Self-Direction

Kevin J. Mahoney, Marc H. Fenton, Valerie J. Bradley

Description

In the past, when people with disabilities and older adults needed help with activities of daily living and navigating their communities, they rarely had any choice about who helped them, when that support was delivered, or what the worker would or would not do. The self-direction movement changed all that by offering people the option to select their own workers and even create an individualized budget to help them live more independently. Written by experts who played a key part in the growth, evaluation, and dissemination of this revolutionary approach, Self-Direction describes the development of this movement through the authors' personal accounts. Also included are stories from actual participants in the movement who benefitted from this approach and from policymakers who saw how self-direction could help address states' problems. The book's conclusion discusses recommendations that can improve the way self-direction is delivered and how to spread its message so that all people with disabilities can have this choice.
List of Illustrations
Acknowledgments
Preface

1. Self-direction: What It Is and How It Works

2. The History and Policy Antecedents of Self-direction

3. The Federal Role: Less Visible, Just as Important

4. The Status of Self-direction across the Country

5. Setting Individualized Budgets to Support Self-direction

6. The Impact of Self-direction: Results for Participants

7. The Impact of Self-direction: Financial Results

8. Factors That Can Influence the Growth of Self-direction

9. The Expansion of Self-direction to Other Participants

10. International Examples of Self-direction in Human Services

11. Reflections and Recommendations

Postscript
Notes
References
Index

Sujets

• Self-help

Informations

• Publié par: State University of New York Press
• Date de parution: 01 juin 2021
• Nombre de lectures: 4
• EAN13: 9781438483443
• Langue: English

Extrait

SELF-DIRECTION
SELF-DIRECTION
A Revolution in Human Services
Valerie J. Bradley
Marc H. Fenton
Kevin J. Mahoney
Published by State University of New York Press, Albany
© 2021 State University of New York
All rights reserved
Printed in the United States of America
No part of this book may be used or reproduced in any manner whatsoever without written permission. No part of this book may be stored in a retrieval system or transmitted in any form or by any means including electronic, electrostatic, magnetic tape, mechanical, photocopying, recording, or otherwise without the prior permission in writing of the publisher.
For information, contact State University of New York Press, Albany, NY
www.sunypress.edu
Library of Congress Cataloging-in-Publication Data
Names: Bradley, Valerie J., author. | Fenton, Marc H., author. | Mahoney, Kevin J., author.
Title: Self-direction : a revolution in human services / Valerie J. Bradley, Marc H. Fenton, Kevin J. Mahoney.
Description: Albany : State University of New York Press, [2021] | Includes bibliographical references and index.
Identifiers: LCCN 2021007122 | ISBN 9781438483436 (hardcover : alk. paper) | ISBN 9781438483429 (pbk. : alk. paper) | ISBN 9781438483443 (ebook)
Subjects: LCSH: Human services. | Autonomy (Psychology)
Classification: LCC HV40 .B814 2021 | DDC 361.973—dc23
LC record available at https://lccn.loc.gov/2021007122
10 9 8 7 6 5 4 3 2 1
To the people with disabilities and older adults across the country who have chosen self-direction in order to create services and supports that help them to lead their best lives
Contents
List of Illustrations
Acknowledgments
Preface
Chapter 1 Self-direction: What It Is and How It Works
Chapter 2 The History and Policy Antecedents of Self-direction
Chapter 3 The Federal Role: Less Visible, Just as Important
Chapter 4 The Status of Self-direction across the Country
Chapter 5 Setting Individualized Budgets to Support Self-direction
Chapter 6 The Impact of Self-direction: Results for Participants
Chapter 7 The Impact of Self-direction: Financial Results
Chapter 8 Factors That Can Influence the Growth of Self-direction
Chapter 9 The Expansion of Self-direction to Other Participants
Chapter 10 International Examples of Self-direction in Human Services
Chapter 11 Reflections and Recommendations
Postscript
Notes
References
Index
Illustrations
Figures 1.1 Elements of Self-Direction . 4.1 Number of self-direction programs in the United States . 4.2 Number of participants in self-direction programs in the United States . 4.3 Number and proportion of National Core Indicators survey respondents (adults in the United States with intellectual and developmental disabilities) who are self-directing . 5.1 Five-level support needs framework . 7.1 Percentage of participants receiving paid assistance after 9 months . 8.1 Faces of participant direction . 10.1 Seven-step model .
Tables 7.1 Non-Personal Care (Institutional) Medicaid Costs—Year One Differences per Person 7.2 Non-Personal Care (Institutional) Medicaid Costs—Year Two Differences per Person 7.3 Arkansas Medicaid Expenditures Per User Per State Fiscal Year: Agency and Independent Choices 7.4 California Monthly Expenditures by Group 10.1 Comparable Utilization From 1994 to 2013
Acknowledgments
The three authors would like to recognize people who made important contributions to this book and to thank them for their collaboration. First, Pam Doty in the Office of the Assistant Secretary for Planning and Evaluation deserves our sincere gratitude for all the questions she answered and the fact checking she was willing to do as we were writing the book. Pam also guided us to international experts who were able to help ensure the accuracy and completeness of chapter 10 on international efforts in self-direction in the Netherlands and Germany.
We give special thanks to Jessica Maloney, director of communications at the Human Services Research Institute, who provided extraordinary editorial support and consultation throughout. Her expertise was invaluable.
Other colleagues made contributions to specific chapters:
Mark Sciegaj, PhD, MPH, professor of health policy and administration at the Pennsylvania State University, contributed the section on national inventories charting the growth of self-direction in chapter 4 ;
Jamie Petner-Arrey, PhD, policy associate, and John Agosta, PhD, executive vice president—both from the Human Services Research Institute—were the main authors for chapter 5 on how budgets are set;
Bevin Croft, PhD, research associate at the Human Services Research Institute, was the lead author of the section on self-direction in behavioral health in chapter 9 ;
Kali S. Thomas, PhD, associate professor of health services, policy, and practice at the Brown University School of Public Health and research health science specialist at Providence VA Medical Center, coauthored the section on self-direction for veterans in chapter 9 ;
Martin Routledge, head of operations at In-Control and director of the Coalition for Collaborative Care, was the main author of the section on self-direction in England in chapter 10 ;
Matthias Von Schwanenflugel, a senior official in the German government, reviewed and edited the section on Germany in chapter 10 .
We are also grateful for editorial support from Virginia Mulkern, PhD, senior advisor at the Human Services Research Institute, and Hassan Ragy, former research assistant at the Human Services Research Institute.
Preface
This book comes from the deep experience the authors have had in human services and self-direction. We felt a need to reach out to the public policy community to explain how self-direction provides an extraordinary alternative for long-term services and supports that shifts the power and control to participants but is not yet well understood. Each of us has had more than 40 years in the human services field, at least 20 of which were spent developing and consulting to states on the self-direction option across the country. Each of us was nearing the end of our professional careers. Each of us is passionate about passing on the lessons and legacy of this empowering approach and the ways that the option to self-direct can reach more people. As individuals, we have observed the emergence of self-direction from different vantage points. We hope that in this book we succeeded in combining those observations and experiences in a cohesive whole that advances the understanding of self-direction and helps create a path forward for its growth and development across the country
The initial idea for the book came when Marc and Val spoke at an international conference on self-direction at British Columbia University in 2015. Seventeen countries attended, many presented, and Marc and Val realized how little was understood about the approach to self-direction in the United States. They decided that a book on the American experience with self-direction would fill an important void. They reached out to Kevin and invited him to join them to write a comprehensive overview of self-direction.
Val began her work in human services in the late 1960s as a staff member in the California Legislature during major reforms of the state’s mental-health and developmental-disabilities systems. She left and became a consultant and eventually founded the Human Services Research Institute (HSRI), a nonprofit public-policy organization. HSRI has been in the forefront of major reforms in behavioral health and developmental disabilities, including conducting research on the outcomes of deinstitutionalization, supporting the expansion of family support initiatives, designing quality assurance and improvement tools, and creating the National Core Indicators program that collects data on people with developmental disabilities and their families in 46 states. Her interest in self-direction began when she was an evaluator of self-direction pilot programs for people with developmental disabilities funded by the Robert Wood Johnson Foundation in the 1990s. She saw that self-direction was key to the empowerment of people with disabilities. Since then, she has continued to help states to refine policies that support self-direction as part of person-centered initiatives. She is now President Emerita of HSRI.
Marc has been in public services and public policy for his entire career. His work began at the Massachusetts Department of Mental Health and Mental Retardation where he focused on closing state institutions and building the foundation for community alternatives. He joined the Public Consulting Group, Inc. (PCG) in Boston in 1995 and consulted with state governments across the country on deinstitutionalization, building cost-effective community programs, and developing long-term strategies for community-based systems. He moved to self-direction in 1999, providing consultation to states that were awarded self-direction pilots for people with developmental disabilities funded by the Robert Wood Johnson Foundation. Seeing how self-direction satisfied people’s needs and desires in a public system at a competitive cost, he established a new firm at PCG—Public Partnerships, LLC—to provide financial management and support brokerage to states creating self-direction waivers and programs. At the time of his retirement, the enterprise was in 26 states supporting 130,000 participants, 150,000 workers, and a joint venture supporting self-direction in Australia.
Kevin came to self-direction research in 1995 when he was recruited from California by the Robert Wood Johnson Foundation and the US Department