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Unformatted text preview: Self-Directed Care Implementation Manual: A Comprehensive Mental Health Program Guide Judith A. Cook, Laurie Curtis, Jessica A. Jonikas Carolyn Russell, Nancy Sweatland Self-Directed Care Implementation Manual: A Comprehensive Mental Health Program Guide ©Copyright, 2015, 2017 University of Illinois at Chicago Center on Mental Health Services Research and Policy Center on Self-Directed Recovery and Integrated Health Care 1601 West Taylor Street Chicago, IL 60612 Phone: (312) 355-1696 FAX: (312) 355-4189 Judith A. Cook, PhD, Director People in mental health recovery, their family members, and service providers are welcome to reproduce this manual for their personal and/or programmatic use. No part of this manual may be reproduced, adapted, or modified for commercial, research, or educational purposes, or for publication (including self-publication), without written permission from its lead author. The authors would like to acknowledge its partners in SDC, whose ideas, feedback, and input were invaluable throughout the development of this manual: Jane Burke-Miller, Samuel Shore, Walter Norris, Matthew Ferrara, Brandy Ruckdeschel, Luis Moreno, Malinda Hicks, Mark Salzer, Joseph Rogers, Erme Maula, Michael Hlebechuk, Kristi Jamison, Gene Costlow, Jennifer Spaulding-Givens, Anna Markowitz, Dong Trang, Thomas Wornick, Cheryl Hunter, Anna Salazar, Brittony McNaughton, and Wesley Gray. This manual was created with funding from the National Institute on Disability, Independent Living, and Rehabilitation Research, Administration on Community Living and the Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, both of the U.S. Department of Health and Human Services (Grant #90RT5012 and #90RT5038). The opinions expressed herein do not necessarily reflect the position, policy, or views of any federal agency and no official endorsement should be inferred. 2 Self-Directed Care Implementation Manual: A Comprehensive Mental Health Program Guide Table of Contents About This Manual . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 1. What is Self-Directed Care?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 2. Getting Started. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 3. Being Participant-Driven . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 4. SDC Program Structure. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 5. Self-Directed Life Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47 6. Budgeting and Purchasing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 62 7. Eligibility, Recruitment, & Enrollment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 71 8. SDC Support Brokers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 77 9. SDC Program Evaluation & Fidelity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 82 References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87 End Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89 Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91 3 Self-Directed Care Implementation Manual: A Comprehensive Mental Health Program Guide About This Manual Why And How We Created This Manual This manual was created for people who are interested in alternative ways to help people recover their wellness following a diagnosis of mental illness. Staff at the University of Illinois at Chicago’s Center for Mental Health Services Research and Policy created the manual. They worked with staff and administrators of SDC programs across the country to gather information and make it available to you. The manual’s production and distribution are funded by a grant from two federal agencies. The first is the National Institute on Disability, Independent Living, and Rehabilitation Research of the U.S. Department of Health and Human Service’s Administration on Community Living. The second is the Center for Mental Health Services, which is part of the Substance Abuse and Mental Health Services Administration. Who Is This Manual For? This manual is for anyone who is interested in designing, implementing, evaluating, or maintaining a self-directed care program for people with mental health conditions. Our intent is to make it accessible to a wide range of readers and to provide practical information about various aspects of SDC program development and operations. Throughout the manual, we provide links and resources so that you can follow up on specific areas of interest. To keep the text easy to read, we also have included a list of References and a Resources section containing helpful information. How Can this Manual Help Me? Self-directed care in behavioral health care is a relatively new and promising model, but has not yet been shown to be an evidence-based practice. This manual offers information about what has worked for others, and provides practical tools you can use or adapt to your unique situation. We also hope to stimulate your thinking about what you can do to start an SDC program in your area. Finally, we want to inspire you to believe you can make a difference! SDC has a strong evidence base in the disability, aging, and social service fields, where there are an increasing number of ways that it is being organized and delivered. Different States approach SDC somewhat differently, with varying legislative mandates, Medicaid/Medicare contract stipulations, and local resources. Even within programs, people have different ideas and opinions about how to organize SDC. However, contained in this diversity is a common denominator: the participant is in the driver’s seat. A Word about Language Language is important because the words we use communicate many subtle things about our attitudes and values. They carry more meaning than just what is understood on the surface. We strongly believe that individuals have the right to determine how they and their experiences are described. However, we are also aware that there is currently no consensus about appropriate or respectful terms that describe groups of people with experiences in the mental health system. In this manual we will use different terms to refer to these individuals, depending on the context, such as people with psychiatric disabilities, serious mental illness, or lived experience of mental health disorders. Generally, we use person-first language or refer to SDC participants. 4 Self-Directed Care Implementation Manual: A Comprehensive Mental Health Program Guide 1 What is Self-Directed Care? Imagine… Roberto is unhappy with the services of his therapist who speaks only English. He talks to his SDC support broker about Spanish-speaking therapists in the community and makes a decision to find a bilingual service provider. After talking to a few, he selects the one he feels most comfortable with and makes the switch. Darcel benefits from getting online support. She has made friends online and has found virtual support groups to be helpful for her well-being. She would like to have an Internet connection at home so she can go online in the evenings. She looks at her personal SDC budget and decides to purchase Internet service as part of her recovery plan. Denise hates being overweight. Her medications only seem to make it worse. Her neighbor has had success going to the self-help weight loss program Weight Watchers™. Denise wonders if it would work for her, too. With her support broker, she revises her SDC budget to cover the weekly fees and arranges to attend with her neighbor. In 6 months, she has lost weight and has developed new friendships within the group. Shawn has always been interested in creative writing. He wonders whether he might have a hidden talent in this area. He submits an application and is accepted into a course on writing stories and articles for publication. His support broker encourages him to plan and budget for enrollment. Shawn earns four college credits, has authored an article for publication, and views writing as a future source of earned income. In Self-Directed Care programs, these stories are not fantasies. They are real accounts about new ways services are being made available to people with mental illnesses. You can read other success stories by visiting the Texas Self-Directed Care web site: . This manual is designed to help people understand self-directed mental health care and to provide practical information and resources for promoting, developing, and operating an SDC program. The main sections of Chapter 1 are: • What is Self-Directed Care? • Why is SDC Needed? • Benefits for SDC Program Participants • SDC as a Business Approach What is Self-Directed Care? Self-directed care involves 4 basic components (Cook, Russell et al., 2007). First, participants develop recovery plans that specify life goals they have identified through a person-centered planning process, along with goods and services needed to promote goal attainment. Second, participants create budgets allocating dollar amounts for each purchase related to their life goals. Third, SDC program staff (called support brokers) are available to help participants develop their plans and budgets and to support them in purchasing the goods and services specified in their plans. Finally, an organization called a fiscal intermediary provides financial management services such as provider billing and withholding of money for payroll taxes. The SDC model is founded on principles of self-determination (Cook & Jonikas, 2002). • Benefits of SDC as a Service Delivery Approach • Where does SDC Come From? 5 Self-Directed Care Implementation Manual: A Comprehensive Mental Health Program Guide Self-determination emerged as a service delivery concept in the 1990s. Rooted in a human rights movement, as well as concerns about rising costs and limited choice of services, disability advocates promoted the idea that people should directly purchase their own care and services. In itself, the idea of giving people purchasing power in health care is not new or unique. The innovative elements are: (1) the purchasers are individuals with disabilities who are receiving publicly funded services; (2) a portion of public resources typically directed toward communitybased agencies are shifted to the control of individuals; and (3) participants can choose to purchase services outside of the public service system, within the parameters of State and federal regulations. SDC is a model of health care financing in which individuals have the power, resources, and authority to choose the services and supports they feel will help them achieve their personal recovery goals. Individuals in SDC programs have a large say in how the funds used for their outpatient care are spent. In mental health SDC programs, funds that are ordinarily paid to a community-based mental health service provider agency are made available, through a fiscal agent, to participants based on various formulas. Individuals can then: • assess their personal needs for care and support; • develop individualized recovery plans that will help them to achieve their goals; This way of choosing and paying for services is different from traditional mental health care. To navigate recovery plan and budget development, participants receive support and help as needed from SDC program staff, often called “support brokers,” “life coaches,” or “recovery coaches.” These staff members work on behalf of SDC participants and not a particular service delivery agency. Brokers provide information and education and help to coordinate services. They also monitor quality and effectiveness of services and purchases. They can further assist participants to: • assess their needs; • identify and research service options; • establish personal recovery plans and budgets; • make decisions about how and by whom their needs will be met; • manage the person’s individual budget; • trouble-shoot problems as they arise. The service brokers are not case managers. Their allegiance is to the individual participant and his/her goals, not to the needs or interests of a specific service agency or program. SDC programs use financial agents, called fiscal intermediaries, to handle administrative tasks such as enrolling providers, billing, payroll, tax withholding, and accounting. Preferably, the fiscal intermediary is independent of any traditional service provider agency. • design, implement, and monitor individual budgets based on their recovery plans. 6 Self-Directed Care Implementation Manual: A Comprehensive Mental Health Program Guide Why is SDC needed? For me, it’s been a life changing process that helped me discover who I am, my needs, my dreams,and the future of my choosing. ~SDC Program Participant SDC offers people more choices, greater control, and enhanced personal responsibility for their care and support services. It can increase options for individual recovery pathways, improve quality of life, and control costs for the funder. SDC has been used for a number of years as a viable approach to services for older adults, persons with long-term medical conditions, and those with physical and developmental disabilities. However, it has been slower to emerge in the mental health field (Alakeson, 2008; Cook et al., 2010). Nonetheless, there has been increasing interest in SDC in mental health. This interest is being driven by a number of factors: • Service users’ personal involvement in decision-making about their care is increasingly recognized as critical for effective service delivery and positive recovery outcomes • Many States have implemented national and local policy initiatives to transform their mental health care system to promote recovery through increased participant self-direction • The complex array of public mental health services often lacks mechanisms to keep the system responsive to the needs and desires of people with psychiatric disabilities • Growing evidence links individuals’ recovery success to the exercise of personal choice and the availability of acceptable options • Rigorous evaluations of SDC programs show that they improve quality of life, achieve superior health outcomes, and have high user satisfaction at no greater cost than traditional services Success of SDC initiatives for other groups raises the question of “why not in mental health?” In 2003, the President’s New Freedom Commission on Mental Health included self-directed care as part of its system transformation vision. “Consumers and families will play a larger role in managing the funding for their services, treatments, and supports. Placing financial support increasingly under the management of consumers and families will enhance their choices. By allowing funding to follow consumers, incentives will shift toward a system of learning, self-monitoring, and accountability” (U.S. DHHS, SAMHSA, 2005a). For many years, there had been a presiding belief in the traditional mental health system that people with mental illnesses cannot and should not take significant responsibility for making decisions about their care. The consequences of this assumption have been disempowerment and dependency for many people. Over the past decades, there has been growing emphasis on a recovery-oriented system. Reflecting this trend, the Commission’s report challenged the service system to transform itself by implementing consumer-direction in every aspect of service delivery. SDC is a significant approach for increasing self-direction with the potential to transform the service system profoundly. Benefits for SDC Program Participants The program made a huge impact on my life. The financial aspect helped. But the effects were emotional and mental more than anything. I feel like people care, like I am needed and wanted. ~SDC Program Participant People with psychiatric disabilities typically have little control over the services they receive. As “patients,” “clients,” “or “users” of services they are often on the receiving end of decisions made by other people that are driven by needs or interests other than their own. They have rarely had the power of being a “purchaser” of services. This dynamic sets up the potential for disempowerment, learned-helplessness, and dependency. In free-market economies, the suppliers of goods and services compete with one another to earn the business of the purchaser. As such, suppliers are accountable to purchasers who control the dollars. If purchasers are not satisfied, they take their business elsewhere. 7 Self-Directed Care Implementation Manual: A Comprehensive Mental Health Program Guide The Four Basic Rights and Responsibilities of Self-Determination Freedom To choose supports and services that match individuals’ lifestyles and expectations. Authority To direct providers and control an individual budget by purchasing the supports and services outlined in a plan. Responsibility To give back to the community in beneficial ways. Support Through interdependence that fosters participation in the community. Source: Cook, J.A., Terrell, S., & Jonikas, J.A., 2004 However, the business model in mental health services does not operate as a free-market economy. More often, it is a monopoly in which the supplier (the providers and their funders) decide what will be available, where, and at what price. Usually, the purchaser can only “take it or leave it.” In SDC programs, participants have the “power of the purse” as purchasers of their own services. SDC is a concrete example of putting recovery values into action. Through SDC programs, people with psychiatric disabilities are able to select specific services, supports, and other resources that meet their individual needs and preferences. Options are expanded by not being limited to what is available from traditional mental health service providers. Satisfaction is higher because if a participant is not satisfied, he or she can change vendors. The burden is on the vendor to ensure service quality and customer satisfaction. The Substance Abuse and Mental Health Services Administration (SAMHSA) reports that SDC can facilitate “personal responsibility, create an economic interest in obtaining and sustaining recovery, and promote learning, self-monitoring, and accountability. Most important, choice and control can lead to recovery and improved quality of life” (U.S. DHHS, SAMHSA, 2005b). People who are motivated are more likely to be successful. People who have choice and control of decisions pertaining to their lives and services are more likely to be motivated. When this occurs, everyone benefits in the following ways: • Individuals feel better and can point to their own efforts and say, “I did it!” • Service providers can take pride in high rates of consumer satisfaction and positive outcomes for their clients • Funders can ensure the effective use of financial resources and take pride in the fact that value is high for the outlay of public funds 8 Self-Directed Care Im...
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