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A pdf version of this newsletter can be found at http://www.pascenter.org/newsletter/CenterforPASBulletinJan06.pdf

Previous newsletters can be found at http://www.pascenter.org/newsletter/index.php

Center for Personal Assistance Services Bulletin

January 2006 - Volume 3, Issue 1

In this issue:

1) New Freedom Initiative grant awards to states
2) Final report and recommendations from Mini-Conference on Disability and Aging
3) On the Center for PAS website
4) Paper on traumatic brain injury waivers
5) Article on Predictors of Medicaid 1915c Waiver Use and Expenditures published
6) State of the Science conference on Workplace Accommodations posts presentations
7) Report on state strategies to help keep consumers in the community
8) Medicaid Managed LTC
9) Medicaid and the elderly and disabled
10) Asset transfer and nursing homes – briefings
11) Changes made to State Medicaid programs
12) Reports from around the country and the world
13) The State of the States in Developmental Disabilities 2005
14) Disability Statistics report
15) GAO releases report noting poor accessibility conditions in public housing
16) Performance Standards for Medi-Cal Managed Care Organizations
17) Applications solicited for the Ed Roberts Postdoctoral Fellowship in Disability Studies
18) Selected Conferences during January, February, and March 2006

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/

1) New Freedom Initiative grant awards to states.

In September, seventeen different states were awarded federal ‘Real Choice System Change’ grants totaling $25.8 million. Ten states received ‘Systems Transformation’ grants: Arkansas, Iowa, Louisiana, Massachusetts, Maine, Missouri, New Hampshire, New Mexico, Oregon, and South Carolina. Ten states were awarded ‘Family to Family Health Information and Education Center’ grants: Connecticut, Idaho, Michigan, New Hampshire, Oregon, Rhode Island, South Carolina, Texas, Virginia, and Washington. This follows on from the award of $15 million to 19 states (including Guam) in August for the development of Aging and Disability Resource Centers. The states which received those grants were Alabama, Arkansas, Colorado, District of Columbia, Guam, Hawaii, Idaho, Kansas, Kentucky, Michigan, Mississippi, Nevada, Ohio, Tennessee, Texas, Vermont, Virginia, Washington, and Wyoming.

Real Choice Systems Change Grant Press Release available at:

Aging and Disability Resource Center Grant Press Release available at:

2) Final report and recommendations from Mini-Conference on Disability and Aging: Seeking Solutions to Improve Health, Productivity and Community Living

Disability is one of the leading issues in aging. The likelihood of developing a chronic disabling condition only increases with age. In response to this, the White House Conference on Aging (WHCoA) sanctioned the Mini-Conference on Disability and Aging, inviting key stakeholders from the aging and disability community to help formulate specific recommendations bearing on this critical topic to the Policy Committee of the WHCoA.

The National Institute on Disability and Rehabilitation Research (NIDRR) has made available the final report and recommendations from the Mini-Conference on Disability and Aging: Seeking Solutions to Improve Health, Productivity and Community Living. This report summarizes the deliberations of the event and presents the high-priority, agreed-upon recommendations across five policy arenas: social engagement and productivity; healthy long-term living; economic security; assistive technology and universal design; and positive messaging. These recommendations will be considered for inclusion in the final WHCoA Policy Committee recommendations that will be advanced to the president and Congress as developed at the White House Conference on Aging in December 2005.

For a copy of the report, go to:

3) On the Center for PAS website

The Center for PAS is conducting a study of Medicaid Optional State Plan Personal Care Services (PCS) programs. The study involves two main activities. First, better practices (e.g., consumer direction) are identified from the literature to use as criteria for selecting promising programs. Second, detailed case studies are conducted on the promising programs. Presently, the website shows the selection criteria and the one of the promising programs, from the state of Washington.

For more information, go to

Mike Oxford answers new questions in the Ask Mike feature on the PAS Users page. Mike is the Executive Director of the Topeka Independent Living Resource Center and Past President of the National Council on Independent Living (NCIL). The new questions are:

To see what Mike said or to ask your own question, go to

4) Paper on traumatic brain injury waivers published

PAS Center researchers have published a paper on traumatic brain injury waivers in the Journal of Health and Social Policy. This study draws from the most recent and comprehensive available dataset to present national participation and expenditure trends for all traumatic brain injury and related waivers for the period 1995-2002, it reports findings from a national survey of policies (e.g., eligibility criteria and cost controls) used on these waiver programs in 2002, and compares the Medicaid cost of serving this target group through institutional care and waiver programs.

For more information, go to

http://www.pascenter.org/publications/publication_home.php?id=263

5) Article on Predictors of Medicaid 1915c Waiver Use and Expenditures published

PAS Center researchers, led by Nancy Miller, Ph.D., published a paper in the The Gerontologist in December entitled "Variation by disability in state predictors of Medicaid 1915c waiver use and expenditures." The study reviewed state- level Medicaid 1915c data from 1992-2001 and compared state predictors of waiver utilization and expenditures for waivers serving both older and working age individuals relative to waivers serving individuals with intellectual and developmental disabilities. The study found that increased community-based-care capacity appears to be an important factor in efforts to expand the availability of Medicaid community-based-care.

To retrieve the abstract, go to

http://gerontologist.gerontologyjournals.org/cgi/content/abstract/45/6/764

6) State of the Science conference on Workplace Accommodations posts presentations

The Workplace Rehabilitation Engineering and Research Center (Work RERC) has posted the presentations given at its State of the Science conference on Workplace Accommodations in September. A goal of this conference was to develop an agenda for future directions in research, service delivery, and product development based on user needs for workplace accommodations. Included in the conference was a presentation by PAS Center researcher Susan Stoddard who discussed workplace personal assistance services.

The presentations can be found at

http://www.workrerc.org/conference.php

7) Report on state strategies to help keep consumers in the community

The Kaiser Commission on Medicaid and the Uninsured has published a report on tactics used by states to divert nursing facility admissions. Policies and practices in eight states are described although "best practices" are not identified. Four of the states examined (Maine, Oregon, Vermont and Washington) have made large scale changes to their Medicaid long-term care (LTC) systems to invest at least half Medicaid LTC budget on home and community-based services (HCBS). The other four states studied (Indiana, Nebraska, New Jersey and Pennsylvania) have made more incremental changes, spending a smaller proportion of Medicaid LTC funding on HCBS. The report suggests that despite these different approaches, there are seven key elements to the successful diversion from nursing facilities. These are; philosophical commitment and legislative direction, fast eligibility determinations, making community care available immediately, procedures to track and manage placements, assuring financing for HCBS, accessible and affordable housing, and information about the options for care for professionals and consumers.

For more information, go to

http://www.kff.org/medicaid/7402.cfm

Reference: Summer, Laura (October 2005) Strategies to Keep Consumers Needing Long-Term Care in the Community and Out of Nursing Facilities. Kaiser Commission on Medicaid and the Uninsured, Kaiser Family Foundation: Washington, DC.

8) Medicaid Managed LTC

The AARP has published a report summarizing state provision of Medicaid- funded, managed LTC (MMLTC). The report describes the history of MMLTC, the current status and potential future of MMLTC, as well as exploring the emerging evidence of its impacts on access, quality, and cost. It breaks down the characteristics of 10 MMLTC programs, including PACE. It concludes with the suggestion that with the current budgetary constraints on states, MMLTC may be explored by more states in the future despite little evidence of cost savings.

For more information, go to

http://www.aarp.org/research/assistance/medicaid/inb108_mmltc.html

Reference: Saucier, Paul and Wendy Fox- Grage (2005) Medicaid Managed Long Term Care – Issue Brief. Public Policy Institute, AARP: Washington DC.

9) Primer on Medicaid and the elderly and disabled

This update of a previous report provides a review of how Medicaid works for people who need long-term care and describes the issues for states in providing Medicaid LTC, particularly as the population ages.

For more information, go to

http://www.kff.org/medicaid/7428.cfm

Reference: O’Brien, Ellen (2005) Long-Term Care: Understanding Medicaid’s Role for the Elderly and Disabled.

10) Asset transfer and nursing homes – briefings

The Kaiser Commission on Medicaid and the Uninsured has published two reports which investigate asset transfers and nursing home use. One report (‘Asset Transfer and Nursing Home Use’) examines asset transfer data of elderly people living in nursing homes. It finds that average asset transfers are small and only enough to cover approximately one month of private nursing home care.

For more information, go to

http://www.kff.org/medicaid/7436.cfm

Reference: Liu, Korbin and Tim Waidmann (November 2005) Asset Transfer and Nursing Home Use. Kaiser Commission on Medicaid and the Uninsured: Washington, DC.

The second report ("The Distribution of Assets in the Elderly Population Living in the Community") examines the distribution of assets of elderly people in the community, particularly those people at most risk of entering a nursing home. This study finds that most elderly people in the community do not have assets (apart from home equity) which would fund a nursing home stay for longer than one year.

For more information, go to

http://www.kff.org/medicaid/7335.cfm

Reference: Lyons, Barbara, Andy Schneider and Katherine A. Desmond (June 2005) The Distribution of Assets in the Elderly Population Living in the Community. Kaiser Commission on Medicaid and the Uninsured: Washington, DC.

11) Update on changes made to State Medicaid programs

The Kaiser Commission on Medicaid and the Uninsured provides weekly policy updates on Medicaid developments at a national and state level. This report provides a brief, state by state summary of the key developments up to September 2005, including changes to Medicaid HCBS waivers.

For more information, go to:

http://www.kff.org/medicaid/upload/Newson-Medicaid-and-State-
BudgetsJulythroug-August-2005-Update-Issue-Brief.pdf

12) Reports and information from around the country and the world

* The government of Canada awarded $3 million in funds to two national organizations as a part of the Community Inclusion Initiative, designed to help people with intellectual disabilities become integrated into community life. Through Community Inclusion projects, local communities develop customized strategies to eliminate barriers faced by Canadians with intellectual disabilities and their families.

For more information, go to:

http://www.sdc.gc.ca/en/cs/comm/sd/news/2005/050425.shtml

To learn more about the Community Inclusion Initiative go to:

http://www.communityinclusion.ca/index.cfm?UID=970&UIDL=970

* The June issue of the journal Mental Retardation contains an exchange of parent perspectives on institutions versus community living.

For more information, go to

http://www.aamr.org/Reading_Room/pdf/MR06Tayloreditorial.pdf

* A 2004 survey of developmental disability agencies and state institutions in the U.S. revealed a steady decline in residents, according to a new study published in the journal, Mental Retardation.

For more information, go to

http://www.aamr.org/Reading_Room/pdf/LakinMarch05MR.pdf

* The results of this recent study conclude that a state's political culture determines the prevalence of the use of institutions and nursing homes in the care of persons with developmental disabilities.

To retrieve the study, go to

http://www.uic.edu/orgs/rrtcamr/NursingHomeStudy.pdf

* A tool kit was developed at the request of volunteers, advocates, self-advocates, and professionals concerned that the remarkable progress made towards the inclusion of people with cognitive, intellectual and developmental disabilities into the fabric and mainstream of community life in America was at risk. This tool kit provides the philosophy, policy and research rationale that supports community supports and services for all people with disabilities, in the context of their families, their communities and their country.

For more information, go to

http://thechp.syr.edu/toolkit/

13) The State of the States in Developmental Disabilities 2005

The 2005 edition of the report ‘The State of the States in Developmental Disabilities’ is now available to order online. The report provides information from a longitudinal study and analysis of financial and programmatic trends across the states.

For more information, go to

http://www.cu.edu/ColemanInstitute/stateofthestates/index.html

Reference: Braddock, David, Richard Hemp, Mary Rizzolo (2005) The State of the States in Developmental Disabilities. The Coleman Institute for Cognitive Disabilities, University of Colorado.

14) Disability Statistics report

Researchers at Cornell University have released an Annual Disability Status Report for 2004. It aims to provide a summary of the most recent demographic and economic statistics on the working-age (21-64) population with disabilities by state in the United States. Information is provided on the population size, prevalence, employment, earnings, poverty, household income, home ownership, and activity limitations of working-age people with disabilities, as well as the composition of this population by age, race, gender, and education. Comparisons are made to working-age people without disabilities, across types of disabilities, and to 2003 figures.

For more information, go to

http://www.DisabilityStatistics.org

15) GAO releases report noting poor accessibility conditions in public housing

The U.S. Government Accountability Office (GAO) issued a report to Congress entitled "Public Housing - Distressed Conditions in Developments for the Elderly and Persons with Disabilities and Strategies Used for Improvement." (GAO-06-163, 12/05).

* According to HUD's data, 64 of the 76 public housing projects occupied by the elderly and non-elderly persons with disabilities had less than 5 percent of the units that met the accessibility standards (for persons with mobility disabilities).

* Even many public housing agencies admitted they did not meet the minimum 5 percent requirement. One admitted that none of his apartment units were accessible to persons with disabilities.

* Public housing directors agreed that lack of accessibility "throughout their developments" was "one condition that most adversely affected" disabled persons.

* HUD found elevators not large enough for a person in a wheelchair to turn around, entrance doorways not wide enough for a wheelchair or power scooter to enter, and other physical violations.

For more information, go to:

http://www.gpoaccess.gov/gaoreports/

16) Performance Standards for Medi-Cal Managed Care Organizations Serving people with Disabilities and Chronic Conditions

California governor Arnold Schwarzenegger has proposed a major expansion of mandatory managed care for Californians with disabilities covered under Medi-Cal (the name for Medicaid in California), a group that accounts for 14 percent of beneficiaries and 40 percent of program spending. If enacted, this change would affect more than 500,000 Californians.

A new California HealthCare Foundation report provides a road map for policymakers and program officials wanting to ensure that health plans are responsive to their members with disabilities. A result of extensive research and stakeholder input, the report offers detailed proposals to strengthen existing standards in managed care, ensure that limited state resources are used efficiently and effectively, and improve quality of care for people with disabilities.

For more information go to

http://www.pascenter.org/publications/publication_home.php?id=262

17) Applications solicited for the Ed Roberts Postdoctoral Fellowship in Disability Studies

The Ed Roberts Postdoctoral Fellowship in Disability Studies is now open for applications. The postdoctoral program is funded by the National Institute on Disability and Rehabilitation Research (H133P020009). The goal of this program is to train postdoctoral and professional scholars, in any discipline, to be leaders in disability studies and rehabilitation research and mentorship. Based at the University of California, Berkeley, a San Francisco Bay Area Consortium of universities, research institutes, and disability agencies will recruit people with advanced professional degrees who want to broaden their theoretical outlook and their disability research methodological skills.

For more information, go to

http://www.pascenter.org/news/news_home.php?id=51

18) Selected Conferences during January, February, and March 2006

For more detail about these conferences, go to:

http://pascenter.org/conferences/index.php

January

February

March

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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