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A pdf version of this newsletter can be found at http://www.pascenter.org/newsletter/CenterforPASBulletinApr09.pdf Previous newsletters can be found at http://www.pascenter.org/newsletter/index.php
Center for Personal Assistance Services BulletinApril 2009 - Volume 6, Issue 2In 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/ On the Center for PAS websiteThe following are new resources available on the Center for PAS website (http://www.pascenter.org): PASCenter.org Updated to Reflect New Center PrioritiesThe PAS Center was funded for 5 years in October 2008. The priorities of the new Center are:
PASCenter.org has been reorganized to reflect these new projects. These 3 priority areas have their own home pages. Previous PAS Center web information remains on the website and can be found within the new priority areas. To see these new pages go to: New Policy/Legislation Page on PASCenter.orgThe Center for Personal Assistance Services website has a new resource that covers legislation and policies related to Personal Assistance Services (PAS). The purpose of this web page is to identify and track government policy and legislation which has a direct impact on PAS. The web page contains summaries of current legislation and policies with links to the bills themselves, the congressional sponsor, press releases and other relevant material. Comments on the status of the bills will be provided periodically by Mike Oxford, Executive Director of the Topeka Independent Living Resource Center and former President of the Governing Board of the National Council on Independent Living. The following bills and policies are currently available:
For more information go to: County and City/Place Level Disability Data Posted on PASCenter.orgFor the first time since the 2000 Census, new data on PAS-related disability is available for counties and places with total populations greater than 20,000 persons. Data are obtained from the 2005-2007 American Community Survey which pools three years of data to provide small area estimates. The percentage of disabled individuals who have difficulty with “Self Care” and “Going Outside” are presented for the age groups 16-64 and 65 years and over. This data can be viewed either by county or by place, where a place is defined as a concentration of population either legally bounded as an incorporated place (a city, town, village, and so forth) or delineated for statistical purposes as a census designated place. This data is presented along with state and US statistics for the same measures. The estimates show that disability rates vary considerably across the US: for persons ages 65 and older, for example, the highest rate in the country occurs in West Hollywood, CA, where 45.2 percent have difficulty going outside the home alone while Savage City, MN, has the lowest rate at 1.9 percent. The Center is investigating to what extent demographic and other socioeconomic factors explain these observed variations in the rate of disability across America. For more information go to: 2005 Update of the Medicaid Home and Community-Based Services (HCBS) DataIn 2005, the federal-state Medicaid program paid for 37 percent of the nation's estimated $160 billion total long-term care expenditure according to the latest (2005) Medicaid HCBS data. A report of this information, done by UCSF PAS Center researchers, updates state tables that present the latest available (2005) 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. 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: New Ask Mike Questions and ResponsesRecently, Mike Oxford answered questions concerning agencies for assessment of mental functionality and consumer-directed attendant care services for children. To read all of the Ask Mike letters and responses, go to: NewsNew Monthly Data Series on the Employment Status of People with a DisabilityIn June 2008, questions were added to the Current Population Survey (CPS) to identify persons with a disability in the civilian noninstitutional population age 16 and older. The addition of these questions allowed the Bureau of Labor Statistics to begin releasing monthly labor force data from the CPS for persons with a disability. For more information go to: Family Caregiver Alliance (FCA) Announces Online Tool to Aid Caregiver ProfessionalsA new online database titled, “Emerging Practices & Tools for Professionals” is available on FCA's website. The purpose of this tool is to act as a repository for:
This new tool marks the first step towards the creation of an Innovations Clearinghouse on Family Caregiving of cutting edge programs and policies in caregiving and aging. For more information go to: Winners Announced for Caregiving Legacy AwardsFamily Caregiver Alliance and The Rosalinde and Arthur Gilbert Foundation recently announced 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. For more information go to: NYTimes Editorial: Quality Jobs Needed in Home CareA New York Times editorial makes the link between quality care and quality direct-care jobs - calling for improved labor protections in an area that is "one of the fastest growing" but "one of the lowest paid and most exploitable." For more information go to: Wiener Presents Paper on “Long-Term Care"In March 2009 Josh Wiener, PAS Center Associate, presented the paper, “Long-Term Care: Options in an Era of Health Reform,” at an Alliance for Health Reform session on long-term care in Washington, DC. In this presentation, Dr. Wiener looks at why long term care is important and the fact that system is currently broken. For more information go to: New Fact Sheet on Direct-Care Workers, “Who Are Direct Care Workers?” ReleasedPHI has released a fact sheet called, "Who Are Direct-Care Workers". It details the demographic, employment, and income characteristics of the people who provide an estimated 70 to 80 percent of the paid hands-on long-term care and personal assistance received by Americans who are elderly or living with disabilities or other chronic conditions. For more information go to: PHI Produces State Fact Sheet on Direct-Care Workforce for VermontPHI has created the second in a series of fact sheets on the direct-care workforce. This fact sheet on Vermont examines:
For more information go to: Center for Medicare Advocacy Issues Alert on Assisted Living Facilities and Medicaid ParticipationThe Center for Medicare Advocacy issues weekly alerts on current issues of interest to Medicare beneficiaries. In this alert the Center for Medicare Advocacy looks at the legal protection applying to "assisted living facilities". Many people believe that assisted living provides them with something better: choice, control, independence, and safety in a "non-institutional, community-based setting." What is not widely known is that the protections for nursing home residents provided by the federal Nursing Home Reform Law do not apply to Assisted Living facility residents. For more information go to: Social Security Expands Fast-Track Disability ProcessesMichael J. Astrue, Commissioner of Social Security, recently announced that improvements to the agency's computer modeling system have increased the number of claimants receiving expedited approvals for disability benefits. For more information go to: New Resource Helps Prepare Girls with Disabilities for WorkThe Institute on Community Integration, University of Minnesota, has published "Impact: Feature Issue on Employment and Women with Disabilities," a publication offering personal stories, strategies, research, and resources to enhance employment options for girls and women with disabilities. For more information go to: Department of Labor's Office of Disability Employment Policy Announces Fact Sheets Providing Guidance to Youths with DisabilitiesFact sheets of specific interest to youth with disabilities, their families, and the professionals who work with them are available on the web site of the Department of Labor's Office of Disability Employment Policy. All of the fact sheets provide guidance and explore issues related to disclosing one's disability. For more information go to: Policy and LegislationSecretary of Veterans Affairs to Establish Training Program for Family Caregivers and Enhance Awareness About the Symptoms of Post-Traumatic Stress DisorderHeroes at Home Act of 2009 (H.R. 667) - Directs the Secretary of Veterans Affairs to:
For more information go to: Title II of the Social Security Act AmendedThe Social Security Caregiver Credit Act of 2009 (H.R. 769) credits prospectively, individuals serving as caregivers of dependent relatives with deemed wages for up to five years of such service. Aspects of the act include:
For more information go to: Additional Appropriations for the Family Caregiver Support Program AuthorizedThe Elder Caregiver Support and Information Enhancement Act of 2009 (H.R. 519) authorizes additional appropriations for the family caregiver support program under the Older Americans Act of 1965, and for the National Clearinghouse for Long-Term Care Information, for fiscal years 2010, 2011, and 2012. For more information go to: PHI Testifies Before Senate Aging Committee: "Health Reform Must Include Investment in Direct-Care Workers"On March 4, 2009 the Senate Aging Committee took up the issue of health care reform and the needs of an aging America. PHI Washington D.C. liaison Henry Claypool called on Congress to support a skilled, stable direct-care workforce, which he concluded is essential to supporting elders and people with disabilities to live meaningful lives in the community. For more information go to: New 2009 Poverty Levels Will Affect Eligibility For Many Federal Health ProgramsNew federal poverty level guidelines published January 23, 2009 will affect eligibility levels for many public benefits, including health benefits for older people and people with disabilities. For more information go to: Research articles and reportsHome and Community-Based Services: Public Policies to Improve Access, Costs and QualityA new PAS Center report by Charlene Harrington, Terence Ng, Steve Kaye and Robert Newcomer examines issues of access, cost and quality for Medicaid Home and Community-Based Service (HCBS) programs. The trends in state Medicaid HCBS programs, target groups, participants, and expenditures are summarized. The report shows the progress in providing Medicaid HCBS but also identifies many current problems and policies. Inequities in access to services and limited funds result in unmet needs for HCBS. HCBS cost issues have been a primary focus of policy makers and quality problems are largely not addressed. Policy recommendations are made to improve access, costs and quality at the federal and state levels in the future. For more information go to: New Report Available, Analyzing the California In-Home Supportive Services (IHSS) Plus Waiver Demonstration ProgramA PAS Center report by Robert Newcomer and Taewoon Kang examines the California IHSS Plus Waiver Demonstration Program. In 2004, the Centers for Medicare and Medicaid Services (CMS) approved California’s IHSS Plus program under the Section 1115 demonstration authority of the Social Security Act. California refers to this program as the IHSS Plus Waiver. Full Medicaid (referred to as Medi-Cal in California) benefits and IHSS Plus benefits are available to all eligible IHSS Plus recipients. The IHSS program began in the early 1970s and was originally funded primarily with state and county funds and some federal Title XX (later renamed Social Services Block Grant) funds. Beginning in 1993, most IHSS services were financed through the Personal Care Services Program optional benefit and California benefited from 50% federal financial participation to cover these costs. However, prior to the granting of the IHSS Plus waiver, some services provided to a minority of IHSS recipients were not eligible for Medicaid federal matching payments. The cost of these “Residual Program” services had to be borne entirely by the state, with county cost sharing. For more information go to: New Study Examines the Experiences of Ethnically Diverse, Low-Income Consumers of Paid Personal Assistance ServicesA PAS Center report by Joseph Mullan, Brian Grossman, Mauro Hernandez, Alice Wong, Rani Eversley & Charlene Harrington, titled, "Focus Group Study of Ethnically Diverse Low Income- Users of Paid Personal Assistance Services" looks at the problems faced by ethnically diverse, low-income consumers of paid personal assistance services in setting up and maintaining their assistance. For more information go to: Minnesota Issues Evaluation Report on State's Personal Care Assistance ServicesThe Office of the Legislative Auditor in Minnesota has recently issued an evaluation report and summary to the Minnesota Legislature on the state's personal care assistance 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: Missouri’s 2005 Medicaid cuts: A report on the affect this had on enrollees and providersIn 2005, Missouri adopted sweeping Medicaid cutbacks. More than 100,000 people lost coverage, and many more faced reduced benefits and higher cost sharing. A new report shows that the cutbacks were followed by a major increase in the numbers of uninsured people and a greater uncompensated care burden on hospitals. For more information go to: Georgia looks at cutting programs and services as a way to balance the budgetA report by the American Association of Retired Persons (AARP) highlights the importance that AARP members in Georgia place on having services and policies that support family caregivers and the older adults who rely on them. The report found that:
For more information go to: National Direct Service Workforce (DSW) Resource Center Release White Paper Concerning the Challenges Facing the Direct-Care Workforce.The DSW Resource Center has released a white paper that provides a first-ever overview of workforce challenges and practices across four critical service sectors:
For more information go to: National Direct Service Workforce (DSW) Resource Center Release White Paper with Recommendations on how States can Maintain a Skilled Direct-Service WorkforceAs a first step towards maintaining a stable and skilled direct-service workforce DSW Resource Center suggests that adequate data collection is needed. The Center recommends that as a minimum, states should collect:
For more information go to: Selected Conferences During April, May and June 2009For more detail about these conferences, go to: http://pascenter.org/conferences/index.phpAprilApril 01 - April 04, 2009 April 06 - July 06, 2009 April 06 - July 09, 2009 April 06, 2009 April 27 - April 29, 2009 April 28 - April 29, 2009 April 28 - April 30, 2009 MayMay 03 - May 05, 2009 May 06 - May 07, 2009 May 11, 2009 JuneJune 08 - June 10, 2009 June 09 - June 12, 2009 June 10 - June 13, 2009 June 16, 2009 June 23 - June 27, 2009 June 30 - July 02, 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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