Publications

The Community Living Policy Center and affiliates publish policy briefs, research articles, and trainings to bring more awareness to, and advancement of, home and community-based services, long-term services and supports, and participatory advocacy for the disability community.  Below are our most recent, featured publications. Past publications are located in the drop down accordion menu below. Please be sure to also visit our Webinars Page to see our past presentations and trainings.

Featured Publications:

February, 2020: Identifying, Evaluating and Remediating “Settings That Isolate” in the Context of CMS Guidance on Heightened Scrutiny Requirements within the HCBS Settings Rule

Ari Ne'eman

First issued in 2014, the Home and Community Based Settings Rule seeks to ensure that the limited Medicaid funding dedicated to Home and Community Based Services (HCBS) funds settings that are truly home- and community based in nature, rather than settings that retain the characteristics of institutions.  As a result of advances in federal public policy and civil rights law, coupled by demands from people with disabilities and their advocates for greater community-based options, states have shifted funds and helped people transition from institutional settings to community-based ones, with the goal of delivering higher quality services consistent with the autonomy and integration available in the community. In order to ensure that these transitions truly reflect a change in the experience of the person receiving services, the Settings Rule articulates the minimum standards a setting must meet to qualify as community-based.

January, 2020: White Paper on Outcomes and Metrics to Support States’ Implementation of the HCBS Settings Rule.

The HCBS Advocacy Coalition, with support from the Community Living Policy Center, released a white paper to assist states and stakeholders in tracking progress and outcomes from implementation of the Medicaid Home and Community Based (HCBS) Settings Rule.  Issued in 2014, the Rule is designed to ensure that all people receiving HCBS have the full benefits of community living, including access to the broader community, choice and control over their daily lives, and opportunities for employment. States have until March 2022 to comply with the Rule, which if implemented well, has the potential to improve the quality of Medicaid-funded HCBS systems at all levels: individual participants, providers, and state systems.

The Rule requires states to engage in ongoing monitoring throughout implementation and after to ensure ongoing compliance.  To this end, it is critical that state agencies and stakeholders have conversations about how to measure progress.  In an effort to support these conversations, the HCBS Advocacy Coalition brought together national subject matter experts[i] to develop recommended outcomes and related metrics.  A white paper with the results of this work is available at https://hcbsadvocacy.org/2020-outcomes-paper/

Experts included representatives from the HCBS Advocacy Coalition (Center for Public Representation, Autistic Self Advocacy Network, and the National Health Law Program), the Community Living Policy Center, National Association of State Directors of Developmental Disabilities Services (NASDDDS), Human Services Research Institute (HRSI), The Council on Quality Leadership (CQL), Institute for Community Inclusion at UMass Boston, Institute for Community Integration at University of Minnesota, and The State of the States in Intellectual and Developmental Disabilities Project at University of Colorado.

Appendix 1: Tracking Progress Matrix

2019

December, 2019: Easy Does It: A Promising Model for Emergency Home and Community-Based Services

Disability Rights Education and Defense Fund (DREDF)

Easy Does It, a non-profit organization founded by people with disabilities in 1994, provides emergency personal assistance services, accessible transportation, wheelchair and assistive device repair, case management and other services for people with physical disabilities who live in Berkeley, California. In 2018, with 26 employees and a $1.2 million budget, EDI responded to 3,814 requests for service from about 600 disabled and older residents of Berkeley. The organization exemplifies a promising practice for providing emergency PAS and other home and community-based services for people with significant functional limitations. This report introduces EDI and presents a basic blueprint for people advocating to provide similar services in their communities.

November, 2019:This Rule Rules!: The HCBS Settings Rule and You

Autistic Self Advocacy Network (ASAN)

The Home and Community-Based Services Settings Rule, or HCBS Settings Rule, allows people with disabilities to access resources we need to live in the community. Learning about the rule is an important part of understanding our rights. That’s why we’re excited to announce a new plain language toolkit, all about the HCBS Settings Rule!

This toolkit focuses on how the Home and Community-Based Services Settings Rule helps us live in the community. Community living means being able to live near people with and without disabilities, in a place where we can make our own decisions.

This toolkit answers many important questions about the HCBS Settings Rule and community living, such as:

  •  What is community living?
  • What is an institution?
  • What are home and community-based services (HCBS)?
  • What does the HCBS Settings Rule say?
  • What rights does the HCBS Settings Rule give me?
  • What rules do HCBS providers have to follow?

October, 2019: Improving Home and Community-Based Services Infrastructure: A Policy Proposal

Anne Montgomery, Joe Caldwell, Mike Smith, Nicole Jorwic, & Howard Bedlin

This brief outlines a proposal for an innovative program that assists states with improving their home and community-based services (HCBS) infrastructure. Key goals include strengthening housing, transportation, employment, workforce and caregiver supports in communities across the country with initiatives that address social determinants of health (SDOH), so that persons with disabilities and older adults with disabilities are served where they wish to be served. Specifications for the proposal were developed through a workgroup of the Disability and Aging Collaborative.

July, 2019: Evidence for the Impact of Money Follows the Person

H. Stephen Kaye

Since 2007, states with Money Follows the Person (MFP) programs transitioned more than 90,000 people receiving long-term services and supports in institutions back to their homes and communities. Based on institutional population data from multiple sources and on LTSS expenditure data, analyzed separately for people with and without intellectual and other developmental disabilities, this report offers evidence that states with robust MFP programs fared better than states without MFP or with minimal MFP programs, both in terms of reducing institutional populations and expenditures and in rebalancing their LTSS systems. MFP is an important tool for states to use in reducing reliance on institutional services and shifting to home and community-based services.

June, 2019: Autistic Self Advocacy Network’s Community Living Summit: What Autism Researchers Should Study

The Autistic Self Advocacy Network (ASAN)

This report describes and examines themes discussed during a self-advocate summit on community living for people with intellectual and developmental disabilities, or I/DD. The Community Living Summit, a two-day moderated discussion, was hosted by the Autistic Self Advocacy Network (ASAN) and funded by the University of California, San Francisco's Community Living Policy Center. We hope that this report will therefore guide policymakers and service providers as they attempt to establish best practices for providing supports and services in the community to autistic people and other people with I/DD.

June, 2019: “The Best Outcome We’ve Had”: Key Themes From A Self-Advocate Summit On Community Living

The Autistic Self Advocacy Network (ASAN)

This report describes and examines themes discussed during a self-advocate summit on community living for people with intellectual and developmental disabilities, or I/DD. This report will demonstrate how each of these themes relate to community living and will describe what autistic self-advocates felt to be the most important aspects of each of these themes. We hope that this report will therefore guide policymakers and service providers as they attempt to establish best practices for providing supports and services in the community to autistic people and other people with I/DD.

May, 2019: Disability-Related Disparities in Access to Health Care Before (2008–2010) and After (2015–2017) the Affordable Care Act

H. Stephen Kaye

This study explores the effect of the Affordable Care Act (ACA) on disparities in access to health care based on disability status, as well as age, income, race, and ethnicity. This study found that while the ACA improved overall access to health care and reduced some disparities, substantial disparities persist. Disability status remains associated with much greater risk of delayed or forgone care, and mental health disability is associated with greater likelihood of uninsurance. 

February, 2019: Managed Long-Term Services and Supports: Contract Provisions Related to Transition and Diversion from Institutional Placement

Ari Ne'eman

As a growing number of states adopt Managed Long-Term Services and Supports frameworks, it becomes imperative that ongoing efforts to promote HCBS over institutional services continue and are integrated into the incentives and requirements of managed care contracts. Managed care can help states accelerate the shift towards the community--or slow and reverse it, depending on the incentives put into requests for proposals and contract language. 

2018

December, 2018: Managed Long-Term Services and Supports: Assessing Provider Network Adequacy

Ari Ne'eman

The decentralized nature of Home and Community-Based Services, and the fact that many HCBS providers travel to an individual’s home rather than service recipients traveling to provider facilities, have presented real difficulties for policymakers and advocates seeking to determine the most appropriate means of measuring network adequacy for LTSS providers. This report outlines multiple options that are available to state policymakers seeking to evaluate network adequacy for HCBS providers under MLTSS programs.

November, 2018: Best Practices in State-Sponsored Personal Care Aide Training Curricula: Lessons from Six States

Stephen Campbell, Paraprofessional Healthcare Institute (PHI)

In the absence of widespread training standards, many personal care aides (PCAs) enter the field without adequate preparation, which can lead to anxieties and injuries on the job, among other concerns. Despite their career aspirations, some of these workers end up leaving their jobs because they lack the skills and confidence to provide high-quality care. Recognizing a need to raise the bar on PCA training, six states -- Arizona, Maine, Massachusetts, New York, Virginia, and Washington -- have developed model curricula for statewide implementation. This report examines these state-sponsored curricula to identify best practices in training methods and content for PCAs and other direct care workers.

September, 2018: Beneficiaries Respond to California’s Program to Integrate Medicare, Medicaid, and Long-Term Services

Carrie L. Graham, Pi-Ju Liu, Brooke A. Hollister, H. Stephen Kaye, and Charlene Harrington

In 2014 California implemented a demonstration project called Cal MediConnect, which used managed care organizations to integrate Medicare and Medicaid, including long-term services and supports for beneficiaries dually eligible for Medicare and Medicaid. Post-enrollment telephone surveys assessed how enrollees adjusted to Cal MediConnect over time. Results showed increased satisfaction with benefits, improved ratings of quality of care, fewer acute care visits, and increased personal care assistance hours over time.

September, 2018: Assessing the Experiences of Dually Eligible Beneficiaries in Cal MediConnect: Results of a Longitudinal Survey

Carrie Graham, Linda Ly, Bethany Lee, and Pi-Ju Liu

The Community Living Policy Center and the Institute for Health and Aging partnered to conduct an evaluation of Cal MediConnect (CMC). One goal of this evaluation was to assess beneficiaries' experiences with care, include access, quality, and coordination over time. To that end, researchers conducted a longitudinal telephone survey with three groups of dually eligible beneficiaries: those enrolled in CMC, those who opted out, and those in non-demonstration (non-CCI) counties. Key findings from the first telephone survey (T1) were reported in 2016.

June, 2018: Advocates' Guide to Accessibility in Medicaid Managed Care Grievances and Appeals

Carly A. Myers, The Disability Rights Education & Defense Fund (DREDF)

This document provides guidance on how States can, in the process of implementing the new federal regulations outlining new procedural requirements for managed care plans' grievance and appeal systems, ensure that people with disabilities have equal access to the grievance and appeal and State fair hearing systems, as mandated by Section 504 of the Rehabilitation Act ("Rehab Act"), the Americans with Disabilities Act ("ADA"), and Section 1557 of the Affordable Care Act ("ACA").

May, 2018: Coordinating Care for Duals Through Cal MediConnect

Brooke Hollister, Mel Neri, Pi-Ju Liu, Winston Tseng, and Carrie L. Graham

Researchers at the University of California conducted an evaluation of the implementation and impact of the CMC program on health systems and beneficiaries. This research brief examines the implementation of the new CMC care coordination benefit, including the progress made and challenges that remain in coordinating care for dual eligibles. Results are summarized from 94 key informant interviews with health system stakeholders.

March, 2018: Improving Support for Health Maintenance in Home and Community-Based Services: How States Adapt Nursing Rules for the Community First Choice Program

Mary Lou Breslin, The Disability Rights Education & Defense Fund (DREDF)

Many people with disabilities who get paid help with daily activities also need help with health maintenance tasks, such as ostomy care, ventilator management, bowel and bladder care, tube feeding, insulin injections, and management of other medications.  In many states, laws prohibit paid workers without nursing or other medical licenses from performing such tasks.  In others, nurses are permitted to delegate such tasks to these workers.  In some instances, such workers can perform health maintenance tasks under the direction of the consumer, without nurse delegation or supervision.

February, 2018: How do disability and poor health impact proposed Medicaid work requirements?

H. Stephen Kaye

In January 2018, the Centers for Medicare and Medicaid Services (CMS) issued guidance that would allow states to use 1115 Waivers to add “work and community engagement” requirements for working-age Medicaid beneficiaries.  This report examines the extent to which disability affects working-age Medicaid beneficiaries, and identifies the subset of beneficiaries with disabilities and work-limiting health conditions who would likely be exempt from proposed Medicaid work requirements or would benefit from modified requirements.

January, 2018: Integration of Medicare and Medicaid in California: Provider Perspectives of Cal MediConnect

Brooke Hollister, Winston Tseng, Marian Pi-Ju Liu, Mel Neri, Bethany Lee, Charlene Harrington, and Carrie L. Graham

In January 2018, the Centers for Medicare and Medicaid Services (CMS) issued guidance that would allow states to use 1115 Waivers to add “work and community engagement” requirements for working-age Medicaid beneficiaries.  This report examines the extent to which disability affects working-age Medicaid beneficiaries, and identifies the subset of beneficiaries with disabilities and work-limiting health conditions who would likely be exempt from proposed Medicaid work requirements or would benefit from modified requirements.

2017

November, 2017: Provision of Home- and Community-Based Services through Cal MediConnect Health Plans

Carrie Graham, Mel Neri, Brooke Hollister, Marian Liu, Stephen Kaye, Edward Bozwell Bueno, Winston Tseng, & Charlene Harrington

Researchers from the University of California have conducted an evaluation of the impact of the Cal MediConnect (CMC) program on beneficiaries and health systems. One goal of CMC was to decrease expenditures through incentives to redirect care away from institutional settings and toward more home- and community-based services (HCBS). This research brief includes results from an in-depth examination of the efforts of CMC health plans to administer HCBS through their new managed long-term services and supports programs.

November, 2017: Managed Long-Term Services and Supports: Assessment, Authorization, Service Planning, and Case Management in State MLTSS Systems

Ari Ne'eman

Over the course of the last decade, the United States has seen a significant increase in the use of Managed Long Term Services and Supports (MLTSS) within the Medicaid program. In order to ensure that MLTSS systems deliver high-quality services to people with disabilities and do not involve inadequate or overly medicalized service provision, states adopt certain requirements within their procurement for and contracting with MCOs.

November, 2017: Managed Long-Term Services and Supports: Using Capitation to Promote Home and Community-Based Services

H. Stephen Kaye

In Medicaid or Medicaid/Medicare managed long-term services and supports (LTSS) programs, states pay managed care organizations (MCOs) a per-member-per-month fee, or "capitation payment," which they structure to achieve policy goals. Examination of the capitation rate structures from these programs reveals several common practices, which can either promote or hinder rebalancing of the LTSS system. This report explores the capitation structures of multiple state programs and offers recommendations for improvements that might provide greater rebalancing incentives.

October, 2017: Training Standards for Personal Care Aides: Spotlight on Washington

Stephen Campbell, Paraprofessional Healthcare Institute (PHI)

For years, training standards for personal care aides in Washington posed several challenges that affected consumers and workers alike. In 2012, advocates responded by successfully passing a ballot initiative that created a new training system for these aides—expanding learning objectives, increasing training hours, and introducing certification requirements. In just a few years, Washington raised the bar nationwide for training and certification. This report is part of a three-part series focusing on states that have led the way in developing personal care aide training standards.

September, 2017: Training Standards for Personal Care Aides: Spotlight on Iowa

Stephen Campbell, Paraprofessional Healthcare Institute (PHI)

For years, training standards for personal care aides in Washington posed several challenges that affected consumers and workers alike. In 2012, advocates responded by successfully passing a ballot initiative that created a new training system for these aides—expanding learning objectives, increasing training hours, and introducing certification requirements. In just a few years, Washington raised the bar nationwide for training and certification. This report is part of a three-part series focusing on states that have led the way in developing personal care aide training standards.

September, 2017: Training Standards for Personal Care Aides: Spotlight on Arizona

Stephen Campbell, Paraprofessional Healthcare Institute (PHI)

Arizona is among just 19 states that have enacted uniform training requirements for personal care aides (PCAs) across all Medicaid long-term care programs. The process by which the state adopted these training standards spanned from 2004 to 2012. During that time, home care leaders deliberated extensively over how to achieve a system that ensured a baseline level of competency among PCAs, while balancing the priorities of workers, consumers, providers, and the state. What was the need for PCA training standards in Arizona? How did home care leaders address that need?

August, 2017: The Coordination of Behavioral Health Care Through Cal MediConnect

Pi-Ju Liu, Carrie Graham, Mel Neri, Austin Marshall, Winston Tseng, and Brooke Hollister

The second in a series of research briefs by the UCSF Community Living Policy Center and the UC Berkeley Health Research for Action Center, this latest research brief examines the efforts of CMC health plans to coordinate behavioral health services for their beneficiaries. The brief describes the progress CMC plans have made toward better coordination of behavioral health services, including new integrated models of care, successful strategies, and ongoing challenges.

July, 2017: Promoting Physical and Programmatic Accessibility in Managed Long-Term Services and Supports Programs

Mary Lou Breslin, The Disability Rights Education & Defense Fund (DREDF)

We reviewed managed long-term services and supports (LTSS) contracts for nine states in order to understand the extent to which they promote physical and programmatic accessibility for enrollees with disabilities. Medicare/Medicaid duals demonstration contracts for Virginia, Illinois, Massachusetts, Michigan, New York, and South Carolina contain provisions that represent a ground shift in federal expectations and requirements for physical and programmatic accessibility of managed care organizations (MCOs) and the providers with whom they contract.

July, 2017: Integration of Medicare and Medicaid for dually eligible beneficiaries: A focus group study examining beneficiaries' early experiences in California's dual financial alignment demonstration

Carrie Graham, Holly Stewart, Elaine Kurtovich, and Pi-Ju Liu

Similar to other studies that examine beneficiaries' experiences with delivery system change, participants were confused about the passive enrollment process and demonstrated a lack of  understanding of many aspects of CMC. Analysis identified areas where beneficiaries noted improvement in their quality of care, access, and coordination of care, but also areas for improvement. Streamlining the authorization processes and extending continuity of care provisions would improve access to providers. Increasing beneficiaries' awareness of CMC plans' role in LTSS is key to improving their access to home- and community-based services.

July, 2017: The Potential Impact of the Better Care Reconciliation Act on Home and Community-Based Services Spending

H. Stephen Kaye

The Better Care Reconciliation Act (BCRA) proposes to cap Federal Medicaid reimbursements to the states on a per-enrollee basis, effectively limiting growth to a rate at first only modestly exceeding the rate of inflation in healthcare costs and then falling below inflation. If the BCRA were to be enacted, it is reasonable to assume that most states would limit home and community-based services (HCBS) spending to the per-enrollee cap amount; otherwise, any excess comes entirely out of the state budget.

June, 2017: Aging with a Physical Disability in Medicaid Managed Care

Tamar Heller, Randall Owen, Anne Bowers, and Hailee M. Gibbons

This study examines health services appraisal (HSA) and unmet health-care needs for adults (age 50 and over) with physical disabilities in Medicaid managed care (MMC) versus Medicaid fee for service (FFS). Surveys from 309 individuals in MMC and 349 in FFS 2 years after MMC implementation included demographics, MMC processes, HSA, and unmet health-care needs.

May, 2017: The Impact of Cal MediConnect on Transitions from Institutional to Community-Based Settings

Carrie Graham, Mel Neri, and Edward Bozwell Bueno

As part of the University of California’s three-year evaluation of the Cal MediConnect (CMC) program, this research brief examines the efforts of CMC health plans to identify and transition members from long-term care institutions to home and community-based settings. Findings describe the progress many CMC plans have made in accelerating transitions out of institutional care, including successful strategies and challenges encountered in the process, as well as the barriers that still remain.

2016

October, 2016: Medicaid Home and Community-Based Services Programs: 2013 Data Update

Terrence Ng, Charlene Harrington, MaryBeth Musumeci, and Petry Ubri

This report summarizes the key national trends to emerge from the latest (2013) participant and expenditure data for the three main Medicaid HCBS programs: (1) the mandatory home health services state plan benefit, (2) the optional personal care services state plan benefit, and (3) optional § 1915 (c) HCBS waivers. It also briefly discusses the provision of Medicaid HCBS through § 1115 demonstration waivers and highlights findings from a 2015 survey of Medicaid HCBS participant eligibility, enrollment, and provider reimbursement policies, including those related to the U.S.

September, 2016: Care Coordination Experiences of People with Disabilities Enrolled in Medicaid Managed Care

Anne Bowers, Randall Owen, and Tamar Heller

This study's aim is to understand the impact of experience and contacts with care coordinators on Medicaid Managed Care (MMC) enrollees with disabilities. Primary data was collected from a random sample of 6000 out of the 100,000 people with disabilities enrolled in one state’s mandatory MMC program. Surveys were conducted through the mail, telephone, and Internet; 1041 surveys were completed. Findings indicated that quality of care coordination, but not frequency of contact alone, is associated with better health outcomes for MMC enrollees.

August, 2016: Evaluation of Cal MediConnect: Key Findings from a Survey with Beneficiaries

Carrie Graham, Pi-Ju Liu, and Steve Kaye

This report is part of an evaluation of Cal MediConnect, California's demonstration project to integrate care for people covered under both Medicare and Medicaid.  The evaluation is being conducted by the Community Living Policy Center at UCSF and the Health Research for Action Center at UC Berkeley, and is funded by The SCAN Foundation and NIDILRR.  This report presents findings from a survey of Cal MediConnect beneficiaries and comparison samples conducted over the telephone in early 2016.  With respect to long-term services and supports, LTSS-using beneficiaries in Cal MediConnect report that health plans typically do not ask them about their LTSS, and that rarely was the beneficiary aware of any change that had been made to their LTSS as a result.

July, 2016: Cal MediConnect: How Have Health Systems Responded?

Brooke Hollister, Carrie Graham, Charlene Harrington, Alice Wong, Luke O’Shea, Elaine Kurtovich, Brenda Nussey, and Pi-Ju Liu

Researchers at the University of California worked with a stakeholder advisory group to design an evaluation of Cal MediConnect (CMC), California’s dual financial alignment demonstration. It was decided that the evaluation should include qualitative interviews with stakeholders engaged in CMC to determine how the program has impacted the health system and how the system and stakeholders have responded to CMC.

April, 2016: Health Care Use Before and After Entering Long-Term Services and Supports

Robert Newcomer, Charlene Harrington, Denis Hulett, Taewoon Kang, Michelle Ko, and Andrew Bindman

This study examines the health care utilization patterns of Medicare and Medicaid enrollees (MMEs) before and after initiating long-term care in the community or after admission to a nursing facility (NF). Results indicate that hospital and ED use prior to and following NF and personal care program entry suggest a need for reassessing the monitoring of these high-risk populations and the communication between health and community care providers.

April, 2016: Health Services Appraisal and the Transition to Medicaid Managed Care from Fee for Service

Randall Owen, Tamar Heller, and Anne Bowers

Many states are transitioning fee-for-service (FFS) Medicaid into Medicaid Managed Care (MMC) for people with disabilities. Objective: This study examined managed care's impact on health services appraisal (HSA) and unmet medical needs of individuals with disabilities receiving Medicaid. This research points to the importance of meeting unmet needs of individuals in MMC and the need for increased continuity of care as people transition from FFS.

March, 2016: Health Care Expenditures After Initiating Long-term Services and Supports in the Community Versus in a Nursing Facility

Robert J. Newcomer, Michelle Ko, Taewoon Kang, Charlene Harrington, Denis Hulett, and Andrew B. Bindman

This study compares health care expenditures among users of Medicaid home and community-based services (HCBS) versus those using extended nursing facility care. Costs for those initiating extended nursing facility care were, on average, $2919 higher adjusted total health care expenditures per month compared to those who initiated HCBS. The difference was primarily attributable to spending on LTSS $2855. On average, the monthly LTSS expenditures were higher for Medicare $1501 and for Medicaid $1344 when LTSS was provided in a nursing facility rather than in the community.

March, 2016: Streamlining Medicaid Home and Community-Based Services: Key Policy Questions

Mary Sowers, Henry Claypool, and MaryBeth Musumeci

Medicaid’s current home and community-based services (HCBS) programs represent a 35 year incremental approach to system design. Since the early 1980s, Congress has amended the law numerous times, seeking to ameliorate the program’s institutional bias by creating new authorities and incentives for states to offer HCBS. While substantially increasing beneficiary access to HCBS, these initiatives also have resulted in a patchwork of options, contributing to administrative complexity for states and confusion for individuals seeking services.

March, 2016: Evaluation of Cal MediConnect: Results of Focus Groups with Beneficiaries

Carrie Graham, Elaine Kurtovich, Holly Stewart, Marian Liu, Karla Tlatelpa, and Alice Wong

Researchers at the University of California worked with a stakeholder advisory group during a 6-month planning period to design an evaluation of Cal MediConnect, California‘s dual financial alignment demonstration. It was decided that the evaluation should begin by incorporating the experiences and voices of beneficiaries who had transitioned to Cal MediConnect or opted out.

March, 2016: Measuring Quality in Home and Community-Based Services: Selected Inventory of Consumer and Caregiver Survey Questions Related to the National Quality Forum HCBS Domains

H. Stephen Kaye

In this report, survey questions relevant to the National Quality Forum (NQF) domains of home and community-based services (HCBS) quality are listed and classified according to the NQF domains and the question topics within domains.  The report will be revised once the NQF HCBS quality domains are finalized, which is expected to occur by September 2016.  Included items are limited to surveys of consumers, family members, and caregivers.

February, 2016: Disparities in Service Use and Expenditures for People with Intellectual and Developmental Disabilities in California in 2005 and 2013

Charlene Harrington and Taewoon Kang

This study examined service use and expenditures for people with intellectual and developmental disabilities (IDD) living at home and in the community in California in 2005 and 2013. The number of people assessed for IDD services increased, along with the percentage of individuals who did not receive any services between 2005 and 2013. Controlling for client needs, children age 3-21 were less likely than other age groups to receive any services using logistic regressions. All racial and ethnic minority groups were less likely to receive any services than were white populations.

2015

November, 2015: Predicting State Investment in Medicaid Home- and Community-Based Services, 2000 – 2011

Nancy A. Miller and Adele Kirk

Although state use of Medicaid home- and community-based services (HCBS) to provide long-term services and supports to older adults and individuals with physical disabilities continues to increase, progress is uneven across states. We used generalized linear models to examine state factors associated with increased allocation of Medicaid dollars to HCBS for the period 2000 to 2011. We observed enhanced growth in states that began the period with limited investment in HCBS, as reflected in significant year trends among these states.

November, 2015: Medicaid Home and Community-Based Services Programs: 2012 Data Update

Terence Ng, Charlene Harrington, MaryBeth Musumeci, and Erica L. Reaves

As states continue to implement various aspects of the Affordable Care Act (ACA), developing and expanding home and community-based alternatives to institutional care remains a priority for many state Medicaid programs. This report summarizes the key national trends to emerge from the latest (2012) participant and expenditure data for the three main Medicaid HCBS programs, discusses the provision of Medicaid HCBS through § 1115 demonstration waivers and highlights findings from a 2014 survey of Medicaid HCBS participant eligibility, enrollment, and provider reimbursement policies.

August, 2015: An Independent Evaluation of the Integrated Care Program. Final Report: Findings through the Third Year (FY14)

Tamar Heller, Randall Owen, Dale Mitchell, Yochai Eisenberg, Coady Wing, Anne Bowers, Caitlin Crabb, Kiyoshi Yamaki, Chris Keys, Lindsey Back, Hailee Gibbons, Mandy Schmidt, and Judah Viola

Over the past several years, the State of Illinois has been implementing and planning several programs to move Medicaid and Medicare recipients into systems of care coordination. The original, mandatory Medicaid managed care program (MMC) in Illinois is known as the Integrated Care Program (ICP) and began on May 1, 2011 with the goal of improving the quality of care and services that the Medicaid population receives, along with saving the State money on Medicaid expenditures (estimated at $200 million over the first 5 years).

January, 2015: Long-Term Services and Supports in the Community: Toward a Research Agenda

H. Stephen Kaye and Charlene Harrington

Researchers, policy experts, and advocates participating in an invitational conference discussed research needed to address pressing policy issues in long-term services and supports (LTSS). Future research on need for LTSS should focus on projections of need, geographic variations, equity, and unmet needs of consumers and caregivers. Research on access to home- and community-based services (HCBS) should address progress in rebalancing LTSS in favor of HCBS, cost-containment strategies, the shift to managed LTSS, and the performance of managed care organizations.

2014

November, 2014: State Chart Book on Wages for Personal Care Aides, 2003-2013

Paraprofessional Healthcare Institute (PHI)

Provides a state-by-state look at trends in wages for personal care aides, a key job title within the direct-care workforce. Prepared as a resource guide on wages for advocates and policymakers concerned with the direct-care workforce, the chart book underscores the problem of poverty-level wages for PCAs, a factor that contributes to workforce instability for this high-demand workforce. The report finds that the national median wage for PCAs was $9.67 an hour in 2013 -- which is five percent lower than the median inflation-adjusted wage in 2003.

October, 2014: Medicaid Home and Community-Based Services: How Consumer Access is Restricted by State Policies

Terence Ng, Julie Stone, and Charlene Harrington

State Medicaid programs have expanded home and community-based services (HCBS). This article compares trends and variations in state policies for Medicaid HCBS programs in 2005 and 2010. State limitations on financial eligibility criteria and service benefits have remained stable. Although the use of consumer direction, independent providers, and family care providers has increased, some states do not have these options. The increased adoption of state cost control policies have led to large increases in persons on waiver wait lists.

October, 2014: Toward a Model Long-Term Services and Supports System: State Policy Elements

H. Stephen Kaye

In response to a new Federal initiative to improve the U.S. long-term services and supports (LTSS) system, this commentary discusses an array of policies and practices that could potentially improve LTSS provision by shifting from institutional to community-based services, increasing equity across populations, offering consumers more choice and control, improving conditions for workers and caregivers, and promoting improved consumer-level outcomes.

August, 2014: Conceptual Framework for Quality and Outcome Measurement in Long-Term Services and Supports

Community Living Policy Center (CLPC)

Several ongoing efforts address the problem of measuring quality in home- and community-based services (HCBS), but there is no consensus as to what aspects of HCBS are essential to improve quality, compare service delivery models, settings, or providers, or ensure equity in service provision. In this brief, we propose a conceptual framework for quality and outcome measurement in long-term services and supports.

June, 2014: Olmstead's Role in Community Integration

MaryBeth Musumeci and Henry Claypool

June 2014 marked the 15th anniversary of the United States Supreme Court’s landmark civil rights decision in Olmstead v. L.C., finding that the unjustified institutionalization of people with disabilities is illegal discrimination. While many cases are resolved without involving the courts, during the last 15 years, the lower courts have had the opportunity to apply Olmstead in a number of contexts, resulting in decisions furthering community integration for people with disabilities.

April, 2014: Immigration Reform: Key Issues for People with Disabilities and Older Adults

Joe Caldwell

On June 27, 2013, the Senate passed a comprehensive immigration reform bill with strong bipartisan support: The Border Security, Economic Opportunity, and Immigration Modernization Act of 2013 (S.744). In the House, leadership has outlined principles for reform and considered several piecemeal bills in relevant committees. However, it remains uncertain whether legislation will move forward in this Congress and, if so, what path it may take.

March, 2014: Beyond the CLASS Act: The Future of Long-Term Care Financing Reform

Joe Caldwell and Howard Bedlin

The story of the rise, passage, and repeal of the Community Living Assistance Services and Supports (CLASS) Act has, to a large extent, neglected political context. Most accounts have focused on perceived flaws in the design of the program, such as its voluntary nature or absence of underwriting.

January, 2014: State Olmstead Litigation and the Affordable Care Act

Terence Ng, Alice Wong, and Charlene Harrington

Over the past two decades, major efforts have been undertaken to expand access to Medicaid home and community-based services (HCBS) for the elderly and disabled. Despite this, many states still have long waiting lists for HCBS. Using data collected, this study examined the trends in Olmstead and related cases against states between 1999 and 2011. The findings show there were 131 cases filed during the period, and 90 cases were resolved through court rulings and settlements.