“Research shows that, when given the opportunity, people with serious mental health conditions are quite capable of identifying non-traditional goods and services that support their well-being and independence.””
Does self-direction work?
Some policymakers, providers, and family members are skeptical that people with serious mental health conditions are capable of self-direction. These perceptions get in the way of not only the broader adoption of self-direction but also the rights of individuals to pursue meaningful, independent lives in the community.
Below, we share findings from independent, nonpartisan evaluations of self-direction efforts—including our own evaluation, the Demonstration of Self-Direction in Behavioral Health—to help dispel these misconceptions.
Major Evaluations of Self-Direction
Evaluation of the Demonstration of Self-Direction in Behavioral Health
Funded by the Robert Wood Johnson Foundation and the New York State Health Foundation, with support from the Substance Abuse and Mental Health Services Administration, the Demonstration of Self-Direction in Behavioral Health project is exploring the impacts of mental health self-direction in the United States. HSRI is evaluating implementation activities and outcomes as demonstration projects roll out across six states: Florida, Michigan, New York, Pennsylvania, Texas, and Utah.
The project is ongoing, but early findings reveal that participants are quite capable of identifying non-traditional goods and services that support their well-being and independence. Our recent study of Florida Self-Directed Care showed that many self-direction participants used their monthly budgets to first meet their basic material needs, including dental and vision care and short-term housing assistance. With those basic needs taken care of, they were better positioned to focus on setting and achieving personal recovery goals.
Evaluation of the Personal Health Budget Pilot Programme
In England’s self-direction pilots, evaluators found that people who had more choice and control over a personal budget also had better outcomes and lower inpatient and outpatient service costs. In particular, quality-of-life outcomes were better in program models that gave participants greater flexibility in what they could purchase and promoted their informed, active engagement.
Evaluation of
Cash & Counseling
The Cash & Counseling national program introduced or expanded participant-directed personal assistance services for frail older adults with disabilities and other people with disabilities in the Medicaid programs of 15 states. The program was a joint venture between the Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services.
Program participants managed a monthly budget based on what Medicaid would have paid a home care agency to assist them with personal assistance services, like bathing, dressing, and getting out of bed. The results of this large, controlled experiment were overwhelmingly positive. People who self-directed had fewer unmet needs, the same or better health outcomes, and higher satisfaction with their everyday lives than people who did not.
Published Research on Self-Direction
(descending order by date)
Randomized controlled trial of self-directed care for medically uninsured adults with serious mental illness
By Judith A. Cook, Jessica A. Jonikas, Jane K. Burke-Miller, Marie Hamilton, Carl Falconer, Michael Blessing, Frances Aranda, Gretchen Johns, and Christine Cauffield
Published online in Psychiatric Services, March 2023
This randomized controlled trial examined Self-Directed Care’s impact on outcomes, service costs, and user satisfaction among medically uninsured, low-income people diagnosed with serious mental health conditions. Compared with non-participants, SDC participants reported greater improvement in competence, met and unmet needs, autonomy support, recovery, and employment. No differences were found between the two groups in total per person service costs or costs for individual services. The most frequent nontraditional purchases were for medical, dental, and vision services (33%) and health and wellness supports (33%). Satisfaction with SDC services was high.
Self‑direction and The Social Determinants of Health
By Bevin Croft
Published in the Community Mental Health Journal, March 2020
Social determinants of health—defined by the World Health Organization as “the social factors and physical conditions of the environment in which people are born, live, learn, play, work, and age”—are increasingly discussed as having relevance in community mental health service systems. This brief report describes how self-direction—an approach in which people with serious mental health conditions choose the services and supports that work best for them to support their recovery—is a tool that may directly and uniquely promote the social determinants of health by expanding the bounds of traditional service delivery to address the needs of the whole person.
Service Utilization Before and After Self-Direction: A Quasi-experimental Difference-in-Differences Analysis of Utah’s Mental Health Access to Recovery Program
By Bevin Croft, Kristin Battis, Nilufer Isvan, and Kevin Mahoney
Published online in the journal Administration and Policy in Mental Health and Mental Health Services Research, August 2019
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. Difference-in-differences were examined using four regression models predicting changes in four service utilization categories. Self-directing participants had greater increases in outpatient and rehabilitation services than the non-self-directing group, controlling for relevant covariates. There were no between-group differences in residential and emergency service utilization.
Read a short summary of the findings
Service costs and mental health self-direction: Findings from consumer recovery investment fund self-directed care
By Bevin Croft, Kristin Battis, Laysha Ostrow, and Mark Salzer
Published online in the Psychiatric Rehabilitation Journal, May 2019
This study examined mental health service utilization and cost before and after participating in self-direction. The study involved Medicaid claims data for 45 self-directing participants over a 3-year period. Bivariate statistics were computed to identify meaningful pre-post differences in service utilization and standardized monthly costs.
Median standardized monthly mental health clinical outpatient costs were significantly lower after self-direction participation compared to before. Participants spent a mean of $182 per month in flexible funds to purchase a range of nonclinical goods and services to work toward recovery goals. Total service costs - even when including the flexible funds - did not differ significantly before and after program participation.
Read a short summary of the findings
Self-Determination and Choice in Mental Health: Qualitative Insights From a Study of Self-Directed Care
By Elizabeth Thomas, Yaara Zisman-Ilani, & Mark Salzer
Published online in Psychiatric Services, May 2019
Although quantitative research has begun to establish an evidence base for self-directed care (SDC) in mental health, less is known about how people with serious mental illness experience this care, especially in relation to having choices and making decisions. The purpose of this qualitative study was to examine the extent to which people with serious mental illness experienced a greater degree of choice as a result of their participation in an SDC intervention and how their experience of having choices was related to the fulfillment of three psychological needs (competence, autonomy, and relatedness) identified by self-determination theory.
Special Issue on self-direction in the Journal of Gerontological Social Work
March 2019
The articles in this Special Issue of the Journal of Gerontological Social Work present the results of work that has been undertaken to further understand self-direction ten years after the landmark Cash & Counseling Demonstration and Evaluation. These include: findings on what needs remain unmet even when people can manage their own budgets; participants’ and their family caregivers’ views on what support broker activities really help (or hurt); and the results of a project involving the Council of Social Work Education and nine schools of social work to develop modules for training future social workers on person-centered planning and participant direction. For the next few months, these articles will be available without a journal subscription.
Mental Health Self-Directed Care Financing: Efficacy in Improving Outcomes and Controlling Costs for Adults With Serious Mental Illness
By Judith Cook, Samuel Shore, Jane Burke-Miller, Jessica Jonikas, Marie Hamilton, Brandy Ruckdeschel, Walter Norris, Anna Frost Markowitz, Matthew Ferrara & Dulal Bhaumik
Published online in Psychiatric Services, January 2019
This study examined the effects of self-direction on outcomes, service costs, and user satisfaction among adults with serious mental illness. Researchers compared 114 public mental health system clients who were self-directing with 102 clients who were receiving services as usual. Self-directed care participants had significantly greater improvement over time in recovery, self-esteem, coping mastery, autonomy support, somatic symptoms, employment, and education.
Money matters: participants’ purchasing experiences in a budget authority model of self-directed care
By Jennifer Spaulding-Givens, Shannon Hughes & Jeffrey R. Lacasse
Published online in Social Work in Mental Health, December 2018
This qualitative study reports findings from interviews with 18 SDC participants on the factors that influence their purchasing decisions, the benefits derived from SDC purchases, and perceived barriers experienced in making desired purchases. Findings reveal the extent to which money matters in mental health recovery and suggest that individualized budgeting and purchasing contribute to SDC participants’ mental wellness and stability, enhance their control over service choices, and, most notably, provide some material relief in ongoing struggles with chronic poverty. Findings also highlight the importance of flexible spending guidelines and streamlined approval processes; overly proscriptive policies may undermine participants’ self-determination.
Housing and Employment Outcomes for Mental Health Self-Direction Participants
By Bevin Croft, Nilufer Isvan, Susan L. Parish, and Kevin J. Mahoney
Published online in Psychiatric Services, May 2018
Looking at data from the nation’s largest and longest-standing self-direction effort, FloridaSDC, researchers compared outcomes of housing independence and employment between individuals who participated in self-direction and those who did not. The researchers analyzed deidentified data on 271 self-directing participants across two FloridaSDC programs and compared this data to a matched group (composed of individuals with similar characteristics) of 1,099 nonparticipants. Compared with nonparticipants, self-directing participants were more likely to improve, or maintain at high levels, engagement in paid work and independent housing.
Read a short summary of the findings
Mental health leadership perspectives on self-direction
By Bevin Croft, Lori Simon-Rusinowitz, Dawn M. Loughlin, and Kevin J. Mahoney
Published in Social Work in Mental Health, December 2017
Using a descriptive cross-sectional study, the researchers used a survey (n = 46) and interviews (n = 17) to gauge mental health program directors' expectations for self-direction and to identify barriers and facilitators for adoption and implementation. Respondents showed strong interest in self-direction and endorsed its potential to support well-being and improve mental health service quality. Respondents also voiced concerns, including competing agency priorities, provider resistance, and administrative challenges.
Read a short summary of the findings
Exploring Personal Medicine as Part of Self-Directed Care: Expanding Perspectives on Medical Necessity
By Gretchen Snethen, Andrea Bilger, Erme C. Maula, and Mark S. Salzer
Published in Psychiatric Services, April 2016
The authors examined the types of goods and services that individuals with serious mental illness request in a self-directed care intervention, analyzing the requests and purchases of 60 participants who had been randomly assigned to an intervention. They concluded that self-directed care may be a service delivery option that allows consumers to access their own personal medicine and better address their needs.
Participants' Assessment of the Impact of Behavioral Health Self-Direction on Recovery
By Bevin Croft, HSRI, and Susan Parish,
Published in the Community Mental Health Journal, February 2016
The authors analyzed the content of 30 in-depth interviews with individuals from two self-direction programs, and found a positive relationship between self-direction and recovery. They found that self-directing participants first sought to meet basic needs for food, clothing, and shelter with their support funds - as the initial first step in their recovery. The authors also found that participants' gains in one area led to achievement in others, fostered by a growing sense of independence, self-esteem, and self-confidence.
Self-Directed Care: Participants' Service Utilization and Outcomes
By Jennifer Spaulding-Givens and Jeffrey Lacasse
Published in Psychiatric Rehabilitation Journal, March 2015
The authors examined the demographic characteristics, service utilization patterns, and outcomes of individuals enrolled in the Florida Self-Directed Care (FloridaSDC) program. They concluded that participants’ service purchases were rational given the poverty in which they live, and that their outcomes did not suffer when they controlled decisions regarding their service needs. The findings highlight the utility and value of the personalized budgeting and individualized planning components of SDC. The findings also point to the need for practitioners to implement innovative strategies to enhance participants’ employment readiness and supported employment opportunities.
The effectiveness of personal budgets for people with mental health problems: a systematic review
By Martin Webber, Samantha Treacy, Sarah Carr, Mike Clark, and Gillian Parker
Published in the Journal of Mental Health, May 2014
The authors reviewed 15 studies to examine the effectiveness of personal budgets for people with mental health problems. They found mostly positive outcomes in terms of choice and control, quality of life, service use and cost-effectiveness. However, they also point to methodological limitations that made their findings rather unreliable and insufficient, and they call for further studies to inform policy and practice for mental health service users.
Economic Grand Rounds: A Self-Directed Care Model for Mental Health Recovery
By Judith A. Cook, Carolyn Russell, Dennis D. Grey, Jessica A. Jonikas
Published in Psychiatric Services, June 2008
The authors examined data on 106 individuals in self-directed care programs and found that, compared to the year prior to their enrollment, participants spent significantly less time in psychiatric inpatient and criminal justice settings in the year after their enrollment, and showed considerably better functioning. They also found that of approximately $58,000 in participants' expenditures over 19 months, 47% was spent on traditional psychiatric services, 13% on service substitutions for traditional care, 29% on tangible goods, 8% on uncovered medical care, and 3% on transportation.
Does Mental Illness Affect Consumer Direction of Community-Based Care? Lessons From the Arkansas Cash and Counseling Program
By Ce Shen, Michael A. Smyer, Kevin J. Mahoney, Dawn M. Loughlin, Lori Simon-Rusinowitz, and Ellen K. Mahoney
Published in The Gerontologist, February 2008
The authors compared and contrasted the experience of elderly participants in the Cash and Counseling program with and without mental health diagnoses. They found that, from the perspective of consumers, the program works well for participants with mental health diagnoses: showing positive outcomes with respect to satisfaction with care arrangements and the paid caregiver's reliability and schedule, unmet needs, and satisfaction with the relationship with paid caregivers.
Consumer-Directed Care for Beneficiaries With Mental Illness: Lessons From New Jersey's Cash and Counseling Program
By Ce Shen, Michael Smyer, Kevin J. Mahoney, Lori Simon-Rusinowit, Judith Shinogle, Julie Norstrand, Ellen Mahoney, Carole Schauer, and Paolo del Vecchio
Published in Psychiatric Services, November 2008
This study examined nonelderly Medicaid beneficiaries with a diagnosis of mental illness, comparing and contrasting the experiences of those in New Jersey's Cash and Counseling program with those receiving services provided by an agency. Based on an examination of outcome measures, the authors found that, from the perspective of consumers, self-direction is appropriate for participants with a mental health diagnosis. They also found that self-directing participants in the study were at least as safe as those in agency-directed care.
Other Materials (Reports, Essays, Webinars)
Research Brief: Participant-Reported Outcomes - Impacts of a Utah Program for Mental Health Self-Direction
The researchers examine survey responses from 102 people who participated in Utah’s Mental Health Access to Recovery (MHATR) program between 2014 and 2016 - both before and after they participated in the program. They found that program participants reported significantly decreased mental health problems and increased overall wellbeing after having self-directed their recovery funds.
Issue Briefs: New York Self-Directed care pilot
These twin briefs describe early findings from an evaluation of New York’s Self-Directed Care pilot. The first brief describes the implementation of the program, which began in 2017 and is being piloted as part of the State’s Medicaid 1115 Waiver Demonstration. It provides information on the project timeline, participant characteristics, goals and purchases, and implementation lessons from the early days of the program. The second brief covers preliminary findings from the outcomes evaluation, which examined participant-reported quality of life outcomes before and after self-direction.
2019 Self-Directed Care Calendar
The Temple Collaborative on Community Inclusion produced this 2019 calendar featuring actual resource requests from self-direction participants to give others inspiration in creating their own personalized plans.
WeBinar: Promoting Recovery through Self Direction: Strategies and Lessons from New York State
Featuring:
Bevin Croft, PhD., MPP, Research Associate, Human Services Research Institute (HSRI)
Briana Gilmore, MSc., Director of Planning and Recovery Practice, Community Access
Keith Aguiar, Self-Direction Pilot Program Manager, Community Access
Oyeama (“Zisa”) Okpalor, NY Program Participant
Recorded June 26, 2018
Within the public mental health system, self-direction supports people in developing and directing their own services to help reach their own goals for recovery and independence. New York State’s Office of Mental Health has begun implementing a self-direction pilot that pairs each person’s own recovery plan with a flexible budget to purchase goods and services relevant to their goals. This webinar: 1) Provides an overview of self-direction models and outcomes research to assist people with serious mental illnesses; 2) Describes how New York’s model was developed and adopted during a shifting Medicaid managed care environment, including successful advocacy strategies; 3) Discusses operational concerns such as provider training and outreach during New York’s first pilot year; and 4) Reports on early participant outcomes related to the pilot.
Webinar: Self-Direction through Personalized Budgeting
Featuring Bevin Croft, Julie Schnepp, and Pam Werner
Recorded February 27, 2018
This webinar begins with an introduction to self-direction, including a brief history and the places that are testing it out. There are three perspectives shared:
Bevin Croft, MPP, PhD – Research Associate at the Human Services Research Institute. The research that has been done, preliminary results here and in England. Future directions in research and funding for research.
Julie Schnepp – has participated in the Consumer Recovery Investment Fund Self Directed Care Program for the last seven years. During this time she has become a Certified Peer Specialist with additional training in working with youth and young adults, older adults, forensics, LGBTQA+ and more.
Pam Werner – Manager with the Michigan Department of Health and Human Services in the Office of Recovery Oriented Systems of Care.
The Emergence of Mental Health Self-Direction: An International Learning Exchange
By Bevin Croft, HSRI, Kaipeng Wang, Benjamin Cichocki, HSRI, Anne Weaver, and Kevin Mahoney
Published in Psychiatric Services Open Forum, January 2017
This Open Forum essay describes an an international learning exchange meeting, held in September 2015, in which experts in self-direction and mental health from seven nations convened to share best practices, discuss challenges, and lay the groundwork for a learning community to support the continued development of self-direction. Meeting participants identified three themes that represent next steps toward ensuring that the promise of self-direction is realized. First, self-direction involves a culture shift toward value-based systems change. Second, people with lived experience must be involved and supported at every level, including direct support, leadership, and oversight. Third, stakeholder communication about self-direction’s impact is critical.
An Environmental Scan of Self-Direction in Behavioral Health: Summary of Major Findings
By Bevin Croft, HSRI, Lori Simon-Rusinowitz, Dawn Loughlin, and Kevin Mahoney
The authors conducted an environmental scan to understand the facilitators and barriers to self-direction in behavioral health (that is, mental health and substance use disorders) and to develop parameters for a large-scale demonstration and evaluation project.
See also: "Environmental Scan of Self-Direction in Behavioral Health: A Review of the Literature" and "Looking at Self-Directed Services for People with Serious Mental Illness or Substance-Use Issues"
Feasibility of Expanding Self-Directed Services to People with Serious Mental Illness
By Eric Slade
Prepared Report for the Office of Disability, Aging and Long-Term Care Policy, Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services
This report provides a review of available information on self-directed care (SDC) programs in mental health care settings (as of 2011, the year of publication) and discusses potential policy implications of large-scale implementation of SDC programs serving persons with serious mental illness.
Self-directed care for adults with serious mental illness: the barriers to progress
By Vidhya Alakeson
Published in Psychiatric Services Open Forum, July 2008
This Open Forum essay identifies three main barriers that explain the limited adoption of self-direction as of 2008: the absence of a strong evidence base to support the effectiveness of self-directed care for serious mental illness, uncertainty over the appropriate scope of self-directed care, and the absence of a sustainable source of funding. The author states that a large-scale evaluation could help to address the first two barriers, and that the introduction of the 1915(i) provision of the Social Security Act in 2007 could partly address the funding barrier.