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Center for Personal Assistance Services Bulletin
January 2012--Volume 9, Issue 1

In 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


Center Mourns the Passing of Joseph Mullan

It is with great sadness that we inform you of the passing of our colleague, Joseph Mullan in December, 2011 after a long battle with colon cancer. Dr. Mullan was an Associate Professor in the Department of Social and Behavioral Sciences, UCSF.

For more information go to:

President Obama Announces Action to Provide Minimum Wage and Overtime Protections for Nearly 2 Million In-Home Care Workers

The White House has announced new rules proposed by the U.S. Department of Labor that will provide minimum wage and overtime protections for nearly two million workers who provide in-home care services for the elderly and infirmed. Many of these workers provide critical in-home health care services such as tube feeding, wound care, or assistance with physical therapy, and deserve the protections provided under the Fair Labor Standards Act.

For more information go to:

Average Home Health Aide Pay Rates Remain Unchanged

The average private-pay rates for home health aides remained $21 for the third straight year, even as the overall cost of long-term care continues to rise in the U.S., according to a newly released study. Meanwhile, adult day service centers, which employ direct-care workers, saw their daily cost-of-care rate increase from $67 to $70.

For more information, visit:

Department Of Health and Social Services Owes Caregivers $96 Million

The Seattle Times reports that a county judge in Washington State ruled earlier this month that Washington's Department of Social and Health Services owes 22,000 home-care workers about $96 million in back pay and accrued interest. The lawsuit is based on a 2003 decision by Washington State to pay caregivers 15% less if they lived in the same household as the care recipient (in the state's Medicaid program).

For more information, visit:

Two New Short Videos Highlight Long-Term Care and Health Reform

Two new short videos from the Alliance for Health Reform highlight long-term care and health reform. In the first clip Bruce Chernof discusses who needs long-term care and who pays for it. In the second video Bruce Chernof covers how the new health law promotes long-term care.

For more information, visit:

State Freezes Enrollment in Medicaid Aged and Disabled Waiver Program

The Charleston Daily Mail reports that the state of West Virginia recently announced that it will not allow its Aged and Disabled Waiver Program to grow beyond the current 8,000 Medicaid clients receiving services through the waiver. The program provides eligible Medicaid clients with about $25,000 worth of in-home care annually, including through paying family members to provide care.

For more information, visit:

New Program for People at Risk of Institutionalization

Oakland, CA: Seven plaintiffs who represented a class of 35,000 low-income people with disabilities, including older adults, and the California Department of Health Care Services reached a settlement in a federal lawsuit that challenged the State's planned elimination of Adult Day Health Care as a Medi-Cal benefit on December 1, 2011.

For more information, visit:

Gold's Newsletter Reviews Olmstead Progress by State

Steve Gold has produced a newsletter reviewing data from Thompson Reuters and CMS for Medicaid long term care expenditures in both 1999 and 2010 for the nursing facility institution versus the comparable Medicaid LTC community services.

For more information, visit:

Older Californians with Disabilities Struggle To Remain At Home as Public Programs Lose Funding

California's low-income seniors with disabilities are struggling to remain in their homes as public funding for long-term care services shrinks and may be slashed even further, according to a new study by the UCLA Center for Health Policy Research conducted with support from The SCAN Foundation.

For more information, visit:

Colorado Moves Closer to Choice Option

Colorado Governor John Hickenlooper's Policy Director, Lorez Meinhold recently told ADAPT that the state has every intention to apply for the Community First Choice (CFC) Option.

Although the ADAPT activists wanted to hear a firm commitment to the CFC Option in the Affordable Care Act, Ms Meinhold did say that the state was ready to move forward with Community First Choice.

For more information go to:

Medicaid Cuts Are a Matter of Life and Death Say Disabled People In the US

On September 19, ADAPT demonstrators were arrested for filling the offices of Republican Congressmen Jeb Hensarling of Texas and Dave Camp of Michigan. The demonstrators said they were losing their independence due to cuts in Medicaid.

For more information go to:

States are Limiting Medicaid Hospital Coverage in Search for Savings

In the latest sign of how desperate states are to control rising Medicaid costs, a small but growing number of states are sharply limiting hospital coverage - to as few as 10 days a year.

For more information go to:

Despite Reforms, Abuse Continues at Texas Institutions for Disabled

At the Mexia State Supported Living Center, on the sun-bleached site of a former World War II prisoner-of-war camp an hour east of Waco, residents with profound disabilities and behavioral problems spend their days doing repetitive chores: sticking paper into shredders, folding towels, sorting nuts from bolts and, in some cases, being physically abused, despite a sweeping federal settlement signed in 2009 to prevent it.

For more information go to:

Cuts to California IHSS Program Halted

A federal judge ordered a temporary halt to potentially disastrous cuts to California's In-Home Supportive Services program last week. The cuts - totaling $100 million, or 20 percent of IHSS's overall budget - were scheduled to begin Jan. 1, triggered by the state's failure to take in an additional $4 billion in revenue in 2011.

For more information, visit:

New Research Examines Divorce and Genetic Ties in Making Care Giving Decisions

Several professors at the University of Missouri are researching the effects of divorce on decision making around care giving.

The studies include:

  • Looking at women who are caregivers for their ex-husbands and the unique challenges these women face.
  • Decision-making related to divorce, remarriage, and care for older relatives.

For more information, visit:

Nursing and Residential Care Workers Suffer Highest Occupational Injury Rates

Workers in nursing and residential care facilities experienced the highest injury rates of any occupational setting in 2010, according to data recently released by the U.S. Bureau of Labor Statistics.

For more information, visit:

Nursing Home Populations and Occupancy Rates Slowly Falling

Nursing home populations and occupancy rates have been falling for 20 years, a trend that is likely to continue, especially since nursing homes are almost always the most expensive option.

For more information go to:

Post-mortem of the CLASS Act

Health and Human Services secretary Kathleen Sebelius, charged with carrying out this first-ever national program of voluntary long-term care insurance, has officially shut down CLASS. After 19 months of research and consultation, "we have not identified a way to make CLASS work at this time," she said.

For more information go to:

Research Articles and Reports

Center Report Compares Staffing Levels and Deficiencies in Nursing Homes

This Center report from Harrington, Olney, Carrillo & Kang compares staffing levels and deficiencies of the 10 largest U.S. for-profit nursing home chains with five other ownership groups and chain staffing and deficiencies before and after purchase by four private equity companies.

For more information, visit:

New Center Paper Looks at Spousal Caregivers and Effects on Medicaid-Funded Service Use and Expenditures

In this Center report Newcomer, Kang and Doty investigate Medicaid expenditures, hospital use, and nursing home stays, comparing recipients who have paid spousal caregivers with those having other relatives or unrelated individuals as their caregivers.

For more information, visit:

Center Study on the Ownership, Financing, and Management Strategies of Nursing Homes

This Center study by Harrington, Hauser, Olney & Vaillancourt Rosenau examines the ownership, financing, and management strategies of the 10 largest for-profit nursing home chains in the US, including the four largest chains purchased by private equity corporations.

This study shows the increasing complexity of corporate nursing home ownership and the lack of public information about ownership and financial status.

For more information, visit:

Center Paper Looks at State Tax Law and People with Disabilities

This Center paper by Steve Mendelsohn examines the role of state income tax law provisions as a source of subsidization for the personal assistance services that seniors and many people with disabilities need in order to achieve goals of independent living, and in order to remain in their homes and communities rather than being unnecessarily forced into nursing home care.

For more information, visit:

Medicaid Home and Community-Based Service Programs: A Data Update

This Center report by Howard, Ng and Harrington presents a summary of the main trends to emerge for the three Medicaid HCBS programs in 2008 and the results of a survey of policies such as eligibility criteria and waiting lists.

For more information, visit:

Center Study Analysis of the Nation's Fastest-Growing Jobs: Home Health and Personal Care Aides

Numbering on the order of 2.5 million workers, the home care and personal assistance workforce in the United States has reached historic proportions and is expected to increase at rates four to five times that of jobs overall in the economy.

Using the best data and research evidence available, this national report by Seavey and Marquand presents the most complete picture possible of America's home care and personal assistance workforce.

For more information, visit:

Reports Looks at How California's Low-Income Seniors with Disabilities Are Struggling To Remain In Their Homes

California's low-income seniors with disabilities are struggling to remain in their homes as public funding for long-term care services shrinks and may be slashed even further. This vulnerable group could face a 20% loss in the number of paid caregiver hours they receive, on top of cuts already enacted earlier this year.

For more information, visit:

Report Profiles Residents in Georgia Who Have Participated in the State's Money Follows the Person Program

This brief profiles several Georgia residents who have participated in the state's Money Follows the Person demonstration program, which helps transition people from institutional long-term care back into their homes or the community. It is part of a larger package of resources examining the Money Follows the Person program.

For more information, visit:

Report Looks at What Health Tasks Are Delegated to Personal Care Community Workers

Many persons with disabilities require various health maintenance tasks to survive. States vary tremendously regarding who can legally perform these tasks. Depending on what State a person resides in, and therefore what health maintenance tasks can be delegated, often determines whether a person is unnecessarily institutionalized.

For more information, visit:

Report Looks at How States are Rebalancing Long-Term Services and Supports

Among individuals with intellectual and developmental disabilities, there is strong and consistent evidence that people who move to the community demonstrate improved adaptive behavior skills. This has motivated states to pursue "rebalancing" initiatives to move their long-term services and supports systems away from a dependency on institutional care and toward a system that embraces consumer choice and care in the home or community.

For more information, visit:

Study Looks at How Medicaid Saving Can Be Made By Using Home and Community-Based Alternatives to Institutional Long-Term Care

The Arkansas Community Connector Program used specially trained community health workers to identify people at risk of entering nursing homes in three disadvantaged counties and connected them to Medicaid home and community-based services. The result was a 23.8% average reduction in annual Medicaid spending per participant during the period 2005–08.

For more information, visit:

FEMA Release Report, "A Whole Community Approach to Emergency Management"

This report presents a foundation for increasing individual preparedness and engaging with members of the community as collaborative resources to enhance the resiliency and security of our nation through a whole community approach.

For more information, visit:

New Paper Looks Willingness in Home Healthcare Workers to Report to Work in an Emergency

This paper looks at the ability and willingness of home healthcare workers to report to work during a pandemic influenza outbreak.

Results show that a large majority of the participating home healthcare workers would either be unable or unwilling to report to duty during a pandemic.

For more information, visit:

FEMA Report Lists Additional Steps Needed For People with Disabilities in Planning For Emergencies

If you or someone close to you has a disability and other access and functional needs, you may have to take additional steps to protect yourself and your family in an emergency.

For more information, visit:

New Paper Looks at Preparedness of the Death Care Sector in an Emergency

This paper looks at the preparedness of the death care sector (i.e., funeral industry organizations) and to determine the workforce's ability and willingness to report to duty during a hypothetical high fatality pandemic event.

For more information, visit:

Report Explains Medicaid's Eligibility Rules

This report provides an explanation of Medicaid's current eligibility, asset transfer, and estate recovery rules. A policy discussion of the potential implications of these rules follows.

For more information, visit:

Analysis Examines the Proportion of Medicaid Enrollment and Spending Attributable To State Expansion Enrollees versus Federal Core Enrollees

The report begins with background on the general rules for determining eligibility in Medicaid for aged and disabled individuals. It then provides an explanation of the major eligibility groups about which states were surveyed and the income and resources thresholds associated with each of these groups.

For more information, visit:

Report Looks At Medicaid Eligibility for Persons Age 65+ and Individuals with Disabilities

To receive federal Medicaid matching funds, states that participate in Medicaid must meet federal requirements, which include covering specified "federal core" enrollee groups and mandatory health benefits. States also may choose to cover additional "state expansion" enrollees and optional benefits with federal Medicaid matching funds.

Using 2007 data, this analysis examines the proportion of Medicaid enrollment and spending attributable to state expansion enrollees versus federal core enrollees and presents estimates of spending on mandatory versus optional health benefits across all enrollee types.

For more information, visit:

New Brief Describes the Prevalence of Functional Impairment among Seniors by Number of Chronic Conditions

Seniors (65 and over) with multiple chronic conditions often have complex health needs and a subset of these individuals also have functional impairment that requires long-term services and supports. This brief describes the prevalence of functional impairment among seniors by number of chronic conditions.

For more information, visit:

Report Looks at Dual Eligible's with both Chronic Conditions and Functional Impairments

Seniors with multiple chronic conditions often have complex health needs and a subset of these individuals also have functional impairment that requires long-term services and supports. Dual eligibles are those individuals who are enrolled in both Medicare and Medicaid. This brief compares the proportion of dual eligible seniors with both chronic conditions and functional impairment to seniors eligible for Medicare only.

For more information, visit:

A Literature Review of Personal Assistance Services in the Workplace

Personal assistance services can be valuable adjuncts to the complement of accommodations that support workers with disabilities. This literature review explores the professional literature on the use of PAS in the workplace.

For more information, visit:

New Center Study Looks at Nursing Home Emancipation

The U.S. Supreme Court's Olmstead decision affirmed the right of individual with disabilities to live in the community. Centers for independent living and other disability advocacy organizations have initiated a wide range of efforts to emancipate (i.e., transition) adults with disabilities from undesired nursing home placements to community living.

This Center study by Seekins, Ravesloot, Katz, Liston, Oxford, Altom, White, Petty & Kafka assess the levels of nursing home emancipation services and barriers to nursing home transition.

For more information, visit:

Leaders from the Disability and Labor Communities Publish "Guiding Principles" to Gaining Greater Control and Access to Support

These Guiding Principles were produced by Kafka, Nerney, Mahoney, McGaffigan, Henry, Adams, Frane & Oxford and represent the results of more than a year of intense, honest, and detailed discussions over countless hours among leaders from the disability and labor communities.

This document is aimed at anyone involved in participant or client directed services from representatives of unions, advocates, and researchers in the field.

For more information, visit:

Report Looks at Workplace Injury and Illnesses For 2010

Nearly 3.1 million nonfatal workplace injuries and illnesses were reported among private industry employers in 2010, resulting in an incidence rate of 3.5 cases per 100 equivalent full-time workers--down from 3.6 cases in 2009, the U.S. Bureau of Labor Statistics reported.

The report contains statistics for nursing home workers and other health care workers.

For more information, visit:

Study Examines the Relationship of Unmet Need for 6 Disability-Related Health Care Services to Current Employment Status

The employment rate among adults with disabilities is significantly lower than that among adults without disabilities. Ensuring access to rehabilitative and other health care services may help to address health-related barriers to employment for working-age people with disabilities. This study examined the relationship of unmet need for 6 disability-related health care services to current employment status among working-age adults with disabilities enrolled in the Massachusetts Medicaid program.

For more information, visit:

Study Documents the Prevalence of Unmet Need for HCBS Among a Representative Sample of Working-Age Persons with Disabilities

Home and community-based services (HCBS) are vital to the health and well-being of persons with disabilities. However, no previous population-based studies have examined the prevalence of unmet needs for HCBS among working-age persons with disabilities. The purpose of this report is to document the prevalence of unmet need for HCBS among a representative sample of working-age persons with disabilities in Massachusetts.

For more information, visit:

Policy and Legislation

Notice of Proposed Rulemaking to Amend the Companionship and Live-In Worker Regulations

While Congress expanded protections to "domestic service" workers in 1974, these Amendments also created a limited exemption from both the minimum wage and overtime pay requirements of the Act for casual babysitters and companions for the aged and infirm, and created an exemption from the overtime pay requirement only for live-in domestic workers.

Although the regulations governing exemptions have been substantially unchanged since they were promulgated in 1975, the in-home care industry has undergone a dramatic transformation. There has been a growing demand for long-term in-home care, and as a result the in-home care services industry has grown substantially. However, the earnings of in-home care employees remain among the lowest in the service industry, impeding efforts to improve both jobs and care.

For more information, visit:

Home Care Consumer Bill of Rights Proposed by Senator Franken

With the support of three of his colleagues from the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP), Senator Al Franken (D-MN) introduced the Home Care Consumer Bill of Rights Act (S. 1750) on October 20.

Franken plans to incorporate the bill (pdf) into the upcoming reauthorization of the Older Americans Act (OAA). The bill aims to guarantee basic rights, including protection from abuse and neglect, to older Americans who receive long-term services and supports in their homes and communities.

For more information, visit:

Health Reform Law Creates New Opportunities to Better Recognize and Support Family Caregivers

Family caregivers are the most important source of support to older people and adults with chronic or disabling conditions. A new health care reform law - the Patient Protection and Affordable Care Act includes a number of provisions that provide meaningful opportunities to better recognize and address caregiver needs.

For more information, visit:

Without CLASS, What's Next To Help Meet Long-Term Care Needs?

The New York Times and Politico both offer analyses of what went wrong and what might happen next – including concerns from critics that CLASS could be revived at any time.

For more information, visit:

Voters in Washington State Approve Increasing Training for Long-Term Care Workers

Initiative 1163 would more than double required training - from 34 to 75 hours - for most new long-term-care workers. It also would require certification and more rigorous background checks.

For more information, visit:

On the Center Web Page

New PAS Center Webinars

On December 16th Steve Mendelsohn presented a webcast titled, "Federal Tax Provisions that Help Meet the Costs of Home and Community-based Care". In this webinar Steve talked about the role of state income tax law provisions as a source of subsidization for the personal assistance services that seniors and many people with disabilities need in order to achieve goals of independent living, and in order to remain in their homes and communities.

On November 29th Charlene Harrington presented a webcast titled, "Trends in Medicaid Home and Community Based Programs and Policies" which discussed the latest trends in participants, expenditures and policies for the three Medicaid home and community based services (HCBS) programs.

Both webinars have been archived on the PAS Center website along with the full transcript and a PowerPoint presentation.

For more information go to:

New Ask Mike Questions and Responses

Recently, Mike Oxford has answered questions concerning:

  • Worried about cuts in service
  • Need assistance for a family member
  • Moved state and want to keep the same care provider
  • Designating a caregiver for my brother in a will
  • Hiring a personal care provider for our Mother

To read all of the Ask Mike letters and responses, go to:

Mobile Version of the PAS Center Website

There is now a version of the PAS Center website which is better suited to small screens (i.e. smart phones). The mobile site is automatically loaded if a small screen is detected.

The mobile site has reduced graphics to improve the speed of page loading and the reliance on pointing devices (e.g. a mouse) for navigation has been reduced.

New Audio Policy Updates

A new policy update has been added which talks about the funding crisis the CLASS Act is currently experiencing.

For more information go to:

Selected Conferences during January, February and March, 2012

For more detail about these conferences, go to:


January 10, 2012 Accommodating Individuals with Limited Dexterity - Common Workplace Situations and Solutions
Hosted by: JAN
Location: Webinar, 2pm (Eastern)

January 25 - January 28, 2012 ATIA 2012 Orlando
Hosted by: Assistive Technology Industry Association
Location: Orlando, Florida

January 26, 2012 Care Innovations Summit
Hosted by: The Center for Medicare & Medicaid Innovation
Location: Washington, DC


February 13 - February 14, 2012 National Health Policy Conference
Hosted by: AcademyHealth
Location: Washington, DC

February 14 - February 17, 2012 Disability Policy Seminar
Hosted by: The Arc of the United States
Location: Washington, D.C.

February 14, 2012 Current Events in Accommodation
Hosted by: JAN
Location: Webinar, 2pm (Eastern)

February 22 - February 25, 2012 LDA 49th Annual International Conference
Hosted by: Learning Disabilities Association of America
Location: Chicago, IL


March 01 - March 02, 2012 Race, Ethnicity, and Disability: State of the Science Conference
Hosted by: NIDRR
Location: Arlington, VA.

March 13, 2012 Best Practices
Hosted by: JAN
Location: Webinar, 2pm (Eastern)

March 13, 2012 South Carolina Assistive Technology Expo 2012
Hosted by: South Carolina Assistive Technology Program
Location: West Columbia, SC

March 26 - March 27, 2012 28th Annual Pacific Rim International Conference on Disability & Diversity
Hosted by: The UH Center on Disability Studies
Location: Honolulu, HI

March 28 - April 01, 2012 2012 Aging in America Conference
Hosted by: ASA
Location: Washington, DC

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 #H133B031102 & H133B080002. 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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