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A pdf version of this newsletter can be found at http://www.pascenter.org/newsletter/CenterforPASBulletinOct07.pdf Previous newsletters can be found at http://www.pascenter.org/newsletter/index.php
Center for Personal Assistance Services BulletinOctober 2007 - Volume 4, Issue 4In 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/ LaPlante Testifies At Senate Finance CommitteeMitch LaPlante, a researcher at the Center for Personal Assistance Services at UC San Francisco, appeared as a witness at the US Senate Finance Hearing titled "Home and Community Based Care: Expanding Options for Long Term Care". The hearing is on Tuesday Sept 25th at 10am in the Dirksen Office Building, Room G-50. Senator Tom Harkin, Iowa, co-sponsor of the "Community Choice Act" began the hearing with a presentation that was followed by a panel of 4 presenters: Bob Liston, Advocate from Montana LaPlante presented testimony that included PAS Center research on the topics of unmet need, cost of HCBS vs. institutions, and the cost of the Community Choice Act. The following is an excerpt of the report of the Hearing from the American Association of Persons with Disabilities (AAPD). Panel Urges Broader Coverage of Home and Community Based Care State health care officials and other witnesses told the Senate Finance Committee Sept. 25 that there is "an institutional bias" in the Medicaid program that places people with disabilities and the elderly in nursing homes, instead of allowing them to live in their own homes with home and community based care. Speaking at a Sept. 25 committee hearing on "Home and Community Based Care: Expanding Options for Long Term Care," panelists urged support of the Community Care Act (S. 799) that would give Medicaid beneficiaries the choice of either going to a nursing home or getting personal care attendant services in their own homes. Bill sponsor Sen. Tom Harkin (D-Iowa) told the committee that "there is a Medicaid bias where two-thirds of the money goes to nursing homes and a third goes to community care." He added that home and community based services (HCBS) would provide personal attendance services that allow people to live independently and fully participate in their communities, goals he said were part of the Americans With Disabilities Act that became law 17 years ago. 'Mandatory' Option Although Iowa and other states have Medicaid waivers to offer HCBS, Harkin said there are "bureaucratic entanglements" for participating in the services, including a Medicaid spending cap and long waiting lists. "It is time to move beyond the waivers and have broad-based community care," Harkin said. The deputy secretary of the Vermont Agency of Human Services, director of the Iowa Department of Human Services, and the director of Montana Fair Housing echoed the request that Congress pass a law making HCBS a mandatory option offered under the Medicaid program. "By making HCBS a mandatory benefit it would greatly reduce the institutional bias," said Mitchell La Plante, associate professor at the University of California, San Francisco, Department of Social and Behavioral Science. For more information on all witness statements, go to http://www.finance.senate.gov/sitepages/hearing092507.htm A link to watch video of the hearing will be available on that page soon. To read the AAPD report of the hearing, go to http://www.aapd.com/News/longtermcare/070926bna.htm On the Center for PAS websiteThe following are new resources available on the Center for PAS website (http://www.pascenter.org):
Harrington to speak at International Disability ForumCharlene Harrington, the director of the Center for Personal Assistance Services, will speak at the International Forum on Disability and Development: Caring, Participation, and Action in Beijing China in December. The theme of the forum, jointly sponsored by the China Disabled Persons’ Federation, Peking University, University of Southern California, and Griffith University, is “Caring, Participation, and Action”, which includes the following sub-themes:
The purposes of the forum are:
NewsOhio Taking Steps to Allow Older Adults More Independence During the last month, lawmakers in Ohio have taken steps to expand options that allow older adults with long-term care needs to remain independent and living in the community. First, in July, Ohio expanded Medicaid - which last year began to cover assisted living costs for recipients who decided to move into such facilities - to include residents already living in those facilities. Then, on August 5, 2007, the Dayton Daily News reported that Governor Ted Strickland eliminated the 1,100-person waiting list for the state's Passport program, which provides home care services to seniors 60 and older who are Medicaid eligible, by adding 5,000 slots to the program. Such moves allow low-income seniors and their families more access to the types of long-term care services they prefer. For more information, go to Consumer-Directed, Home and Community Services for Adults with Dementia The Alzheimer's Association released a public policy issue brief by Dr. Jane Tilly in July 2007 called "Consumer-Directed, Home and Community Services for Adults with Dementia." The brief describes the provisions of consumer-directed, home- and community- based programs that serve older adults with dementia in 11 states, including provisions related to determining whether a participant needs assistance with managing services, meeting family caregiver needs and quality assurance. It also provides policy recommendations for states considering expansion or implementation of consumer-directed programs that serve dementia families. One recommendation is that "states need to evaluate a family caregiver's needs when that caregiver is making it possible for the adult with dementia to remain in the community and then connect the caregiver with available supportive services." For more information, go to GAO releases Highlights of Forum on Modernizing Federal Disability Policy In August, the General Accounting Office (GAO) released a report called Highlights of a GAO Forum: Modernizing Federal Disability Policy, which concluded that to the extent that federal disability programs match current realities, benefits can be achieved for individuals with disabilities, business, and government, but that the "solutions are likely to require fundamental changes" through regulation and legislation. Furthermore, they note that if there is no federal leadership at this time, "there could be fewer options in the future available to policymakers seeking to improve federal disability programs. " To retrieve the report, go to Research articles and reportsSpecial Edition of Journal of Aging & Social Policy focusing on Personal Assistance The Journal of Aging & Social Policy has published a special edition on personal assistance. Guest edited by Martin Kitchener from the Center for Personal Assistance Services at the University of California, San Francisco, it is Volume 19, Number 3 2007. The journal included the following articles: Medicaid State Plan Personal Care Services: Trends in Programs and Policies This article presents the latest available data on the Medicaid Personal Care Services (PCS) optional benefit. This option allows states to fund non-medical assistance services for Medicaid recipients, including help with daily living activities provided by family caregivers or direct care workers. The article, "Medicaid State Plan Personal Care Services: Trends in Programs and Policies," by Dr. Martin Kitchener, Terence Ng and Dr. Charlene Harrington, reveals that between 1999 and 2002 the number of states providing the benefit went from 26 to 30 and national program participation increased by 27%. At the same time, program expenditures per person declined, the range of services provided declined and almost half of the programs placed a cap on the hours of service provided. Paid Personal Assistance Services: An Exploratory Study of Working Age Consumers' Perspectives This study examined the experiences of individuals who use paid personal assistance services (PAS). Structured interview data were collected from a convenience sample of 24 working-age individuals from diverse backgrounds recruited from Centers for Independent Living in nine states. Respondents described their general satisfaction with current paid PAS, but many reported previous experiences with poor care related to the low wages, lack of training of PAS providers, and an inadequate supply of providers. Respondents reported many unmet needs because of a shortage of hours provided by state programs and the lack of help with daily living activities, transportation, childcare, and social activities. The respondents strongly preferred consumer-directed care Estimating the Expense of a Mandatory Home- and Community-Based Personal Assistance Services Benefit Under Medicaid This study aims to provide an estimate of the expense of a mandatory personal assistance services (PAS) benefit under Medicaid for persons with low incomes, low assets, and significant disability. Design and methods: We use year 2003 data from the Survey of Income and Program Participation to estimate the number of people living in households who would be eligible, based on having an institutional level of need and meeting financial criteria for low income and low assets, combined with additional survey data on annual expenditures under Medicaid programs providing PAS. Results: New expenditures for PAS are estimated to be $1.4-$3.7 billion per year (in 2006 dollars), depending on the rate of participation, for up to half a million new recipients, more than a third of whom would be ages 65 and older. These estimated expenditures are a tenth of those estimated by the Congressional Budget Office for implementing the Medicaid Community-Based Attendant Services and Supports Act (MiCASSA). Implications: Creating a mandatory PAS benefit for those with an institutional level of need is a fiscally achievable policy strategy to redress the imbalance between institutional and community-based services under Medicaid. Personal Assistance in Sweden "Personal Assistance in Sweden" by Ulla Clevnert and Dr. Lennarth Johansson, provides an overview of the Swedish personal assistance program for people with disabilities. Established in 1994, the program "is intended to make it financially possible for a person with severe disabilities to appoint a personal assistant, on their own or through a provider," to help with daily care. The personal assistant, who can be a family member, is supposed to help create a care plan that is suited to the person's needs and provide assistance with daily living. The program is available for children and adults, however adults over 65 are only allowed this benefit if they were enrolled in the program before they turned 65 years old. The article concludes that "the personal assistance has enhanced the quality of life for people with severe disabilities and their families." Provider and Care Workforce Influences on Quality of Home-Care Services in England A key trend in home care in recent years in England has been movement away from "in-house" service provision by local government authorities (e.g., counties) towards models of service commissioning from independent providers. A national survey in 2003 identified that there were lower levels of satisfaction and perceptions of quality of care among older users of independent providers compared with in-house providers. This paper reports the results of a study that related service users' views of 121 providers with the characteristics of these providers. For the most part, characteristics associated with positive perceptions of quality were more prevalent among in-house providers. Multivariate analyses of independent providers suggested that aspects of the workforce itself, in terms of age and experience, provider perceptions of staff turnover, and allowance of travel time, were the most critical influences on service user experiences of service quality. To retrieve the articles or the publication, go to New papers on Developmental Disability and Living in the Community released Charlene Harrington, Ph.D. and Taewoon Kang, Ph.D. completed three papers that examined individuals with developmental disabilities (DD) in California. The first paper entitled Factors Associated with Living in Developmental Centers in California reports on regression analyses of secondary data on clients, provider supply, population characteristics, and regions in 2004-05. The study found that while client needs were the most important factor predicting living in developmental centers (compared to home or the community), more individuals with similar needs were living at home and in the community. Men, other races, and older individuals had higher odds of living in developmental centers while the supply of residential care beds for the elderly reduced the odds. Wide variations in the odds of living in developmental centers across regions were found, controlling for client needs. Barriers to living at home and in the community need to be addressed. The second paper entitled Disparities in Service Utilization and Expenditures for Individuals With Developmental Disabilities examined individuals living at home and in residential settings in California in 2004-05. Regression analyses were conducted on the 175,595 individuals with developmental disabilities evaluated by regional centers. Of those with DD, 21 percent did not receive any purchases services from the regional centers, although they may have received services from other organizations and programs. Controlling for need, individuals age 3-21 and all racial and ethnic minority groups were less likely to received services and had lower expenditures. Provider supply and area population characteristics, and regional centers also explained the wide variations in service use and expenditures. The disparities by age, gender, and race/ethnicity need to be addressed. The third paper entitled Variation in Types of Service Use and Expenditures for Individuals With Developmental Disabilities examined the patterns of use and expenditures for individuals living at home and in residential settings in California in 2004-05. Regression analyses were conducted on the 138,336 individuals with developmental disabilities who received services from regional centers. Controlling for client needs and other factors, the patterns of service use and expenditures varied widely by gender, age, and race/ethnicity. The provider supply, area population characteristics, and regional centers predicted wide variations. The underlying reasons for the variations need to be understood and new approaches are needed to ensure equity in access to services and expenditures. Charlene Harrington will be presenting two of these papers in the California State Capital on Wednesday October 3, 2007, sponsored by Assembly Member Jim Beall, Jr., Chair of the Assembly Human Services Committee. This is the second Roundtable Discussion on "Taking the Lanterman Act into the Future: Improving Outcomes, Accountability, Equity, and Fairness in the Developmental Service Delivery System." SELECTED CONFERENCES DURING October, November, and December 2007For more detail about these conferences, go to: http://pascenter.org/conferences/index.php October October 06 - October 08, 2007 October 06 - October 10, 2007 October 08 - October 11, 2007 October 11 - October 13, 2007 October 14 - October 16, 2007 October 14 - October 16, 2007 October 18 - October 20, 2007 October 26 - October 27, 2007 October 28 - October 29, 2007 October 29 - October 31, 2007 November November 03 - November 07, 2007 November 12 - November 14, 2007 November 13 - November 16, 2007 November 16 - November 20, 2007 November 29 - November 30, 2007 December December 03 - December 05, 2007 December 05 - December 08, 2007 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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