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Evaluation of the Centers for Independent Living Program PDF

160 Pages·2003·0.42 MB·English
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Evaluation of the Centers for Independent Living Program June 2003 This contract was funded by the Rehabilitation Services Administration, Office of Special Education and Rehabilitative Services, U.S. Department of Education, under contract number ED99CO0131 Prepared by CESSI With assistance from WESTAT CESSI 6858 Old Dominion Drive, Suite 250 McLean, Virginia 22101 703 448 6155 If it weren’t for the services the CIL provides, I’d be in a nursing home. The CIL helped me obtain the services of a personal assistant. I am in college. Without the personal assistant, I would not have been able to go to college. ? Quotes from Consumer Survey respondents. TABLE OF CONTENTS Chapter Page EXECUTIVE SUMMARY....................................................................... EX-1 1 BACKGROUND ON INDEPENDENT LIVING........................................ 1-1 1.1 Introduction…………………........................................................ 1-1 1.2 Independent Living Movement History and Philosophy .................. 1-2 1.3 Federal Support for Independent Living Program............................ 1-3 1.4 Current Federal Legislation and Funding........................................ 1-4 1.4.1 State Plan for Independent Living (SPIL)......................... 1-4 1.4.2 Statewide Independent Living Councils (SILCs) .............. 1-5 1.4.3 The Role of the Designated State Unit (DSU) .................. 1-6 1.4.4 Definition of Centers for Independent Living (CILs) ........ 1-7 1.4.5 Current Federal Funding for Independent Living Programs 1-7 1.5 CIL Consumers’ Characteristics .................................................... 1-8 1.6 Training for CILs.......................................................................... 1-9 1.6.1 IL Net........................................................................... 1-10 1.6.2 Research and Training Center on IL Management ............ 1-10 1.6.3 Research and Training Center on Rural Rehab Services.... 1-11 1.6.4 Regional Rehabilitation Continuing Education Programs .. 1-11 1.7 Evaluation of Independent Living and Vocational Rehabilitation ..... 1-12 1.7.1 Berkeley Planning Associates, 1986 ................................ 1-12 1.7.2 Research Triangle Institute, 1996 .................................... 1-13 1.7.3 Research Triangle Institute, 1998 .................................... 1-13 1.7.4 RSA Monitoring and Evaluation ..................................... 1-14 1.8 Current Issues……………………………………………………….. 1-17 1.8.1 Rural Coverage .............................................................. 1-17 1.8.2 Services to Additional Populations .................................. 1-18 1.8.3 Other Issues................................................................... 1-18 2 EVALUATION DESIGN ......................................................................... 2-1 2.1 Research Design ........................................................................... 2-1 2.1.1 Conceptual Framework for the CIL Evaluation ................ 2-1 2.1.2 Research Questions and Study Issues............................... 2-5 i TABLE OF CONTENTS (continued) Chapter Page 2.2 Methodology ................................................................................ 2-10 2.2.1 Data Sources.................................................................. 2-10 2.2.2 Questionnaire Design ..................................................... 2-10 2.2.3 The Executive Director Respondents ............................... 2-11 2.2.4 Drawing the Consumer Sample ....................................... 2-12 2.2.5 Pretest........................................................................... 2-14 2.2.6 Data Collection .............................................................. 2-15 2.3 Data Analysis ............................................................................... 2-17 2.4 Limitations of the Study ................................................................ 2-19 3 CIL OPERATIONS.................................................................................. 3-1 3.1 Introduction ................................................................................. 3-1 3.2 Characteristics of the Centers and their Directors............................ 3-1 3.3 Independent Living Philosophy ..................................................... 3-2 3.4 Board of Directors........................................................................ 3-4 3.5 Assessing Community Needs and Establishing the Advocacy Agenda 3-5 3.6 Systems Advocacy—Process......................................................... 3-6 3.7 Systems Advocacy—Outcomes..................................................... 3-12 3.8 Services Provided......................................................................... 3-14 3.9 Outreach to Underserved Constituents ........................................... 3-16 3.9.1 Multicultural Communities ............................................. 3-16 3.9.2 Assisting People with Various Disabilities ....................... 3-17 3.10 Accessibility of Centers and the Services They Provide ................... 3-17 3.11 Training and Technical Assistance Needs....................................... 3-19 3.12 Relationships with Other Agencies ................................................ 3-19 3.12.1 Designated State Unit (DSU) .......................................... 3-20 3.12.2 State Agency for the Blind .............................................. 3-20 3.12.3 Statewide Independent Living Council (SILC) ................. 3-21 3.13 Evaluation and Monitoring ............................................................ 3-23 3.14 CIL Funding................................................................................. 3-24 4 CONSUMERS......................................................................................... 4-1 4.1 Introduction ................................................................................. 4-1 4.2 Consumer Characteristics and Study Variables ............................... 4-1 ii TABLE OF CONTENTS (continued) Chapter Page 4.3 Disability Profile of CIL Consumers.............................................. 4-4 4.3.1 Home Accessibility Features........................................... 4-5 4.3.2 Difficulty Getting Around the Home ............................... 4-5 4.3.3 Use of Special Transportation Services............................ 4-6 4.3.4 Use of Regular Public Transit ......................................... 4-7 4.3.5 Telephone Availability ................................................... 4-7 4.3.6 Life Satisfaction ............................................................. 4-8 4.3.7 Types of Disabilities of CIL Consumers………………….. 4-10 4.3.8 Activity Limitations ....................................................... 4-10 4.3.9 Characteristics of CIL Consumers Compared to the General Population with Disabilities................................ 4-12 4.3.10 Characteristics of CIL Consumers Compared to the NHIS-D 4-14 4.3.11 Vocational Rehabilitation Services.................................. 4-14 4.4 Information about Options, Services, and Laws.............................. 4-15 4.5 Services and Satisfaction Levels .................................................... 4-17 4.5.1 Services Consumers Received......................................... 4-19 4.5.2 Individual Advocacy...................................................... 4-20 4.5.3 Consumer Satisfaction with Services Received ................ 4-21 4.5.4 Services Received by CIL Location................................. 4-22 4.5.5 Consumer Satisfaction and CIL Location ......................... 4-22 4.5.6 Services Received and Satisfaction by Consumer Location 4-23 4.5.7 Services Received and Satisfaction by CIL Size ............... 4-25 4.5.8 Services Received and Satisfaction by Race..................... 4-28 4.5.9 Services and Satisfaction by Hispanic and Non-Hispanic . 4-29 4.5.10 Services Received and Satisfaction by Income Level........ 4-31 4.5.11 Service Received and Satisfaction by Gender................... 4-33 4.5.12 Services Received and Satisfaction by Disability Type ..... 4-35 4.5.13 Services Received and Satisfaction by Age ...................... 4-36 4.6 Consumer Outcomes..................................................................... 4-39 4.6.1 Consumer Gains and Positive Life Changes..................... 4-39 4.6.2 Achieving the Goal/Solving the Problem......................... 4-42 4.6.3 Overall Satisfaction ........................................................ 4-43 4.7 Summary ..................................................................................... 4-45 5 DISCUSSION AND CONCLUSIONS....................................................... 5-1 5.1 Introduction ................................................................................. 5-1 5.2 Overall Findings ........................................................................... 5-1 5.3 Access Measures .......................................................................... 5-2 iii TABLE OF CONTENTS (continued) Chapter Page 5.3.1 Outreach to Underserved Constituencies.......................... 5-2 5.3.2 Center Accessibility ....................................................... 5-3 5.4 Process Measures ......................................................................... 5-4 5.4.1 Independent Living Philosophy ....................................... 5-5 5.4.2 Consumers Served and Services Provided........................ 5-5 5.4.3 Consumer Control in Goal Setting and Decision Making .. 5-7 5.4.4 Variations in Services..................................................... 5-7 5.4.5 Advocacy...................................................................... 5-9 5.4.6 Relationships with Other Agencies.................................. 5-10 5.5 Consumer Satisfaction .................................................................. 5-11 5.6 Outcomes..................................................................................... 5-12 5.6.1 Community Change ....................................................... 5-12 5.6.2 Acquisition of Financial Resources ................................. 5-13 5.6.3 Consumer Outcomes ...................................................... 5-13 5.7 Feedback...................................................................................... 5-15 5.7.1 Assessing Community Needs .......................................... 5-15 5.7.2 Board of Directors.......................................................... 5-15 5.7.3 Statewide Independent Living Council (SILC) ................. 5-16 5.7.4 Evaluation and Monitoring ............................................. 5-16 5.8 Recommendations ........................................................................ 5-18 5.8.1 Training and Technical Assistance .................................. 5-18 5.8.2 Statewide Independent Living Council (SILC) ................. 5-19 5.8.3 Evaluation and Monitoring ............................................. 5-20 5.8.4 Comsumer Services........................................................ 5-21 5.8.5 Services to Rural Residents............................................. 5-22 List of Appendixes Appendix A Evaluation Panel of Experts....................................................................... A-1 B Tables...................................................................................................... B-1 C Consumer Survey ..................................................................................... C-1 iv TABLE OF CONTENTS (continued) Appendix D Executive Director Survey......................................................................... D-1 E Examples of Community Outcomes from the 704 Reports........................... E-1 F Instructions for Centers on Selecting Consumers ........................................ F-1 v

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