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Caregiver Resources

Reports & Studies

2014

Regulatory Review of Adult Day Services: Final Report, 2014 Edition

DEC 2014 | Office of The Assistant Secretary for Planning and Evaluation (ASPE) | FULL REPORT | CALIFORNIA

Adult day services (ADS)--a non-residential service provided outside an individual's home for less than a full day--provides direct care to older adults and younger adults with physical disabilities. These services also meet caregivers' need for respite in order to work, fulfill other obligations, and recover from the demands of continuous caregiving.

Many caregivers who use ADS are providing care to family members with dementia who need constant supervision to ensure their safety. By providing respite to unpaid caregivers, ADS can potentially delay or prevent nursing home placement.

This report provides information about each state's approach to regulating this key community service.

 

Unfinished Business: Designing Appeals Procedures in the Dual-Eligible Demonstrations

DEC 2014 | Justice in Aging | ISSUE BRIEF

Under the Affordable Care Act, a number of states are participating in financial alignment demonstrations that combine the delivery of Medicare and Medicaid services for dual eligible beneficiaries. Even though financial alignment demonstrations are already “live” in five states with tens of thousands receiving services through demonstration plans, the appeal systems for the demonstrations in all participating states are still a work in progress, making it difficult for beneficiaries to navigate.

This tool, Unfinished Business, is an update on NSCLC’s September 2013 analysis of appeals processes in demonstrations in six states. Unfinished Business helps stakeholders focus their advocacy about appeals on areas where a consumer voice can have the most potential to affect programs, by highlighting the many areas where appeal rights and procedures have not yet been fully developed.

Ten states are participating (CA, IL, MA, MI, NY, OH, SC, TX, VA and WA), with one more, Minnesota, pursuing a similar but alternate model.

 

Working in Concert: A How-To Guide to Reducing Unwarranted Variations in Care

NOV 25, 2014 | California Improvement Network / California HealthCare Foundation (CHCF) | REPORT

Patients should receive the appropriate level of care — no more and no less. But how is that sweet spot determined? This How-To Guide to Reducing Unwarranted Variations in Care, the result of the CIN's first action group, helps organizations get started.

 

Quality of Care: Signals of Change

NOV 6, 2014 | California HealthCare Foundation (CHCF) | REPORT

From birth to death, the quality of health care being delivered in California has improved on several important measures in recent years. But significant racial and ethnic disparities persist, particularly for infant and maternal mortality.

Published as part of CHCF's California Health Care Almanac, this report looks at the quality of care in California on a variety of measures, including childbirth, children's health, and management of patients with common chronic conditions. It also provides data on mental health care, patient safety, nursing homes, home health, and end-of-life care.

 

What's In A Notice? How Notices Of Action Protect Consumers in Medicaid Managed Long-Term Services and Supports

NOV 2014 | Justice in Aging | GUIDE

As Managed Long Term Services and Supports (MLTSS) rolls out nationwide, advocates on the ground have seen due process violations in appeals and notices of action. In this tool for advocates and consumers, NSCLC focuses on notice and appeal rights in MLTSS. NSCLC provides background information on notices of action, including an explanation of what type of Managed Care Organization (MCO) behavior constitutes an action that could give rise to due process violations.

This tool also provides advocates with the specific information that must be included in each notice of action to meet due process requirements, and outlines how continuation of services and aid-paid-pending plays out in the managed LTSS context.

 

State Transition Plans for New Medicaid HCBS Regulations: Four Tips for Consumer Advocates

OCT 2014 | Justice in Aging and National Disability Rights Network | FOUR TIPS FOR CONSUMER ADVOCATES

States now are beginning to release their transition plans to bring their Medicaid HCBS systems into compliance with the new federal regulations on community-based settings. It is essential that consumers and their representatives be prepared to evaluate those plans and advocate for improvements.

 

Adult Day Services: A Model of Person- and Family-Centered Care

OCT 2, 2014 | AARP | BLOG by Lynn Friss Feinberg

A recent study found that more than a quarter million participants attend an estimated 4,800 community-based adult day service (ADS) centers in the U.S. Although most participants are older people, more than one-third of ADS participants are younger than 65. Nearly one in three ADS participants has Alzheimer’s disease or another form of dementia.

 

Shared Decisionmaking

OCT 2014 | California Improvement Network / California HealthCare Foundation (CHCF) | REPORT

It is not always easy for providers and patients to make treatment decisions jointly. A new CIN partner report details effective strategies shared by the Gordon and Betty Moore Foundation, Humboldt-Del Norte IPA, and Sharp HealthCare.

 

Estate Recovery Under Medi-Cal

SEP 30, 2014 | California HealthCare Foundation (CHCF) | ISSUE BRIEF

California's Medi-Cal estate recovery program has received renewed attention from policymakers because of reports that some individuals newly eligible for Medi-Cal as expanded under the Affordable Care Act may not enroll for fear that their house and assets could later be seized. The purpose of this issue brief is to describe Medi-Cal estate recovery and to clarify who could be subject to it and under what circumstances.

 

Up Close: A Field Guide to Community-Based Palliative Care in California

SEP 2014 | California HealthCare Foundation (CHCF) | FIELD GUIDE

Health systems across the US are recognizing the importance of palliative care — specialized, interdisciplinary care that attends to the physical, psychological, emotional, and spiritual needs of people with serious illnesses and their family members. While inpatient palliative care programs have proliferated, community-based programs — those that offer services at a clinic, in a patient's residence, or over the phone — are far less prevalent, and those that do exist have developed in relative isolation.

In 2013 the California HealthCare Foundation (CHCF) launched the Palliative Care Action Community to promote collaboration among organizations working to strengthen or expand their community-based palliative care (CBPC) services. Participating provider teams represented diverse types of organizations, provided services in a variety of settings, and came with varying levels of CBPC experience. Despite these differences, the teams shared common approaches and challenges in program planning, operations, and evaluation.

 

Data Briefs Released for 2012 National Study of Long Term Care Providers (NSLTCP)

SEP 2014 | Centers for Disease Control and Prevention (CDC) | National Study of Long Term Care Providers (NSLTCP)

The Long-Term Care Statistics Branch released adult day services-specific state web tables, using data from the first wave of the National Study of Long-Term Care Providers (NSLTCP) conducted in 2012. NSLTCP is a new initiative by the National Center for Health Statistics (NCHS) to provide reliable, accurate, relevant and timely statistical information to support and inform long-term care services policy, research, and practice.

The main goals of NSLTCP are to: (1) estimate the supply and use of paid, regulated long-term care services providers; (2) estimate key policy-relevant characteristics and practices; (3) produce national and state-level estimates, where feasible; (4) compare estimates among sectors; and (5) monitor trends over time.

Data Brief No. 164: United States, 2012:
o Differences in Adult Day Services Center Participant Characteristics by Center Ownership
o State Web Tables

Data Brief No. 165: United States, 2012:
o Differences in Adult Day Services Center Characteristics by Center Ownership
o State Web Tables

Updated - National Study of Long-Term Care Providers Factsheet

Long-Term Care Services in the United States: 2013 Overview

2012 National Study of Long-Term Care Providers (NSLTCP) Survey Data

Long-Term Care Listserv Membership

 

Can Reality Match Rhetoric? Person Centered Service Planning in Managed Long-Term Services and Supports

AUG 2014 | Justice in Aging | POLICY ISSUES BRIEF

Person-centered planning is critical to the well-being of consumers of long-term services and supports. It works by identifying the strengths preferences, needs, and desired outcomes of the individual. In order for person-centeredness to be more than an empty slogan, it must be accompanied by substantive standards set forth in managed care organization (MCO) contract language. Some states have begun to include person-centered planning requirements in their contracts, but more work is needed before all states have a full framework.

This brief begins with a short description of service planning in the Medicaid managed care context. Next, it provides an analysis of what states are doing in their managed care contracts to ensure person-centered planning. Finally, the brief describes how the new federal home and community-based services (HCBS) rule will provide service planning protections for consumers that should be included in and built upon in MCO contracts.

 

Family Caregivers Providing Complex Chronic Care to People with Cognitive and Behavioral Health Conditions

AUG 19, 2014 | News Release from AARP and United Hospital Fund | REPORT

The United Hospital Fund and AARP Public Policy Institute issued a report with compelling new evidence that family caregivers who provide complex chronic care to people who also have cognitive and behavioral health conditions face particularly demanding challenges, including high levels of self-reported depression. As a result, a majority of them (61 percent) reported feeling stress “sometimes to always,” between their caregiving responsibilities and trying to meet other work or family obligations.

 

Physician Participation in Medi-Cal: Ready for the Enrollment Boom?

AUG 5, 2014 | California HealthCare Foundation (CHCF) | REPORT

By the end of 2015, the Affordable Care Act will add more than two million enrollees to Medi-Cal, the nation's largest state Medicaid program. This estimate has heightened concerns about whether there are enough doctors to care for them all. Californians are likely to have difficulty accessing health care through Medi-Cal unless the number of participating physicians grows or California finds other ways to deliver services. The percentage of physicians treating any Medi-Cal patients increased between 2011 and 2013 from 64% to 69%, according to a new report prepared by researchers at the University of California, San Francisco. Yet their findings suggest that Medi-Cal enrollees face significant challenges due to statewide variations in physician availability.

 

Here's Looking At You: How Personal Health Information is Being Tracked and Used

JUL 15, 2014 | California HealthCare Foundation (CHCF) | REPORT | INFOGRAPHIC

Last month, in a US Supreme Court decision barring the warrantless searches of cellphones, Chief Justice John Roberts declared that a cellphone "contains the sum of an individual's private life" and can reveal more information than the search of an entire house.

Every day, in the course of using cell phones, credit cards, search engines, websites, and an array of medical devices, we leave behind digital footprints. These data flows, which often occur without our knowledge, have the potential to paint an individual health profile, as well as describe whole communities based on location, health conditions, or other factors.

 

Health Care Costs 101: Slow Growth Persists

JUL 8, 2014 | California HealthCare Foundation (CHCF) | REPORT | INFOGRAPHIC | ALL ALMANAC REPORTS

Even with the slow growth in national health spending in recent years, the US continued to spend a greater percentage of its wealth on health care than any other industrialized nation, according to the latest edition of Health Care Costs 101. In 2012, the US spent an average of $8,915 per person on health care, reaching a total of $2.8 trillion. An interactive graphic shows the change in health care spending by payer from 1960 to 2012.

 

ACA 411: An Interactive Tool for Tracking Health Reform in California

JUN 17, 2014 | California HealthCare Foundation (CHCF) | ACA 411 DATA TOOL

The California HealthCare Foundation (CHCF) has created an interactive data tool to keep tabs on the trends that emerge as California continues to implement the Affordable Care Act (ACA) legislation. The tool tracks health care reform's effects in three areas: insurance coverage, access to health care services, and affordability.

 

2014 Scorecard: California's Long-Term Services and Supports for Older Adults, People with Disabilities, and Family Caregivers

JUN 17, 2014 | AARP and SCAN Foundation and The Commonwealth Fund | SCORECARD | POLICY BRIEF | CALIFORNIA'S RESULTS

The 2nd State Scorecard on Long-Term Services and Supports shows California ranked 9th overall. While California ranks higher than most states, much work remains to be done to improve affordability, quality, and coordination of services within the state’s system of care to ensure that older adults and people with disabilities can access needed services to support independence and quality of life. The Scorecard is the first step in initiating a conversation about system performance, areas for opportunity, and the importance of continued system transformation in California.

Visitors to the Long-Term Services and Supports website can interact with the data by drilling into performance indicators for a single state, comparing data across states, or using a map to quickly compare overall state rankings.

 

2014 Alzheimer's Facts & Figures Report

MAR 19, 2014 | Alzheimer's Association | 2014 Alzheimer’s Disease Facts and Figures

2014 Alzheimer’s Disease Facts and Figures is a statistical resource for U.S. data related to Alzheimer’s disease, the most common type of dementia, as well as other dementias. Background and context for interpretation of the data are contained in the Overview. This information includes definitions of the various types of dementia and a summary of current knowledge about Alzheimer’s disease. Additional sections address prevalence, mortality and morbidity, caregiving and use and costs of care and services. The Special Report discusses women and Alzheimer’s disease.

 

California and its Counties Under the ACA: A Leadership Framework

MAY 2014 | California HealthCare Foundation (CHCF) | REPORT

As California moves to carry out the federal Affordable Care Act (ACA), it is implementing major health program, policy, and fiscal changes that will once again transform the state-county partnership. As a prelude to state monitoring and oversight of these sweeping changes, this issue brief offers policymakers and stakeholders:

A leadership framework to assess potential impacts of shifting responsibility for health programs and services between the state and local level.

Highlights of state policy and ACA implementation activities most likely to affect counties.

Application of the leadership framework to state and county roles in 2014.

Things to watch for in California counties as ACA implementation unfolds.

 

Long-Term Care in America: Expectations and Reality

MAY 19, 2014 | AP/NORC Center for Public Affairs Research | REPORT

Findings from the 2nd long-term care poll by AP-NORC have been released. These polls are being conducted in order to produce new and actionable data about the aging population to inform the national dialogue surrounding long-term care issues.

 

Just Like Home: An Advocate's Guide to Consumer Rights in Medicaid HCBS

MAY 2014 | Source: Justice in Aging | GUIDE

New federal Medicaid rules, for the first time, set standards to ensure that Medicaid-funded home and community-based services (HCBS) are provided in settings that are non-institutional in nature. These standards, which took effect in March 2014, apply to residential settings, such as houses, apartments, and residential care facilities like assisted living facilities. The standards also apply to non-residential settings, such as adult day health care programs.

 

Monitoring Access: Measures to Ensure Medi-Cal Enrollees Get the Care They Need

MAY 2014 | California Healthcare Foundation (CHCF) | REPORT

This report offers a framework and a targeted set of measures for monitoring access to ambulatory care for individuals enrolled in the Medi-Cal program. It is intended as an actionable starting point for elected leaders, state and federal program officials, and other stakeholders, to help them monitor changes in access to care over time, to identify disparities in access to care across subgroups or geographic regions, and to compare access between Medi-Cal enrollees and other insured populations in California and nationally.

 

In Transition: Seniors and Persons with Disabilities Reflect on Their Move to Medi-Cal Managed Care

APR 23, 2014 | California HealthCare Foundation (CHCF) | REPORT

Researchers from the University of California, Berkeley, present findings from a survey of more than 1,500 SPD Medi-Cal enrollees who made the transition to Medi-Cal Managed Care. The report offers suggestions for improving transitions to managed care involving populations with complex needs, including those dually eligible for Medicare and Medicaid, and examples of actions taken by DHCS in response to the study's findings.

 

America's Long-Term Care Crisis: Challenges in Financing and Delivery

APR 2014 | Bipartisan Policy Center (BPC) | REPORT

America's Long-Term Care Crisis: BPC Launches Initiative to Find a Politically and Fiscally Viable Path Forward to Improve the Financing and Delivery of Long-Term Care

This report sets the stage for BPC’s recommendations by identifying the major challenges and key questions in the financing and delivery of LTSS for both seniors and individuals under age 65.

 

Genworth 2014 Cost of Care Study

MAR 25, 2014 | Genworth | EXECUTIVE SUMMARY | FULL REPORT

Over the past 11 years, Genworth has been able to recognize and identify trends across the long term care services landscape. The 2014 Genworth Cost of Care study looked at Homemaker Services, Home Health Aide Services, Adult Day Health Care (ADC), Assisted Living Facility (ALF) and Nursing Home Care.

Among the key findings for Adult Day Health Care (ADC): National Median Daily Rate: $65 | Increase Over 2013: 0% | Five Year Annual Growth: 3.4%*.

*Percentage increase represents the compound annual growth rate for surveys conducted from 2009 to 2014.

 

Daily Stressors and Adult Day Service Use by Family Caregivers: Effects on Depressive Symptoms, Positive Mood, and Dehydroepiandrosterone-Sulfate

FEB 3, 2014 | The American Journal of Geriatric Psychiatry | ABSTRACT by Steven H. Zarit, PhD, et al

This study examines effects of daily use of adult day service (ADS) programs by caregivers of individuals with dementia (IWD) on a salivary biomarker of stress reactivity, dehydroepiandrosterone-sulfate (DHEA-S), and whether these effects on DHEA-S are associated with daily variability in positive mood and depressive symptoms.

 

Long-Term Care: What Are The Issues?

FEB 2014 | Robert Wood Johnson Foundation | ISSUE BRIEF

The demand for long-term care services will explode as the population ages and more people live longer with chronic conditions. Who will pay for these services and how will they be delivered?

 

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