities, and constraints. Successful practices included establishment of policies for arranging for PAS; centralization of accommodation budgets to remove work unit disincentives; and providing a shared personal assistant for interpreting or for task-related and personal care tasks. A number of important research questions remain. What is the extent of the need for PAS in the workplace? Will an expanded PAS supply increase the employment opportunities for people with disabilities? Will better models of workplace PAS be adopted by employers?

Available at: http://journalsonline.tandf.co.uk/(ayywn0u5ws1ah3egqszfkm45)/app/home/contribution.asp?referrer=parent &backto=issue,10,16;journal,4,4;linkingpublicationresults,1:119756,1

Stone, D. (2006). Providing personal assistance services through a Medicaid State Plan Option. Center for Workers with Disabilities. Retrieved August 24, 2006 from http://www.aphsa.org/disabilities/home/docs/ PAS%20as%20a%20State%20Plan%20Option-%20Doug%20Stone.pdf

This report details and analyzes the initiatives undertaken by five states (California, Maryland, Nebraska, New Jersey, and Utah) to extend the availability of personal assistance services (PAS) to people with disabilities through existing Medicaid State Plan Options (SPO). It also discusses Iowa’s extensive study of whether to add a Personal Care SPO, including specific service recommendations; Iowa ultimately decided that the cost was too high to offer the service. Background information is provided on the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA) and the Medicaid Infrastructure Grants (MIG), which have enabled some states to expand their coverage of PAS, including workplace PAS. In particular, the report describes the mechanism of Medicaid Personal Care SPOs and presents figures on costs and rate of participation in Personal Care SPOs nationwide and for specific states, including Alaska, Arkansas, California, Massachusetts, Michigan, Missouri, New Mexico, and New York. In addition, the report describes states’ attempts to control the cost of Personal Care SPOs, with examples from the following states: Alaska, Arkansas, California, District of Columbia, Idaho, Kansas, Maine, Missouri, Nebraska, New Hampshire, North Carolina, Rhode Island, South Dakota, and West Virginia. The report recommends future research on utilization of Personal Care SPOs by Medicaid Buy-In participants, including costs and specific services utilized and needed for work as well as at home.

Available at: http://www.aphsa.org/disabilities/home/docs/ PAS%20as%20a%20State%20Plan%20Option-%20Doug%20Stone.pdf

Strobel, W., & McDonough, J. (2003). Workplace personal assistance service and assistive technology. Journal of Vocational Rehabilitation, 18, 1007-112.

This paper examines how assistive technology can be utilized in conjunction with personal assistance services in the workplace. Through case examples, the authors show how assistive technology can assist an individual with a disability to become more independent and productive in the workplace. The impact of disability and environment on assistive technology is discussed. In addition, the authors review factors influencing the selection and utilization of assistive technology at the workplace and demonstrate how the use of assistive technology can lessen an individual's dependence on a personal assistant while at work.

PDF available at: http://www.worksupport.com/Topics/downloads/workplacePAS.pdf

Sweeney, E. P. (2004). SSA's disability demonstration projects likely to provide important information about disability work incentives. Washington, DC: Center on Budget and Policy Priorities.

This analysis describes new demonstration projects underway at the Social Security Administration that focus on disability and work. The report discusses projects by target population and highlights projects focused on current beneficiaries, applicants for benefits, and youth with disabilities. The projects focused on current beneficiaries include: 1) Employment Supports: The Benefit Offset Demonstration Project, 2) Employment Supports: The Ongoing Medical Benefits Demonstration Project, 3) Mental Health Treatment Demonstration Project, and 4) Work Incentives for Participants in the Florida Freedom Initiative. Projects focused on applicants for benefits include: 1) Early Intervention Demonstration Project, 2) Temporary Allowance Demonstration Project , and 3) Interim Medical Benefits Demonstration Project. The major youth project discussed in the report is the Youth Transition Demonstration project. The report emphasizes that these projects will provide policymakers with important information in the years ahead.

Available at: http:// www.cbpp.org/8-6-04socsec.htm

The Employment Policy Group (2003). Using Workplace Personal Assistance to Improve Recruiting and Retention [Brochure]. Des Moines, IA: University of Iowa, Center for Disabilities and Development.

This 12-page brochure sets out the business case for personal assistance in the workplace. It presents workplace personal assistance (WPA) as a way to recruit and retain qualified employees. The brochure presents examples of WPA, projected needs for skilled workers, and offers a narrative example of how WPA was implemented in an accounting firm. It addresses Frequently Asked Questions (FAQs) such as:
Do co-workers provide WPA services?
What will WPA cost?
Who pays these costs?
Are there ways to reduce these costs?
Why invest in providing WPA when the person might leave for another job?
Are there any special liability considerations if I provide WPA? and
Who is responsible if the assistant is injured in the workplace?

Available at: http://www.nasmd.org/disabilities/pubs/special.asp

The Lewin Group, Inc. (2001). Research on employment supports for people with disabilities: Summary of the focus group findings. Washington, D.C.: U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP).

This report summarizes findings from focus groups conducted in three states for a study on employment supports for people with disabilities. The 284 participants, all of whom had significant disabilities and were competitively employed, addressed the events and factors affecting their employment decisions, the relative importance of specific factors, and the reasons for successful and unsuccessful employment attempts. Access to health care was a primary concern in both obtaining and maintaining employment. Other important factors included VR funding for computers, assistive technology, and training and education; workplace accommodations and supportive supervisors; and personal motivation to succeed. Personal assistance services was less frequently mentioned as a major support, but PAS users credited their assistants with helping them on the job and providing in-home services that enabled them to work.

Other factors identified as important to successful work efforts included non-institutional housing options, reliable transportation; Plans to Achieve Self-Support (PASS); and supports from family and friends, including informal in-home PAS and help with transportation.

Available at: http://aspe.hhs.gov/daltcp/reports/fgfind.htm

Thornton, C., Livermore, G., Stapleton, D., Kregel, J., Silva, T., O'Day, B., et. al. (2004). Evaluation of the Ticket to Work program: Initial evaluation report. Washington, D.C.: Mathematica Policy Research, Inc.

This evaluation of the Ticket to Work and Self Sufficiency (TTW) program identifies problems in the program's early implementation and offers suggestions for improvement. As of August 2003, when this report was completed, the Social Security Administration had rolled out TTW in 33 states and the District of Columbia The study found that SSA had implemented all aspects of the TTW program, including mailing Tickets to over 5 million SSDI/SSI beneficiaries and making payments to some of the providers as early participants met milestones or left the SSDI/SSI rolls. However, beneficiary enrollment remained very low, relatively few employer networks (ENs) had been recruited, and several had terminated their EN status or simply stopped accepting Tickets. EN Ticket assignments were concentrated among a few providers, with most assignments going to state vocational rehabilitation agencies. ENs reported losing money on their TTW operations, felt that SSA needed to market the program more effectively. and were concerned that the TTW payment scheme favored state vocational rehabilitation agencies and exposed other ENs to too much financial risk.

The report notes that SSA had started to address these problems by streamlining the payment process for ENs and developing a national marketing campaign, and was considering other measures to increase financial incentives for ENs and develop a more diverse base of ENs.

PDF available at: http://www.mathematica-mpr.com/publications/pdfs/evalttw.pdf

Ticket to Work and Work Incentives Advisory Panel (2004). Advice report to Congress and the Commissioner of the Social Security Administration: The crisis in EN participation—a blueprint for action. Washington, DC: Author.

The Ticket to Work and Work Incentives Improvement Program was passed in 1999 to improve access to and quality of rehabilitation services available to SSDI and SSI recipients. Three years later, the Ticket program had failed to recruit the anticipated number of new employment service providers, called Employment Networks (ENs). The Advisory Panel had been concerned that EN participation would be limited by insufficient financial incentives, as well as inadequate training and marketing efforts.

This study found that the Ticket Program was serving only a fraction of eligible SSDI/SSI beneficiaries who could benefit from the program. Although 1,000 providers were enrolled in the program, only one-third of those operating actually accepted Tickets. The program placed too much financial risk on ENs, paid significantly lower reimbursements to ENs for serving SSI recipients rather than SSDI recipients, involved long delays in processing payment claims, and imposed burdensome participant tracking requirements on ENs. Further, there was no national marketing plan to ENs or coordinated training and technical assistance effort.

The Panel recommended a number of regulatory, administrative, and statutory changes to increase financial incentives for ENs, improve claims administration, involve the Panel in implementing a strategic marketing plan, and develop a coordinated training and technical assistance strategy.

Available at: http://www.ssa.gov/work/panel/panel_documents/reports.html

Ticket to Work and Work Incentives Advisory Panel (2004). Annual report to the President and Congress: Year Four. Washington, DC: Author.

Calendar year 2003 marked the rollout of the Ticket to Work program to the 20 states not yet participating in the program. This fourth annual report of the Advisory Panel reviews implementation of the Ticket to Work program through the end of that year, identifies significant problems, and makes recommendations for improvement.

The Panel found that the Social Security Administration had not adequately marketed the program to SSI/SSDI beneficiaries, failed to engage enough employment networks (ENs) in the program, and failed to support the ENs that had enrolled. Only a fraction of eligible beneficiaries were being served by ENs, and only a third of the providers enrolled were actually accepting tickets and serving. beneficiaries. These problems, the Panel found, were due to provider reimbursement disincentives, insufficient training on the Ticket program for SSA staff, lack of coordination among federal agencies at the national and service delivery levels, and other factors. The Panel's many recommendations included modifying the payment system for ENs, requiring SSA to improve its marketing and outreach activities, increasing funding for more training and outreach to parents and youth on SSI work incentives and transition planning, and mandating increased cooperation among federal agencies in implementing the program.

PDF available at: http://www.ssa.gov/work/panel/panel_documents/ pdf_versions/FinalYearFourAnnualReport.pdf

Turner, E. (2003a). Using a personal assistant in the workplace. Journal of Vocational Rehabilitation, 18(2), 81-85.

This article describes the importance of PAS in the workplace for people with significant disabilities. PAS is often essential to enable people with disabilities to obtain and retain employment. In addition, the right kinds of PAS can maximize the efficiency of the worker with a disability. Discussing workplace PAS compared to PAS at home, the article highlights differences between the two settings, and suggests training approaches for work settings. The article offers specific suggestions on how to recruit, hire, and manage personal assistants in work settings.

Web link to purchase full article for $20: http://iospress.metapress.com/openurl.asp?genre=article&issn=1052-2263&volume=18&issue=2&spage=81

Turner, E. (2003b). Finding the right personal assistant. Journal of Vocational Rehabilitation, 18(2), 87-91.

This article describes a self-assessment process that enables workers with disabilities to determine their own particular PAS needs in the workplace. The self-assessment tool assists in identifying and selecting