Center for Personal Assistance Services Bulletin
January 2007 - Volume 4, Issue 1
In this issue:
- Center for Personal Assistance Services State of the Science Conference
- On the Center for PAS website
- Research articles and reports
- SELECTED CONFERENCES DURING January, February, and March 2007
The Center for Personal Assistance Services provides research, training, dissemination and technical assistance on issues of personal assistance services (PAS) in the United States. Personal assistance services (PAS) refer to help provided to people with disabilities to assist them with tasks essential for daily living. These tasks include bathing, dressing, getting around, toileting, eating, shopping, remembering things, and other activities. PAS, along with assistive technology such as wheelchairs, text readers, and hearing aides, help people with disabilities to participate in activities at home, at work, and in the community.
The purpose of this newsletter is to provide the latest news on issues relating to formal and informal PAS, home & community-based services, the PAS workforce, and workplace PAS within and outside of the Center.
Further detail about the Center staff and advisors can be found at http://www.pascenter.org/about/
Center for Personal Assistance Services State of the Science Conference
It is now less than four months until the Center for Personal Assistance Services at the University of California, San Francisco will host its State of the Science Conference, entitled "Meeting the Nation's Need for Personal Assistance Services: State of the Science" on Friday, April 27, 2007 at the National Press Club in Washington, DC.
The following topics will be covered at the conference:
- Personal Assistance Services: A Public Policy Challenge
- Need and Unmet Need for PAS, Its Consequences, and Costs
- Home and Community Based Services and Personal Assistance: National Trends and State Variations
- PAS Research on the Workforce and in the Workplace
- Trends in the PAS Workforce: Where Have We Been and Where Are We Going
- The ADA and Beyond: Reducing Barriers to PAS at Work
- Future Research and Policy Directions
Registration for the conference is free but space is limited so please register in advance. Housing will be available at the Renaissance Washington DC Hotel. Registration and hotel information is available on the PAS Center website at http://www.pascenter.org/sos_conference.
The Center is funded by the National Institute on Disability and Rehabilitation Research (NIDRR) #H133B031102. In addition to NIDRR funding, the Center has received a conference grant from the Agency for Healthcare Research and Quality (#1R13 HS016608-01) to assist with the funding of the conference in Washington, DC, allow the conference to be hosted without a registration fee.
On the Center for PAS website
The following are new resources available on the Center for PAS website (http://www.pascenter.org):
Disability statistics for 2005
The Center for Personal Assistance Services has compiled state and national data on the prevalence of overall disability and of self-care difficulty, by gender, age, race and ethnicity, type of disability, family income, benefit recipiency, employment status, and living arrangement. These statistics are based on our tabulations of public use data from the Census Bureau's American Community Survey (ACS) for 2005, containing information on over 1 million residents of randomly selected U.S. households. Because it is a household survey, people living in institutions such as nursing homes are not included.
To retrieve data on these topics by state, go to http://www.pascenter.org/state_based_stats/disability_stats/state_statistics_acs.php?title=Disability+Statistics
State by state data and report on Medicaid Home and Community-Based Services Data, 2002
To retrieve the report, go to http://www.pascenter.org/medicaid/
To retrieve Medicaid HCBS data by state, go to http://www.pascenter.org/state_based_stats/medicaid_hcbs.php?title=Medicaid+HCBS+Data+by+State
To retrieve Medicaid 1915(c) HCBS waiver data by state, go to http://www.pascenter.org/state_based_stats/medicaid_waiver.php?title=Medicaid+1915(c)+Waiver+Data+by+State
State by state data and report on Home and Community-Based Services: Medicaid Research and Demonstration Waivers
To retrieve the report, go to http://www.pascenter.org/state_based_stats/demo_waivers/index.php
To retrieve data on these topics by state, go to http://www.pascenter.org/state_based_stats/demo_waivers/demoWaivers.php?title=Demo+Waivers+Information
State Medicaid Infrastructure Grant information
Since 2001, the Medicaid Infrastructure Grant (MIG) program has provided federal funding for state initiatives to support the competitive employment of people with disabilities. States can use MIGs to develop Medicaid supports for working people with disabilities, such as Medicaid Buy-In programs and greater availability of personal assistance services. The program is administered by the Center for Medicare & Medicaid Services (CMS) within the Department of Health and Human Services. The Center for PAS has posted a summary of activities in workplace PAS of the MIGs, a contact list for State MIGs, and a link to the CMS site on the State MIGs.
To see this information, go to http://pascenter.org/workplace_pas/index.php
Updated Olmstead report and lawsuits by state
To retrieve the report, go to http://www.pascenter.org/state_based_stats/olmstead/index.php
To retrieve plans and lawsuits by state, go to http://www.pascenter.org/state_based_stats/olmstead/olmstead_home.php?title=Olmstead+Plans+Lawsuits
New on-line course offered on Olmstead Decision
IL NET,with the on-line facilitation support of Utah State University will conduct an online course entitled: Introduction to Olmstead and Community. The course is targeted at Independent Living Center and Statewide Independent Living Council (SILC) staff, managers, and executives, as well as board members. This is a beginner to intermediate level course. The course runs from February 5-March 2, 2007. The registration deadline is January 22, 2007. Participants will learn about the background and significance of the U.S. Supreme Court Olmstead decision. They will examine a framework for analyzing disability policy that may be used to determine if state and federal laws and programs really support the rights of persons with disabilities. They will also better understand how the ADA formed the basis for the Olmstead Decision and the importance of that decision for people with disabilities. Participants will better understand how and why individuals with disabilities can plan and direct their own services. Additionally, the participants will focus on using the concept of "consumer direction" to support the choices of those who want to leave institutional settings (such as nursing homes) and live in the community with the supports that they need.
For more information on this and other online courses, go to http://www.ilru.org/html/training/online/index.html
Volunteers of America make statement to the Medicaid Commission
The Volunteers of America prepared a statement emphasizing the critical interrelationship of Medicaid Home and Community-Based Services (HCBS) and housing. They recommended policies that will promote a seamless system that will serve not only the coming wave of young retirees, but also the current population of frail and vulnerable seniors, including aging individuals with developmental disabilities. The statement can be found at:http://www.voa.org/NR/rdonlyres/8257DA08-1DBB-49F1-8C41-D56A5ED0F27F/233/MedicaidCommissiontestimony.pdf
Research Articles and Reports
New paper published by Center researchers on PAS in the workplace
The journal Work has published a new report entitled "Personal assistance services as a workplace accommodation" in a special issue on Evidence-Based Practice in Workplace Accommodations. Written by Susan Stoddard, this paper describes current US trends and practices regarding workplace personal assistance services (PAS) as part of available work accommodation options. The results reported on are based on forty-one telephone interviews conducted in 2004, which included 20 workplace PAS users and 21 US employers familiar with workplace accommodations. Employers and consumers described a range of workplace personal assistance currently used. Barriers to expansion of workplace PAS include negative co-worker or supervisor attitude, cost to employers and workers, waiting time for accommodations, employee attitude and knowledge, and confusing terminology. Development of organizational culture that encourages employment of people with disabilities and developing employer-employee partnerships in arranging for accommodations can contribute to workplace PAS solutions. The survey findings contribute to better understanding of current practices related to workplace PAS.
For more information, go to http://iospress.metapress.com/link.asp?id=41nknu070t4ahr2d
New Freedom Initiative - Study of Rebalancing Long Term Care
In 2003, Congress directed CMS to commission a study in up to 8 states to explore the various management techniques and programmatic features that States have put into place to rebalance their Medicaid long-term care systems, and their investments in long-term support services towards community care. For purposes of this study, rebalancing is defined as reaching more equitable balance between the proportion of total Medicaid long-term support expenditures used for institutional services (i.e. Nursing Facilities [NF] and Intermediate Care Facilities for the Mentally Retarded [ICFs-MR]) and those used for community-based supports under its state plan and waiver options." Additionally, a balanced long-term care system offers individuals a reasonable array of balanced options, particularly adequate choices of community and institutional options.
In October 2004, CMS commissioned a study in response to the congressional directive, and 8 States are participating: Arkansas, Florida, Minnesota, New Mexico, Pennsylvania, Texas, Vermont, and Washington. Available under "downloads" are the first year's research results, and topic papers related to special topics.
For more information, go to http://www.cms.hhs.gov/NewFreedomInitiative/035_Rebalancing.asp#TopOfPage
Conversations about the Future of Direct-Care Workforce Research
Vera Salter (of the National Clearinghouse on the Direct Care Workforce) and Mary Ann Wilner interviewed 20 leading researchers with an interest in the long-term care direct-care workforce. In the resulting report, researchers identified potential research topics and methods that could inform and strengthen the movement for quality jobs and quality care. The report outlines broad goals and specific topics for inclusion in a future research agenda. Included as one of the researchers is Center for PAS Director Charlene Harrington.
The report can be found at http://phinational.org/sites/phinational.org/files/clearinghouse/Research%20Conversations.pdf
New report released on long-term care reform in California
This issue brief examines the progress made to improve the availability, access, and quality of long-term care in California since the 1996 release of the landmark Little Hoover Commission recommendations. It includes findings from a survey of long term care experts and a strategy group meeting of long term care stakeholders, both of which confirm that efforts to fulfill the Little Hoover recommendations and tackle broad systemic change have been largely inadequate. The brief highlights three strategic priorities for making significant progress on developing sustainable, high-quality long-term care in California over the next five years.
The report can be found at http://www.chcf.org/publications/2006/12/long-term-care-reform-ten-years-after-little-hoover
Two recent reports examine employment issues for persons with disabilities
The first report, entitled: "The Social Security Administration's efforts to promote employment for people with disabilities: New solutions for old problems," is from the National Council on Disability. It contains recommendations that could be useful in policy and procedural modification discussions by both Congress and the Social Security Administration to significantly address the continuing number of SSA beneficiaries who never leave the SSI and DI rolls, and to increase the number of beneficiaries who enter, or reenter, the U.S. workforce.
To access the report go to http://www.ncd.gov/newsroom/publications/2005/ssa-promoteemployment.htm
The "Final report on best practices for the employment of people with disabilities in state government" is a comprehensive report on the efforts of nine states to employ more people with disabilities in government jobs. Released by the Equal Employment Opportunity Commission (EEOC), the report describes best practices related to recruiting and hiring of people with disabilities for state jobs such as: providing reasonable accommodations for applicants and employees with disabilities; retaining and advancing persons with disabilities within state government; and employing people with disabilities more generally in public- and private-sector jobs. The report highlights some practices that may inadvertently act as barriers to employment for people with disabilities in the states surveyed.
The report can be viewed on-line at: http://www.eeoc.gov/initiatives/nfi/final_states_best_practices_report.html
New report on state strategies for public financing of home and community services for children and youth with serious emotional disturbances
The purpose of this report is to present the results of a study of selected public financing mechanisms that states have used to pay for intensive home and community services for children and youth with SED (serious emotional disturbances). Although the study covers several key public strategies for funding home and community services for children with SED, it focuses particularly on the Medicaid home and community-based service (HCBS) waiver as a result of recent federal and state interest in this particular financing approach. Policymakers have focused on the HCBS waiver partly because this financing mechanism allows states to provide an expanded set of Medicaid services to a limited number of children. With an HCBS waiver, states have considerable flexibility in addressing the needs of high-risk children by paying for services not included in their standard Medicaid state plans; at the same time, they can maintain some control over costs by sharply limiting the number of children enrolled in the waiver program.
This report can be found at http://aspe.hhs.gov/daltcp/reports/2006/youthSED.htm
Report on The Economic Impact of the Medicaid and Community-based Service Waiver Program
This report shows the economic impact of these additional Medicaid dollars on the Utah's state economy. These impacts include the number of jobs and total earnings that will be supported through Medicaid spending during 2006. The tax impacts (effects on state and local tax revenues) have also been estimated. Done by the Utah Developmental Disabilities Council and the Disability Law Center with the Bureau of Economic and Business Research (BEBR).
This report can be found at http://www.gcpd.org/The%20Economic%20Impact%20final.pdf
New Kaiser Commission on Medicaid and the Uninsured Report on Medicaid LTC
The Kaiser Commission on Medicaid and the Uninsured has published a new report titled: Medicaid's Long-Term Care Beneficiaries: An Analysis of Spending Patterns. This analysis of spending patterns of Medicaid's long-term care users (LTC) reveals that the7% of Medicaid beneficiaries using LTC account for over half (52%) of all Medicaid spending. Medicaid's LTC users not only use LTC services, but they also use the program's acute care services more intensively than non-LTC users. Three-quarters of the spending by these high-cost LTC users went towards LTC (community-based and institutional care) and the remaining 25% went towards acute care and other supportive services. These high-cost beneficiaries are among the most disabled and chronically ill of the Medicaid population, with over half being elderly, one-third being disabled and under age 65, and 11% being adults or children not classified as disabled.
The report is available at http://www.kff.org/medicaid/7576.cfm
Journal Features Special Double Issue on Family and Aging Policy, Caregiver Issues
The Journal of Aging & Social Policy recently published a special, two-volume issue on "Family and Aging Policy" (Volume 18, Issue 3/4). In one article, "Preliminary Experiences of the States in Implementing the National Family Caregiver Support Program: A 50-State Study," authors Lynne Friss Feinberg and Sandra Newman find that despite an increasing availability of caregiver supports in all 50 states, there is also a great unevenness in services for family caregivers across and within states. In a second article, "Family and Friends as Respite Providers," Carol Whitlatch and Feinberg argue for consumer-directed respite care options where family caregivers are given flexible alternatives to meet their needs. Other articles of interest address various ways in which both public and private sector policies can be designed to achieve family objectives.
SELECTED CONFERENCES during January, February, and March 2007For more detail about these conferences, go to: http://pascenter.org/conferences/index.php
JanuaryJanuary 12 - January 15, 2007
SILC Congress 2007: Building for our Future.
Hosted By: Ohio Statewide Independent Living Council
Location: New Orleans, LA
January 22 - January 23, 2007
Inaugural Annual UC Conference for Research in Special Education, Disabilities, and Developmental Risk
Hosted By: The Doctoral Steering Committee for the proposed UC Center for Research in Special Education, Disabilities, and Developmental Risk
Location: Harbor View Inn Hotel, 28 W. Cabrillo Blvd., Santa Barbara, CA 93101
FebruaryFebruary 12 - February 13, 2007
National 2007 Health Policy Conference
Hosted By: Academy Health and Health Affairs
Location: Washington, DC
February 24 - February 27, 2007
Forum 2007 - Vision For a New Economy: Workforce Leadership Matters!
Hosted By: National Association of Workforce Boards
Location: Renaissance Washinton, DC Hotel
MarchMarch 06, 2007
Family Caregiving: State of the Art, Future Trends
Hosted By: The National Center on Caregiving, Family Caregiver Alliance In Partnership with The American Society on Aging
Location: Sheraton Hotel and Towers, Chicago IL
March 07 - March 10, 2007
2007 Joint Conference of the American Society on Aging and the National Council on Aging
Hosted By: The American Society on Aging and the National Council on Aging
Location: Sheraton Chicago Hotel & Towers. Chicago, IL.
March 08 - March 10, 2007
Developmental Disabilities: An Update for Health Professionals
Hosted By: UCSF School of Medicine
Location: San Francisco, CA
March 19 - March 24, 2007
22nd Annual International Technology and Persons with Disabilities Conference
Hosted By: California State University, Northridge Center on Disabilities
Location: Los Angeles, CA
March 29, 2007
South Carolina Assistive Technology Expo
Hosted By: South Carolina Assistive Technology Program
Location: Columbia Metropolitan Convention Center, Columbia, South Carolina
This document was developed by the Center for Personal Assistance Services, funded by the National Institute on Disability and Rehabilitation Research (NIDDR) of the US Department of Education, grant #H133BO31102. The opinions contained in this publication are those of the grantee/contractor and do not necessarily reflect those of the US Department of Education. Please credit the source and support of federal funds.
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