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Center for Personal Assistance Services Bulletin
April 2004--Volume 1, Issue 1
IN THIS ISSUE:
1) Center News: PAS Center Website
2) New paper published on the Unmet Needs for Personal Assistance
Services
3) New data analysis of people with disabilities
4) New paper published on the Medicaid Home and Community-Based
Programs (HCBS)
5) PAS Center Provides State Data on Home and Community Based Services
for 1992 through 2001
6) PAS Center Reports On Community Integration Developments Across
States
7) Most states experiencing problems trying to maintain a stable
direct-care workforce
8) Tracking Workforce Initiatives
9) Call for PAS Workforce Best Practices
10) Center staff embark on study of the effects of cuts on California's
IHSS system
11) Barriers and Opportunities for PAS in the Workplace
12) New Accommodation Ideas paper for Workplace Personal Assistance
Services created
13) Selected Conferences During April, May, and June 2004
==========
Welcome to the inaugural newsletter of the Center for Personal Assistance
Services. 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 Center for PAS has four research goals:
* The relationship between formal and informal PAS and caregiving support,
and the role of assistive technology (AT) in complementing PAS;
* Policies and programs, barriers and new models for PAS in the home and
community;
* PAS workforce development, recruitment, retention, and benefits; and
* Workplace PAS models that eliminate barriers to formal and informal
PAS and AT at work.
In addition, the Center is responsible for training, education, and dissemination
activities to a broad range of users including: PAS users, caregivers,
advocates, policy makers, researchers, educators, the media, and many
other stakeholders.
The Center is based at the University of California, San Francisco, and
includes a partnership with the Topeka Independent Living Resource Center,
InfoUse, PHI, the Institute for
the Future of Aging Services, and faculty members at the University of
Maryland, Baltimore County, University of Michigan, and West Virginia's
Job Accommodation Network (JAN). A Blue Ribbon Advisory Committee of PAS
users, disability advocates, business leaders, independent living center
leaders, and academics provide guidance to the Center.
Further detail about the Center staff and advisors can be found at http://www.pascenter.org/about/
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.
1) CENTER NEWS: PAS Center website
The Center for Personal Assistance Services website is a growing resource
that is organized to present information and research on: formal and informal
PAS; home & community-based services (HCBS); the PAS workforce; and
workplace PAS. In each research area of the website, lists of reports
and presentations, as well as a library of publications can be found.
State-by-state data and resources are being added. The website also has
a PAS user section that provides a growing list of resources appropriate
for those individuals who use PAS.
One can connect directly to the Direct Care Clearinghouse's website of
resources on the PAS workforce, the Job Accommodation Network's website
of resources on employment-related needs, and UCSF's own Disability Statistics
Center website full of data and statistical analysis products. The website
also provides a resource for conferences and events through a calendar.
The website is located at http://www.pascenter.org.
2) New paper published on the Unmet Needs for Personal Assistance
Services
About 3.3 million adults living in the community need assistance from
another person in two or more activities of daily living essential for
their survival, and nearly a million of those individuals need more help
than they currently receive, according to a new study by researchers at
the Disability Statistics Center at UCSF. The study, funded by the
National Institute on Disability and Rehabilitation Research, and published
in the Journal of Gerontology: Social Sciences is the first to estimate
how many additional hours of help people need.
Most adults who need help do receive some help, but some do not receive enough
to fill their unmet needs. Individuals with unmet need for personal assistance
with two or more of the five basic ADLs have a shortfall of 16.6 hours of help
per week compared with those whose needs are met, according to lead author Mitchell
P. LaPlante. Having unmet needs with ADLs is linked with numerous adverse consequences,
especially for people who live alone. Those with unmet need are 10 times as
likely to go hungry because no one is available to help them eat as those whose
needs are met, 20 times more likely to miss a meal because of lack of help with
shopping, 5 times as likely to lose weight unintentionally, and almost three
times as likely to fall because no one was around to prevent their falling.
As a result, these people are at risk of being forced to leave their homes and
move into institutions, such as nursing homes. Among adults whose assistance
needs are not fully met, people living alone fare worse than those who live
with others. Those living by themselves receive only 56% of the help they need,
while those living with family members or friends receive 80% of the hours of
help they need. (LaPlante, M.P., H. S. Kaye, T. Kang, and C. Harrington.
(2004). Unmet Need for Personal Assistance Services: Estimating the Shortfall
in Hours of Help and Adverse Consequences. Journal of Gerontology: Social Sciences.
59B (2):S98-S108. )
For more information, go to: http://www.pascenter.org/publications/publication_home.php?id=23
3) New data analysis of people with disabilities
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 Center tabulations of public use data sets from the 2002 American Community
Survey (ACS), 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.
See the national table at http://www.pascenter.org/formal_and_informal/
See state tables at http://www.pascenter.org/state_based_stats/statsstatehome.php?state=us
4) New paper published on the Medicaid Home and Community-Based Programs
(HCBS)
A new paper from PAS Center researchers has been published in the journal Inquiry.
The researchers looked at the variation in Medicaid HCBS use and expenditures
for the period 1992-99. This study found that higher spending on Medicaid home
and community-based service (HCBS) programs in states was associated: with greater
percentages of aged people, smaller percentages of minority populations, higher
personal income per capita, more generous Medicaid reimbursement rates and eligibility,
and a larger supply of home health agencies. Identifying such factors is important
because Medicaid regulations allows states discretion to expand three HCBS programs
- home health, personal care and waivers for specific groups - to ensure access
to those people with the greatest need. Their findings suggest that if
states want to expand HCBS programs - which tend to cost less than institutionalized
long-term care and are preferred by many consumers -- they might reduce the
number of available nursing home beds, which "would not appear to compromise
access and might allow policymakers to direct more funds toward the substitute
HCBS." Other options for extending HCBS could be offering special grants
to low-income states to help expand the number of participants and increasing
the number of agencies and workers that provide HCBS. (Kitchener, M., Carrillo,
H. and Harrington, C. (2004). Medicaid Community-Based Programs: A Longitudinal
Analysis of State Variation in Expenditures and Utilization. Inquiry.
40 (4): 375-389. )
You can see an abstract of the paper at http://www.pascenter.org/publications/publication_home.php?id=28
Article abstracts are also available on the Inquiry website at http://www.inquiryjournal.org
under "Current Issue Table of Contents."
5) PAS Center Provides State Data on Home and Community Based Services
for 1992 through 2001
Medicaid 1915(c) HCBS waivers are operated in all 50 states and Washington,
D.C., with the exception of Arizona. Centers for Medicare and Medicaid Services
(CMS) Form 372 reports are submitted by state officials to the CMS and include
annual expenditure and participant data. This report shows details
of the 229 Medicaid HCBS waivers that provided services to over 800,000 individuals
and spent $14 billion on the program. States also provided home health
care to over 700,000 individuals and personal care services to over 500,000
individuals in 2001. The home health expenditures totaled $2.8 billion and personal
care services were $5 billion in 2001. This report shows the variations
in state HCBS programs and the trends over time.
For details, go to: http://www.pascenter.org/medicaid/
6) PAS Center Reports On Community Integration Developments Across
States
With the growing concern about the institutional bias within states' long term
care systems, the U.S. Supreme Court decision in Olmstead v. L.C. (1999) held
that, under Title II of the Americans with Disabilities Act (ADA), people with
disabilities have a right to receive care in the most integrated setting appropriate.
Given the importance of personal assistance services in helping people with
disabilities to live independently, PAS Center researchers have collected secondary
data on Olmstead related activities in states. A report from this research is
now available. The report provides information on the formal strategies (Olmstead
Plans) that states have developed in response to the Olmstead ruling. It identifies
29 states with Olmstead Plans and 4 states that are developing their response
to Olmstead. It also presents a summary of 123 Olmstead related lawsuits and
indicates that 42 states have had lawsuits relating to the Olmstead decision
brought against them. More details about this research and methodology, the
Olmstead ruling as well as further sources of information and analysis are provided
in the reports.
You can view the report at http://www.pascenter.org/olmstead
7) Most states experiencing problems trying to maintain a stable direct-care
workforce
"Results of the 2003 National Survey of State Initiatives on the Long-Term
Care Direct-Care Workforce", an annual state-by-state survey of initiatives
concerning direct-care workers in long-term care has been published by the Paraprofessional
Healthcare Institute's National Clearinghouse on the Direct Care Workforce and
the North Carolina Department of Health and Human Services (NCDHHS). According
to co-author Susan Harmuth, two new trends can be observed this year: first,
efforts to tie outcomes to reimbursement to create incentives for positive change,
and second, a growing number of states collecting and analyzing turnover data
from one or more long-term care settings.
You can view the report at http://directcare.c.topica.com/maab46Maa5s7Ibechqib/
8) Tracking Workforce Initiatives
Center researchers are identifying national, state, and regional legislative
and policy initiatives intended to improve the recruitment and retention of
the personal assistance workforce. This work is on-going and is done largely
by tracking web-based announcements, newsletters and program descriptions, although
some direct contacts are made to officials. Important developments during the
past three months have been posted on the National Clearinghouse on the Direct
Care Workforce web site (http://www.directcareclearinghouse.org/).
The Clearinghouse's enhanced state-specific information is currently available
for seven states (Iowa, Michigan, North Carolina, Oregon, Pennsylvania, Vermont,
Wisconsin.) and four additional states are under development.
9) Call for PAS Workforce Best Practices
The PAS Workforce project requests nominations for PAS workforce best practices.
Practices include: recruitment and selection; education and training of direct-care
workers; workplace strategies to create quality jobs and quality care; caregiving
strategies to create quality jobs and quality care; leadership, management,
and supervisory training and practices; and wage enhancements, benefits, and
worker supports.
To submit a nomination, or for more information, email
Robert Newcomer.
10) Center staff embark on study of the effects
of cuts on California's IHSS system
Given the budget situation in many states, "innovations" have begun
to take the form of PAS program reductions rather than expansions. The most
substantial of these are program changes being proposed for California's in
home supportive service (IHSS) program. This is the nation's largest personal
assistance program involving more than 300,000 clients monthly. Among the changes
are an elimination of a state-county funded component in the program, and up
to a 30% reduction in worker hourly wages. While these changes are intended
to reduce expenditures, they also pose the risk of increasing costs by increasing
the rate of institutional placement. To help contribute to a timely and objective
assessment of this situation Center staff have sought and obtained funding from
the California Healthcare Foundation to conduct analyses of the likely populations
affected by these changes and to prepare simulation analyses of the costs effects.
We have received substantial cooperation from the California Department of Social
Services, the department responsible for administering the IHSS program. Findings
from the analyses are planned by the end of April 2004.
You can view the paper at http://www.pascenter.org/news/calongtermcare.php
11) Barriers and Opportunities for PAS in the
Workplace
Workplace Personal Assistance Services (Workplace PAS) include task-related
assistance at work, such as readers, interpreters, help with lifting or reaching,
re-assignment of non-essential duties to co-workers, and other help related
to performing work tasks and may also include personal care-related assistance
such as helping someone with toileting, eating, or drinking while at work. Center
researchers at InfoUse have been identifying barriers and opportunities in workplace
PAS by conduct key informant interviews with employers, employment system specialists,
and people with disabilities who use PAS at work. Results of these interviews,
as well as focus group and survey results will be reported in a paper for publication
in the near future. In addition, the Job Accommodation Network (JAN) has conducted
six teleconference focus groups with (80) employers. Researchers will be identifying
changes in PAS use in the workplace over time and will be examining state and
federal policies that provider work incentives and opportunities. In the spring,
a large internet survey of employers will be conducted to develop estimates
of the extent of PAS services and identify best practices.
12) New accommodation ideas paper for workplace
personal assistance services created
For some people with disabilities, Personal Assistance Services (PAS) may be
needed to successfully maintain gainful employment. A new paper describing accommodation
ideas for workplace personal assistance services (PAS) has been created by the
Job Accommodation Network (JAN), a Center partner from the Institute for Community
Disability Information at the University of West Virginia. This publication
discusses PAS in the workplace. It provides a definition of PAS; information
about using PAS to accommodate people with sensory, cognitive, mental health,
and motor impairments; a discussion about PAS and the Americans with Disabilities
Act (ADA); and a list of resources for additional information.
You can view this paper at http://www.jan.wvu.edu/media/PAS.html
13) SELECTED CONFERENCES DURING APRIL, MAY, AND
JUNE 2004
For more detail about these conferences, go to:
http://pascenter.org/conferences/index.php
April
April 07 - April 09, 2004
26th Annual Conference
Hosted By: National Business and Disability Council
Location: Hyatt Regency, Chicago, IL
April 14 - April 17, 2004
2004 Joint Conference: Taking the Road Together
Hosted By: American Society on Aging, National Council on the Aging
Location: San Francisco, CA
April 19 - April 20, 2004
Best Practices for Surveying People with Disabilities
Hosted By: Interagency Committee on Disability Research
Location: Washington, DC
April 21 - April 24, 2004
46th Annual Conference - Section on Disease and Disability of the Western Social
Science Association
Hosted By: Western Social Science Association
Location: Salt Lake City, UT
April 22 - April 23, 2004
The Way We Work and its Impact on Our Health
Hosted By: University of California Centers of Occupational and Environmental
Health, The National Institute of Occupational Safety and Health, California
Education and Research Centers, and the Center for Social Epidemiology
Location: Los Angeles, California
April 26 - April 27, 2004
National Conference: "Meeting the Future Research and Training Needs of
the Disability Community"
Hosted By: Nartional Association of Rehabilitation Research and Training Centers
(NARRTC)
Location: Holiday Inn, 550 C Street, Washington DC
April 27 - April 28, 2004
Self-Determination and Cognitive Disability
Hosted By: Self-Directed Support T & TA Project, Oregon Health Sciences
University, OIDD, Center on Self-Determination
Location: Houston, TX
April 28 - May 01, 2004
Immersion Learning About Self-Determination 2004
Hosted By: Center For Self Determination
Location: Atlanta, GA
May
May 05 - May 07, 2004
7th Annual Coordinated Leadership Conference
Hosted By: California Association of Area Agencies on Aging and California Foundation
for Independent Living Centers
Location: Concord, CA
May 07, 2004
Expanding Employment Based Health Insurance
Hosted By: UCLA Center for Health Policy Research
Location: Los Angeles, CA
May 16 - May 19, 2004
Special Conference on Employment, Medicaid and Social Security
Hosted By: The Association for Persons in Supported Employment (APEE)
Location: Minneapolis, MN
June
June 09 - June 12, 2004
2004 Annual Independent Living Conference: "Your Vote Counts for Freedom!"
Hosted By: National Council on Independent Living
Location: Grand Hyatt, Washington DC
June 14 - June 16, 2004
21st Annual Summer Series on Aging
Hosted By: University of Ketucky
Location: Lexington, KY
June 16 - June 19, 2004
3rd Annual Hawaii International Conference on Social Sciences
Hosted By: East West Council for Education Center of Asian Pacific Studies of
Peking University
Location: Honolulu, Hawaii
======================================================
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
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Center for Personal Assistance Services
Department of Social & Behavioral Sciences
University of California San Francisco
3333 California Street, Suite 455
San Francisco, CA 94118
Telephone: 866-PAS-9577 (866-727-9577)
415-502-7190
TDD/TTY: 415-502-5216
E-mail
Website: http://www.pascenter.org
As part of the Center, InfoUse will email this newsletter periodically
to listserve members.
InfoUse contact
email
ph: 510 / 549-6520
fax: 510 / 549-6512
InfoUse
2560 Ninth St., Suite 320
Berkeley, CA 94710
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