Self-Direction of Home and Community-Based Services in the Time of COVID-19.

During the COVID-19 pandemic, nursing homes and assisted living facilities have accounted for over 20% of all infections, adult day care and other congregate sites have closed, and traditional home care agencies are facing staff shortages. In this environment, self-direction of home and community-based services, where the participant can hire their own staff and manage a budget that can be used for a broad range of goods and services including home modifications and assistive devices, is seen as a promising intervention. Using self-direction participants can minimize the number of people who enter their homes and pay close family and friends who were already providing many hours of informal care, and now may be unemployed.

Service Utilization Before and After Self-Direction: A Quasi-experimental Difference-in-Differences Analysis of Utah's Mental Health Access to Recovery Program.

Mental health self-direction involves participant control of an individualized budget to support recovery and wellness goals. This quasi-experimental study examined whether self-direction is associated with changes in service utilization. The study involved 2 years of administrative data for 94 self-directing participants and a matched comparison group of 529 non-participants with similar observed characteristics.

Preparedness of representatives for people with dementia in a self-directed program.

Representatives enact their role as decision-making partners across the intersection of participant direction (PD) and dementia care. Self-rated preparedness for key dimensions of the role endorsed by a panel of experts in PD and dementia was assessed by telephone survey of 30 representatives of persons with dementia in a PD program. The sample (daughters 60%; Black 50%; rural 70%) was diverse in length of time in the role and additional responsibilities.

"I'm just trying to cope for both of us": Challenges and supports of family caregivers in participant-directed programs.

Recently, national attention has focused on the needs of family caregivers providing complex chronic care, noting the necessity to better understand the scope of challenges they encounter. Although a robust body of literature exists about the scope of family caregiving, little is known specifically about the experiences and perspectives of family caregivers who support participant directed (PD) participants, particularly across the caregiving trajectory. Therefore, the aim of this qualitative descriptive study was to describe what family caregivers of individuals with developmental disabilities, physical disabilities, aging, or chronic health conditions identify as the challenges they experience as complex, and their perceptions of the effectiveness and gaps in family support resources in PD.

Housing and Employment Outcomes for Mental Health Self-Direction Participants.

Objective: In self-direction, participants control individual budgets, allocating service dollars according to needs and preferences within program parameters to meet self-defined recovery goals. Mental health self-direction is associated with enhanced wellness and recovery outcomes at lower or similar cost than traditional service arrangements. This study compared outcomes of housing independence and employment between individuals who participated in self-direction and those who did not.

"It's Changed Everything": Voices of Veterans in the Veteran-Directed Home and Community Based Services Program.

The purpose of this study was to understand the value and impact of the Veteran-Directed Home and Community Based Services program (VD-HCBS) on Veterans' lives in their own voices. Focus groups and individual interviews by telephone were conducted to elicit participant perspectives on what was most meaningful, and what difference VD-HCBS made in their lives. Transcripts were analyzed using content analysis.

Unmet needs in self-directed HCBS programs.

Unmet need for long-term services and supports has been linked to a variety of harmful health outcomes. One suggested strategy for ameliorating unmet need is to give participants control of a budget and let them construct individualized plans. The evaluation of the Cash and Counseling controlled experiment (CCDE) documented a marked reduction in unmet need when compared to traditional agency-based solutions, but it also showed significant unmet needs remained.

The times they are a-changing: Self-directed long-term services and supports and gerontological social work.

The Partnerships for Person-Centered (PC) and Participant-Directed (PD) Long-Term Services and Supports (LTSS) Project (Partnerships Project) was a three-year effort funded by the New York Community Trust to develop and implement social work curriculum that would better prepare students for the changing practice demands of the aging and disability services network for self-directed LTSS (SD-LTSS). This article first describes the growth of SD-LTSS and the need for trained social workers on this service delivery model. The paper then describes the Partnerships Project that involved schools of social work along and aging and disability network organization partners in nine states.

The Cash and Counseling model of self-directed long-term care: Effectiveness with young adults with disabilities.

Background: Young adults with disabilities face numerous barriers to independence and achieving markers of adulthood. Qualitative evidence suggests that flexible, self-directed budgets for purchasing home and community-based services might help fill an identified service gap and help improve the transition to adulthood for this group.

Objective: Our aim was to evaluate the effectiveness of the Cash and Counseling model of self-directed budgets for young adults with long-term care disabilities by analyzing secondary data from the Cash and Counseling Demonstration and Evaluation randomized control trial.

Intraoperative Simulated Weightbearing Lateral Foot Imaging: The Clinical Utility and Ability to Predict Sagittal Plane Position of the First Ray in Lapidus Fusion.

The sagittal plane relationship of the first to second ray is a primary determinant of proper alignment in Lapidus midfoot fusion as assessed both clinically and on postoperative weightbearing lateral radiographs. The traditional approach to intraoperative fluoroscopic imaging allows for accurate assessment of fixation placement and intermetatarsal angle correction but only a crude evaluation of final sagittal plane alignment. Surgeons have used various methods in an attempt to load the foot during lateral imaging.

"It just took the pressure off": The voices of Veterans' family caregivers in a participant-directed program.

The Veteran-Directed Home and Community Based Services Program (VD-HCBS) operates using a participant-direction approach, allowing Veterans to self-direct services. Only a small body of literature has explored the impact of these programs on caregivers. This study aimed to explore the experiences of caregivers in VD-HCBS.

An Inventory of Publicly Funded Participant-Directed Long-Term Services and Supports Programs in the United States.

After a decade of changes in federal law, regulation, and policy designed to promote the growth of publicly funded participant-directed long-term services and supports (PD-LTSS) programs, the number of these programs has grown considerably. The National Resource Center for Participant-Directed Services (NRCPDS) at Boston College started developing an inventory of these programs in 2010-2011 to determine the number and characteristics of publicly funded PD- LTSS programs in the United States. The 2010-2011 NRCPDS inventory provides baseline data for future research efforts in gauging the growth and expansion of this service delivery model.

The Long-Term Effects of Participant Direction of Supports and Services for People With Disabilities.

Numerous studies have demonstrated the short-term effectiveness of the Cash and Counseling model option of participant-directed home and community-based personal care service programs for Medicaideligible recipients with disabilities requiring long-term care. However, long-term experiences with participant-directed services have yet to be examined for these individuals. We addressed this gap in the literature through participatory action research and qualitative content analysis.

Incidence and Clinical Significance of Heterotopic Ossification After Partial Ray Resection.

Heterotopic bone growth is a common finding after partial foot amputation that can predispose to recurrent wounds, osteomyelitis, and reamputation. Heterotopic ossification is the formation of excessive mature lamellar bone in the soft tissues adjacent to bone that is exacerbated by trauma or surgical intervention. The relevance of heterotopic ossification is dependent on its anatomic location.

Long-Term Experiences in Cash and Counseling for Young Adults with Intellectual Disabilities: Familial Programme Representative Descriptions.

Background: Our aim was to explore previously unknown long-term outcomes of self-directed personal care services for young adults with intellectual disabilities and limitations in activities of daily living.

Materials And Methods: The present authors utilized participatory action research and qualitative content analysis in interviewing 11 unpaid familial programme representatives of young adults with intellectual disabilities, ages 23-34, who were eligible for income-based Medicaid and enrolled five or more years in a Cash and Counseling-based programme of self-direction in the United States.

Results: Young adults are represented as receiving services and supports in a supportive and stable environment, with previously identified short-term programme benefits evident over the long-term.

Where are they now? Cash and Counseling successes and challenges over time.

The positive results of the Cash & Counseling Demonstration and Evaluation (CCDE) led to the funding of a replication project that included 12 more states in 2008. Since then, the political and economic environments have changed. The authors sought to investigate how well the three original and 12 replication CCDE programs are coping with current challenges, and how their experiences may inform the growth and sustainability of emerging participant-directed programs.

European long-term care programs: lessons for community living assistance services and supports?

Objective: To uncover lessons from abroad for Community Living Assistance Services and Supports (CLASS), a federally run voluntary public long-term care (LTC) insurance program created under the Accountable Care Act of 2010.

Data Sources: Program administrators and policy researchers from Austria, England, France, Germany, and the Netherlands.

Study Design: Qualitative methods focused on key parameters of cash for care: how programs set benefit levels; project expenditures; control administrative costs; regulate the use of benefits; and protect workers.

Expanding the consumer-directed workforce by attracting and retaining unaffiliated workers.

Unaffiliated workers are directly hired personal assistance workers who are not employed through an agency and are not family members or close friends. This article examines the working conditions of unaffiliated workers in a consumer-directed setting in comparison to agency workers and to other consumer-directed workers. Unaffiliated workers earned higher wages than their peers but were less satisfied with these wages and benefits than other directly hired workers.

Hiring relatives as caregivers in two states: developing an education and research agenda for policy makers.

Meeting the long-term care needs of the growing aging population is a priority policy issue in the United States. Yet, hiring relatives as caregivers remains a controversial policy issue. This two-state case study reports findings about views from policy experts regarding a policy option to hire family caregivers in home- and community-based long-term care programs.

Lessons from the Arkansas Cash and Counseling program: how the experiences of diverse older consumers and their caregivers address family policy concerns.

This paper addresses four family policy questions that policy makers often ask about consumer-directed services, examining issues such as quality, suitability, and fraud and abuse. Responses to these questions evolved from the experiences of diverse elder consumers and their caregivers who participated in IndependentChoices, the Arkansas site of the Cash and Counseling Demonstration and Evaluation (CCDE) program. Building on CCDE evaluation survey data, this analysis of in-home interviews with participants discussing their experiences of receiving, giving, and managing care demonstrates how the program allows consumers choices so they receive the services they want.

New state strategies to meet long-term care needs.

Consumer-directed long-term care service programs give participants the flexibility they want, while reducing unmet need for home and community-based services and supports. States' efforts to expand such programs under Medicaid, including those supported by federal Cash and Counseling demonstration and evaluation grants, are often hindered by challenges related to costs, staffing and organizational issues, new infrastructure requirements, and resistance from stakeholders. Yet states have developed a number of successful strategies for overcoming these challenges, even in financially trying times.

Social marketing principles enhance enrollment in the cash and counseling demonstration and evaluation.

Purpose Of The Study: Using focus group data, this article discusses the use of social marketing principles to enhance enrollment in the Cash and Counseling Demonstration and Evaluation (CCDE).

Design And Methods: Focus groups were conducted in person and by conference call in two CCDE states, Arkansas and Florida. In Florida, Department of Elder Affairs and Developmental Services Program (DS) staff participated in seven focus groups.