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A pdf version of this newsletter can be found at http://www.pascenter.org/newsletter/CenterforPASBulletinJan09.pdf Previous newsletters can be found at http://www.pascenter.org/newsletter/index.php
Center for Personal Assistance Services BulletinJanuary 2009 - Volume 6, Issue 1In this issue:
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/ NewsThe Center for Personal Assistance Services Receives Five-Year Grant For Research On Personal Assistance Services For People With DisabilitiesThe Center for Personal Assistance Services has received its second $4.25 million, five-year grant from the National Institute on Disability and Rehabilitation Research. The funding, for which the Center competed with other institutions nationwide, will enable the Center to continue its research and training activities related to personal care services provided to people with disabilities. “Being awarded this grant for the second time in a row is a testament to the important work that the Center for Personal Assistance Services has accomplished in the past five years,” said Kathleen Dracup, RN, DNSc, dean of the UCSF School of Nursing. “We are excited about the progress we can make for people with disabilities in the next five years.” The Center will continue to study issues regarding the availability and quality of services provided by formal and informal caregivers to some 15 million people nationwide who need help performing activities of daily living, according to Charlene Harrington, PhD, RN, UCSF professor emerita of sociology and nursing, and the Center’s director and principal investigator. “The emphasis of our work is on providing support so that people with disabilities can live and work independently in their community, as opposed to being institutionalized in a nursing home,” Harrington said. In the last five years, research through the Center has determined a more fiscally feasible cost for such care than was previously estimated by the Congressional Budget Office for the Community Choice Act (CCA). The CCA would allow Medicaid to pay for home and community-based services, rather than solely placement in a nursing home, for those who qualify for nursing home level of care. Center research also found that wage levels for PAS workers fell behind those of comparable occupations and that health benefits are scarce and job turnover rates are high among workers. Common services provided by a personal care attendant include help with bathing, eating, dressing, walking, taking medication and shopping for groceries, Harrington said. The Center will continue to conduct research in workforce issues related to home-based and community care. Other research and training topics will include:
The Center also will continue to seek guidance and feedback from the community by working with its advisory committee, which is composed of local and national PAS users, disability advocates, business leaders, independent living center directors and academics. In addition, the Center will collaborate with faculty members at the Burton Blatt Institute, InfoUse, PHI (formerly the Paraprofessional Healthcare Institute), Research Triangle Institute, and the Topeka Independent Living Resource Center, and will work with consultants at the University of Maryland, University of Michigan and the Cardiff Business School. Since 1994, work conducted in the UCSF School of Nursing, and specifically in the Department of Social and Behavioral Sciences and the Institute for Health and Aging, has focused on research and advocacy issues facing people with disabilities. Harrington said the Center’s faculty members are among the nation’s leading researchers in their field, with decades of research and policy experience, hundreds of academic publications, and teaching experience in disability, health, long-term care, and policy studies. Co-principal investigators for the Center include Steve Kaye, PhD, research director, and Mitch LaPlante, PhD, director, both of the UCSF Disability Statistics Center; Bob Newcomer, PhD, UCSF professor of sociology; and Lewis Kraus, MPH, MCP of InfoUse, a Berkeley-based firm specializing in research and dissemination that aids people with disabilities. Other UCSF faculty members include Susan Chapman, PhD, RN; Amy Houtrow, MD, MPH; Joe Mullan, PhD; and Taewoon Kang, PhD. The National Institute on Disability and Rehabilitation Research is part of the U.S. Department of Education’s Office of Special Education and Services. Wall Street Journal Article tells of Service Cuts for Elderly and the DisabledAs States face increased budget shortfalls some States are reducing home care support services for the elderly and disabled, making it increasingly difficult for these individuals to continue to live at home. Currently 15 States are targeting such programs and with a faltering ecomomy 41 States are expected to face budget shortfalls. For more information go to: Majority of States Face Budget Shortfalls; Service Cuts Possible.According to the Center on Budget and Policy Priorities, this year or next year the majority of states will suffer a budget deficit of around 4%. Due to the unsettled economic conditions it is likely that this deficit will grow and these problems are likely to continue for some years. At least 17 states have considered cuts in health care and insurance to low income families as well as cutting programs for the elderly and disabled. At least 15 states are cutting services in the areas of medical, rehabilitative, home care, and other services used by low-income people who are elderly or disabled. For more information go to: Medicare Information for CaregiversMedicare has a new website for caregivers connecting them to Medicare resources. The website provides Information on navigating Medicare, assistance with billing, and exploring care options and other sources of help. For more information go to: New Internet Resource for California Family Caregivers of VeteransVerteran Affairs announces a new internet course aimed at family caregivers of veterans. The course is for unpaid caregivers and caregivers of Veterans with Dementia, TBI and/or PTSD. The course is free and requires an internet connection. The courses goals are to:
For more information go to: The Centers for Medicare & Medicaid Services (CMS) Issues a Final Rule Allowing States to use Medicaid Funds for Consumer-directed Services without a Medicaid waiverMany more Medicaid beneficiaries will now be able to take charge of their own personal assistance services instead of having those services directed by an agency. The CMS ruling guides participating states to allow Medicaid beneficiaries in need of help with the activities of daily living to hire, direct, train, or fire their own personal care workers. Under the new rule, beneficiaries will have the option to hire qualified family members already familiar with the individual’s needs to perform personal assistance (not medical) services. For more information go to: The Centers for Disease Control and Prevention Includes Caregiver Questions in National Health Survey QuestionnaireThe CDC has approved an optional state module on family caregiving for the 2009 Behavioral Risk Factors Surveillance Survey (BRFSS), an ongoing telephone health survey system. The 2009 BRFSS will include one mandatory question to identify the prevalence of informal caregiving in the states. The mandatory question asks whether the survey respondent is providing care or assistance to a friend or relative with a health problem, long-term illness or disability. The optional caregiving module in the 2009 survey includes nine questions that states can include in their BRFSS survey in order to collect more detailed information about the particular caregiving situation to aid in program planning and policy development. States are currently in the process of putting together their BRFSS surveys for 2009. For more information go to: Final Approval in Chambers (Laguna Honda) Class ActionIn 2006, six residents of Laguna Honda Hospital, filed a class action lawsuit seeking access to community-based long-term care services to avoid unnecessary institutionalization in nursing facilities. On September 18, 2008, Judge William H. Alsup granted final approval to the settlement in the Laguna Honda litigation. The residents have been determined to be capable of living in their own homes and in the community. San Francisco’s actions violate the Americans with Disabilities Act, which requires that individuals with disabilities be provided with services in the “most integrated setting appropriate” to their needs. For more information go to: Real Wages Falling For Personal And Home Care Aides.Thanks to the steadily increasing demand for home care, the second fastest-growing occupation in the country is that of personal and home care aides (PHCAs). Yet PHCA wages - which were low to begin with - are failing to keep up with inflation nationwide. "State Chart Book on Wages for Personal and Home Care Aides, 1999-2006", a new report, prepared by PHI for the PAS Center, looks at the decline in inflation-adjusted wages for these crucial workers. Based on data from the Bureau of Labor Statistics, it charts the wages received by personal and home care aides in all 50 states and the nation over a seven-year period. For more information go to: Coping with LTC Budget Cuts – MassachusettsA $700 million cut to the Massachusetts state budget has many wondering how long-term care services will be affected. A $1 million cut to the Extended Care Career Ladder Initiative (ECCLI), a state-funded program that was revamped and streamlined a year ago to improve training and retention of direct-care workers, and an 80 percent cut to a 2009 scholarship fund for CNAs and Home Health Aides are disappointing long term care staff and workers. For more information go to: New York Times Article Shows Personal Cost of Caregiving for Disabled Veterans.An article published in the New York Times (November 12, 2008) reviews the issues of family caregiving for families of veterans who have acquired a disability in the Iraq war. The article presents thoughts for governmental action. To read the copyrighted article, select the link below. For more information go to: Gold Reviews Nursing Home DataIn his latest information bulletin, disability lawyer Steve Gold reviews the CMS Nursing Home Data Compendium, 2008. Steve Gold looks at:
For more information go to: New Medicaid Waiver for Kentucky - Michelle P Waiver.Kentucky residents currently on the Supports for Community Living (SCL) Waiver waiting list and meeting the criteria for urgent need, may now be eligible for the Michelle P. Waiver. This waiver is designed to allow an individual to remain in or return to the community in the least restrictive setting. For more information go to: Canada: 2.7 Million Family Members and Friends Provide Care to Older AdultsA new report from Statistics Canada reveals that one in five Canadians 45 years and older is providing some form of unpaid care to an older adult. One-fourth of those caregivers are 65 years or older. The number of Canadians caring for a senior jumped by 670,000 between 2002 and 2007, fueled in large part by the aging of the population, and now sits at 2.7 million. Caregivers are more likely to be women who are employed and married, and many are members of the sandwich generation. For more information, visit: Letha Chadiha, Ph.D. Receives Gerontology Outstanding Research Mentorship AwardCongratulations to Letha Chadiha, who was the recipient of this year's Gerontological Society of America's Task Force on Minority Issues in Gerontology Outstanding Research Mentorship Award. Letha is an Associate Professor at the School of Social Work, University of Michigan, and serves as a consultant to the PAS Center. This award recognizes individuals who have shown outstanding commitment and dedication to mentoring minority researchers in the field of aging. Winners Announced for Caregiving Legacy Awards - Three Extraordinary Programs Awarded $20,000 Each in National CompetitionThe Family Caregiver Alliance (FCA) and The Rosalinde and Arthur Gilbert Foundation are pleased to announce the recipients of the first annual Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. Awards of $20,000 each will be presented to three nonprofit organizations to recognize extraordinary programs that address the needs of Alzheimer's caregivers. The winning programs qualified in one of three categories: creative expression; diverse/multicultural communities; and policy and advocacy. The programs will be honored at a national conference on aging in March. For more information, visit: JAN's Accommodation and Compliance Series: The ADA Amendments Act of 2008While it remains to be seen if the ADA Amendments Act of 2008 has any impact on PAS in the workplace , The Job Accommodation Network (JAN) has developed a publication and resource page regarding what information is currently available about the Act. The webpage will be periodically updated as additional information is made public. For more information, visit: On the Center for PAS websiteThe following are new resources available on the Center for PAS website (http://www.pascenter.org): Medicaid Home and Community-Based Services Data, 2004In 2004, the federal-state Medicaid program paid for 36 percent of the nation's estimated $158 billion total long-term care expenditures. This report introduces a series of tables that present the latest available (2004) state-by-state, participant and expenditure data for the three main Medicaid home and community-based service (HCBS) programs, and for total Medicaid Long-Term Care. The three main Medicaid programs are: 1915(c) waivers, home health, and state plan personal care. Each of these programs is described briefly. The waiver data are taken from the Form 372 reports that states submit annually to Centers for Medicare and Medicaid Services (CMS). The home health and state plan personal care data are collected annually by PAS Center researchers using a survey of state officials. For more information go to: State Chart Book On Wages For Personal And Home Care Aides, 1999-2006The State Chart Book On Wages For Personal And Home Care Aides, 1999-2006, prepared by PHI, provides information on the wages received by Personal and Home Care Aides (PHCA) in all 50 states and the nation over a 7-year period. The Chart Book provides a first-of-its-kind look at wages and wage trends for PHCAs, the second fastest-growing occupation in the country, and a key job title within the direct-care workforce. Prepared as a resource guide on wages for advocates and policymakers concerned with the direct-care workforce, the data underscore the problem of low and declining real wages for PHCAs, factors which contribute to workforce instability and near-poverty incomes for this high-demand workforce. For more information go to: Nursing Home Trends, 2001-2007A new report has been completed by the University of California, San Francisco, showing trends in U.S. nursing homes by state for the 2001 through 2007. The data are from the federal On-Line Survey and Certification System reports that are completed at the time of the annual nursing home surveys by state Licensing and Certification programs for the U.S. Centers for Medicare and Medicaid Services. For more information go to: Home and Community-Based Services: Introduction to Olmstead Lawsuits and Olmstead Plans – 2008 report.This report provides updated state-by-state information on two of the major issues that have arisen from the 1999 Olmstead Supreme Court. The report contains two tables and a brief outline of the nature and significance of the Olmstead decision. The first table provides information on the formal strategies (Olmstead Plans) that states developed in response to the Olmstead ruling. The second table presents a summary of community integration lawsuits related to Olmstead. For more information go to: New Ask Mike Questions and ResponsesRecently, Mike Oxford answered the following questions:
To read the all of the Ask Mike letters and responses, go to New Features to the PAS WebsiteSeveral improvements have been implemented on the PASCenter web site. These include:
Policy and LegislationSenate Passes the ADA Amendments Act of 2008On September 25, 2008, the ADA Amendment Act (ADAAA) was signed into law and will become effective on January 1, 2009. To understand what the ADAAA means, though, it’s important to understand why the ADA needed amending in the first place. When it was passed back in 1990, the ADA had a definition of disability that was based on the definition used in the Rehabilitation Act of 1973. An individual with a disability has a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or is regarded as having such an impairment. However, over the years the definition of disability has been narrowed over the years, by a series of Supreme Court decisions, to such a degree that most cases became more about whether a person met the definition of disability, rather than focusing on access or accommodation. The ADAAA greatly broadens protection against employment discrimination for workers who have disabilities or who are regarded as having disabilities. For more information go to: California to Reduce Matching Funds for In-Home Supportive Services (IHSS) Worker Wages and Benefits to the Level of California’s Minimum WageEffective March 1, 2009, the State’s share in funding the wages and benefits of IHSS providers in each county would be reduced to the State minimum wage level of $8.00 per hour plus the state would continue to participate up to $0.60 in benefits. For more information, visit: Federal Government Awards New State Grants to Help Veterans and Adults with Alzheimer’s Remain at Home and in the CommunityOn September 29, 2008, the Department of Health and Human Services announced $36 million in new grant programs to 28 states to help older Americans, veterans and people with Alzheimer's disease remain in their homes and communities. Just over $19 million of this funding involves a new collaboration with the Department of Veterans Affairs (VA) to provide consumer-directed home and community-based services to older Americans and veterans of all ages, as part of a Nursing Home Diversion (NHD) grants program. The other $17 million will go to improve the delivery of home and community-based services to people with Alzheimer's disease and their family caregivers. For more information, visit: CMS Issues Final Rule To Empower Medicaid Beneficiaries To Direct Personal Assistance ServicesA final rule that would allow more Medicaid beneficiaries to be in charge of their own personal assistance services, including personal care services, instead of having those services directed by an agency, was announced today by the Centers for Medicare & Medicaid Services (CMS). The rule, on display today at the Federal Register, guides states who wish to allow Medicaid beneficiaries who need help with the activities of daily living to hire, direct, train or fire their own personal care workers. Beneficiaries could even hire qualified family members who may already be familiar with the individual’s needs to perform personal assistance (not medical) services. For more information, visit: Research articles and reportsDisparities in Service Utilization and Expenditures for Individuals with Developmental Disabilities.This study by Charlene Harrington and Taewoon Kang of the PASCenter, examines service utilization and expenditures provided by regional centers to individuals with developmental disabilities living at home and in residential settings in California in 2004–2005. Logistic regressions of secondary data are used to predict the receipt of services, and ordinary least squares regressions are used to examine the predictors of service expenditures. For more information go to: Medicaid Home and Community-Based Service Programs: Data UpdateThis report by Terence Ng, Charlene Harrington and Molly O’Malley presents a summary of the main trends to emerge for the three Medicaid HCBS programs and the results of a survey of policies such as eligibility criteria and waiting lists. For more information go to: New On-Line Survey and Certification System (OSCAR) Reports for 2001 Through 2007A new report has been completed by the University of California, San Francisco, showing trends in U.S. nursing homes by state for the 2001 through 2007. The data are from the federal OSCAR reports that are completed at the time of the annual nursing home surveys by state Licensing and Certification programs for the U.S. Centers for Medicare and Medicaid Services. For more information go to: Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 UpdateIn 2007, about 34 million family caregivers provided care at any given point in time, and about 52 million provided care at some time during the year. The estimated economic value of their unpaid contributions was approximately $375 billion in 2007, up from an estimated $350 billion in 2006. For more information go to: PHI Releases Report on Direct Care Jobs and Economic GrowthOur friends at PHI have released an issue brief outlining how direct-care jobs are uniquely positioned to help repair and stabilize America's economy. The issue brief provides compelling facts and figures about the impact of the direct-care workforce that our nation's leaders must take into consideration as they develop and implement strategies for economic recovery. For more information go to: Violations Widespread at Nursing HomesA study released this week by federal investigators reports 90% of nursing homes were cited last year for violations of federal health and safety standards. For-profit homes were more likely to have problems than other types of nursing homes. Problems found across the country ranged from bedsores to poor nutrition. The Department of Health and Human Services said there were cases in which nursing homes billed Medicare and Medicaid for services that “were not provided, or were so wholly deficient that they amounted to no care at all.” For more information go to: Patient Care Must Be Redefined To Include Family Members; Professionals and Advocates Pledge To Help Educate Family CaregiversIn a first of its kind collaboration, national organizations representing nurses, social workers, family caregivers and people age 50+ have released a report calling for a re-definition of good patient care to include those family members and friends who provide ongoing, often daily, care. Family members are very often not prepared to take on the task of caregiving-especially as many family caregivers are providing services typically reserved for registered nurses and doctors. The report, State of the Science: Professional Partners Supporting Family Caregiving is a joint endeavor of the AARP Foundation, the American Journal of Nursing, the Council on Social Work Education and its Journal of Social Work Education, Family Caregiver Alliance, and Rutgers Center for State Health Policy (New Jersey). For more information go to: Medicare Coverage For Working People With DisabilitiesIndividuals who cannot work due to disability can be eligible for Medicare, but what if they want to go back to work? People most commonly identified as eligible for Medicare are those who are 65 years of age or older. However younger individuals who cannot work because of their disabilities may also be eligible for Medicare. For more information go to: MetLife Market 2008 Survey of Adult Day Services and Home Care CostsIn 2002, the MetLife Mature Market Institute first pioneered the collection of national market survey data on nursing home, assisted living, and home care costs. Since then this market survey data has been updated and released on an annual basis and in 2007 cost information on adult day services was included for the first time. For the 2008 report, hourly rates were obtained for home health aides from licensed agencies and for agency-provided homemaker/companion services. Daily rates were obtained for adult day services. While the 2008 national average hourly rate for homemaker/companions remained unchanged from 2007 at $18 per hour, the average 2008 hourly rate for home health aides increased by 5% from $19 in 2007 to $20 in 2008. Adult day services national average daily rates increased by 5% from $61 in 2007 to $64 in 2008. For more information, visit:http://www.pascenter.org/publications/publication_home.php?id=876 Vermont’s Choices for Care Medicaid Long-Term Services Waiver: Progress and Challenges As the Program Concluded its Third Year.In October 2005, Vermont implemented a Section 1115 Medicaid waiver program that made fundamental changes to how it provides long-term services and supports to low-income seniors and people with disabilities. Called Choices for Care (CfC), the waiver was designed to increase access to home and community-based services (HCBS) while reducing the use of institutional services and controlling overall costs. For more information go to: Trends in the Health of Older Californians: Data from the 2001, 2003 and 2005 California Health Interview Surveys.California's population is getting older. By 2026 the elderly population will double to nearly 8 million. This report examines health statistics on the elderly from three California Health Interview Survey cycles (2001, 2003 and 2005) in order to spotlight current challenges and predict future trends. For more information go to: Selected Conferences During January, February and March 2009For more detail about these conferences, go to: http://pascenter.org/conferences/index.phpJanuaryJanuary 04 - January 06, 2009 January 20, 2009 January 28 - January 31, 2009 January 28 - January 30, 2009 FebruaryFebruary 02 - February 03, 2009 February 17, 2009 February 26 - March 01, 2009 MarchMarch 02 - March 04, 2009 March 05 - March 07, 2009 March 07 - March 10, 2009 March 11, 2009 March 15 - March 19, 2009 March 15 - March 18, 2009 March 16 - March 21, 2009 March 18, 2009 For more detail about these conferences, go to: http://pascenter.org/conferences/index.php 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. To unsubscribe to this Newsletter, please send listserv@listserv.ucsf.edu an email from the email address you wish to unsubscribe with: signoff PAS_NEWS http://www.disabilityinfo.gov
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