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Consumer Outcomes

Phase IV Final ReportFiscal Year 2001-2002 Data

A Collaboration of the National Association of State Directors of Developmental Disabilities

Services and Human Services Research Institute

HUMAN SERVICES RESEARCH INSTITUTE2336 Massachusetts Avenue

Cambridge, MA 02140

NATIONAL ASSOCIATION OF STATE DIRECTORSOF DEVELOPMENTAL DISABILITIES SERVICES

113 Oronoco Street Alexandria, VA 22314

December 2002(Revised March 2003)

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Table of ContentsTABLE OF CONTENTS..........................................................................................................................................................................3

LIST OF TABLES.....................................................................................................................................................................................4

LIST OF FIGURES...................................................................................................................................................................................5

I. ORGANIZATION OF REPORT........................................................................................................................................................6

II. INTRODUCTION...............................................................................................................................................................................7

Overview of Project.............................................................................................................................................................................7The Indicators......................................................................................................................................................................................8

III. CONSUMER SURVEY...................................................................................................................................................................10

Organization of the Survey................................................................................................................................................................10

IV. METHODS.......................................................................................................................................................................................11

Criteria for Exclusion of Responses..................................................................................................................................................11Sampling............................................................................................................................................................................................11Administration...................................................................................................................................................................................12Training.............................................................................................................................................................................................13

V. DATA ANALYSIS.............................................................................................................................................................................13

Outcome Adjustment..........................................................................................................................................................................13Scale Development............................................................................................................................................................................14Significance Testing...........................................................................................................................................................................14

VI. RESULTS: DEMOGRAPHIC CHARACTERISTICS OF RESPONDENTS..........................................................................14

Demographic Profile of Sample........................................................................................................................................................20Outcome Adjustment Variables.........................................................................................................................................................23

VII. RESULTS: CORE INDICATOR OUTCOMES AND COMPARISONS ACROSS STATES..............................................29

Summary of Aggregate Results..........................................................................................................................................................29Presentation of Detailed Results by State..........................................................................................................................................34Consumer Outcomes: Work...............................................................................................................................................................36Consumer Outcomes: Community Inclusion.....................................................................................................................................42Consumer Outcomes: Choice and Decision-Making........................................................................................................................49Consumer Outcomes: Relationships..................................................................................................................................................60Consumer Outcomes: Satisfaction.....................................................................................................................................................63System Performance: Service Coordination......................................................................................................................................65System Performance: Access.............................................................................................................................................................70Health, Welfare, and Rights: Safety..................................................................................................................................................72Health, Welfare & Rights: Health.....................................................................................................................................................74Health, Welfare & Rights: Medications............................................................................................................................................76Health, Welfare & Rights: Respect/Rights........................................................................................................................................77

APPENDIX A: RULES FOR RECODING AND COMBINING VARIABLES TO COMPUTE CORE INDICATORS...........83

Table A1. Outcome Adjustment Variables and Rules for Collapsing Response Codes...................................................................84Table A2. Indicator Variables and Rules Used for Analysis............................................................................................................85

APPENDIX B: SERVICES AND SUPPORTS RECEIVED..............................................................................................................87

Appendix C: Item-by-Item Survey Results..............................................................................................................................................90

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List of TablesTable 1. Crosswalk of Core Indicators and Survey Questions: Consumer

Survey 2001..............................................................................................................................8Table 2. Valid Number of Surveys and Response Rates, By State.........................12Table 3. Gender..................................................................................................................................15Table 4. Race.......................................................................................................................................15Table 5. Ethnicity..............................................................................................................................16Table 6. Level of MR........................................................................................................................16Table 7. Other Disabilities...........................................................................................................17Table 8. Type of Residence..........................................................................................................18Table 9. Age..........................................................................................................................................19Table 10. Consumer Legal Status............................................................................................23Table 11. Primary Means of Expression...............................................................................24Table 12. Level of Mobility..........................................................................................................25Table 13. Vision.................................................................................................................................25Table 14. Frequency of Seizures...............................................................................................26Table 15. Frequency of Medical Care Required...............................................................26Table 16. Presence of Self-Injurious Behavior.................................................................27Table 17. Presence of Disruptive Behavior........................................................................27Table 18. Presence of Uncooperative Behavior...............................................................28Table 19. Employment Data Collected from Consumer Survey Supplement

FY2002 – Earnings and Hours Per Month, By State........................................37Table 20. Employment Data Collected from Consumer Survey Supplement

FY2002 – Earnings and Hours Per Month, By State (Continued)............38Table 21. Employment Data Collected from Consumer Survey Supplement

FY2002 – Summary of Monthly Earnings, All States.......................................39Table 22. Employment Data Collected from Consumer Survey Supplement

FY2002 – Summary of Monthly Hours Worked, All States..........................39Table 23. Employment Data Collected from Consumer Survey Supplement

FY2002 – Community Employment Indicators, By State..............................39Table 24. Percent of Respondents Enrolled in Public School..................................40Table 25. Funding Sources of Day/Vocational Services Received by

Respondent.............................................................................................................................40Table 26. Average Monthly Earnings and Average Hours Worked per Month,

by State (Source: State Data Systems FY2001).................................................41Table 27. Community Inclusion Scale Scores by State, Compared to National

Average.....................................................................................................................................42Table 28. Community Inclusion Scale Scores, by Subsets of States....................44Table 29. Proportion of people who go shopping...........................................................45Table 30. Proportion of people who go out on errands or appointments.........45Table 31. Proportion of people who go out for entertainment...............................46Table 32. Proportion of people who go out to eat..........................................................46Table 33. Proportion of people who go to religious services...................................47Table 34. Proportion of people who go to clubs or community meetings........47Table 35. Proportion of people who exercise or play sports.....................................48Table 36. Supports-Related Choices Scale Scores by State, Compared to

National Average.................................................................................................................50Table 37. Personal Choices Scale Scores by State, Compared to National

Average.....................................................................................................................................50Table 38. Support-Related Choices Scale Scores, by Subsets of States............53Table 39. Personal Choices Scale Scores, by Subsets of States.............................53Table 40. Proportion of people who chose place where they live..........................54Table 41. Proportion of people who choose staff who help them at home.......55

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Table 42. Proportion of people who chose place of work or day activity..........55Table 43. Proportion of people who choose staff who help them at work or

day activity..............................................................................................................................56Table 44. Proportion of people who chose case manager/service coordinator

.......................................................................................................................................................56Table 45. Proportion of people who choose people they live with........................57Table 46. Proportion of people who choose daily schedule......................................57Table 47. Proportion of people who choose how to spend free time...................58Table 48. Proportion of people who choose what to buy with spending money

.......................................................................................................................................................58Table 49. Proportion of people who looked at more than one home...................59Table 50. Proportion of people who looked at more than one job........................59Table 51. Proportion of people who report having friends and caring

relationships with people other than support staff and family members..................................................................................................................................60

Table 52. Proportion of people who report having a close friend.........................61Table 53. Proportion of people who are able to see their families when they

want to......................................................................................................................................61Table 54. Proportion of people who are able to see their friends when they

want to......................................................................................................................................62Table 55. Proportion of people who feel lonely...............................................................62Table 56. Proportion of people who report satisfaction with where they live63Table 57. Proportion of people who report satisfaction with their work/day

program....................................................................................................................................64Table 58. Service Coordination Scale Scores by State, Compared to National

Average.....................................................................................................................................65Table 59. Service Coordination Scale Scores, by Subsets of States.....................67Table 60. Proportion of people who report that their service coordinators

help them get what they need.....................................................................................68Table 61. Proportion of people who report that they know their case

manager...................................................................................................................................68Table 62. Proportion of people who report that their case manager asks

them what’s important.....................................................................................................69Table 63. Proportion of people reporting that they received help to reach

goals...........................................................................................................................................70Table 64. Proportion of people who report having adequate transportation

when they want to go somewhere..............................................................................71Table 65. Proportion of people who report that needed services were not

available...................................................................................................................................71Table 66. Proportion of people who report that they feel safe in their home 72Table 67. Proportion of people who report that they feel safe in their

neighborhood........................................................................................................................73Table 68. Proportion of people who had a physical exam in the past year......74Table 69. Proportion of people who had a gynecological exam in the past

year.............................................................................................................................................75Table 70. Proportion of people who had a routine dental exam in the past six

months......................................................................................................................................75Table 71. Proportion of people receiving psychotropic medications..................76Table 72. Proportion of people reporting that they have an advocate or

someone who speaks on their behalf.......................................................................77Table 73. Proportion of people reporting that their mail is opened without

permission..............................................................................................................................78Table 74. Proportion of people who report that they have some restrictions

on being alone......................................................................................................................78

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Table 75. Proportion of people reporting that there are restrictions on their use of the phone..................................................................................................................79

Table 76. Proportion of people report that other people enter their home without permission............................................................................................................79

Table 77. Proportion of people report that other people enter their bedroom without permission............................................................................................................80

Table 78. Proportion of people who have attended activities of self-advocacy groups........................................................................................................................................81

Table 79. Proportion of people reporting they can be alone as much as they want to......................................................................................................................................81

Table 80. Proportion of people reporting that most day support staff treat them with respect...............................................................................................................82

Table 81. Proportion of people reporting that most residential support staff treat them with respect...................................................................................................82

List of FiguresFigure 1. Gender................................................................................................................................20Figure 2. Level of MR......................................................................................................................20Figure 3. Type of Residence........................................................................................................21Figure 4. Community Inclusion – Adjusted Results for Total Sample.................29Figure 5. Relationships – Results for Total Sample.......................................................31Figure 6. Time of Last Physical Exam...................................................................................32Figure 7. Time of Last Dental Exam.......................................................................................32Figure 8. Time of Last GYN Visit..............................................................................................33Figure 9. Community Inclusion: State Scale Scores Compared with National

Average.....................................................................................................................................43Figure 10. Support-Related Choices: State Scale Scores Compared with

National Average.................................................................................................................51Figure 11. Personal Choices: State Scale Scores Compared with National

Average.....................................................................................................................................52Figure 12. Service Coordination: State Scale Scores Compared with National

Average.....................................................................................................................................66

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I. Organization of ReportThis document serves as the final report for the consumer outcomes portion of the Phase IV (FY 2001-2002) National Core Indicators (NCI) data collection. All consumer survey data submitted between July 2001 and June 2002 is included in this report. In addition, Phase IV consumer employment data is included.1 The report is organized as follows:

INTRODUCTION -- Gives a brief overview of the project to date, and presents the core indicators measured with the Consumer Survey and with the optional Day/Vocational/Educational Support supplement.

CONSUMER SURVEY -- Briefly describes the development and structure of the survey instrument.2

METHODS -- Describes the protocol for administering NCI consumer surveys, including sampling criteria, administration guidelines, and interviewer training procedures.

DATA ANALYSIS -- Explains the statistical methods used to analyze the consumer survey data. Includes an explanation of how certain outcomes are “adjusted” for the purposes of making comparisons across states. Also discusses scale construction and significance testing of results.

RESULTS: DEMOGRAPHIC CHARACTERISTICS OF RESPONDENTS -- Presents aggregate and state-by-state results of demographic information used for outcome adjustment.

RESULTS: CORE INDICATOR COMPARISONS ACROSS STATES -- Presents aggregate and state-by-state results for each question.

APPENDICES -- Include additional analysis information, services and supports received, and detailed item-by-item results.

1 Most states collected consumer employment data by using the “Day/Vocational/Educational Support” Supplement to the Consumer Survey. In some states, however, these data are collected from providers on a regular basis and maintained in state data systems.2 For a detailed review of psychometric properties of the survey, including results of reliability and validity tests and features designed to test for consistency of responses, please see the NCI Phase II Technical Report.

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II. IntroductionOverview of ProjectIn December 1996, the NASDDDS Board of Directors launched the Core Indicators Project (CIP). The project’s aim was to support state developmental disabilities authorities (SDDAs) in developing and implementing performance/outcome indicators and related data collection strategies that would enable them to measure service delivery system performance. The project, now called National Core Indicators or NCI, strives to provide SDDAs with sound tools in support of their efforts to improve system performance and thereby to better serve people with developmental disabilities and their families. The Association’s active sponsorship of NCI facilitates states pooling their knowledge, expertise and resources in this endeavor.

NCI Phase I began in January 1997. In August 1997, the Phase I Steering Committee selected a “candidate” set of 61 performance/outcome indicators in order to test their utility/feasibility. Six states agreed to conduct a field test of these indicators, including administering the project’s consumer and family surveys and compiling other data. Field test data were transmitted to project staff during the summer of 1998. The results were compiled, analyzed and reported to participating states in September 1998.

NCI Phase II was launched in January 1999. Phase II data collection wrapped up in June 2000 and set the stage for continuation and further expansion of the project. During Phase II, the Phase I indicators were revised and project data collection tools and methods were improved. The Version 2.0 indicator set consisted of 60 performance and outcome indicators. Going forward, the project expanded its scope to include services for children with developmental disabilities and their families, continued to develop and refine the indicators, and recruited additional states to participate in the project. Phase II data is considered baseline project data. Phase II technical reports and other selected documents are available online at www.hsri.org/cip/core.html.

Twelve states (AZ, CT, KY, MA, MN, NE, NC, PA, RI, VA, VT, WA) participated in Phase II. Four additional states joined the project during the following year (DE, IA, MT, UT), and seven states joined in 2001 (AL, HI, IL, IN, OK, WV, WY). Virginia, Minnesota, Montana, and Utah are currently on hiatus from the project. South Dakota, South Carolina, and Maine signed on in 2002. At the time of this writing, twenty-two states are actively participating in NCI, plus the local DD authority in Orange County, CA. State participation in the project is entirely voluntary.

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This report summarizes both “first cycle” data (submitted prior to February 28, 2002) and “second cycle” data (submitted between March 1, 2002 and June 30, 2002) of Phase IV (i.e., the fourth year) of NCI. A total of seventeen states submitted Consumer Survey data in this round.

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The IndicatorsThe survey instrument is designed specifically to measure certain core indicators. Most indicators correspond to single survey items. A few indicators are referenced to clusters of related items. Table 1 presents a crosswalk between core indicators3 collected using the Consumer Survey 2001 and their corresponding survey item(s).

Table 1. Crosswalk of Core Indicators and Survey Questions: Consumer Survey 2001

Key to codes: BI = background information question Q = consumer interview question (bold indicates question allows consumer responses only)S = Day/Vocational/Educational Supplement

Question:

Refers to Core Indicator:

BI-17 The proportion of people taking medications for mood, anxiety, or behavior problems.

BI-20 The proportion of people who have had a physical exam in the past year.

BI-21 The proportion of women who have had a GYN exam in the past year.

BI-22 The proportion of people who have had a routine dental exam in the past six months.

Q1 The proportion of people who are satisfied with their job or day program.

Q2, Q8 The proportion of people indicating that most support staff treat them with respect.

Q4 The proportion of people satisfied with where they live.

Q5 The proportion of people who report satisfaction with the amount of privacy they have.

Q6, Q7 The proportion of people who report that they feel safe in their home and neighborhood.

Q9, Q10,

The proportion of people whose basic rights are respected by others.

3 Wording has been updated to reflect Phase V Indicators (in draft).

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Q45-Q47

Q12 The proportion of people who have friends and caring relationships with people other than support staff and family members.

Q13 The proportion of people who have a close friend, someone they can talk to about personal things.

Q14, Q16

The proportion of people who are able to see their families and friends when they want.

Q15 The proportion of people who feel lonely.

Q17 The proportion of people who know their service coordinators.

Q18 The proportion of people reporting that service coordinators help them get what they need.

Q19 The proportion of people who report that their service coordinators asked about their preferences.

Q20 The proportion of people who have an advocate or someone who speaks on their behalf.

Q21 The proportion of people reporting that they received support to learn or do something new in the past year.

Q22 The proportion of people who report having adequate transportation when they want to go somewhere.

Q26-Q31, Q33

The proportion of people who participate in everyday activities in their communities.

Q34, Q36-Q40, Q42- Q44

The proportion of people who make choices about their everyday lives.

Q35, Q41

The proportion of people who report having been provided options about where to live and work.

Q48 The proportion of people who have participated in activities of self-advocacy groups or other groups that address rights.

Q49 The rate at which people report that "needed" services were not

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available.

S1-S6 The average monthly earnings of people who have jobs in the community.

S1-S6 The average number of hours worked per month for people with jobs in the community.

S1-S6 The percent of people earning at or above the state minimum wage.

S9 Of people who have a job in the community, the percent who were continuously employed during the previous year.

S10 Of people who have a job in the community, the percent who receive job benefits.

S11 Of people who have a job in the community, the average length of time people have been working at their current job.

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III. Consumer Survey The National Core Indicators Consumer Survey was initially developed by the project’s technical advisory subcommittee with the purpose of collecting information directly from individuals with developmental disabilities and their families or advocates. The survey is designed to measure over half of the 60 core indicators. Many questions were drawn from survey instruments already in use in the field; other questions were developed specifically for this project. Project staff have tested and refined the instrument each year based on feedback from interviewers.

Organization of the SurveyThe Consumer Survey is composed of a pre-survey form and three sections.

THE PRE-SURVEY FORM collects information necessary to schedule face-to-face interviews, including contact information for consumers, and the names of guardians, advocates, or other individuals who might be asked to provide responses. The form also was used by surveyors to identify special communication needs that individuals might have prior to conducting the interview, define terms the individual would be most familiar with (such as “case manager” or acronyms), and document that informed consent was obtained. In most instances, information for the pre-survey form was obtained from the individual’s case manager. [Note: Individual identifying information was excluded from data submitted to HSRI.]

THE BACKGROUND INFORMATION SECTION requests data that would most likely be found in agency records or information systems. In some states, case managers complete this section at the same time the pre-survey form is completed. In other states, surveyors complete the section during the direct interview.

SECTION I of the survey, which concerns questions aimed at obtaining expressions of satisfaction and opinions from each individual, may be completed only through a direct interview with the individual; proxy responses are not acceptable.

SECTION II questions are to be answered by the individual if possible. If the person is unable to respond, an advocate is asked to answer.

The last page of the survey is the SURVEYOR FEEDBACK SHEET. Surveyors are asked to record the length of the interview with the individual and describe any problematic questions.

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The DAY/VOCATIONAL/EDUCATIONAL SUPPLEMENT is an optional add-on to the survey instrument. These data are generally collected at the same time the background information section is completed.

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IV. MethodsCriteria for Exclusion of Responses

All persons selected in the survey sample are given an opportunity to respond to questions in a face-to-face interview. There is no pre-screening procedure. Exclusion of responses is done at the time of data analysis, based on specific criteria described below.

The total number of surveys administered in Phase IV was 7917. Section I is administered only to the person receiving services. A person’s responses are excluded if any of the following criteria are met:

The consumer responded to less than half of the questions in Section I.

The interviewer recorded that the person did not understand the questions being asked

The interviewer recorded that the person gave inconsistent responses.

After excluding incomplete and inconsistent responses, the number of valid respondents to Section I = 5372. Overall, 68% (5372/7917) of consumers in the total sample were able to respond to Section I of the direct interview. The “% Consumer Respondents Section I” column in Table 2 indicates the percentage of consumers who were able to respond to Section I, by state.

Section II allows multiple respondents. The “% Consumer Respondents Section II” column in Table 2 indicates that a consumer was one of the respondents to Section II. Other informants (e.g., family, friend, support worker) may have provided answers to some of the questions. In the analysis, if a respondent is excluded from Section I, his or her responses are also excluded from Section II. Otherwise, all responses to questions in Section II are included in the analysis, regardless of how many questions were answered. Thus, the consumer response rate to Section I may be lower than the response rate to Section II due to stricter criteria for including Section I responses. The number of valid responses to Section II = 7732. Overall, 63% (4836/7732) of consumers provided responses to Section II of the direct interview.

Sampling

The goal of each state was to conduct a minimum of 400 interviews. Each state drew a random sample of individuals over age 18 who were receiving at least one service, besides case management. Most states also drew an over-sample to account for refusals. Some states did not complete 400 interviews, and others exceeded this goal. Those that did

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not complete 400 are included in this report; however, readers are cautioned to take sample sizes into consideration when comparing results across states. Table 2 presents the number of surveys completed and response rates to each section, by state.

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Table 2. Valid Number of Surveys and Response Rates, By State

State Valid N

% Consumer

Respondents Section I

% Consumer

Respondents Section

IIAZ Arizona 554 64% 59%

RCOC California – Regional Center of Orange County 456 81% 83%

CT Connecticut 364 69% 65%DE Delaware 312 64% 61%HI Hawaii 508 54% 55%IA Iowa 412 77% 76%IL Illinois 439 70% 70%IN Indiana 562 71% 70%KY Kentucky 505 61% 57%NC North Carolina 510 69% 68%OK Oklahoma 401 44% 39%PA Pennsylvania 1394 71% 52%RI Rhode Island 379 65% 68%VT Vermont4 265 62% 62%WA Washington 320 64% 60%WV West Virginia 139 65% 59%WY Wyoming 397 75% 77%

TOTAL 7917

68% 63%

AdministrationMost participating states used the basic survey tool developed by the project. Vermont and Pennsylvania include NCI items in their own statewide survey tools. States used a variety of types of surveyors, including: consumers and families, university students, and state

4 The State of Vermont used a survey tool called the Self-Perceived Satisfaction Scale, developed by Susan Culbert, Ph.D. and Sara Burchard, Ph.D. of the University of Vermont. The survey has been in use for several years and has been adapted to align with the NCI Consumer Survey. One major difference in methodology is that Vermont only allows the interview to be completed by individuals receiving supports; surrogate responses are not accepted. Vermont contacted over 400 individuals to be interviewed. Given that surrogate responses are not accepted, the final sample of completed interviews is smaller than other states. However, Vermont’s consumer response rate is comparable to the other states. For the purposes of the NCI analysis, 241 completed interviews and 24 demographic-only cases were included. An additional twelve interviews were later included in the state’s own report, released in November 2002. The response rate of 62% is derived from the final number of people who completed surveys (ultimately 253) out of the total number of people who were contacted for an interview (410).

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personnel. Some independent interviewers were paid; others were unpaid volunteers. All of the above methods were acceptable and no major differences were noted in terms of using different types of interviewers. The only stipulation was that if case managers are used, they do not interview consumers on their own caseload.

Training“Train-the-trainer” sessions were provided to the lead agencies from each state. These trainings were conducted by conference call. The first part of the training reviewed the survey tool in detail, question by question. The second part reviewed general interviewing techniques. The participants, or “trainers” from each state, then conducted training with the actual interviewers. The project provided a packet of standardized materials (including scripts for contacting respondents, frequently asked questions, general interviewing tips and skill exercises) to be used at these in-state training sessions.

V. Data AnalysisNCI data management and analysis is coordinated by Human Services Research Institute (HSRI). Data is entered by each state, and files are submitted to HSRI for analysis. All data files received are reviewed for completeness and compliance with standard NCI formats. The data files are cleaned and merged, and invalid responses are eliminated. An outcome adjustment procedure is performed on selected outcomes.

Outcome AdjustmentOutcome adjustment or “risk adjustment” is a statistical process used to control for differences in the individual characteristics of people interviewed across states. This method effectively “levels the playing field” across states. It is necessary to perform this analysis because a state that has a broad eligibility definition (i.e., serves people with autism, brain injury, or other developmental disability) will probably have a sample that looks slightly different from a state that only serves people diagnosed with MR. Other reasons, such as sampling biases, may also affect the nature of the sample.

Only those indicators that are likely to be affected by individual characteristics are adjusted; the rest are not adjusted. For example, a person who has limited mobility and frequent seizures might be less likely to participate in shopping or other community activities. On the other hand, such characteristics should not affect whether a person has friends or has contact with his or her service coordinator. Items are “adjusted” using a logistic regression model. Earlier in NCI, a detailed analysis

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involving ICAP5 data determined a number of individual characteristics that were found to predict outcomes on the Consumer Survey. These individual characteristics are used as regression variables and include: age, gender, legal status, level of MR label, other diagnoses, primary means of expression, mobility, vision, frequency of seizures, frequency of medical care required, and presence of problem behavior.

The predicted values created by the logistic regression represent the “adjusted mean proportion” for each state. Essentially, the predicted value represents what one would expect the outcome to be if all factors were equal across samples. For outcomes that are adjusted, the column heading in the data table will read “Adjusted Mean Proportion.” The types of outcomes that are subject to adjustment include: Community Inclusion, Choice and Decision-making, some Access items, and some Rights items. Appendix A, Table A1 indicates the specific variables that are adjusted.

Scale DevelopmentFor the sub-domains of Community Inclusion, Choice and Decision-making, and Service Coordination, we were able to combine certain items into reliable scales. There are a total of four scales. The Community Inclusion scale and the two Choice scales were created using adjusted figures. The Service Coordination scale uses unadjusted figures. The scale scores are computed by averaging the values of a number of items. In order for a score to be computed, the person (or a proxy respondent) must have answered a minimum number of questions. Each scale is described in further detail in the results section of this report.

A scale can be considered a reliable measure if its internal consistency is >= 0.70. The statistic that assesses the scale’s reliability is called Cronbach’s alpha. In other words, if the alpha is >= 0.70, we can be fairly confident that items are measuring the same dimension. Alpha scores are also included in the results sections.

Significance TestingAll four scales were tested for significant differences across states, and between each state and the national average. Each state’s scale score was compared with the average scale score across all other states (not including that state). A conservative cutoff point (p>=0.01) was used to determine significant differences. These results are displayed below in table and map formats.

5 The Inventory for Client and Agency Planning is a tool that measures a variety of functional and behavioral characteristics.

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Analysis of variance is a collection of techniques used to test for differences among more than two groups. Post hoc (multiple comparison) tests provide information about which groups are different from each other. One such analysis, called Tukey’s test, was performed to determine “homogeneous subsets” of results, i.e., groups of states that are not significantly different from one another. Subsets are arranged by column and labeled with a number at the top of each column. Scores that fall in the same subsets are not significantly different.

VI. Results: Demographic Characteristics of Respondents First, we present descriptive information about the sample of respondents. Seventeen states administered the consumer survey in 2001-2002 and together conducted a total of 7917 interviews. The participating states represented are: AZ, CA – Regional Center Orange County (RCOC), CT, DE, HI, IA, IL, IN, KY, NC, OK, PA, RI, VT, WA, WV and WY. Respondent characteristics are summarized in the following tables.

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Table 3. Gender

N % Male % FemaleAZ 554 53.1 46.9

RCOC 455 57.8 42.2CT 364 56.3 43.7DE 312 52.6 47.4HI 508 55.3 44.7IA 411 53.8 46.2IL 439 58.5 41.5IN 562 58.4 41.6

KY 505 56.2 43.8NC 510 54.7 45.3OK 401 60.3 39.7PA 1393 55.7 44.3RI 379 51.2 48.8

VT 265 54.0 46.0WA 318 52.8 47.2WV 139 45.3 54.7WY 397 49.9 50.1

TOTAL 7912 55.1 44.9

Table 4. Race

N

% American Indian

orAlaska Native

%Asia

n6

%Black or African

American

% Native

Hawaiian &

Other Pacific

Islander

%Whit

e

% Othe

r

%Mixe

dRace

%Don’tKno

wAZ 538 10.4 0.2 3.9 0.0 68.6 13.6 1.7 1.7

RCOC 453 0.4 7.7 1.8 0.2 63.1 22.7 1.3 2.6CT 363 0.0 0.3 12.7 0.8 81.8 3.6 0.8 0.0DE 312 0.0 0.0 23.4 0.3 73.1 2.6 0.6 0.0HI 508 0.0 - 0.4 66.1 14.6 3.9 14.4 0.6IA 412 0.5 0.0 2.2 0.0 96.4 0.7 0.0 0.2IL 439 0.0 0.7 14.6 0.0 83.8 0.9 0.0 0.0IN 562 0.5 0.4 8.2 0.2 90.0 0.5 0.0 0.2

KY 505 0.2 1.2 7.9 0.0 88.1 2.4 0.2 0.0NC 510 0.8 0.4 33.5 0.0 64.3 0.4 0.4 0.2OK 401 4.0 - 11.0 0.0 83.5 0.7 0.7 0.0PA 139

10.2 0.4 3.6 0.2 94.0 1.1 0.3 0.2

RI 379 1.3 0.5 4.5 1.3 88.1 2.9 0.5 0.8VT 265 1.1 0.4 0.4 0.0 97.7 0.0 0.4 0.0

WA 316 1.6 1.6 2.2 0.6 88.9 2.5 1.3 1.3WV 139 0.7 0.0 6.5 0.0 92.1 0.0 0.7 0.0

6 Hawaii and Oklahoma used the 2000 version of the survey, which combined “Asian” and “Pacific Islander” into one category. Their percentages for “Asian/Pacific Islander” are reported under “Native Hawaiian& Other Pacific Islander.”

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WY 397 2.3 1.0 0.8 0.0 95.7 0.3 0.0 0.0TOTAL 789

01.4 0.9 7.7 4.5 80.1 3.5 1.4 0.5

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Table 5. Ethnicity

N%

Hispanic% Non-

Hispanic% Don’t

KnowAZ 546 28.0 68.1 3.8

RCOC 452 24.8 70.4 4.9CT 363 4.1 94.8 1.1DE 312 1.9 97.4 0.6HI 508 2.4 97.0 0.6IA 412 0.5 98.1 1.5IL 437 5.0 95.0 0.0IN 560 1.3 98.2 0.5

KY 505 0.8 90.5 8.7NC 508 0.6 99.2 0.2OK 400 1.5 98.5 0.0PA 1388 1.3 97.3 1.4RI 379 2.6 91.8 5.5

VT 253 0.4 99.6 0.0WA 319 2.8 94.7 2.5WV 133 0.8 98.5 0.8WY 397 2.5 95.7 1.8

TOTAL 7872 5.1 92.8 2.1

Table 6. Level of MR

N

% Had No MR

label % Mild

% Moderat

e%

Severe%

Profound

% Unspecifie

d or Unknown

AZ 543 5.2 42.0 30.0 12.5 7.7 2.6RCOC 456 9.9 37.1 29.8 14.0 8.6 0.7

CT 358 2.8 37.4 30.2 14.2 14.5 0.8DE 312 1.0 30.1 31.1 17.9 17.0 2.9HI 508 0.8 18.1 33.5 20.7 23.2 3.7IA 408 4.9 42.4 27.9 10.0 10.8 3.9IL 438 1.6 34.0 23.5 19.6 20.1 1.1IN 561 4.6 44.0 13.5 11.9 22.6 3.2

KY 505 3.4 33.9 27.5 17.8 15.6 1.8NC 495 6.9 37.2 24.0 14.9 16.0 1.0OK 401 0.2 31.9 18.5 15.2 32.7 1.5PA 1389 0.6 43.0 29.0 14.1 11.2 2.2RI 379 4.2 29.3 28.2 17.2 14.5 6.6

VT 265 1.9 76.2 17.0 2.3 0.4 2.3WA 311 8.4 30.5 25.1 13.5 19.9 2.6WV 139 5.0 31.7 23.7 19.4 10.8 9.4WY 397 7.8 47.6 25.4 10.8 7.1 1.3

TOTAL 7865 3.7 38.2 26.3 14.5 14.9 2.5

23

Table 7. Other Disabilities

% (Duplicated Counts) AZ RCOC CT DE HI IA IL IN KY NC OK PA RI VT WA WV WY Total

N 554 456 364 312 508 412 439 562 505 510 401 1394 379 265 320 139 397 7917Mental illness 17.9 15.4 30.9 21.6 5.7 32.3 29.2 27.4 29.9 38.6 15.5 32.5 23.5 23.8 20.8 23.7 26.7 25.4

Cerebral palsy 16.5 23.5 13.3 7.5 5.3 14.3 15.5 14.6 16.0 17.2 14.8 11.4 14.5 9.8 18.6 13.7 9.8 13.8Brain injury 1.8 3.5 3.9 1.9 N/A 4.6 3.6 2.9 7.3 4.8 N/A 3.5 5.3 8.3 4.7 3.6 0.8 3.9

Autism 4.9 5.1 5.2 8.1 3.0 8.2 5.2 10.7 5.0 6.4 3.3 3.3 5.5 2.6 5.0 2.2 2.8 5.1Chemical

dependency 0.9 0.7 0.8 0.9 0.2 0.6 2.3 0.7 0.4 3.0 1.3 0.1 0.5 0.8 0.3 0.7 1.0 0.8Seizure

disorder 26.3 27.9 22.4 23.1 2.6 23.9 28 26.2 1.4 25.1 4.5 20.8 28.5 N/A 32.1 28.1 18.4 20.5Vision or

hearing impairment 9.4 9.2 24.0 18.8 N/A 16.9 20.7 19.3 0.2 15.4 N/A 16.4 21.4 5.3 17.0 18.7 8.6 14.6

Communication disorder 10.3 5.1 19.9 13.0 N/A 19.6 29.8 14.4 0.0 7.6 N/A 11.3 18.2 N/A 17.0 18.7 1.5 12.4Physical

disability 6.7 7.5 16.0 13.6 N/A 14.5 18.2 14.9 0.0 11.0 N/A 13.1 15.3 2.3 17.6 15.8 49.6 13.9Alzheimer’s

disease 0.5 0.2 1.7 2.0 N/A 0.6 0.7 0.7 0.2 0.0 N/A 0.7 2.1 N/A 0.9 0.7 0.3 0.3

24

Table 8. Type of Residence

N

%Specialize

dFacility

%Grou

pHome

%Apartmen

tProgram

%Independen

tHome or

Apartment

% Parent orRelative'

sHome

% Foster Care

orHost Home

%Nursin

gFacility

%Othe

r

% Don’tKno

wAZ 552 6.2 22.3 2.9 18.3 42.4 3.3 0.2 3.8 0.7

RCOC 456 14.0 25.4 0.4 14.9 44.1 0.0 0.0 1.1 0.0CT 364 5.2 41.8 6.0 17.6 19.5 6.3 1.1 2.5 0.0DE 312 14.7 25.3 8.0 2.9 31.7 15.1 0.0 1.6 0.6HI 508 0.4 7.5 1.4 3.0 37.2 47.0 0.8 2.8 0.0IA 412 20.6 11.4 6.3 37.1 19.4 0.0 1.0 4.1 0.0IL 439 22.3 33.9 1.8 8.9 25.3 0.9 0.9 5.9 0.0IN 561 26.9 12.8 5.2 40.1 8.9 4.6 0.0 1.2 0.2

KY 505 12.7 27.7 3.8 7.1 32.7 11.5 1.8 2.6 0.2NC 505 8.5 25.1 5.7 8.9 37.4 5.5 1.2 7.5 0.0OK 401 17.5 18.2 1.2 54.1 1.2 5.2 0.0 2.0 0.5PA 1391 3.7 30.9 2.8 12.7 36.0 6.6 1.5 5.5 0.1RI 379 0.5 37.7 11.6 13.2 31.1 2.6 0.5 2.6 0.0

VT 264 0.0 4.2 2.7 25.4 31.1 30.7 1.9 4.2 0.0WA 319 11.6 3.8 5.3 33.9 27.3 4.4 3.1 10.0 0.6WV 139 4.3 10.1 5.8 22.3 46.8 5.8 2.2 2.9 0.0WY 397 2.3 56.4 9.6 12.8 13.1 3.0 0.5 0.0 2.3

TOTAL 7904 9.9 24.7 4.3 18.4 29.1 8.6 0.9 3.7 0.3

25

Table 9. Age

N MEAN MIN MAXAZ 554 39.1 19 78

RCOC 456 36.5 19 71CT 364 43.8 19 86DE 312 42.4 22 88HI 508 43.3 19 94IA 412 40.3 19 79IL 439 43.6 19 89IN 562 42.9 18 103

KY 505 41.5 20 80NC 510 38.9 19 79OK 401 37.0 20 51PA 1394 43.2 18 91RI 379 44.9 19 89

VT 265 40.9 20 89WA 320 40.5 19 84WV 139 40.8 20 77WY 397 41.1 19 78

TOTAL 7917 41.4 18 103

26

Demographic Profile of SampleThis section summarizes selected demographic characteristics of the overall sample.

» All states, with the exception of WV and WY, had a slightly higher percentage of males in their samples. Overall, the total sample was 55% male and 45% female.

Figure 1. Gender (N=7912)

» The average age of respondents was 41 years old, with a range of ages from 18 to 103.

» The reported levels of mental retardation among respondents varied by state. Overall, about 65% of the sample had a diagnosis of “mild” or “moderate” MR, and 29% had a diagnosis of “severe” or “profound” MR.

Figure 2. Level of MR (N=7865)

27

45%55%

MALEFEMALE

» 10% of respondents in the total sample used a nonverbal form of communication as their primary means of expression (e.g., gestures, sign language, communication device).

» The overall sample of respondents included small percentages of minority participation: 8% identified their race as Black or African American; 5% reported their race as Asian, Native Hawaiian, or Other Pacific Islander; and 5% reported their ethnicity as Hispanic. Another 5% reported their race as “Other” or “Mixed Race.” As expected, results by state vary, and some areas reflect high numbers of minority respondents -- most notably in AZ, CA-Orange County, CT, DE, HI, IL, NC, and OK.

» Overall, 29% of the total respondents live with their families, although this figure varies by state. The percent of respondents living in other types of homes is shown in the table below.

Figure 3. Type of Residence (N=7904)

28

Severe14.5%

Moderate 26.3%

Unkown 2.5%

No Label3.7%

Profound 14.9%

Mild38.2%

» The types of day/employment services and supports received by respondents varied by state. Overall, about 20% receive supported employment services, 8% receive group employment services, 37% receive facility-based vocational services, and 34% receive non-vocational day services.

» 53% of respondents in the overall sample receive Home and Community Based Waiver Services.

29

Outcome Adjustment VariablesSeveral variables related to individual characteristics are used to “adjust” certain consumer outcome results. The adjustment variables include demographic information such as age, gender, level of MR, and other disabilities diagnosed. Additional adjustment factors are displayed in the following tables, by state and for the sample as a whole.

Table 10. Consumer Legal Status7

N % Legally Competent Adult % Private Guardian % State/County

GuardianAZ 523 37.7 52.0 10.3


KY 498 35.9 43.0 21.1NC 486 44.4 48.6 7.0OK 399 34.6 63.2 2.3PA 1290 78.7 19.9 1.4RI 378 79.4 20.6 0.0

VT 262 38.9 37.8 23.3WA 283 37.1 62.5 0.4WV 131 45.0 46.6 8.4WY 397 7.8 92.2 0.0

TOTAL 7586 49.9 42.9 7.2

7 “Don’t know” responses are excluded.

30

Table 11. Primary Means of Expression8

N%

Speaks English

% Speaks Other

Primary Language

% Uses Gestures

% Uses Sign

Language

% Uses Communication

Device%

Other

AZ 541 73.8 4.3 16.1 1.7 0.6 3.7RCOC 448 72.1 10.5 10.9 0.7 1.6 4.2

CT 361 76.5 0.8 16.3 1.7 1.4 3.3DE 310 72.3 0.3 15.8 2.3 2.6 6.7HI 507 66.9 1.4 15.6 2.4 0.8 13.0IA 409 82.4 0.5 8.1 1.2 0.5 7.3IL 439 71.8 0.5 14.8 2.3 1.8 8.9IN 555 74.2 0.4 14.4 3.2 2.0 5.8

KY 504 69.3 0.0 21.0 1.4 2.0 6.4NC 497 78.1 0.2 12.9 2.2 1.2 5.4OK 401 63.3 0.0 12.7 1.5 2.2 20.2PA 1392 79.8 0.7 14.3 1.5 1.2 2.7RI 379 74.7 1.3 12.9 1.3 1.9 7.9

VT 264 85.6 0.0 14.4 0.0 0.0 0.0WA 316 69.8 0.3 17.4 1.6 2.3 8.5WV 139 77.0 0.0 12.2 2.9 1.4 6.5WY 396 88.1 0.3 6.6 2.8 0.8 1.5

TOTAL 7884 74.8 1.3 14.0 1.8 1.4 6.2

8 “Don’t know” responses are excluded.

31

Table 12. Level of Mobility

N % Walks With or Without Aid % Non Ambulatory

AZ 546 89.2 10.7RCOC 454 84.6 15.4

CT 362 90.3 9.6DE 312 86.9 13.1HI 508 84.8 15.2IA 409 91.0 9.0IL 439 84.8 16.4IN 560 88.4 11.6

KY 501 83.2 16.6NC 475 83.4 16.6OK 401 78.8 21.2PA 1383 88.4 11.6RI 379 86.3 13.7

VT 264 94.3 5.7WA 310 80.0 19.4WV 138 89.1 10.8WY 396 91.9 8.1

TOTAL 7837 86.7 13.2

Table 13. Vision9

N % Sees Well% Vision

Problems Limit Activities

% Limited or No Vision/Legally

BlindAZ 529 88.1 5.5 6.4


KY 489 85.3 8.2 6.5NC 427 83.4 8.9 7.7OK 396 86.4 6.8 6.8PA 1353 89.3 5.5 5.2RI 377 84.9 7.2 8.0

VT 265 92.5 4.2 3.4WA 275 76.4 14.5 9.1WV 136 87.5 6.6 5.9WY 396 90.4 6.8 2.8

TOTAL 7664 87.2 7.0 5.8

9 “Don’t know” responses excluded.

32

Table 14. Frequency of Seizures

N % N/A% Less

ThanOnce/ Month

% Once/ Month

% Once/ Week

% More Than

Once/ Week

% Don’t Know

AZ 548 69.5 13.1 2.9 0.9 3.6 9.9RCOC 454 74.0 16.1 2.6 2.4 3.5 1.3

CT 355 77.5 15.2 1.4 0.3 2.5 3.1DE 312 75.3 15.1 2.6 0.6 1.3 5.1HI 508 89.2 4.7 1.4 1.0 1.4 2.4IA 408 79.9 11.8 1.5 2.0 2.2 2.7IL 439 73.1 22.6 1.8 0.9 0.7 0.9IN 561 74.5 18.5 3.6 0.9 1.2 1.2

KY 505 82.8 9.7 2.2 1.4 2.2 1.8NC 497 73.6 17.5 1.4 0.4 3.4 3.6OK 401 82.8 6.5 3.5 1.7 4.2 1.2PA 1381 74.2 13.7 2.5 1.2 2.0 6.4RI 379 74.1 14.0 3.7 1.6 1.6 5.0

VT Not available

WA 305 59.0 13.1 3.6 1.3 5.2 17.7WV 139 69.8 12.2 4.3 2.9 3.6 7.2WY 397 77.1 8.6 5.0 5.3 1.5 2.5

TOTAL 7589 75.8 13.4 2.6 1.4 2.4 4.4

Table 15. Frequency of Medical Care Required

N% Less

Than Once/ Month

% Once/ Month

% Once/ Week

% Once/ Day

% Requires 24-Hour Access

% Don’t Know

AZ 545 72.7 9.4 1.5 0.6 0.0 12.8RCOC 452 67.7 16.6 1.1 1.5 3.5 9.5

CT 358 65.9 17.0 7.3 3.1 3.6 3.1DE 312 60.9 8.7 1.9 6.4 9.6 12.5HI 508 89.4 6.9 0.6 0.0 0.6 2.6IA 411 67.6 11.4 3.9 2.2 9.5 5.4IL 439 79.5 9.6 2.1 5.2 3.2 0.5IN 562 75.4 13.9 3.6 1.4 4.6 1.1

KY 505 66.5 9.5 2.0 1.0 11.1 9.9NC 498 77.5 12.7 2.0 2.4 2.4 3.0OK 401 63.8 25.2 5.2 4.2 1.5 0.0PA 1384 75.0 11.9 1.3 1.0 3.1 7.7RI 379 51.2 19.0 13.7 2.6 6.9 6.6

VT 265 95.1 4.9 0.0 0.0 0.0 0.0WA 307 49.8 10.1 2.3 4.9 11.1 21.8WV 139 70.5 24.5 1.4 2.9 0.0 0.7WY 397 49.4 14.9 15.1 8.8 2.0 9.8

TOTAL 7862 70.5 12.7 3.5 2.5 4.4 6.5

33

Table 16. Presence of Self-Injurious Behavior

N % No %Yes % Don’t Know

AZ 526 81.2 15.2 3.6RCOC 453 86.5 12.8 0.7

CT 323 79.3 19.2 1.5DE 311 83.0 16.1 1.0HI 508 87.4 9.8 2.8IA 404 78.7 20.5 0.7IL 439 82.9 16.9 0.2IN 556 77.9 21.2 0.9

KY 504 73.6 25.2 1.2NC 473 78.2 19.2 2.5OK 401 76.1 23.7 0.2PA 1384 81.6 15.5 2.8RI 379 79.2 20.6 0.3

VT 265 85.7 14.3 0.0WA 279 69.9 19.4 10.8WV 139 82.0 17.3 0.7WY 396 93.2 6.8 0.0

TOTAL 7740 81.0 17.1 1.8

Table 17. Presence of Disruptive Behavior

N % No % Yes % Don’t Know

AZ 526 67.3 27.8 4.9RCOC 454 66.7 33.0 0.2

CT 324 64.8 34.0 1.2DE 311 64.0 34.1 1.9HI 508 73.4 24.0 2.6IA 405 60.2 39.8 0.0IL 439 65.4 34.4 0.2IN 556 60.8 38.7 0.5

KY 502 60.6 38.4 1.0NC 472 57.4 40.0 2.5OK 401 63.3 36.4 0.2PA 1385 71.6 25.7 2.7RI 379 62.5 36.9 0.5

VT 265 74.7 25.3 0.0WA 277 60.3 30.0 9.7WV 139 60.4 39.6 0.0WY 396 82.6 17.4 0.0

TOTAL 7474 66.1 32.0 1.9

34

Table 18. Presence of Uncooperative Behavior

N % No % Yes % Don’t Know

AZ 528 70.5 24.1 5.5RCOC 454 74.2 25.1 0.7

CT 322 67.4 31.1 1.6DE 311 64.0 34.4 1.6HI 508 73.4 24.0 2.6IA 404 65.8 33.9 0.2IL 439 67.9 32.1 0.0IN 554 61.7 37.4 0.9

KY 504 67.7 31.5 0.8NC 470 60.4 37.4 2.1OK 401 61.3 38.4 0.2PA 1384 72.0 24.8 3.2RI 379 74.4 25.3 0.3

VT 265 75.5 24.5 0.0WA 279 67.4 21.1 11.5WV 139 68.3 31.7 0.0WY 396 77.0 23.0 0.0

TOTAL 7737 69.0 29.0 2.0

35

VII. Results: Core Indicator Outcomes and Comparisons across StatesThe data from the Consumer Survey were analyzed to assess core indicator outcomes for the sample as a whole and separately by state. The following brief summary highlights national results from the FY2002 NCI data collection and compares results to the previous year, where possible.

Summary of Aggregate Results

Community Inclusion

» For most types of community activities asked about in the survey, participation was high, ranging from 69% to 96%. Two activities had lower participation: 56% attended religious services, and 32% reported belonging to clubs or community organizations. On most items, scores were about the same as FY2001 results.

Figure 4. Community Inclusion – Adjusted Results for Total Sample

36

0%20%40%60%80%

100%

Religio

us S

vcs

Exerci

se

Enterta

inmen

t

Eat Out

Shopp

ing

Errand

s

FY2001 FY2002

Respect and Rights

» In FY2002, 92% of all respondents report that they have enough privacy.10

» In FY2002, 28% of all respondents reported having attended a self-advocacy group meeting or event.11

» Across the board, over 90% of respondents in FY2002 report that support staff (at home, day program, and jobs) treat them with respect. This result is similar to FY2001.

Service Coordination

» 77% of all respondents report that service coordinators get them what they need, compared with 90% in FY2001.

Access

» In FY2002, 79% of respondents reported that they almost always have a way to get where they want to go. These results are the same as in FY2001.

Satisfaction

» In FY2002, satisfaction with home was 94% and satisfaction with work/day program was 96%. These results are the same as in FY2001.

10 Results are not comparable to FY2001 due to change in wording of question on survey.11 Results are not comparable to FY2001 due to change in wording of question on survey.

37

Relationships

» Similar to FY2001 and FY2000, the majority of respondents report having friends (other than family and staff), best friends, and being able to see their friends and family when they want to.

» In FY2002, a little less than half of the respondents (48%) reported “sometimes” or “always” feeling lonely.12

Figure 5. Relationships – Results for Total Sample

Safety

» 80% of respondents reported feeling safe in their homes, and 81% reported feeling safe in their neighborhood.13

12 Results are not comparable to FY2001 due to change in wording of question on survey.13 Results are not comparable to FY2001 due to change in response options on survey.

38

0%

20%

40%

60%

80%

100%

Can see family Can see friends Have closefriends

Have friends

FY2001 FY2002

Health

» Across the board, women’s access to yearly OB/GYN exams continues to be low (only 52% had an exam in the past year and 7% have never had one).

Figure 6. Time of Last Physical Exam

Figure 7. Time of Last Dental Exam

39

DK9%

over a year ago9%

within past year82%

DK19%

over 6 months ago31%

within last 6 months

50%

Figure 8. Time of Last GYN Visit

40

within past year52%

over a year ago15%

never 7%

DK27%

Presentation of Detailed Results by StateThe results are organized according to the current list of Core Indicators14. Each section represents one Sub-domain and contains the following information:

Concern statement for the Sub-domain

Indicators in that Sub-domain measured by the Consumer Survey

Explanation of how the scale score was computed, if applicable

Statistics provided for all indicators:

Mean proportion (either adjusted or non-adjusted) for each state and for the total sample

Two “summary” measures are displayed. (1) The “TOTAL” row is simply the aggregate of all responses across all states. This measure does not take into account the different state sample sizes. (2) The “STATE AVERAGE” row represents the mean across all states. Thus, all states are equally represented in this measure, regardless of sample size.

Valid N for each state and for the total sample

Additional statistics provided only for scale scores (Community Inclusion, Supports-Related Choices, Personal Choices, and Service Coordination):

Significance testing for each state vs. the national average

Significant differences among states (Tukey’s test)

The results for the states are indicated by the two letter abbreviations.

Tables that display “adjusted” results are so noted. For these indicators, the sample sizes may be slightly smaller because cases that are missing data for the adjustment variables drop out of the analysis.

Question-by-question, “raw” results are included in Appendix C of this report. States may find the raw results useful for probing further into the breakdown of responses to specific questions.

14 The current version is Phase V Core Indicators (in draft).

41

Broadly, the “STATE AVERAGE” figures constitute benchmarks for comparing states. For example, when a particular state’s mean score is appreciably higher than the cross-state average, the quality or characteristic is better reflected in the state’s system than in others.

On the other hand, in states where the mean score is appreciably lower than the cross-state average, then there is a valid basis for stakeholders to probe further.

In no instance should the cross-state averages be interpreted as necessarily defining “acceptable” levels of performance or satisfaction. Instead, they are a multi-state “norms” that describe present levels of performance or satisfaction across the participating states. Where no significant differences were found state-to-state, it means that all states are performing about the same. Where significant differences were found and scores are especially high (considerably above the average level) in one or two states, the levels of satisfaction achieved there might define a level of performance that may serve as a guidepost for other states.

Phase III (FY2001) data are not presented in this report. At this stage of NCI, comparisons of results from year to year should be made with caution, for two reasons: (1) even slight changes in wording or response options of certain questions may affect comparability of results from one year to the next; and (2) the mix of participating states differs slightly each year and may affect the “total sample” results.

42

Consumer Outcomes: WorkThe Work Sub-domain has the following concern statement: “People have support to find and maintain community integrated employment.” There are six work indicators measured using the supplement to the Consumer Survey:

1. The average monthly earnings of people who have jobs in the community.

2. The average number of hours worked per month for people with jobs in the community.

3. The percent of people earning at or above the state minimum wage.15

4. Of people who have a job in the community, the percent who were continuously employed during the previous year.

5. Of people who have a job in the community, the percent who receive job benefits.

6. Of people who have a job in the community, the average length of time people have been working at their current job.

*IMPORTANT NOTE ABOUT THE DATA SOURCE*

A review of previous data collection efforts concluded that the most preferable way to collect the employment data was through the Consumer Survey supplement, unless a state already had a good system in place for obtaining the information from providers (e.g., Vermont, Washington, Wyoming). Massachusetts decided to create a new reporting system (adapted from the original Provider Survey protocol) that would require provider agencies by contract to report employment information on an annual basis. One advantage to using the Consumer Survey supplement is the potential ability to link the employment information with other person-level data collected in the survey. The major drawback at this time is that the information is only collected on a sample of the service population (usually about 400 individuals), and once the data is broken down by type of employment, the Ns are very small in some categories. For example, in the table below, Iowa’s figures for “group supported employment” are based on earnings data for 6 individuals and hours data for only 3 individuals. These Ns are much too small to draw any significant conclusions about Iowa’s performance in this category.

The current version of the supplement form is entitled “Day/Vocational/Educational Support” and expands on the basic survey

15 Not reported for Phase IV.

43

by requesting additional information about competitive employment, enrollment in public school, funding streams, job benefits, and length of employment in the community.

In Phase IV, eight states collected data using the Consumer Survey supplement (CA – RCOC, CT, DE, IA, IN, NC, PA, WV) and three states submitted data from their own systems (VT, WA, WY). Data extracted from state systems are from FY2001. Data collected using the Consumer Survey supplement are from FY2002.

44

Table 19. Employment Data Collected from Consumer Survey Supplement FY2002 – Earnings and Hours Per Month, By State

State Category of employment Average Monthly

Earnings

MIN MAX N Average Hours per

Month

MIN MAX N

RCOC

Competitive (No Data Available)Individual supported $525.13 $54.00 $1,800.00 44 75.6 8 165 46Group Supported $219.40 $3.00 $946.66 66 55.5 2 143 67Facility Based Work Program $79.35 $2.00 $507.21 77 97.6 6 161 82Facility Based Non Work Activities 102.2 8 144 78Community Based Non Work Activities 98.5 4 138 95

CT

Competitive $395.82 $100.00 $744.00 17 78.8 10 180 18Individual supported $290.27 $32.66 $672.00 15 53.9 1 100 15Group Supported $189.49 $200.00 $837.00 41 64.7 4 127 48Facility Based Work Program $153.20 $6.00 $1,200.00 24 64.4 10 120 25Facility Based Non Work Activities 84.6 4 147 24Community Based Non Work Activities 70.4 1 140 38

DE

Competitive (No Data Available)Individual supported $600.93 $13.00 $1,522.50 14 91.6 7 160 13Group Supported $405.87 $0.58 $1,148.11 29 76.1 1 170 29Facility Based Work Program $48.39 $0.01 $472.62 91 47.1 2 118 93Facility Based Non Work Activities 76.7 4 148 148Community Based Non Work Activities 18.8 1 120 75

IA

Competitive $237.19 $8.14 $500.00 9 40.1 11 120 11Individual supported $246.26 $23.43 $568.43 13 32.3 6 64 11Group Supported $55.30 $6.06 $160.00 6 18.0 4 30 3Facility Based Work Program $106.25 $0.17 $609.33 59 66.8 2 140 56Facility Based Non Work Activities 64.6 1 140 27Community Based Non Work Activities 17.6 2 104 17

Table 20. Employment Data Collected from Consumer Survey Supplement FY2002 – Earnings and Hours Per Month, By State (Continued)

45

State Category of employment Average Monthly

Earnings

MIN MAX N Average Hours per

Month

MIN MAX N

IN

Competitive $419.07 $20.00 $1,543.25 56 71.5 4 172 56Individual supported $355.99 $6.20 $1,041.00 42 56.3 1 160 47Group Supported $162.02 $20.00 $525.57 12 87.9 15 200 13Facility Based Work Program $105.39 $0.29 $884.00 147 65.9 1 160 159Facility Based Non Work Activities 73.2 1 180 100Community Based Non Work Activities 29.9 1 140 138

NC


PA

Competitive $401.85 $5.50 $2,000.00 76 72.6 3 200 84Individual supported $305.50 $2.48 $1,200.00 42 57.0 2 160 57Group Supported $154.67 $7.73 $350.00 26 53.4 2 200 33Facility Based Work Program $103.61 $0.78 $2,000.00 361 89.6 1 200 439Facility Based Non Work Activities 85.2 1 200 393Community Based Non Work Activities 49.8 3 184 180

WV


46

Table 21. Employment Data Collected from Consumer Survey Supplement FY2002 – Summary of Monthly Earnings, All States

Category of employment Mean Monthly Earnings for Total Sample

Average Across Eight States

Competitive $387.27 $346.20Individual supported $365.72 $332.95Group Supported $213.72 $173.77Facility Based Work Program $93.49 $93.75

Table 22. Employment Data Collected from Consumer Survey Supplement FY2002 – Summary of Monthly Hours Worked, All States

Category of employment Mean Hours Worked per Month for Total Sample

Average Across Eight States

Competitive 69.1 63.2Individual supported 60.3 54.0Group Supported 62.1 61.4Facility Based Work Program 79.1 72.4

Table 23. Employment Data Collected from Consumer Survey Supplement FY2002 – Community Employment Indicators, By State

% Continuously Employed16

% Who Receive Benefits

Number of Years at Current Job

% Valid N % Valid N Mean MIN MAX Tot NRCOC 75.2 113 14.2 113 3.8 1.1 11.6 44

CT 46.8 79 48.1 77 5.7 1.1 13.1 23DE 46.2 39 30.8 39 2.8 0.5 6.3 19IA 73.9 23 17.4 23 4.1 0.8 8.0 9IN 80.4 107 31.8 107 4.3 0.1 30.0 108NC 73.0 74 21.6 74 3.0 0.1 14.0 49PA 72.1 154 17.4 144 3.5 0.1 16.1 82WV 27.8 18 61.1 18 3.5 0.1 14.3 20

16 “Continuously employed” is defined as working 10 out of the previous 12 months in a community job.

47

The two tables below display additional information about the sample of respondents in each state who reported employment data on the Consumer Survey supplement.Table 24. Percent of Respondents Enrolled in Public School

% Yes Tot NCA - RCOC 12.8 453

CT 4.0 174DE 0.5 198IA 1.9 106IN 5.4 538NC 1.1 298PA 6.0 1338

Table 25. Funding Sources of Day/Vocational Services Received by Respondent

% HCBS Waiver

Program

% State MR/DD Agency

% Voc Rehab

Agency% PAS/IRWE % Other % N/A Total N

CA - RCOC 8.7 39.8 26.4 0.2 10.5 20.2 448CT 20.3 72.7 5.2 1.2 3.5 7.0 172DE 41.0 85.6 1.6 0.5 13.6 0.5 195IA 12.4 12.4 4.8 0.0 59.0 13.3 105IN 10.1 45.4 8.2 0.4 18.4 15.5 527NC 71.0 16.6 9.9 0.0 17.5 15.9 314PA 51.1 17.2 3.5 0.3 13.3 13.0 1234

48

The following table displays employment indicators for the three states that submitted state data system information. Note: these data are from FY2001.

Table 26. Average Monthly Earnings and Average Hours Worked per Month, by State (Source: State Data Systems FY2001)

State Category of employment Average Monthly Wage

Average Hours Worked per

MonthN of Consumers

VT

Facility Based Work Program $101.70 47.30 30

Group Supported $134.59 43.00 16

Individual Supporteda $385.30 56.33 707

Overall $381.12 57.92 736

Source: Vermont FY 2001 Survey of Employment/Vocational Services

WA

Facility Based Work Program $133.10 123.32 1213

Group Supported $314.97 81.82 1074

Individual Supported $720.69 87.90 1835

Overallb $442.07 96.74 4122

Source: Washington Division of Developmental Disabilities Cost Benefit Analysis Report June 2001

WY

Facility Based Work Program $154.00 48.00 N/A

Group Supported None None None

Individual Supported $311.00 69.00 N/A

Competitive $353.00 65.00 N/A

Overall $209.52 53.75 547

Source: Wyoming Division of Developmental Disabilitiesa For VT, the “Individual Supported” line includes both categories “Competitive” and “Individual Supported” employment.b Overall figures for WA may include duplicate counts for people who receive more than one type of employment support.

49

Consumer Outcomes: Community InclusionThe Community Inclusion Sub-domain has the following concern statement: “People use integrated community services and participate in everyday community activities.” There is one indicator listed:

1. The proportion of people who participate in everyday integrated activities in their communities.

Seven items from the consumer survey are grouped together to create a composite “scale score” for Community Inclusion. All seven of these items are first “risk adjusted” using a logistic regression model to control for differences in respondent characteristics (e.g., level of MR, age, mobility, etc.) across states. The predicted values created by the logistic regression represent the “adjusted mean proportion” for each state. A separate regression analysis is performed for each item. The scale score is then computed by averaging the predicted values of all seven items. In order for a score to be computed, the person (or a proxy respondent) must have answered at least five out of seven questions. The seven items look at whether or not people:

Go shopping Go out on errands or appointments Go out for entertainment Go out to eat Go to religious services Go to clubs or community meetings Exercise or play sports

A scale can be considered a reliable measure if its internal consistency is >= 0.70. The statistic that assesses the scale’s reliability is called Cronbach’s alpha. An internal reliability test of the Community Inclusion scale resulted in a Cronbach’s alpha = 0.89. This result attests to the high reliability of the scale. In other words, we can be fairly confident that all seven items are measuring the same dimension. Each state’s scale score was compared with the average scale score across all other states (not including that state). The table on the right displays each state’s scale score compared with the average across all other states, and the last column indicates whether or not the state’s score was significantly different from the average. A conservative cutoff

50

Table 27. Community Inclusion Scale Scores by State, Compared to

National AverageState Scale Score

Average Across All

Other States

Sig. at p>=0.01

VT 0.836 0.784 YESCA - RCOC 0.812 0.784 YES

IA 0.804 0.785 YESWY 0.804 0.785 YESAZ 0.796 0.785 NOWV 0.795 0.786 NOHI 0.790 0.785 NOPA 0.790 0.785 NONC 0.788 0.786 NOCT 0.785 0.786 NOIN 0.784 0.786 NOIL 0.773 0.787 NO

OK 0.773 0.786 NORI 0.769 0.787 YESKY 0.768 0.787 YESDE 0.766 0.787 YESWA 0.719 0.788 YES

point (p>=0.01) was used to determine significant differences. Figure 1 on the next page displays state performance on the Community Inclusion scale in a map format. Those states colored in dark grey performed above average, those with horizontal stripes performed below average, and those in light grey were no different from the average.

51

Figure 9. Community Inclusion: State Scale Scores Compared with National Average

52

Above average

scoreNo difference

Below average score

IN

AZ

UT

NC

IL

IA

OK

WV

KY

PA

DE

VT

CT

MT

WY

NE

HI

IN

AZ

NC

IL

IA

OK

WV

KY

PARIWY

NE

HI

Orange County AL

SD

SC

MEWA

Analysis of variance is a collection of techniques used to test for differences among more than two groups. Post hoc (multiple comparison) tests provide information about which groups are different from each other. One such analysis, called Tukey’s test, was performed to determine “homogeneous subsets” of results, i.e., groups of states that are not significantly different from one another. The following table displays the results of the Tukey’s test. Subsets are arranged by column and labeled with a number at the top of each column. Scores that fall in the same subsets are not significantly different. For example: Indiana’s score of 0.78 spans across subsets 2, 3, and 4. Therefore, Indiana’s result is not significantly different from any of the other states that fall in subsets 2, 3, or 4. It is, however, significantly different from Washington State (which only falls in subset 1), and Vermont (which only falls in subset 5). Another way to interpret these results is to use the minimum significant difference, which is estimated at 0.03 for the Community Inclusion scale. Using the Indiana example, any state with a score less than 0.75 or greater than 0.81 would be significantly different from Indiana.

Table 28. Community Inclusion Scale Scores, by Subsets of States

Subset for alpha = .05State N 1 2 3 4 5

WA 274 0.72DE 304 0.77KY 501 0.77RI 375 0.77

OK 397 0.77 0.77IL 436 0.77 0.77IN 549 0.78 0.78 0.78

CT 335 0.79 0.79 0.79NC 367 0.79 0.79 0.79PA 1255 0.79 0.79 0.79HI 504 0.79 0.79 0.79

WV 139 0.79 0.79 0.79AZ 518 0.80 0.80 0.80WY 356 0.80 0.80 0.80

IA 310 0.80 0.80 0.80CA - RCOC 438 0.81 0.81

VT 260 0.84

The following seven tables display the results for each item that comprises the Community Inclusion Scale. Results are ordered from highest to lowest scores by state. The “adjusted” mean proportions are displayed. “State average” represents the average score across states, weighted by sample size. This figure is computed by simply adding up the adjusted mean proportion scores and dividing by the number of states. The “Total” figure represents all cases aggregated across all seventeen states. When making comparisons, it is preferable to use the State average, since this figure accounts for differences

53

in sample size. Unadjusted, raw data frequencies for these items are displayed on pp. 92-95 of Appendix C.

54

Table 29. Proportion of people who go shopping

State Valid N Adjusted Mean ProportionVT 260 96%

WY 356 94%IA 310 94%

RCOC 438 94%WV 139 93%AZ 518 93%PA 1255 93%HI 504 93%

NC 367 93%IN 549 93%

KY 501 93%OK 397 93%CT 335 93%IL 436 93%RI 375 92%

DE 304 92%WA 274 90%

State average 93%Total 7318 93%

Table 30. Proportion of people who go out on errands or appointments


WV 139 97%IA 310 97%

WY 356 96%NC 367 96%PA 1255 96%

RCOC 438 96%CT 335 96%AZ 518 96%IN 549 96%HI 504 96%IL 436 96%

KY 501 96%RI 375 96%

DE 304 96%OK 397 95%WA 274 95%


55

Table 31. Proportion of people who go out for entertainment

State Valid N Adjusted Mean ProportionOK 397 87%WY 356 86%

HI 504 86%VT 260 85%IA 310 85%

RCOC 438 85%IL 436 84%

KY 501 84%IN 549 84%

NC 367 84%WV 139 84%AZ 518 84%CT 335 84%DE 304 83%PA 1255 83%RI 375 82%

WA 274 81%State average 84%

Total 7318 84%

Table 32. Proportion of people who go out to eat


RCOC 438 92%IA 310 92%

PA 1255 92%AZ 518 91%

WV 139 91%IN 549 91%

NC 367 91%CT 335 91%

WY 356 90%RI 375 90%IL 436 90%

DE 304 90%KY 501 90%HI 504 90%

WA 274 88%OK 397 88%


56

Table 33. Proportion of people who go to religious services

State Valid N Adjusted Mean ProportionRCOC 438 57%

WV 139 57%PA 1255 57%VT 260 57%AZ 518 56%DE 304 56%IA 310 56%

CT 335 56%WY 356 56%

HI 504 56%NC 367 55%RI 375 55%IN 549 55%IL 436 54%

WA 274 54%KY 501 54%OK 397 53%


Table 34. Proportion of people who go to clubs or community meetings


RI 375 33%PA 1255 33%AZ 518 32%IA 310 32%

CT 335 32%NC 367 32%WV 139 32%

IN 549 31%DE 304 31%IL 436 30%

WY 356 30%KY 501 30%HI 504 30%

WA 274 29%OK 397 29%


57

Table 35. Proportion of people who exercise or play sports


WY 356 74%HI 504 72%

OK 397 72%IA 310 71%

AZ 518 70%WV 139 70%

RCOC 438 70%NC 367 70%CT 335 70%IL 436 70%IN 549 69%

KY 501 69%PA 1255 69%DE 304 68%RI 375 66%

WA 274 64%State average 70%

Total 7058 70%

58

Consumer Outcomes: Choice and Decision-MakingThe Choice and Decision-Making Sub-domain has the following concern statement: “People make choices about their lives and are actively engaged in planning their services and supports.” The two indicators listed are:

1. The proportion of people who make choices about their everyday lives.2. The proportion of people who report having been provided options about

where to live and work.

The Consumer Survey includes eleven choice items. Two scales were created using the adjusted mean proportions of nine items. These two scales measure the first indicator. The first scale, called “Support-Related Choices,” is composed of five items. These items indicate whether people chose (or had some input in choosing):

Place where they live (if not living with family) Staff who help at home Work or day activity Staff who help at work Case manager/service coordinator

In order for a score to be computed, the person (or a proxy respondent) must have answered at least four out of five questions. Internal consistency of the Supports-Related Choices scale was high, with a Cronbach’s alpha of 0.92.

The second scale, called “Personal Choices,” includes four items. These items indicate whether people choose (or have some input in choosing):

People they live with (if not living with family) Daily schedule How to spend free time What to buy with spending money

In order for a score to be computed, the person (or a proxy respondent) must have answered at least three out of four questions. Internal consistency of the Personal Choices scale was high, with a Cronbach’s alpha of 0.95.

Each state’s scale score was compared with the average scale score across all other states (not including that state). The tables below display each state’s scale score compared with the average across all other states, and the last column indicates whether or not the state’s score was significantly different from the average. A conservative cutoff point (p>=0.01) was used to determine significant differences.

Figures 2 and 3 on the following pages display state performance on the Supports-Related Choices and Personal Choices scales in a map format. Those states colored in dark grey performed above average, those with horizontal

59

stripes performed below average, and those in light grey were no different from the average.

60

Table 36. Supports-Related Choices Scale Scores by State, Compared to

National Average

Table 37. Personal Choices Scale Scores by State, Compared to


Average Across All

Other States

Sig. at p>=0.01

State Scale Score

Average Across All

Other States

Sig. At p>=0.01

WY 0.764 0.608 YES VT 0.857 0.747 YESVT 0.764 0.608 YES CA – RCOC 0.800 0.748 YESAZ 0.653 0.610 YES PA 0.784 0.744 YES

CA - RCOC 0.649 0.611 YES WY 0.783 0.749 YESIA 0.639 0.612 NO IA 0.768 0.750 NOCT 0.628 0.613 NO AZ 0.766 0.750 NOPA 0.613 0.614 NO RI 0.752 0.751 NONC 0.613 0.613 NO CT 0.750 0.751 NOWV 0.607 0.614 NO IN 0.748 0.751 NOIN 0.600 0.615 NO WV 0.742 0.751 NOKY 0.594 0.615 NO NC 0.735 0.752 NOIL 0.587 0.615 YES KY 0.725 0.753 YESRI 0.574 0.616 YES DE 0.718 0.752 YES

WA 0.569 0.615 YES IL 0.711 0.753 YESDE 0.566 0.615 YES HI 0.706 0.754 YESOK 0.559 0.617 YES WA 0.690 0.753 YESHI 0.552 0.618 YES OK 0.681 0.755 YES

61

Figure 10. Support-Related Choices: State Scale Scores Compared with National Average

62

Above average

No difference

WA

IN

AZ

UT

NC

IL

IA

OK

WV

KY

PA

DE

VT

CT

MT

WY

NE

HI

IN

AZ

NC

IL

IA

OK

WV

KY

PARIWY

NE

HI

Orange County

AL

SD

SC

ME

Below average score

Figure 11. Personal Choices: State Scale Scores Compared with National Average

63

WA

IN

AZ

UT

NC

IL

IA

OK

WV

KY

PA

DE

VT

CT

MT

WY

NE

HI

IN

AZ

NC

IL

IA

OK

WV

KY

PARIWY

NE

HI

Orange County

AL

SD

SC

ME

Above average

scoreNo difference

Below average score

Tukey’s tests were also performed to determine which states were significantly different from one another on each scale. Scores that fall into the same subsets are not significantly different. For the Support-Related Choices scale, the minimum significant difference is estimated at 0.05. For the Personal Choices scale, the minimum significant difference is estimated at 0.04.

Table 38. Support-Related Choices Scale Scores, by Subsets of States

Subset for alpha = .05State N 1 2 3 4 5 6

HI 504 0.55 OK 397 0.56 0.56 DE 304 0.57 0.57 0.57 WA 274 0.57 0.57 0.57

RI 375 0.57 0.57 0.57 IL 436 0.59 0.59 0.59 0.59

KY 501 0.59 0.59 0.59 0.59 IN 549 0.60 0.60 0.60 0.60 0.60

WV 139 0.61 0.61 0.61 0.61 NC 367 0.61 0.61 0.61 PA 1255 0.61 0.61 0.61 CT 335 0.63 0.63 IA 310 0.64 0.64

CA- RCOC 438 0.65 AZ 518 0.65

WY 356 0.72VT 260 0.76

Table 39. Personal Choices Scale Scores, by Subsets of States

Subset for alpha = .05State N 1 2 3 4 5 6 7

OK 397 0.68WA 274 0.69 0.69

HI 504 0.71 0.71 0.71IL 436 0.71 0.71 0.71

DE 304 0.72 0.72 0.72KY 501 0.72 0.72 0.72 0.72NC 367 0.73 0.73 0.73WV 139 0.74 0.74 0.74

IN 549 0.75 0.75 0.75CT 335 0.75 0.75 0.75RI 375 0.75 0.75 0.75

AZ 518 0.77 0.77 0.77IA 310 0.77 0.77 0.77

WY 356 0.78 0.78PA 1255 0.78 0.78

CA - RCOC 438 0.80VT 260 0.86

64

The following eleven tables display the results for each choice item. The items that comprise the two choice scales are listed first. The last two items are not included in the scales, but relate to the second choice indicator. These two items are:

Person looked at more than one home Person looked at more than one job

Results are ordered from highest to lowest scores by state. “State average” represents the average score across states, weighted by sample size. This figure is computed by simply adding up the adjusted mean proportion scores and dividing by the number of states. The “Total” figure represents all cases aggregated across all seventeen states. When making comparisons, it is preferable to use the State average, since this figure accounts for differences in sample size. Unadjusted, raw data frequencies for these items are displayed on pp. 96-101 of Appendix C.

Table 40. Proportion of people who chose place where they live


RCOC 438 54%WY 356 53%PA 1255 51%IA 310 50%

AZ 518 50%CT 335 48%IN 549 48%

NC 367 47%WV 139 47%

RI 375 47%KY 501 45%IL 436 44%

DE 304 44%WA 274 43%OK 397 42%HI 504 41%


65

Table 41. Proportion of people who choose staff who help them at home


WY 356 57%RCOC 438 55%

AZ 518 55%IA 310 53%

CT 335 52%NC 367 52%WV 139 52%PA 1255 52%IN 549 51%

WA 274 51%KY 501 50%RI 375 50%IL 436 50%

DE 304 50%OK 397 49%HI 504 48%


Table 42. Proportion of people who chose place of work or day activity


WY 356 64%RCOC 438 62%

AZ 518 60%PA 1255 60%IA 310 60%

CT 335 59%NC 367 57%WV 139 57%

IN 549 57%KY 501 56%RI 375 55%

WA 274 55%DE 304 54%IL 436 54%

OK 397 52%HI 504 51%


66

Table 43. Proportion of people who choose staff who help them at work or day activity

State Valid N Adjusted Mean ProportionWY 356 61%VT 260 61%AZ 518 57%CT 335 56%HI 504 56%IA 310 56%

KY 501 56%IL 436 56%

NC 367 55%WV 139 55%OK 397 54%DE 304 54%IN 549 53%

PA 1255 53%RCOC 438 53%

WA 274 53%RI 375 52%


Table 44. Proportion of people who chose case manager/service coordinator

State Valid N Adjusted Mean ProportionWY 356 44%VT 260 43%AZ 518 39%CT 335 38%NC 367 37%IA 310 37%IL 436 37%

KY 501 36%WV 139 36%

RCOC 438 36%IN 549 36%

OK 397 36%WA 274 35%

HI 504 34%PA 1255 34%RI 375 33%

DE 304 33%State average 37%

Total 7318 36%

67

Table 45. Proportion of people who choose people they live with


RCOC 438 54%AZ 518 50%PA 1255 50%IA 310 49%

WY 356 48%IN 549 48%RI 375 47%

WV 139 46%CT 335 46%NC 367 46%DE 304 44%KY 501 44%IL 436 43%

WA 274 43%HI 504 42%

OK 397 42%State average 47%

Total 7318 47%

Table 46. Proportion of people who choose daily schedule


WY 356 85%RCOC 438 85%

PA 1255 84%IA 310 83%

AZ 518 83%CT 335 82%IN 549 82%RI 375 82%

WV 139 81%NC 367 81%KY 501 81%HI 504 80%

DE 304 79%IL 436 79%

WA 274 78%OK 397 77%


68

Table 47. Proportion of people who choose how to spend free time

State Valid N Adjusted Mean ProportionWY 356 93%PA 1255 92%

RCOC 438 92%IA 310 92%

CT 335 92%RI 375 91%IN 549 91%

AZ 518 91%WV 139 91%NC 367 91%KY 501 90%IL 436 90%

DE 304 90%HI 504 90%

OK 397 88%WA 274 88%


Table 48. Proportion of people who choose what to buy with spending money


WY 356 90%PA 1255 89%

RCOC 438 89%IA 310 88%

AZ 518 87%RI 375 87%

CT 335 87%IN 549 86%

WV 139 86%NC 367 85%KY 501 85%DE 304 85%IL 436 84%HI 504 84%

WA 274 83%OK 397 81%


69

Table 49. Proportion of people who looked at more than one home

State Valid N Mean ProportionWA 181 49%AZ 238 48%

RCOC 206 46%IN 403 43%

NC 248 42%IA 269 40%

KY 290 38%WY 285 33%CT 227 31%

WV 62 31%IL 243 29%RI 147 22%

PA 855 21%DE 176 9%


Table 50. Proportion of people who looked at more than one job

State Valid N Mean ProportionWA 217 54%AZ 293 48%

RCOC 337 45%IN 336 40%IA 310 39%

CT 251 38%KY 395 36%WY 297 35%NC 303 34%RI 189 24%IL 342 23%

PA 835 21%DE 249 20%WV 95 13%


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Consumer Outcomes: RelationshipsThe Relationships Sub-domain has the following concern statement: “People have friends and relationships.” There are four indicators listed in this sub-domain:

1. The proportion of people who have friends and caring relationships with people other than support staff and family members.

2. The proportion of people who have a close friend, someone they can talk to about personal things.

3. The proportion of people who are able to see their families and friends when they want.

4. The proportion of people who feel lonely.

Results are presented below for each indicator, ordered from highest to lowest scores by state. “State average” represents the average score across states, weighted by sample size. This figure is computed by simply adding up the mean proportion scores and dividing by the number of states. The “Total” figure represents all cases aggregated across all seventeen states. When making comparisons, it is preferable to use the State average, since this figure accounts for differences in sample size. Unadjusted, raw data frequencies for these items are displayed on pp. 102-104 of Appendix C.

Table 51. Proportion of people who report having friends and caring relationships with people other than support staff and family members

State Valid N Mean ProportionWY 293 83%

RI 234 82%WA 199 80%DE 196 80%WV 88 78%KY 295 78%CT 246 76%VT 188 76%

RCOC 362 75%IN 392 73%

NC 352 72%IA 311 71%IL 300 70%

AZ 342 67%OK 174 64%PA 945 60%HI 272 55%


71

Table 52. Proportion of people who report having a close friend


HI 257 89%OK 161 88%KY 270 86%RI 223 85%

AZ 316 83%NC 313 82%IN 364 81%

CT 233 81%RCOC 336 81%

WV 81 80%IA 293 80%

PA 944 79%WA 175 78%

IL 288 77%VT 174 72%DE 186 52%


Table 53. Proportion of people who are able to see their families when they want to

State Valid N Mean ProportionRI 216 86%IL 280 84%

AZ 305 83%OK 161 83%PA 865 81%WV 83 78%

IA 290 78%HI 235 77%IN 350 76%

NC 324 75%CT 227 75%KY 278 72%WY 287 72%VT 154 70%

RCOC 341 70%WA 187 70%DE 178 60%


72

Table 54. Proportion of people who are able to see their friends when they want to

State Valid N Mean ProportionRI 208 88%IN 347 88%IL 275 88%

WY 277 86%VT 164 85%AZ 306 85%OK 158 84%KY 265 82%IA 296 81%

NC 307 81%RCOC 312 80%

CT 214 79%WV 82 76%

HI 237 74%WA 175 70%PA 832 65%DE 173 46%


Table 55. Proportion of people who feel lonely

State Valid N Mean ProportionHI 250 42%

PA 924 44%VT 180 44%KY 292 45%AZ 342 46%

WY 287 46%RCOC 345 46%

CT 232 47%DE 172 48%IN 383 48%

WA 191 49%WV 87 51%

IA 308 51%RI 232 52%

NC 340 55%IL 288 57%


Total 5015 48%

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Consumer Outcomes: SatisfactionThe Satisfaction Sub-domain has the following concern statement: “People are satisfied with the services and supports received.” The indicators measured by the Consumer Survey are:

1. The proportion of people satisfied with where they live.2. The proportion of people who are satisfied with their job or day program.

Results are presented below for each item, ordered from highest to lowest scores by state. “State average” represents the average score across states, weighted by sample size. This figure is computed by simply adding up the mean proportion scores and dividing by the number of states. The “Total” figure represents all cases aggregated across all seventeen states. When making comparisons, it is preferable to use the State average, since this figure accounts for differences in sample size. Unadjusted, raw data frequencies for these items are displayed on p. 105 of Appendix C.

Table 56. Proportion of people who report satisfaction with where they live

State Valid N Mean ProportionRCOC 362 98%

AZ 352 97%HI 273 96%RI 243 96%IL 305 96%IA 313 95%

PA 986 95%KY 303 94%IN 393 94%

CT 250 94%WV 90 93%WY 297 93%NC 348 93%WA 204 92%OK 174 92%DE 199 91%VT 234 89%


74

Table 57. Proportion of people who report satisfaction with their work/day program

State Valid N Mean ProportionVT 123 98%HI 235 98%IL 295 98%

RCOC 314 97%WV 68 97%PA 822 97%WY 272 96%OK 141 96%NC 252 96%RI 209 95%IA 281 95%

KY 272 95%CT 228 95%DE 195 94%WA 154 94%

IN 289 94%AZ 250 93%


75

System Performance: Service CoordinationThe Service Coordination Sub-domain has the following concern statement: “Service Coordinators are accessible, responsive, and support the person’s participation in service planning.” The Consumer Survey measures three indicators related to service coordination:

1. The proportion of people reporting that service coordinators help them get what they need.

2. The proportion of people who know their service coordinators.3. The proportion of people who report that their service coordinators

asked about their preferences.

A scale was created using the three items that measure the indicators above. In order for a score to be computed, the person must have answered at least two out of three questions.17 Internal consistency of the Service Coordination scale was good, with a Cronbach’s alpha of 0.80.

Each state’s scale score was compared with the average scale score across all other states (not including that state). The tables below display each state’s scale score compared with the average across all other states, and the last column indicates whether or not the state’s score was significantly different from the average. A conservative cutoff point (p>=0.01) was used to determine significant differences.

Figure 4 on the following page displays state performance on the Service Coordination scale in a map format. Those states colored in dark grey performed above average, those with horizontal stripes performed below average, and those in light grey were no different from the average.

17 Vermont data for one item, “the proportion of people who know their case managers,” was not available at the time of data analysis; therefore, Vermont is not included in the Service Coordination Scale results. Raw data results are included in Appendix C.

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Table 58. Service Coordination Scale Scores by State, Compared to


Average Across All

Other States

Sig. at p>=0.01

WY 0.939 0.806 YESIL 0.913 0.808 YES

OK 0.911 0.811 YESNC 0.882 0.809 YESKY 0.882 0.810 YESIA 0.876 0.810 YES

WV 0.848 0.814 NOCA-RCOC 0.831 0.813 NO

HI 0.819 0.814 NOPA 0.803 0.817 NORI 0.795 0.815 NOCT 0.774 0.817 NOAZ 0.770 0.818 YESIN 0.681 0.825 YES

WA 0.644 0.821 YESDE 0.602 0.822 YES

Figure 12. Service Coordination: State Scale Scores Compared with National Average

77

WA

IN

AZ

UT

NC

IL

IA

OK

WV

KY

PA

DE

RI

CT

MT

WY

NE

HI

IN

AZ

NC

IL

IA

OK

WV

KY

PA

WY

NE

HI

Orange County

AL

SD

SC

ME

Above average

scoreNo difference

Below average score

Tukey’s tests were also performed to determine which states were significantly different from one another on each scale. Scores that fall into the same subsets are not significantly different. For the Service Coordination scale, the minimum significant difference is estimated at 0.09.

Table 59. Service Coordination Scale Scores, by Subsets of States

Subset for alpha = .05State N 1 2 3 4 5 6

DE 174 0.60 WA 165 0.64

IN 346 0.68 0.68 AZ 334 0.77 0.77 CT 243 0.77 RI 230 0.79 0.79

PA 901 0.80 0.80 HI 261 0.82 0.82

CA 349 0.83 0.83 0.83 WV 83 0.85 0.85 0.85 0.85

IA 288 0.88 0.88 0.88KY 288 0.88 0.88 0.88NC 344 0.88 0.88 0.88OK 158 0.91 0.91

IL 294 0.91 0.91WY 290 0.94

Results are presented below for each item in the Service Coordination scale, ordered from highest to lowest scores by state. “State average” represents the average score across states, weighted by sample size. This figure is computed by simply adding up the mean proportion scores and dividing by the number of states. The “Total” figure represents all cases aggregated across all seventeen states. When making comparisons, it is preferable to use the State average, since this figure accounts for differences in sample size. Unadjusted, raw data frequencies for these items are displayed on pp. 106-107 of Appendix C.

78

Table 60. Proportion of people who report that their service coordinators help them get what they need

State Valid N Mean ProportionWY 286 91%OK 154 90%VT 162 88%IL 291 88%

KY 287 84%NC 342 84%RI 222 81%

WV 77 81%RCOC 334 80%

IA 284 80%HI 257 79%

AZ 327 73%CT 230 73%PA 877 70%IN 343 66%

WA 148 57%DE 129 53%


Table 61. Proportion of people who report that they know their case manager

State Valid N Mean ProportionIA 287 98%IL 298 98%

OK 167 98%WY 286 97%WV 84 96%NC 344 94%KY 286 93%

RCOC 357 90%PA 942 89%CT 247 87%HI 268 86%

AZ 340 85%RI 231 80%

WA 189 77%DE 195 77%IN 358 70%


79

Table 62. Proportion of people who report that their case manager asks them what’s important

State Valid N Mean ProportionAZ 316 63%

RCOC 342 71%CT 225 62%DE 166 37%HI 240 75%IA 274 70%IL 287 76%IN 336 61%

KY 276 79%NC 333 76%OK 152 76%PA 872 68%RI 216 74%

WA 146 49%WV 79 66%WY 282 87%


80

System Performance: AccessThe Access Sub-domain has the following concern statement: “Publicly-funded services are readily available to individuals who need and qualify for them.” There are three Access indicators measured by the Consumer Survey:

1. The proportion of people reporting that they received support to learn or do something new in the past year.

2. The proportion of people who report having adequate transportation when they want to go somewhere.

3. The rate at which people report that “needed” services were not available.


Table 63. Proportion of people reporting that they received help to reach goals

State Valid N Adjusted Mean ProportionHI 273 77%

WY 295 76%OK 175 75%

IL 305 74%CT 239 74%KY 307 74%AZ 333 73%

WV 90 73%RI 245 73%

RCOC 354 73%IA 238 73%IN 394 73%

NC 280 73%DE 197 73%PA 956 71%WA 177 71%


81

Table 64. Proportion of people who report having adequate transportation when they want to go somewhere

State Valid N Adjusted Mean ProportionHI 273 80%

AZ 333 80%DE 197 79%

RCOC 354 79%PA 956 79%CT 239 79%VT 260 79%IL 305 79%IN 394 79%

OK 175 79%WA 177 79%KY 307 79%WY 295 79%

IA 238 79%NC 280 78%RI 245 78%

WV 90 78%State average 79%

Total 5118 79%

Table 65. Proportion of people who report that needed services were not available


IA 392 15%OK 390 16%CT 347 17%IN 544 17%

NC 453 18%PA 1258 20%KY 486 22%RI 346 24%

WA 298 26%IL 419 26%

AZ 505 26%RCOC 448 29%

HI 482 29%DE 309 32%WV 135 36%


82

Health, Welfare, and Rights: SafetyThe Safety Sub-domain has the following concern statement: “People are safe from abuse, neglect, and injury.” There is one Safety indicator measured with the Consumer Survey:

1. The proportion of people who report that they feel safe in their home and neighborhood.

Results are presented below for the two items related to this indicator, ordered from highest to lowest scores by state. “State average” represents the average score across states, weighted by sample size. This figure is computed by simply adding up the mean proportion scores and dividing by the number of states. The “Total” figure represents all cases aggregated across all seventeen states. When making comparisons, it is preferable to use the State average, since this figure accounts for differences in sample size. Unadjusted, raw data frequencies for these items are displayed on p. 110 of Appendix C.

Table 66. Proportion of people who report that they feel safe in their home

State Valid N Mean ProportionRI 239 88%

VT 190 87%HI 265 86%

WV 88 84%RCOC 352 82%

KY 301 82%CT 243 81%IL 296 81%

PA 942 79%AZ 336 79%OK 169 78%IN 386 78%

DE 193 77%WA 199 76%

IA 308 75%WY 292 69%


83

Table 67. Proportion of people who report that they feel safe in their neighborhood

State Valid N Mean ProportionWV 87 90%

HI 256 86%KY 301 85%VT 165 85%CT 236 83%RI 230 83%

PA 912 83%WA 196 82%

IN 380 82%RCOC 348 82%

IL 290 81%NC 333 80%OK 169 79%DE 185 77%AZ 334 77%IA 303 76%

WY 287 76%State average 82%

Total 5012 81%

84

Health, Welfare & Rights: HealthThe Health Sub-domain has the following concern statement: “People secure needed health services.” There are three Health indicators collected with the Background Information section of the Consumer Survey:

1. The proportion of people who have had a physical exam in the past year.2. The proportion of women who have had a GYN exam in the past year.3. The proportion of people who have had a routine dental exam in the past

six months.


Table 68. Proportion of people who had a physical exam in the past year

State Valid N Mean ProportionOK 401 96%IN 562 96%

WV 139 94%VT 248 92%CT 358 89%NC 504 88%PA 1385 88%RI 379 88%

RCOC 455 87%IL 439 86%IA 410 85%

KY 505 79%WY 397 79%DE 312 76%WA 312 66%AZ 551 66%HI 508 53%


85

Table 69. Proportion of people who had a gynecological exam in the past year

State Valid N Mean ProportionIN 234 70%

CT 153 65%OK 159 62%DE 148 59%PA 610 57%NC 226 56%RI 185 53%IA 185 52%

WY 199 50%RCOC 190 46%

IL 181 44%WV 76 43%KY 221 38%WA 139 36%AZ 256 34%HI 227 27%


Table 70. Proportion of people who had a routine dental exam in the past six months

State Valid N Mean ProportionCT 352 69%IN 562 69%IA 406 66%RI 379 63%

OK 401 60%DE 312 58%WY 397 56%PA 1378 50%WV 139 49%

RCOC 454 46%NC 498 46%KY 505 43%WA 308 39%

IL 439 36%AZ 539 35%HI 508 20%


86

Health, Welfare & Rights: MedicationsThe Medications Sub-domain has the following concern statement: “Medications are managed effectively and appropriately.” There is one indicator collected using the Background Information section of the Consumer Survey:

1. The proportion of people taking medications for mood, anxiety, or behavior problems.

Results are presented below for this indicator, ordered from highest to lowest scores by state. “State average” represents the average score across states, weighted by sample size. This figure is computed by simply adding up the mean proportion scores and dividing by the number of states. The “Total” figure represents all cases aggregated across all seventeen states. When making comparisons, it is preferable to use the State average, since this figure accounts for differences in sample size. Unadjusted, raw data frequencies for these items are displayed on p. 113 of Appendix C.

Table 71. Proportion of people receiving psychotropic18 medications

State Valid N Mean ProportionHI 508 11%

NC 510 16%AZ 554 20%

RCOC 456 24%WA 320 25%DE 312 26%IL 439 27%

CT 364 33%PA 1394 34%WY 397 34%KY 505 35%RI 379 36%

OK 401 36%WV 139 37%

IA 412 37%IN 562 39%


18 Results include medication taken for mood or anxiety problems only. Medication for behavior problems could not be reported due to a coding error.

87

Health, Welfare & Rights: Respect/RightsThe Respect/Rights Sub-domain has the following concern statement: “People receive the same respect and protections as others in the community.” There are five indicators measured by the Consumer Survey:

1. The proportion of people who have an advocate or someone who speaks on their behalf.

2. The proportion of people whose basic rights are respected by others.3. The proportion of people who have participated in activities of self-

advocacy groups or other groups that address rights.4. The proportion of people who report satisfaction with the amount of

privacy they have. 5. The proportion of people indicating that most support staff treat them

with respect.


Table 72. Proportion of people reporting that they have an advocate or someone who speaks on their behalf

State Valid N Mean ProportionIL 200 95%IA 224 95%

RCOC 250 92%IN 176 91%

OK 169 88%NC 238 88%WA 135 86%KY 222 86%WV 60 85%WY 234 82%

HI 256 82%CT 160 82%RI 140 81%

AZ 236 81%DE 133 71%


88

Table 73. Proportion of people reporting that their mail is opened without permission

State Valid N Adjusted Mean Proportion

WY 356 9%IA 310 11%

PA 1255 11%CT 335 11%AZ 518 12%

RCOC 438 12%RI 375 12%

WV 139 12%IN 549 12%

NC 367 12%IL 436 13%

KY 501 13%DE 304 13%

WA 274 13%HI 504 15%


Total 7058 12%

Table 74. Proportion of people who report that they have some restrictions on being alone

State Valid N Adjusted Mean ProportionAZ 518 18%

RCOC 438 18%CT 335 19%DE 304 20%HI 504 20%IA 310 22%IL 436 22%IN 549 22%

KY 501 23%NC 367 23%OK 397 23%PA 1255 23%RI 375 23%

VT 260 23%WA 274 23%WV 139 24%WY 356 24%


89

Table 75. Proportion of people reporting that there are restrictions on their use of the phone


PA 1255 12%VT 260 13%RI 375 13%IN 549 14%IA 310 15%

AZ 518 15%WY 356 15%DE 304 15%WA 274 15%WV 139 15%CT 335 15%NC 367 15%KY 501 16%IL 436 16%

OK 397 16%HI 504 16%


Table 76. Proportion of people report that other people enter their home without permission


AZ 333 12%VT 260 12%OK 175 12%PA 956 12%IN 394 12%HI 273 12%

WA 177 13%RI 245 13%

DE 197 13%IA 238 13%

KY 307 14%WV 90 14%CT 239 14%NC 280 14%IL 305 14%

WY 295 15%State average 13%

Total 5118 13%

90

Table 77. Proportion of people report that other people enter their bedroom without permission

State Valid N Adjusted Mean ProportionWY 295 17%VT 260 17%HI 273 17%

AZ 333 17%OK 175 18%IN 394 18%

RCOC 354 18%KY 307 18%CT 239 18%IL 305 18%

WA 177 19%IA 238 19%

NC 280 19%PA 956 19%DE 197 19%RI 245 19%

WV 90 19%State average 18%

Total 5118 18%

91

Table 78. Proportion of people who have attended activities of self-advocacy groups

State Valid N Adjusted Mean ProportionWY 356 33%

IA 310 29%CT 335 29%

RCOC 438 29%NC 367 29%WV 139 29%AZ 518 29%IN 549 28%RI 375 28%IL 436 28%

WA 274 28%PA 1255 28%KY 501 27%OK 397 27%DE 304 27%HI 504 25%


Table 79. Proportion of people reporting they can be alone as much as they want to


PA 956 93%RI 245 92%

WA 177 92%IN 394 92%

DE 197 92%AZ 333 92%KY 307 91%VT 260 91%IA 238 91%HI 273 91%

NC 280 91%CT 239 91%IL 305 91%

OK 175 90%WV 90 90%WY 295 88%


92

Table 80. Proportion of people reporting that most day support staff treat them with respect

State Valid N Mean ProportionRI 199 97%

NC 214 97%WY 256 96%

RCOC 298 96%IL 287 96%

CT 199 95%WV 64 95%OK 125 94%WA 139 94%KY 265 94%HI 233 93%IN 265 92%

DE 187 92%IA 259 92%

PA 685 90%VT19 114 90%AZ 225 89%


Table 81. Proportion of people reporting that most residential support staff treat them with respect

State Valid N Mean ProportionWV 45 100%

IN 347 95%CT 208 93%IL 194 93%RI 170 93%

WA 147 93%HI 129 92%

OK 170 92%PA 504 91%

RCOC 208 90%NC 252 90%IA 271 88%

AZ 164 87%KY 201 84%DE 109 83%WY 269 82%


19 Includes work supports only, not day activity.

93

Appendix A: Rules for Recoding and Combining Variables to Compute Core Indicators

94

Table A1. Outcome Adjustment Variables and Rules for Collapsing Response CodesBI Item # Variable Name Recode or Collapse?

BI-4 AGE As is

BI-5 GENDER As is

BI-8 LGLSTAT Collapse codes 2 + 3 = Not independent

BI-11 LEVELMR Collapse into 3 categories: a) No MR + Mild; b) Moderate; c) Severe + Profound

BI-12 DXMIPD, DXAUTISM, DXCP, DXCHEMDP, DXSENSE, DXPHYSCL, DXCOMM, DXALZHEM, DXOTHER

Use each disability as separate adjustment variable.

1=Does not have disability; 2=Has disability

DXBI, DXNEURO Create a new variable DXBINEUR to indicate presence of any one of the three diagnoses: seizure disorder, brain injury, or neurological problems.

BI-13 EXPRESS Collapse into 2 categories: a) verbal = 1 + 2; and b) non-verbal = 3 + 4 + 5 + 6

BI-14 MOBILITY As is

BI-15 VISION Collapse 2 + 3 = has vision problems

BI-18 SEIZURES Collapse 2 + 3 + 4 = frequent seizures

BI-19 MEDCARE Collapse 2 + 3 + 4 + 5 = requires frequent medical care

BI-31 through 33

(SELFINJ) SIFREQ, (DISBEH) DBFREQ, (UNCPBEH) UBFREQ

Create a new variable BEHAVIOR to indicate the presence of any one of the three behaviors.

95

Table A2. Indicator Variables and Rules Used for AnalysisSurvey Item # Variable Name Recode or Collapse? Risk Adjust?

Q1 LIKEWORK Collapse In-between (1) and Yes (2)

Q2 STAFNICE Collapse In-between (1) and No (0)

Q4 LIKEHOME Collapse Yes (2) and In-between (1)

Q5 BEALONE As is YES

Q6 AFRAIDHM Collapse Sometimes (1) and Yes (2)

Q7 AFRAIDNH Collapse Sometimes (1) and Yes (2)

Q8 HOMESTAF Collapse Sometimes (1) and No (0)

Q9-10 ENTERHM, ENTERBRM

Collapse Sometimes (1) and No (0) YES

Q12 HASFRNDS Collapse No (0) and Yes - staff or family (1)

Q13 BESTFRND As is

Q14 SEEFRNDS Collapse Sometimes (1) and No (0)

Q15 LONELY Collapse Sometimes (1) and Always (0)

Q16 SEEFAMLY Collapse Sometimes (1) and No (0)

Q17 KNOWSCM Collapse Maybe (1) and Yes (2)

Q18 HELPSGET Collapse Sometimes (1) and No (0)

Q19 ASKIMPOR Collapse Sometimes (1) and No (0)

Q20 HASADVOC Collapse Maybe (1) and No (0)

Q21 HELPGOAL Collapse Sometimes (1) and No (0) YES

Q22 TRANSPOR Collapse No (0) and Sometimes (1) YES

96

Survey Item # Variable Name Recode or Collapse? Risk Adjust?

Q26-33 SHOPPING, ERRANDS, ENTERTAN, EATOUT, RELIGION, CLUBS, SPORTS

As is YES

Q34, Q36-Q40, Q42-Q44

CHOSHOME, ROOMATES, CHSSTAFF, SCHEDULE, FREETIME, CHOOSJOB, CHSJBSTF, CHOOSBUY, CHOOSCM

Collapse Person had some input (1) and Person chose without help (2)

YES

Q35, Q41 NUMHOME, NUMJOBS

Collapse Visited one place only (1) and Did not visit (0)

Q45-47 MAILOPEN, ALONEGST, USEPHONE

Collapse Sometimes restricted (1) and Not restricted (2)

YES

Q48 SELFSADVO Collapse Yes (2) and Had opportunity but chose not to (1)

YES

Q49 SERVED Collapse No (0) and Sometimes (1)

97

Appendix B: Services and Supports Received

98

Services and Supports Currently Received

STATE AZ CA CT DE HI IA IL IN KY NC OK PA RI VT WA WV WY StateAvg Total

Service coordination or case managementN 550 456 361 312 508 400 439 561 505 501 401 1385 379 265 308 139 397 7867

% No 1.6 0.2 1.7 2.2 0.2 10.5 0.5 5.2 3.6 2.4 1.0 0.4 3.2 10.2 1.6 3.6 4.0 3.1 2.6% Yes 97.8 99.8 98.3 97.4 99.8 88.8 99.5 94.5 95.8 97.4 99.0 99.3 95.5 89.8 97.4 96.4 92.9 96.4 97.0% DK 0.5 0.3 0.8 0.4 0.6 0.2 0.4 1.3 1.0 3.0 0.8 0.5

Vocational services - supported employmentN 465 455 284 311 508 377 439 561 505 411 400 1313 379 265 272 139 397 7481

% No 74.2 78.9 71.1 98.2 72.1 72.1 88.6 76.3 83.4 71.8 74.3 86.7 64.4 86.4 58.1 91.4 59.4 76.9 78.6% Yes 20.9 19.1 26.8 1.8 27.6 27.6 11.4 22.5 16.0 27.0 25.8 10.7 29.8 13.6 38.6 6.5 36.0 21.3 19.5% DK 4.9 2.0 2.1 0.3 0.3 1.2 0.6 1.2 2.6 5.8 3.3 2.2 4.5 2.4 1.9

Vocational services - group employment N 439 455 282 312 508 376 437 561 505 387 399 1302 379 265 251 139 397 7394

% No 85.4 81.3 65.2 82.4 99.2 83.2 98.4 95.5 96.6 91.0 89.7 94.1 80.5 100.0 82.5 95.7 90.2 88.9 90.1% Yes 11.6 17.4 33.0 16.7 0.8 16.2 1.6 3.0 2.6 8.0 10.3 3.2 13.5 11.2 2.2 5.0 9.8 8.0% DK 3.0 1.3 1.8 1.0 0.5 1.4 0.8 1.0 2.7 6.1 6.4 2.2 4.8 2.5 1.9

Vocational services - facility based employmentN 461 455 274 312 508 391 439 561 505 413 401 1334 379 265 255 139 397 7489

% No 71.8 73.0 73.0 56.7 91.9 29.9 28.9 60.6 47.7 63.0 60.1 60.0 48.3 99.6 71.8 82.0 62.5 63.6 61.8%Yes 26.5 25.3 25.5 41.3 8.1 70.1 71.1 38.5 52.1 36.1 39.7 38.0 47.8 0.4 24.3 15.8 33.2 34.9 36.8% DK 1.7 1.8 1.5 1.9 0.9 0.2 1.0 0.2 1.9 4.0 3.9 2.2 4.3 2.0 1.4

Non-vocational day servicesN 467 453 282 312 508 379 439 560 504 410 401 1328 379 265 261 139 397 7484

% No 60.8 81.2 65.2 60.6 31.5 85.2 86.1 64.8 54.6 69.5 95.8 61.5 67.8 27.9 71.6 48.2 44.8 63.4 63.8%Yes 36.6 16.8 32.6 38.5 68.5 14.5 13.9 34.5 44.4 29.8 4.2 36.0 26.1 72.1 20.3 51.8 50.6 34.8 34.4% DK 2.6 2.0 2.1 1.0 0.3 0.7 1.0 0.7 2.5 6.1 8.0 4.5 2.6 1.8

Community participationN 459 454 298 311 508 388 439 561 505 410 401 1322 379 265 277 139 397 7513

% No 54.0 67.2 31.9 51.1 73.4 38.1 14.1 32.3 42.2 39.5 80.0 48.2 26.1 49.1 33.2 38.1 9.3 42.8 44.1% Yes 39.2 31.1 66.1 44.1 26.6 59.0 85.6 67.4 54.1 59.0 20.0 47.8 69.9 50.9 53.4 60.4 86.9 54.2 52.9% DK 6.8 1.8 2.0 4.8 2.8 0.2 0.4 3.8 1.5 4.0 4.0 13.4 1.4 3.8 3.6 2.9

99

Services and Supports Currently Received (continued)

STATE AZ CA CT DE IA IA IL IN KY NC OK PA RI VT WA WV WY State Avg Total

Assistive technologyN 442 455 277 310 508 378 439 561 504 389 401 1307 379 N/A 259 139 397 7145

% No 87.8 89.5 81.9 75.8 97.0 79.6 75.2 72.0 75.6 83.3 79.3 84.8 73.6 N/A 64.1 84.9 56.9 78.8 79.8% Yes 8.6 7.9 14.8 21.6 2.8 18.8 24.8 26.0 19.6 15.4 20.7 10.1 18.2 N/A 17.4 11.5 39.3 17.3 16.5% DK 3.6 2.6 3.2 2.6 0.2 1.6 2.0 4.8 1.3 5.1 8.2 N/A 18.5 3.6 3.8 4.4 3.6

Clinical servicesN 466 454 317 312 508 389 439 561 504 423 401 1320 379 264 269 139 397 7542

% No 59.9 64.8 33.1 41.0 87.0 45.5 57.6 37.4 43.5 43.0 32.4 58.2 33.0 61.4 40.9 33.8 57.7 48.8 51.18% Yes 35.6 33.3 64.0 57.1 13.0 50.9 42.4 61.9 53.8 56.0 67.6 37.2 61.7 38.6 42.4 66.2 38.0 48.2 45.85% DK 4.5 2.0 2.8 1.9 3.6 0.7 2.8 0.9 4.6 5.3 16.7 4.3 4.2 2.97

TransportationN 481 452 328 312 508 396 439 561 504 438 401 1342 379 263 282 139 397 7622

% No 44.9 18.6 11.9 11.9 76.0 17.4 9.6 20.0 23.8 29.7 1.7 29.0 11.9 60.8 16.7 21.6 5.3 24.2 25.4% Yes 48.6 80.5 87.5 87.8 24.0 81.1 90.4 79.9 74.2 69.6 98.3 68.6 86.3 39.2 69.9 77.7 91.7 73.8 72.7% DK 6.4 0.9 0.6 0.3 1.5 0.2 2.0 0.7 2.4 1.8 13.5 0.7 3.0 2.6 1.9

RespiteN 450 453 271 309 508 371 439 561 505 401 401 1296 379 265 258 139 397 7403

% No 74.4 74.6 80.1 70.2 80.9 83.8 93.6 90.6 64.6 69.3 96.5 72.4 79.9 55.8 72.1 77.7 91.7 78.1 78.2% Yes 22.9 23.2 15.5 27.8 18.9 11.6 6.2 8.0 33.5 29.9 3.2 22.3 12.1 44.2 18.2 22.3 4.5 19.1 18.9% DK 2.7 2.2 4.4 1.9 0.2 4.6 0.2 1.4 2.0 0.7 0.2 5.3 7.9 9.7 3.8 3.2 3.0

Home and community based waiverN 543 454 345 312 508 404 439 559 505 496 400 1380 379 263 310 139 397 7833

% No 69.1 63.7 27.2 53.2 26.0 41.8 49.9 69.2 70.3 52.0 30.5 40.1 17.9 20.2 45.5 43.9 1.0 42.4 44.0% Yes 15.1 34.4 65.8 43.6 73.6 55.4 46.0 29.2 25.1 47.8 67.3 58.7 82.1 78.3 40.6 52.5 98.0 53.7 52.5% DK 15.8 2.0 7.0 3.2 0.4 2.7 4.1 1.6 4.6 0.2 2.3 1.2 1.5 13.9 3.6 1.0 4.1 3.5

Other services and supportsN 391 435 215 249 508 295 432 561 505 286 400 1052 379 258 211 139 397 6713

% No 65.2 64.4 70.7 75.9 78.3 73.6 96.3 85.6 87.1 62.6 72.5 66.4 76.3 97.7 55.9 72.7 90.7 76.0 76.2% Yes 19.7 17.2 21.4 4.0 21.3 16.3 3.0 9.6 9.1 29.7 27.5 17.3 7.4 2.3 21.8 14.4 5.8 14.6 14.6% DK 15.1 18.4 7.9 20.1 0.4 10.2 0.7 4.8 3.8 7.7 16.3 16.4 22.3 12.9 3.5 10.7 9.3

100

Appendix C: Item-by-Item Survey Results

101

Notes about item-by-item survey results:

The tables contained in this Appendix are grouped by sub-domain (e.g., Community Inclusion).

Each table displays data for one survey item.

The title of each table contains the question number and wording as it appears on the NCI Consumer Survey.

Results are listed alphabetically by state.

The data presented are unadjusted, basic frequencies of responses.

All valid response categories are broken out.

For most items, “not applicable” and “no response” are considered “missing” data and therefore are not included in these tables.

The “state average” represents the sum of all scores in the column divided by the number of states. This figure is preferred because it takes into account differences in sample sizes across states.

The “total” line represents the results of the entire national sample (all states, all cases). This aggregate figure is not adjusted for sample size; therefore, some states may be under- or over-represented in the total.

Only items that provided data for the indicators are listed. Probe questions and consistency checks are not included.

Q1 - Q22 are Section I questions, which only allow consumer responses.

Q26 - Q49 are Section II questions, which allow other informants to respond (except in the state of Vermont).

Hawaii and Oklahoma used the previous year’s version of the NCI consumer survey; therefore, some data was not available for these two states. Pennsylvania and Vermont also had some missing data due to variations on survey questions and response options. Missing data is indicated as “not available.”

102

Community Inclusion

Q26. Do you go shopping?States % No % Yes Total

AZ 10.5 89.5 544CA - RCOC 8.8 91.2 455

CT 3.1 96.9 357DE 9.3 90.7 311HI 7.8 92.2 503IA 5.0 95.0 402IL 6.7 93.3 436IN 4.4 95.6 551

KY 9.0 91.0 499NC 9.1 90.9 460OK 2.0 98.0 401PA 6.6 93.4 1277RI 8.9 91.1 370

VT 4.9 95.1 183WA 10.6 89.4 312WV 3.6 96.4 139WY 4.2 95.8 357

State average 6.7 93.3Total 6.9 93.1 7557

Q27. Do you go out on errands or appointments?State % No % Yes Total

AZ 6.8 93.2 541CA - RCOC 3.3 96.7 454

CT 2.8 97.2 357DE 2.3 97.7 311HI 2.6 97.4 502IA 3.2 96.8 401IL 4.6 95.4 434IN 5.3 94.7 551

KY 5.4 94.6 500NC 4.4 95.6 459OK 1.0 99.0 401PA 3.1 96.9 1256RI 2.7 97.3 367

VT 8.3 91.7 181WA 3.5 96.5 311WV 2.2 97.8 138WY 5.3 94.7 358


103

Q28. Do you go out for entertainment?State % No % Yes Total

AZ 15.0 85.0 541CA - RCOC 14.5 85.5 455

CT 9.6 90.4 354DE 9.0 91.0 310HI 14.3 85.7 503IA 11.7 88.3 403IL 13.7 86.3 432IN 10.2 89.8 550

KY 18.6 81.4 489NC 17.5 82.5 458OK 4.3 95.7 399PA 26.5 73.5 1294RI 13.2 86.8 371

VT 26.9 73.1 182WA 13.9 86.1 310WV 16.8 83.2 137WY 16.8 83.2 358


Q29. Do you always eat at home, or do you sometimes go out to eat?

State % Always Eats At Home

% Sometimes Eats Out Total

AZ 6.5 93.5 538CA - RCOC 8.3 91.7 445

CT 10.9 89.1 357DE 14.8 85.2 311HI 15.3 84.7 502IA 12.2 87.8 394IL 7.7 92.3 430IN 5.8 94.2 549

KY 14.7 85.3 484NC 11.8 88.2 459OK 7.8 92.3 400PA 6.0 94.0 1276RI 5.9 94.1 371

VT 8.2 91.8 184WA 14.8 85.2 311WV 7.2 92.8 139WY 7.1 92.9 354


104

Q30. Do you go to religious services?State % No % Yes Total

AZ 47.3 52.7 503CA - RCOC 42.4 57.6 450

CT 55.1 44.9 345DE 38.6 61.4 311HI 54.0 46.0 465IA 44.0 56.0 398IL 44.7 55.3 412IN 38.2 61.8 547

KY 41.8 58.2 478NC 33.1 66.9 456OK 32.9 67.1 395PA 40.3 59.7 1253RI 54.5 45.5 356

VT 59.4 40.6 180WA 50.8 49.2 297WV 33.8 66.2 136WY 57.3 42.7 354


Q31. Do you go to clubs or other community meetings?State % No % Yes Total

AZ 61.5 38.5 524CA - RCOC 65.2 34.8 446

CT 63.9 36.1 349DE 91.0 9.0 301IA 74.6 25.4 393IL 83.6 16.4 396IN 63.7 36.3 543

KY 72.9 27.1 487NC 74.0 26.0 454PA 62.1 37.9 1262RI 49.7 50.3 346

VT Not available

WA 59.6 40.4 307WV 74.6 25.4 138WY 79.4 20.6 355


105

Q33. Do you exercise or play sports?

State % No% Yes, In

Non-integrated Setting

% Yes, In Community

SettingTotal

AZ 42.0 27.7 30.3 531CA - RCOC 29.2 33.2 37.6 455

CT 39.2 26.5 34.3 347DE 49.5 18.8 31.7 309HI 10.8 Not available 89.2 502IA 22.9 33.8 43.3 402IL 38.3 44.3 17.3 433IN 27.7 32.1 40.3 549

KY 42.1 32.8 25.1 494NC 33.0 32.5 34.5 455OK 19.5 Not available 80.5 401PA 28.9 28.4 42.7 1287RI 27.9 16.4 55.7 366

VT 3.3 Not available 96.7 183WA 36.9 25.9 37.2 309WV 30.4 41.3 28.3 138WY 26.8 27.0 46.2 355

State average 29.9 30.1 45.4Total 30.3 25.6 44.2 7516

106

Choice and Decision-making

Q34. Who chose the place where you live?

State % SomeoneElse Chose

% Person Had Some Input

% Person Chose

Without HelpTotal

AZ 45.8 39.4 14.8 325CA 41.4 46.2 12.4 251CT 48.2 41.2 10.6 274DE 52.3 35.8 11.9 193HI 69.9 16.3 13.8 319IA 40.4 43.6 16.0 319IL 68.3 23.0 8.7 287IN 44.0 39.0 17.0 495

KY 40.9 39.6 19.5 328NC 40.3 38.9 20.8 293OK 47.8 33.9 18.3 372PA 63.9 26.4 9.7 1191RI 49.5 23.8 26.7 206



Q37. Do you choose who helps you at home?

State% No,

SomeoneElse Chooses

% Person Can Request

A Change% Yes, Person

Chooses Total


KY 28.2 51.9 19.9 312NC 43.4 32.3 24.4 316OK 71.9 20.9 7.1 392PA 72.1 Not available 27.9 728RI 46.4 22.2 31.3 252



107

Q40. Who chose the place where you work (or go during the day)?

State % SomeoneElse Chose

% Person Had Some Input

% Person Chose

Without HelpTotal


KY 31.6 40.0 28.5 418NC 34.8 49.4 15.8 316OK 34.6 39.4 26.0 292PA 42.3 36.3 21.4 1077RI 51.4 22.4 26.2 290

VT 16.2 58.6 25.2 111WA 41.7 43.9 14.5 228WV 42.9 38.1 19.0 105WY 23.0 37.1 39.9 313


Q42. Do you choose who helps you at work?

State% No,

SomeoneElse Chooses

% Person Can Request

A Change% Yes, Person

Chooses Total



VT 54.8 24.2 21.0 62WA 48.6 39.7 11.7 214WV 48.5 48.5 3.0 99WY 12.3 65.4 22.3 292


108

Q44. Did you choose your case manager/service coordinator?

State% No,

SomeoneElse Chose

% Can Request A

Change% Yes, Person

Chose Total


KY 27.4 52.4 20.2 460NC 52.4 39.9 7.7 429OK 89.4 2.8 7.7 388PA 91.4 5.1 3.5 1185RI 66.0 17.1 16.8 315

VT 60.2 16.8 23.0 161WA 76.2 23.1 0.7 294WV 59.8 38.6 1.5 132WY 16.9 26.2 56.9 343


Q36. Did you choose the people you live with (or to live by yourself)?

State% No,

SomeoneElse Chose

% Chose Some People or Had Input

% Yes, Chose Who to

Live WithTotal


KY 49.2 28.2 22.6 301NC 51.8 18.0 30.2 278OK 46.1 16.8 37.1 375PA 66.3 12.5 21.2 609RI 56.7 11.0 32.4 210

VT 70.1 3.0 26.9 67WA 49.8 17.7 32.5 209WV 47.8 15.9 36.2 69WY 49.3 20.6 30.1 296


109

Q38. Who decides your daily schedule?

State % Someone Else Decides

% Person Has Help Deciding

% Person Decides Total


KY 18.3 32.9 48.8 496NC 20.8 30.0 49.1 456OK 23.1 37.3 39.6 399PA 14.3 31.3 54.4 1284RI 16.1 24.8 59.2 355

VT 4.8 18.1 77.1 188WA 19.0 30.3 50.6 310WV 22.6 40.9 36.5 137WY 10.6 27.7 61.6 357


Q39. Who decides how you spend your free time?

State % Someone Else Decides

% Person Has Help Deciding

% Person Decides Total


KY 13.5 27.6 58.9 489NC 10.7 18.1 71.2 459OK 8.6 21.4 70.0 397PA 5.9 24.2 69.8 1280RI 9.7 22.5 67.8 351

VT 3.2 14.2 82.6 190WA 8.0 26.0 65.9 311WV 11.0 34.6 54.4 136WY 5.6 12.6 81.8 357


110

Q43. Do you choose what you buy with your spending money?

State% No,

SomeoneElse Chooses

% Person Has Help

Choosing% Yes, Person

Chooses Total



VT 16.1 2.2 81.7 180WA 12.4 34.3 53.3 306WV 16.2 42.6 41.2 136WY 7.6 27.5 64.9 356


Q35. How many places did you visit before moving here?

State% Did Not

Visit Before Moving In

% One Place Only

% Looked At More Than

OneTotal

AZ 30.3 21.4 48.3 238CA 27.2 27.2 45.6 206CT 27.8 41.4 30.8 227DE 41.5 49.4 9.1 176HI Not available

IA 17.3 42.6 40.1 272IL 14.3 57.0 28.7 244IN 24.4 31.9 43.7 405

KY 29.1 32.2 38.7 292NC 25.1 32.7 42.2 251OK Not available

PA 63.8 14.9 21.3 858RI 53.1 24.5 22.4 147

VT Not available

WA 12.5 38.0 49.5 184WV 43.5 25.8 30.6 62WY 28.3 39.4 32.3 297


111

Q41. How many places did you visit before working [at your job or day activity]?

State% Did Not

Visit Beforehand

% One Place Only

% Looked At More Than One Place

Total

AZ 27.2 25.2 47.6 294CA 27.9 27.3 44.8 337CT 29.5 32.7 37.8 251DE 43.4 36.5 20.1 249HI Not available

IA 21.1 40.6 38.3 313IL 14.6 62.1 23.3 343IN 31.0 28.6 40.4 339

KY 22.6 41.2 36.2 398NC 29.2 36.7 34.1 305OK Not available

PA 63.8 14.9 21.3 839RI 55.3 20.5 24.2 190

VT Not available

WA 9.6 36.7 53.7 218WV 45.3 42.1 12.6 95WY 20.8 44.3 34.9 307


112

Relationships

Q12. Do you have friends you like to talk to or do things with?

State % No % Yes – StaffOr Family

% Yes - Not Staff

Or FamilyTotal

AZ 8.2 24.6 67.3 342CA - RCOC 11.0 13.5 75.4 362

CT 6.9 16.7 76.4 246DE 5.1 15.3 79.6 196HI 7.7 37.5 54.8 272IA 3.9 24.8 71.4 311IL 5.0 24.7 70.3 300IN 8.2 18.6 73.2 392

KY 5.8 15.9 78.3 295NC 9.9 18.2 71.9 352OK 6.9 29.3 63.8 174PA 11.7 28.7 59.6 945RI 9.0 9.0 82.1 234

VT 0.0 23.9 76.1 188WA 8.0 12.1 79.9 199WV 3.4 18.2 78.4 88WY 4.8 11.9 83.3 293


Q13. Do you have a best friend, or someone you are really close to?State % No % Yes Total

AZ 17.1 82.9 316CA - RCOC 19.0 81.0 336

CT 18.9 81.1 233DE 48.4 51.6 186HI 11.3 88.7 257IA 20.1 79.9 293IL 22.9 77.1 288IN 18.7 81.3 364

KY 14.1 85.9 270NC 17.6 82.4 313OK 12.4 87.6 161PA 20.8 79.2 944RI 15.2 84.8 223

VT 28.2 71.8 174WA 21.7 78.3 175WV 19.8 80.2 81WY 11.2 88.8 286


113

Q14. Can you see your friends when you want to see them?State % No % Sometimes % Yes Total

AZ 3.3 12.1 84.6 306CA - RCOC 4.8 14.7 80.4 312

CT 5.1 16.4 78.5 214DE 3.5 50.9 45.7 173HI 5.1 21.1 73.8 237IA 3.4 15.2 81.4 296IL 2.9 9.5 87.6 275IN 2.9 9.2 87.9 347

KY 3.8 14.7 81.5 265NC 5.5 13.7 80.8 307OK 3.2 13.3 83.5 158PA 1.1 34.3 64.7 832RI 5.8 6.3 88.0 208

VT 14.0 1.2 84.8 164WA 5.7 24.6 69.7 175WV 8.5 15.9 75.6 82WY 4.7 9.0 86.3 277


Q16. Can you see your family when you want to?State % No % Sometimes % Yes Total

AZ 3.3 13.4 83.3 305CA - RCOC 9.4 20.8 69.8 341

CT 7.0 18.1 74.9 227DE 7.3 32.6 60.1 178HI 5.5 17.9 76.6 235IA 4.5 17.2 78.3 290IL 2.9 13.6 83.6 280IN 7.1 16.9 76.0 350

KY 8.6 19.1 72.3 278NC 8.6 16.0 75.3 324OK 6.2 10.6 83.2 161PA 1.4 17.2 81.4 865RI 6.0 7.9 86.1 216



114

Q15. Do you ever feel lonely?

State % Always Or Often % Sometimes % Never Total

AZ 8.5 37.4 54.1 342CA - RCOC 10.7 35.7 53.6 345

CT 11.2 35.3 53.4 232DE 15.1 32.6 52.3 172HI 8.0 34.0 58.0 250IA 12.7 38.6 48.7 308IL 7.6 49.7 42.7 288IN 14.6 33.2 52.2 383

KY 8.6 36.6 54.8 292NC 15.6 39.4 45.0 340OK 21.0 38.3 40.7 162PA 5.5 38.5 56.0 924RI 16.8 34.9 48.3 232

VT 23.3 21.1 55.6 180WA 13.6 35.1 51.3 191WV 6.9 43.7 49.4 87WY 16.7 29.3 54.0 287


115

Satisfaction

Q1. Do you like working at [your job or day activity]?State % No % In-Between % Yes Total

AZ 7.2 5.6 87.2 250CA - RCOC 2.5 3.5 93.9 314

CT 5.3 10.1 84.6 228DE 5.6 8.7 85.6 195HI 1.7 3.0 95.3 235IA 5.0 9.3 85.8 281IL 2.0 2.4 95.6 295IN 6.2 6.6 87.2 289

KY 5.1 4.0 90.8 272NC 4.4 3.2 92.5 252OK 4.3 6.4 89.4 141PA 3.0 6.7 90.3 822RI 4.8 5.3 90.0 209

VT 1.6 2.4 95.9 123WA 5.8 7.1 87.0 154WV 2.9 7.4 89.7 68WY 4.0 6.3 89.7 272


Q4. Do you like your home or where you live?State % No % In-Between % Yes Total

AZ 2.8 7.7 89.5 352CA - RCOC 2.2 4.7 93.1 362

CT 6.4 5.2 88.4 250DE 9.0 13.6 77.4 199HI 3.7 4.8 91.6 273IA 5.4 9.6 85.0 313IL 4.3 4.6 91.1 305IN 6.4 7.9 85.8 393

KY 5.6 3.0 91.4 303NC 7.2 5.2 87.6 348OK 8.0 6.3 85.6 174PA 5.5 5.7 88.8 986RI 4.1 4.5 91.4 243

VT 11.1 6.8 82.1 234WA 7.8 8.8 83.3 204WV 6.7 1.1 92.2 90WY 6.7 3.4 89.9 297


116

Service Coordination

Q18. If you ask for something, does [your case manager/service coordinator] help you get what you need?

State % No % Sometimes % Yes TotalAZ 13.5 13.1 73.4 327

CA – RCOC 11.7 8.7 79.6 334CT 13.5 13.9 72.6 230DE 36.4 10.1 53.5 129HI 11.3 10.1 78.6 257IA 4.9 15.5 79.6 284IL 2.1 10.3 87.6 291IN 25.7 7.9 66.5 343

KY 7.0 8.7 84.3 287NC 4.7 11.1 84.2 342OK 5.2 5.2 89.6 154PA 14.5 15.1 70.5 877RI 15.8 3.2 81.1 222

VT 1.9 9.9 88.3 162WA 31.1 11.5 57.4 148WV 5.2 14.3 80.5 77WY 1.0 7.7 91.3 286


Q17. Do you know your case manager/service coordinator?State % No % Maybe % Yes Total

AZ 15.3 10.6 74.1 340CA - RCOC 10.1 2.8 87.1 357

CT 12.6 9.3 78.1 247DE 23.1 3.1 73.9 195HI 14.2 9.3 76.5 268IA 1.7 2.4 95.8 287IL 2.0 2.7 95.3 298IN 30.5 5.3 64.3 358

KY 6.6 5.2 88.1 286NC 6.1 3.2 90.7 344OK 2.4 1.2 96.4 167PA 11.5 4.7 83.9 942RI 19.9 0.9 79.2 231

VT20 Not available Not available 86.6 253WA 22.8 10.6 66.7 189WV 3.6 3.6 92.9 84WY 3.5 2.8 93.7 286

State average 11.6 4.9 83.5

20 Source: Culbert, SL, Burchard, SN, & Kelley, D. (2002). Survey of Adult Consumers of Developmental Services State of Vermont 2001 Report: Report of Satisfaction or Positive Responses on Residence, Employment, Day Activities & Services. Burlington, Vermont: Consumer Survey Project. November 2002. Page 82. “ % Yes” calculated based on number of responses to “Show me how you feel about your caseworker.”

117

Total 11.81 4.90 83.30 4879

118

Q19. Does [your case manager/service coordinator] ask you what you want?State % No % Sometimes % Yes Total

AZ 22.2 15.2 62.7 316CA – RCOC 17.0 11.7 71.3 342

CT 20.0 17.8 62.2 225DE 49.4 13.3 37.3 166HI 15.8 8.8 75.4 240IA 13.5 16.8 69.7 274IL 7.3 16.7 76.0 287IN 30.7 8.3 61.0 336

KY 12.3 8.3 79.3 276NC 12.3 11.4 76.3 333OK 13.8 9.9 76.3 152PA 17.2 15.1 67.7 872RI 21.3 4.6 74.1 216

VT Not available

WA 34.2 16.4 49.3 146WV 20.3 13.9 65.8 79WY 3.9 9.6 86.5 282


119

AccessQ21. Do people help you do new things you want to do?

State % No % Sometimes % Yes TotalAZ 5.0 25.4 69.6 342

CA – RCOC 6.2 29.4 64.4 340CT 5.6 20.2 74.2 233DE 6.9 35.3 57.8 173HI 5.1 10.2 84.7 255IA 3.6 20.9 75.5 306IL 2.8 29.6 67.6 284IN 3.7 18.7 77.5 374

KY 4.7 22.9 72.4 279NC 7.7 18.5 73.8 336OK 4.2 4.2 91.6 166PA 5.1 25.1 69.8 917RI 4.3 6.1 89.6 231

VT21 39.2 18.1 42.7 171WA 9.8 26.4 63.7 193WV 3.8 31.6 64.6 79WY 4.7 15.8 79.5 278


Q22. When you want to go somewhere, do you always have a way to get there?

State % AlmostNever % Sometimes % Almost

Always Total

AZ 2.2 20.5 77.3 361CA – RCOC 2.9 16.7 80.4 377

CT 2.2 18.7 79.0 267DE 5.1 35.4 59.5 195HI 2.0 7.4 90.6 488IA 3.7 27.1 69.2 328IL 1.6 27.0 71.4 311IN 3.8 17.7 78.5 424

KY 4.6 23.0 72.4 304NC 5.2 17.1 77.7 368OK 1.5 4.0 94.5 400PA 3.3 13.0 83.7 1289RI 4.7 9.9 85.3 232

VT 7.6 5.4 87.0 185WA 4.0 18.8 77.2 202WV 11.1 19.2 69.7 99WY 3.0 15.4 81.5 298


21 Source: Culbert et al. (2002). Page 86. Results based on question, “Do you ever get to learn new things?” [If yes: What are they?]. Response options differ slightly: Yes – named, Yes – but did not name, No.

120

Q49. Do you get the services you need?State % No % Sometimes % Yes Total

AZ 14.1 11.5 74.5 505CA – RCOC 10.7 18.1 71.2 448



VT22 13.0 2.5 84.6 162WA 11.7 13.8 74.5 298WV 20.7 14.8 64.4 135WY 3.7 7.7 88.6 351


22 Source: Culbert et al. (2002). Page 84. Results based on question, “Are there other supports and services you wish you had that you don’t have now?” [If yes: Please list.] Response options differ slightly: Yes – named, Yes – but did not name, No.

121

Safety

Q6. Are you ever afraid or scared when you are at home?

State % Rarely % Sometimes % Most Of The Time Total

AZ 78.9 17.6 3.6 336CA - RCOC 82.4 14.2 3.4 352

CT 81.5 15.6 2.9 243DE 76.7 14.5 8.8 193HI 86.4 7.5 6.0 265IA 74.7 20.1 5.2 308IL 80.7 16.2 3.0 296IN 78.0 15.8 6.2 386

KY 81.7 14.6 3.7 301NC Not available

OK 78.1 14.8 7.1 169PA 79.3 17.8 2.9 942RI 87.9 6.7 5.4 239

VT 86.8 6.8 6.3 190WA 76.4 18.6 5.0 199WV 84.1 11.4 4.5 88WY 69.2 19.9 11.0 292


Q7. Are you ever afraid or scared when you are out in your neighborhood?

State % Rarely % Sometimes % Most Of The Time Total

AZ 77.2 18.6 4.2 334CA - RCOC 81.9 13.8 4.3 348

CT 83.1 10.6 6.4 236DE 77.3 16.8 5.9 185HI 86.3 10.5 3.1 256IA 76.2 18.8 5.0 303IL 81.0 15.2 3.8 290IN 82.1 10.3 7.6 380

KY 85.0 11.3 3.7 301NC 79.9 10.8 9.3 333OK 78.7 13.0 8.3 169PA 82.9 13.8 3.3 912RI 83.0 8.3 8.7 230

VT 84.8 0.6 14.5 165WA 82.1 14.3 3.6 196WV 89.7 6.9 3.4 87WY 75.6 17.1 7.3 287


122

Health

BI-20. When was his/her last physical exam?State % Within Past

Year% Over A Year

Ago% Don't

KnowTotal

AZ 65.9 10.2 24.0 551CA – RCOC 86.6 8.4 5.1 455

CT 88.5 5.3 6.1 358DE 76.3 5.4 18.3 312HI 52.6 41.1 6.3 508IA 84.9 10.0 5.1 410IL 86.1 10.9 3.0 439IN 95.6 3.4 1.1 562

KY 78.8 9.7 11.5 505NC 88.5 7.1 4.4 504OK 96.3 3.2 0.5 401PA 87.7 5.2 7.1 1385RI 87.6 5.3 7.1 379

VT 91.9 6.5 1.6 248WA 66.3 4.5 29.2 312WV 93.5 2.2 4.3 139WY 78.6 6.8 14.6 397


BI-21. If female, when was her last OB/GYN exam?

State % Within Past Year

% Over A Year Ago

% Never Had An

Exam

% Don't Know

Total

AZ 34.4 17.6 4.0 44.0 250CA - RCOC 48.6 13.3 8.8 29.3 181

CT 65.1 13.8 7.9 13.2 152DE 59.6 11.6 1.4 27.4 146HI 27.4 40.4 1.3 30.9 223IA 52.7 13.2 7.1 26.9 182IL 45.5 19.3 5.7 29.5 176IN 71.8 11.9 8.8 7.5 227

KY 39.9 17.4 7.5 35.2 213NC 56.8 14.0 9.0 20.3 222OK 62.4 14.6 4.5 18.5 157PA 58.2 11.7 7.5 22.6 598RI 54.1 9.4 8.3 28.2 181

VT Not availableWA 36.8 9.6 2.2 51.5 136WV 44.6 16.2 10.8 28.4 74WY 55.6 11.8 9.6 23.0 178

State average 50.8 15.4 6.5 27.3Total 51.5 15.3 6.6 26.6 3296

123

BI-22. When was his/her last dentist visit?

State% Within Last

Six Months

% Over Six Months

Ago% Don't

Know Total

AZ 34.5 27.3 38.2 539CA - RCOC 45.8 39.4 14.8 454

CT 69.3 17.9 12.8 352DE 57.7 16.0 26.3 312HI 19.9 62.6 17.5 508IA 65.8 20.2 14.0 406IL 36.0 54.9 9.1 439IN 69.0 26.7 4.3 562

KY 43.0 30.9 26.1 505NC 45.6 40.0 14.5 498OK 60.1 34.7 5.2 401PA 50.4 26.7 22.9 1378RI 62.8 16.6 20.6 379

VT Not available

WA 39.0 18.5 42.5 308WV 48.9 33.8 17.3 139WY 56.2 29.7 14.1 397


124

Medications

BI-17. Does this person currently take medications for…?23

State Mood Disorders Anxiety

N % Yes N % YesAZ 522 17.6 505 12.3

CA - RCOC 454 18.3 453 15.7CT 344 28.8 327 17.7DE 312 21.2 312 15.4HI 508 6.9 508 5.7IA 397 30.2 380 20.3IL 439 23.5 439 9.6IN 561 35.1 561 19.1

KY 505 27.3 505 20.4NC 155 42.6 111 21.6OK 400 30.8 401 23.9PA 1362 28.8 1337 18.2RI 379 26.6 379 23.0

VT Not available

WA 293 22.5 282 17.0WV 139 27.3 139 23.0WY 397 26.7 397 16.6

State average 25.9 17.5Total 7167 25.5 7036 17.0

23 Due to a coding error, medication taken for behavior problems is not reported.

125

Respect and Rights

Q20. Do you know who your advocate or guardian is?

State % No % Maybe, Not Sure % Yes Total

AZ 11.4 8.1 80.5 236CA - RCOC 6.4 1.2 92.4 250

CT 10.6 7.5 81.9 160DE 25.6 3.8 70.7 133HI 7.8 10.2 82.0 256IA 1.8 3.6 94.6 224IL 3.0 2.0 95.0 200IN 7.4 1.7 90.9 176

KY 8.1 5.9 86.0 222NC 6.7 5.5 87.8 238OK 7.1 4.7 88.2 169PA Not available

RI 16.4 2.1 81.4 140VT24 14.4 1.3 84.4 160WA 6.7 7.4 85.9 135WV 8.3 6.7 85.0 60WY 12.0 6.0 82.1 234


24 Source: Culbert et al. (2002). Page 85. Results based on question, “Who would you ask to help you change services or supports you do not like?” Response options differ slightly: Named, Someone – but did not name, Nobody named.

126

Q45. Do people read your mail without your permission?State % Yes % Some Mail % No Total

AZ 10.3 9.0 80.7 476CA - RCOC 11.0 2.9 86.0 408

CT 13.1 11.5 75.4 313DE 2.4 2.0 95.5 247HI 22.9 17.5 59.6 280IA 5.3 4.2 90.5 378IL 2.6 6.5 90.9 416IN 6.6 3.7 89.7 515

KY 10.2 12.2 77.6 402NC 8.0 4.1 87.9 414OK 22.5 15.9 61.5 364PA 18.1 81.9 0.0 1143

VT25 8.5 Not available 91.5 177RI 8.6 3.4 88.1 327

WA 7.7 6.3 85.9 284WV 21.8 10.5 67.7 133WY 6.8 8.0 85.2 324


25 Source: Culbert et al. (2002). Page 84. Results based on question, “Does anyone ever open your mail without asking you first?” Response options only include: Yes, No.

127

Q46. Can you be alone with [guests], or does someone have to be with you?

State% No,

SomeoneAlways Present

% Some Restrictions

% Yes, CanBe Alone With

GuestsTotal

AZ 13.2 17.7 69.1 418CA - RCOC 9.2 10.6 80.1 292

CT 13.2 12.4 74.4 258DE 7.3 6.6 86.1 137HI 13.8 12.2 74.0 254IA 2.5 29.6 67.9 321IL 5.2 15.7 79.1 287IN 9.0 8.8 82.2 411

KY 8.8 10.5 80.8 354NC 4.7 14.3 81.1 322OK 7.3 13.5 79.2 342PA 4.9 5.7 89.5 1236RI 19.7 5.7 74.5 314

VT 21.2 3.0 75.8 165WA 7.1 18.6 74.3 226WV 0.0 17.0 83.0 94WY 5.4 25.2 69.5 298


Q47. Are you allowed to use the phone when you want to?

State % NotAllowed

% SomeRestrictions

% CanUse Anytime Total

AZ 8.1 13.3 78.6 443CA – RCOC 2.5 7.9 89.6 366

CT 2.3 8.7 89.0 263DE 3.0 5.4 91.6 202HI 6.7 15.5 77.8 252IA 2.3 9.4 88.4 352IL 2.9 8.8 88.2 340IN 5.6 8.5 85.9 448

KY 9.7 12.8 77.5 351NC 1.9 8.8 89.4 376OK 1.0 8.1 90.8 295PA 0.0 8.7 91.3 1019RI 5.1 3.6 91.3 275

VT 7.0 5.9 87.0 185WA 0.9 6.9 92.2 231WV 4.9 19.4 75.7 103WY 3.9 14.1 82.0 306


128

Q9. Do people (including staff) let you know before they come into your home?State % No % Sometimes % Yes Total

AZ 8.4 5.3 86.3 190CA - RCOC 4.0 3.5 92.5 226





Q10. Do people (including staff) ask permission before coming into your bedroom?State % No % Sometimes % Yes Total

AZ 8.8 3.9 87.3 205CA - RCOC 10.5 7.6 81.9 237



VT 11.2 3.7 85.1 188WA 11.6 14.0 74.4 164WV 27.8 11.1 61.1 72WY 9.8 7.6 82.6 264


129

Q48. Have you ever participated in a self-advocacy group, meeting, conference, or event?

State % No% Had

OpportunityBut Chose

Not To% Yes Total

AZ 49.9 10.7 39.4 475CA – RCOC 66.2 13.8 20.0 390


KY 86.2 Not available 13.8 486NC 59.0 3.8 37.3 424OK 67.8 Not available 32.2 382PA 82.9 Not available 17.1 1209RI 67.5 4.2 28.4 335



Q5. Can you be alone if you want to?State % No % Yes Total

AZ 12.1 87.9 282CA - RCOC 11.0 89.0 336

CT 8.1 91.9 221DE 10.1 89.9 179HI 13.8 86.2 247IA 18.6 81.4 264IL 13.1 86.9 268IN 4.0 96.0 303

KY 7.4 92.6 283NC 5.1 94.9 314OK 25.1 74.9 167PA 1.0 99.0 900RI 5.9 94.1 205

VT 16.8 83.2 191WA 4.7 95.3 169WV 7.5 92.5 80WY 8.2 91.8 279


130

Q2. Is [staff who helps you at job/day activity] nice and polite to you?State % No % Sometimes % Yes Total

AZ 2.7 8.0 89.3 225CA - RCOC 0.3 3.4 96.3 298

CT 1.0 3.5 95.5 199DE 1.1 7.0 92.0 187HI 0.4 6.4 93.1 233IA 1.5 6.9 91.5 259IL 0.0 3.8 96.2 287IN 1.5 6.0 92.5 265

KY 1.9 4.5 93.6 265NC 0.0 2.8 97.2 214OK 1.6 4.0 94.4 125PA 1.6 8.8 89.6 685RI 1.0 1.5 97.5 199

VT 2.6 7.0 90.4 114WA 2.2 3.6 94.2 139WV 0.0 4.7 95.3 64WY 0.0 3.5 96.5 256


Q8. Is [staff who helps you at home] nice and polite to you?State % No % Sometimes % Yes Total

AZ 7.9 4.9 87.2 164CA - RCOC 7.7 2.4 89.9 208

CT 2.9 4.3 92.8 208DE 6.4 11.0 82.6 109HI 1.6 6.2 92.2 129IA 2.6 9.6 87.8 271IL 1.0 6.2 92.8 194IN 1.4 3.7 94.8 347

KY 8.5 7.5 84.1 201NC 1.6 7.9 90.5 252OK 1.2 6.5 92.4 170PA 1.2 7.3 91.5 504RI 4.1 2.9 92.9 170

VT Not available

WA 1.4 6.1 92.5 147WV 0.0 0.0 100.0 45WY 9.7 8.2 82.2 269


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