january 2006 project :: 1713 GCDD 5-Year Plan Research Report Individual Survey prepared for: Minnesota Governor’s Council on Developmental Disabilities prepared by: Market Response International table of contents 1:: project overview . . . . . . . . . . . 3 background and objectives . . . . . . .4 research design .. . . . . . . . . . . .4 2:: sample profile . . . . . . . . . . . 7 3:: IPSII & basic needs detail . . . . . . 12 4:: IPSII & basic needs summary. … . . . 43 5:: critical improvements. . .. .. . . . . 51 6:: family support. . . . . .. . . . . . . 54 7:: education. . . . .. . .. . . . . . . . 56 8:: comparison with 2000 study. . .. . . . 61 9:: summary . . . .. . . . . . . . . . . . 65 10:: appendix . . . . .. . . . . . . . . . 69 1:: project overview Background Under the Developmental Disabilities Assistance and Bill of Rights Act, each state was granted the authority to create a Council on Developmental Disabilities. For the past thirty-five years, the Minnesota Governor’s Council on Developmental Disabilities (GCDD) has served as an advocate for people with developmental disabilities - people with the most severe disabilities who may require long term service and support (about 1.8% of the state population). With support from the GCDD this segment of the population strives to be “treated as people first”. The social model has redefined “disability” and has put responsibility on society to change its attitudes and practices to include persons with developmental disabilities, rather than changing this population to fit society. The GCDD’s charter is to assure that individuals with developmental disabilities receive the necessary support to achieve increased independence, productivity, self determination, integration and inclusion (IPSII) in the community. As part of this charter, the GCDD is required to develop a 5-year plan. The GCDD decided they wanted to repeat the Quality of Life Assessment Survey (QOLAS), which was initially conducted in fall 2000, and use the new findings for input for their next 5-year plan. Research Objective Our objective was to conduct a customer-focused study among people with developmental disabilities in Minnesota to measure the degree to which they believe they are independent, productive, self determined, integrated and included in the community. This research was conducted via online and mail surveys. Methodology previous studies :: In fall of 2005, GCDD commissioned MarketResponse to conduct a study using the 2000 survey as a benchmark. The 2000 survey was adapted based on information learned over the past five years, but the majority of the questions remained the same for comparison’s sake. contacting respondents :: Historically, it has been difficult to survey the population of people with developmental disabilities because GCDD does not have a list of these individuals nor is a list available to be purchased from a list provider. Therefore, each time we survey this population, we use creative means of reaching the individuals. :: Providers of services to individuals with developmental disabilities – including all organizations that receive GCDD funding -- identified through lists obtained from the GCDD, were asked to recruit their constituents to participate in this study. We asked the provider to send an e-mail invitation to everyone who would be interested in participating in the survey. :: The GCDD staff personally contacted 45 local self-advocacy groups and over 100 organizations, universities, schools, and listservs to notify people about the surveys. Several state agencies, including the Department of Human Services and the Ombudsman Office for Mental Health and Developmental Disabilities, placed a link to the surveys on their web sites. survey format :: This survey was administered primarily via Internet. :: Paper copies were available upon request by calling a toll-free number. Some people called because they did not have access to the Internet but the majority of the hard copies were sent to providers who had direct contact with individuals (i.e. clinics, resource centers etc.) rather than an e-mail list of their constituents. :: 435 respondents completed the survey on the Internet, which is 79% of the total respondents. 117 respondents completed the survey by mail which is 21% of the total respondents. accommodations :: A call-in center was set up to handle questions and distribute paper copies. :: To accommodate Spanish speaking respondents, the survey was translated into Spanish and distributed by mail only. We had 13 respondents return the survey in Spanish, which is 11% of the mail respondents. :: In some cases, both a person with a developmental disability and someone close to them (such as a parent or caregiver) completed the questionnaire together. When the person with the developmental disability was unable to participate in the questionnaire, the parent or care giver responded on this person’s behalf. future research :: One enhancement of the study conducted in 2005, was asking for the respondents to give us their e-mail address to participate in future GCDD research. Fifty-one (51%) of the online respondents shared their e-mail addresses. This list will be shared with GovDelivery who will manage the e-mail addresses and notify respondents of upcoming surveys and GCDD website changes. 2:: sample profile Which of the following statements best describes you? n=552 Individuals with a developmental disability 19% Parent or other family member of an individual with a developmental disability 47% Friend, staff member, or advocate of an individual with a developmental disability 43% Note: Multiple responses allowed. Respondent Zip Codes Twin Cities Metro Area* 59% Greater Minnesota 41% According to 2000 Minnesota census data, 54% of the population lives in the Twin Cities Metro Area. Respondents were limited to individuals with Minnesota zip codes. There was strong representation from both the Twin Cities Metro Area and the rest of the state. *The Twin Cities Metro Area is defined as the following seven counties: Anoka, Carver, Dakota, Hennepin, Ramsey, Scott and Washington. Age of individual with a developmental disability: Under 19 64% 19 or older 36% I have lived in Minnesota for: 5 years or less 9% 6-10 years 13% 11-15 years 13% 16-20 years 13% 21-30 years 18% 31-40 years 18% 41-50 years 10% Over 50 years 11% Primary Residence With parents or relatives 47% Group home 39% Other(combined)* 14% With parents or relatives 47% Group home 39% Own apartment or house, less than 24 hour supervision 9% Own apartment or house, with 24 hour supervision 3% Adult foster home/foster parents 2% *Other (combined) includes: Own apartment or house, less than 24 hour supervision; Own apartment or house, with 24 hour supervision; Adult foster home/foster parents; et al.. Ethnicity of individual with a developmental disability n=543 White,European (475) Black,African American (35) American Indian, Native American or Alaska Native (21) Hispanic, Latino (19) Asian (9) Other (19) Actual Minnesota Population* White, European 75% Black, African American 12% American Indian, Native American or Alaska Native 1% Hispanic, Latino 13% Asian 4% Other 6% Note: Multiple responses allowed. *According to 2000 Minnesota Census data. At what level does your developmental disability impact your… Ability to learn Severely Impacts 48 Moderately Impacts 33 Slightly Impacts 15 Has No Impact 3 *Ability to be mobile Severely Impacts 30 Moderately Impacts 20 Slightly Impacts 22 Has No Impact 28 *Ability to use receptive and expressive language Severely Impacts 32 Moderately Impacts 29 Slightly Impacts 26 Has No Impact 13 Ability to be economically self-sufficient Severely Impacts 65 Moderately Impacts 21 Slightly Impacts 7 Has No Impact 6 Ability to live independently Severely Impacts 64 Moderately Impacts 20 Slightly Impacts 10 Has No Impact 7 Ability to take care of yourself Severely Impacts 45 Moderately Impacts 30 Slightly Impacts 17 Has No Impact 8 Degree disability affects individual Severely affects 63% Moderately affects 27% Slightly affects, or no impact 10% *Respondents that checked “severely impacts” for any or all of ability to learn, ability to be mobile, and ability to use receptive and expressive language were classified as “severely affects.” Those with a highest rating of “moderately impacts” for any or all were classified as “moderately affects.” Respondents that did not check “severely impacts” or “moderately impacts” for these three statements were classified as “slightly affects, or no impact.” 3:: IPSII & basic needs detail Percent of respondents who… n=551 All things considered, my community is a good place for people with developmental disabilities. Agree Strongly 28 Agree Somewhat 45 Neither 10 Disagree Somewhat 11 Disagree Strongly 6 My community is becoming a better place for individuals with developmental disabilities. Agree Strongly 27 Agree Somewhat 48 Neither 4 Disagree Somewhat 14 Disagree Strongly 7 :: The majority of respondents agreed somewhat or strongly that their community is a good place for people with developmental disabilities and that it is getting better. IPSII defined What is IPSII? -- Independence, Productivity, Self Determination, Integration and Inclusion As we stated in the background section of this report: The GCDD’s charter is to assure that individuals with developmental disabilities receive the necessary support to achieve increased independence, productivity, self determination, integration and inclusion (IPSII) in the community. In 2000, this list consisted of only Independence, Productivity, Integration and Inclusion (IPII), i.e. Self Determination was not included in the GCDD charter until later that same year. Since the GCDD was responsible for achieving these goals, the best way to determine its success was to measure these concepts. Federal law defines these terms; however, they were complex and did not represent the voice of the customer. Therefore, our first step in 2000, was to interview individuals with developmental disabilities and their families to get an understanding of their situation and what these broader terms, IPII, might mean to them in everyday life. Through these interviews we developed a list of statements to help describe the larger concepts of IPII using the voice of the customer. These statements were then verified in the 2000 study, and reduced to a smaller set of drivers using statistical regression analysis. The smaller set of statements is what was used for this study. Self Determination was added after the 2000 study and we did not have the opportunity to obtain the voice of the customer on this concept. The idea of Self Determination was somewhat overlapping with the original IPII terms. However, we saw it as partly a subset and partly an expansion of the concept of Independence. We also added a list of “basic needs” statements to the survey. These statements covered aspects of an individual’s situation that we felt were not covered by the IPII concepts-such as having enough money to live on. Below is a description of how we defined IPSII for this study: Independence: Major aspects :: mobility :: privacy :: information access :: housing options (suitable, near family, etc.) :: choice of staff /provider Productivity: Major aspects :: productivity at home v. job / volunteering :: responsibility :: improvement :: recognition Self Determination: Major aspects :: self expression :: control of daily schedule :: goal setting / problem solving / decision making :: spending money (own, public funding, etc.) :: control over who I live with Integration: Major aspects :: resources :: support :: social opportunities :: rights to equality :: acceptance Inclusion: Major aspects :: treated with respect / as an equal :: develop meaningful relationships Independence v. Self Determination These concepts are somewhat overlapping; however, we define Independence as more related to access, privacy and having options; while we see Self Determination as the ability to make one’s own decisions when given that access and those options. Integration v. Inclusion These concepts are somewhat overlapping; however, we define Integration as having the appropriate rights and resources within a community – meaning that the community is structured to support the individual; while we see Inclusion as more of a feeling of how one is treated. basic needs Percent of respondents who… n = 549 I feel comfortable in the building or house where I live, it feels like home. Agree Strongly 62 Agree Somewhat 23 Neither 8 Disagree Somewhat 5 Disagree Strongly 3 I have enough money to live on. Agree Strongly 19 Agree Somewhat 28 Neither 17 Disagree Somewhat 18 Disagree Strongly 18 I know what to do if my health or safety is in jeopardy. Agree Strongly 16 Agree Somewhat 28 Neither 11 Disagree Somewhat 22 Disagree Strongly 23 I have access to the healthcare I need. Agree Strongly 47 Agree Somewhat 35 Neither 4 Disagree Somewhat 10 Disagree Strongly 4 I feel safe in the neighborhood where I live. Agree Strongly 57 Agree Somewhat 31 Neither 6 Disagree Somewhat 4 Disagree Strongly 2 My future will be secure, even if something happens to my parents / current staff member, friend or advocate. Agree Strongly 19 Agree Somewhat 27 Neither 10 Disagree Somewhat 21 Disagree Strongly 23 :: Some individual basic needs require real improvement -- with less than half the respondents agreeing that they have enough money to live on, that they know what to do if their health or safety is in jeopardy or that their future will be secure. These and other similar basic needs should be addressed togehter before people can substantially improve their independence, productivity, self determination, integration or inclusion. :: Individuals who participated in the surveys were more likely to agree that their basic needs are being met than parents, friends and others who assisted individuals in completing the survey. :: Older respondents, respondents with less severe disabilities, individuals who work or volunteer, individuals who do not live at their parents’ home, and people of European descent (white) also tended to rate their basic needs higher than others. basic needs by segment (Complex chart deleted) satisfaction with independence I am satisfied with my current level of Independence: Percent of respondents who… n = 549 Agree Strongly 24 Agree Somewhat 36 Neither Agree Nor Disagree 15 Disagree Somewhat 20 Disagree Strongly 5 :: 60% of respondents agreed with the statement that they are satisfied with their current level of independence. :: Responses varied by respondent segment in a very similar manner to the basic needs questions. attributes of independence I can (even if someone helps me) get to where I want to go. Agree Strongly 40 Agree Somewhat 39 Neither 7 Disagree Somewhat 9 Disagree Strongly 5 I can meet people in private, when I want. Agree Strongly 35 Agree Somewhat 31 Neither 18 Disagree Somewhat 10 Disagree Strongly 7 I can be alone and have privacy, when I feel I need it. Agree Strongly 44 Agree Somewhat 34 Neither 10 Disagree Somewhat 9 Disagree Strongly 4 Only people who are allowed to know my personal information have access to it. Agree Strongly 45 Agree Somewhat 33 Neither 10 Disagree Somewhat 10 Disagree Strongly 2 Finding a suitable housing option for me is possible. Agree Strongly 26 Agree Somewhat 25 Neither 25 Disagree Somewhat 15 Disagree Strongly 9 I can live near the people who are important to me. Agree Strongly 40 Agree Somewhat 31 Neither 14 Disagree Somewhat 10 Disagree Strongly 5 I choose the staff who work with me. Agree Strongly 15 Agree Somewhat 24 Neither 23 Disagree Somewhat 18 Disagree Strongly 20 I choose the provider who assists me. Agree Strongly 18 Agree Somewhat 29 Neither 24 Disagree Somewhat 15 Disagree Strongly 15 I am as independent as I can be given my developmental disability. Agree Strongly 28 Agree Somewhat 44 Neither 11 Disagree Somewhat 13 Disagree Strongly 4 :: Information access, privacy issues and mobility were rated relatively highly as aspects of independence that are being met; while housing options and being able to choose one’s provider and staff received lower ratings. attributes of independence by segment (Complex chart deleted) satisfaction with productivity I am satisfied with my current level of Productivity: Percent of respondents who… n = 126* Agree Strongly 14 Agree Somewhat 39 Neither Agree Nor Disagree 7 Disagree Somewhat 28 Disagree Strongly 12 :: 53% of respondents agreed with the statement that they are satisfied with their current level of productivity. :: Respondents were more likely to ‘disagree somewhat’ with this statement than that of self determination, integration, and inclusion. *smaller sample of respondents weighted to represent total survey sample attributes of productivity Percent of respondents who… n = 549 I have an appropriate amount of responsibility at home. Agree Somewhat 27 Agree Strongly 47 Neither 11 Disagree Somewhat 11 Disagree Strongly 3 I receive recognition for the things that I do at home. Agree Somewhat 33 Agree Strongly 49 Neither 9 Disagree Somewhat 8 Disagree Strongly 2 I have been improving my skills at home. Agree Somewhat 49 Agree Strongly 38 Neither 6 Disagree Somewhat 3 Disagree Strongly 4 I am as productive as I can be given my developmental disability.* Agree Somewhat 17 Agree Strongly 45 Neither 6 Disagree Somewhat 21 Disagree Strongly 11 :: Individuals’ feelings of productivity in the home environment were largely being met; however respondents were much more likely to disagree that they are as productive as they can be. :: Individuals with developmental disabilities who filled the survey out for themselves were significantly more likely to state that they had an appropriate amount of responsibility at home than the parents, friends and others who filled the survey out with/for them. :: Respondents who do not work or volunteer, who are under 19 and/or of color, were much less likely to agree that they are as productive as they can be. *smaller sample of respondents weighted to represent total survey sample attributes of productivity by segment (Complex chart deleted) attributes of productivity For respondents over 15 years of age, do you work or volunteer outside your home? n = 418 No 42% Yes, I have a job I get paid for 43% Yes, I volunteer my time 15% If work or Volunteer… On average, how many hours do you work or volunteer each week? n = 215 5 or fewer 16% 6 - 10 13% 11-20 28% 21-30 32% More than 30 11% I work / volunteer… n = 221 Too many hours 3% The right amount of hours 66% Too few hours 31% :: 58% of respondents either work or volunteer outside their home :: The majority of individuals worked less than 20 hours per week :: Approximately 2/3rds of respondents thought they worked the appropriate number of hours; however 31% would like to work more hours than they do. attributes of productivity For respondents over 15 years of age, who work or volunteer n = 223 Where I work or volunteer… Percent of respondents who… I am appropriately challenged by my responsibilities. Agree Strongly 31 Agree Somewhat 48 Neither 3 Disagree Somewhat 14 Disagree Strongly 4 I am rewarded for the things I do. Agree Strongly 39 Agree Somewhat 48 Neither 4 Disagree Somewhat 7 Disagree Strongly 2 I have been improving my skills. Agree Strongly 40 Agree Somewhat 46 Neither 4 Disagree Somewhat 9 Disagree Strongly 2 :: Individuals who work or volunteer gave relatively high ratings to these productivity aspects in their work environment. However, some feel that they could be more appropriately challenged by their responsibilities at work. :: There was less variance across the respondent segments on these statements. The exceptions were that Twin Cities Metro Area residents were more likely to agree than their counterparts in greater Minnesota, and individuals with disabilities completing the survey were more likely to agree than parents, friends and others who completed the survey with / for them. attributes of productivity by segment (Complex chart deleted) satisfaction with self determination I am satisfied with my current level of Self Determination: Percent of respondents who… n = 549 Agree Strongly 24 Agree Somewhat 37 Neither Agree Nor Disagree 20 Disagree Somewhat 13 Disagree Strongly 6 :: 61% of respondents agreed with the statement that they are satisfied with their current level of self determination :: The respondents’ level of agreement with self determination aspects varied dramatically between the respondent segments. These variations were similar to those reported in the basic needs and independence statements. attributes of self determination Percent of respondents who… n = 549 I can (even if someone helps me) decorate or arrange my living area how I like it. Agree Strongly 38 Agree Somewhat 33 Neither 17 Disagree Somewhat 8 Disagree Strongly 4 I have control over how I present myself, what I choose to wear, my hairstyle, etc. Agree Strongly 41 Agree Somewhat 42 Neither 10 Disagree Somewhat 5 Disagree Strongly 3 I have control over my daily schedule. Agree Strongly 20 Agree Somewhat 38 Neither 17 Disagree Somewhat 20 Disagree Strongly 6 I can set outcomes (goals) for myself. Agree Strongly 23 Agree Somewhat 36 Neither 18 Disagree Somewhat 15 Disagree Strongly 8 I can decide how I spend my money. Agree Strongly 20 Agree Somewhat 42 Neither 12 Disagree Somewhat 19 Disagree Strongly 6 I can make decisions that will affect my future. Agree Strongly 19 Agree Somewhat 39 Neither 21 Disagree Somewhat 13 Disagree Strongly 9 I solve my own problems (even if someone helps me). Agree Strongly 20 Agree Somewhat 42 Neither 12 Disagree Somewhat 19 Disagree Strongly 6 I can decide how public funds are spent for my services and support. Agree Strongly 10 Agree Somewhat 15 Neither 29 Disagree Somewhat 24 Disagree Strongly 22 I have control over who I live with. Agree Strongly 18 Agree Somewhat 19 Neither 25 Disagree Somewhat 20 Disagree Strongly 18 I have as much self determination as possible given my developmental disability. Agree Strongly 27 Agree Somewhat 38 Neither 15 Disagree Somewhat 14 Disagree Strongly 6 :: Self expression (decorating living space and personal presentation) received the highest ratings for self determination, while control over services spending and who they live with received the lowest ratings. attributes of self determination by segment (Complex chart deleted) attributes of self determination by segment (Complex chart deleted) satisfaction with integration I am satisfied with my current level of Integration: Percent of respondents who… n = 548 Agree Strongly 22 Agree Somewhat 37 Neither Agree Nor Disagree 12 Disagree Somewhat 21 Disagree Strongly 7 :: 59% of respondents agreed with the statement that they are satisfied with their current level of integration. :: Respondents were more likely to “disagree somewhat” with this statement than their satisfaction with independence or self determination. :: Responses varied by respondent segment in a manner similar to basic needs, independence and self determination. :: Parents, friends, or advocates of the individual with a developmental disability were more likely to disagree with this statement than the individuals themselves. attributes of integration Percent of respondents who… n = 548 Resources that I need are available in my community. Agree Strongly 19 Agree Somewhat 47 Neither 5 Disagree Somewhat 21 Disagree Strongly 9 The personal support I require is available in my community. Agree Strongly 25 Agree Somewhat 43 Neither 5 Disagree Somewhat 16 Disagree Strongly 9 I have opportunities to do things with people my age. Agree Strongly 28 Agree Somewhat 43 Neither 4 Disagree Somewhat 16 Disagree Strongly 9 My rights to equality are acknowledged by my community. Agree Strongly 15 Agree Somewhat 39 Neither 11 Disagree Somewhat 28 Disagree Strongly 7 I have friends who do not have developmental disabilities. Agree Strongly 32 Agree Somewhat 38 Neither 4 Disagree Somewhat 16 Disagree Strongly 9 I feel comfortable going outside my immediate community. Agree Strongly 26 Agree Somewhat 38 Neither 11 Disagree Somewhat 19 Disagree Strongly 7 I am as integrated as I can be given my developmental disability. Agree Strongly 24 Agree Somewhat 42 Neither 9 Disagree Somewhat 19 Disagree Strongly 6 :: Opportunities to make friends with people who do not have disabilities and to do things with people their own age received the highest levels of agreement for integration. :: Availability of resources and personal support in their community as well as an acknowledgement of rights to equality received the lowest levels of agreement. attributes of integration by segment (Complex chart deleted) satisfaction with inclusion I am satisfied with my current level of Inclusion: Percent of respondents who… n = 549 Agree Strongly 19 Agree Somewhat 35 Neither Agree Nor Disagree 11 Disagree Somewhat 26 Disagree Strongly 9 :: 54% of respondents agreed with the statement that they are satisfied with their current level of inclusion – which is the lowest rating for IPSII. :: Respondents were more likely to “disagree somewhat” with this statement than their satisfaction with independence or self determination. :: Responses again varied by respondent segment in a manner similar to basic needs, independence and self determination. :: Respondents of color were more likely to disagree with this statement than those of white/European descent. attributes of inclusion Percent of respondents who… n = 549 People without a disability treat me as an equal. Agree Strongly 13 Agree Somewhat 35 Neither 7 Disagree Somewhat 31 Disagree Strongly 14 People treat me with respect. Agree Strongly 21 Agree Somewhat 46 Neither 5 Disagree Somewhat 22 Disagree Strongly 7 I have opportunities to develop meaningful relationships with people who do not have a developmental disability. Agree Strongly 20 Agree Somewhat 41 Neither 7 Disagree Somewhat 12 Disagree Strongly 4 I have opportunities to develop meaningful relationships with people who have a developmental disability. Agree Strongly 28 Agree Somewhat 49 Neither 7 Disagree Somewhat 12 Disagree Strongly 4 I am as included in society as I can be. Agree Strongly 20 Agree Somewhat 36 Neither 9 Disagree Somewhat 24 Disagree Strongly 11 :: Respondents agreed most that they have opportunities to develop friendships with other individuals who have developmental disabilities. :: Respondents were less likely to agree that they are treated as an equal, treated with respect and have opportunities to develop friendships with individuals who do not have a developmental disability. attributes of inclusion by segment (Complex chart deleted) 4:: IPSII & basic needs summary overall IPSII & basic needs satisfaction Percent of respondents who… I am satisfied with my current level of… Basic Needs (avg.*) Agree Somewhat 37 Agree Strongly 27 Top 2 Box Total 64 % Independence Agree Somewhat 24 Agree Strongly 36 Top 2 Box Total 60 % Productivity** Agree Somewhat 14 Agree Strongly 39 Top 2 Box Total 53 % Self Determination Agree Somewhat 24 Agree Strongly 37 Top 2 Box Total 61 % Integration Agree Somewhat 22 Agree Strongly 37 Top 2 Box Total 59 % Inclusion Agree Somewhat 19 Agree Strongly 35 Top 2 Box Total 54 % * Average of 6 basic needs statements **Smaller sample of respondents weighted to represent total survey sample :: Of the ISPII statements, respondents were most satisfied with their current levels of Self Determination and Independence and least satisfied with their current levels of Productivity and Inclusion. overall IPSII & basic needs satisfaction Percent of respondents who… Person Responding to Survey Individual w/ developmental disability n = 107 Basic Needs (avg.*) Agree Somewhat 52 Agree Strongly 25 Top 2 Box Total 77% Independence Agree Somewhat 58 Agree Strongly 22 Top 2 Box Total 80% Productivity** Agree Somewhat 48 Agree Strongly 39 Top 2 Box Total 87% Self Determination Agree Somewhat 56 Agree Strongly 26 Top 2 Box Total 82% Integration Agree Somewhat 42 Agree Strongly 34 Top 2 Box Total 76% Inclusion Agree Somewhat 41 Agree Strongly 34 Top 2 Box Total 75% Parents, friends, others n = 462 Basic Needs (avg.*) Agree Somewhat 33 Agree Strongly 30 Top 2 Box Total 63% Independence Agree Somewhat 18 Agree Strongly 39 Top 2 Box Total 57% Productivity** Agree Somewhat 12 Agree Strongly 39 Top 2 Box Total 51% Self Determination Agree Somewhat 18 Agree Strongly 39 Top 2 Box Total 57% Integration Agree Somewhat 19 Agree Strongly 38 Top 2 Box Total 57% Inclusion Agree Somewhat 15 Agree Strongly 35 Top 2 Box Total 50% *Average of 6 basic needs statements **Smaller sample of respondents weighted to represent total survey sample :: Individuals with a developmental disability who completed this survey were much more likely to be satisfied with their levels of IPSII than parents, friends, and others who completed the survey with/for them. This may be because the individuals completing the survey described themselves as having less severe disabilities; however since the impact of the disability is also self reported, this may be a reflection of optimism among this group relative to their parents, friends and others who are advocates fighting the battle for improvement. overall IPSII & basic needs satisfaction Age of the Individual with a Developmental Disability Percent of respondents who… Under 19 Years Old n = 196 Basic Needs (avg.*) Agree Somewhat 29 Agree Strongly 25 Top 2 Box Total 54% Independence Agree Somewhat 12 Agree Strongly 28 Top 2 Box Total 40% Productivity** Agree Somewhat 4 Agree Strongly 33 Top 2 Box Total 37% Self Determination Agree Somewhat 12 Agree Strongly 30 Top 2 Box Total 42% Integration Agree Somewhat 12 Agree Strongly 34 Top 2 Box Total 46% Inclusion Agree Somewhat 8 Agree Strongly 29 Top 2 Box Total 37% 19+ Years Old n = 354 Basic Needs (avg.*) Agree Somewhat 41 Agree Strongly 31 Top 2 Box Total 72% Independence Agree Somewhat 31 Agree Strongly 40 Top 2 Box Total 71% Productivity** Agree Somewhat 20 Agree Strongly 42 Top 2 Box Total 62% Self Determination Agree Somewhat 31 Agree Strongly 40 Top 2 Box Total 71% Integration Agree Somewhat 27 Agree Strongly 39 Top 2 Box Total 66% Inclusion Agree Somewhat 24 Agree Strongly 39 Top 2 Box Total 63% *Average of 6 basic needs statements **Smaller sample of respondents weighted to represent total survey sample :: Respondents over age 19 were much more positive about their situation than those under 19. In general, it’s natural that adults would be more independent and productive than children. Other possible explanations for this can be seen when looking at the demographic make up of these groups. In the over 19 group, the respondents were much more likely to: :: participate in the completion of the survey :: describe themselves as having a less severe disability, and :: be of white/European descent,all of which were identified as leading to more positive responses. overall IPSII & basic needs satisfaction Self-reported Degree Disability Affects Individual’s Learning, Mobility and Language Percent of respondents who… Affect Severely n = 347 Basic Needs (avg.*) Agree Somewhat 31 Agree Strongly 28 Top 2 Box Total 59% Independence Agree Somewhat 17 Agree Strongly 36 Top 2 Box Total 53% Productivity** Agree Somewhat 10 Agree Strongly 37 Top 2 Box Total 47% Self Determination Agree Somewhat 18 Agree Strongly 37 Top 2 Box Total 55% Integration Agree Somewhat 17 Agree Strongly 37 Top 2 Box Total 54% Inclusion Agree Somewhat 14 Agree Strongly 32 Top 2 Box Total 46% Affect Moderately n = 150 Basic Needs (avg.*) Agree Somewhat 41 Agree Strongly 29 Top 2 Box Total 70% Independence Agree Somewhat 32 Agree Strongly 41 Top 2 Box Total 53% Productivity** Agree Somewhat 16 Agree Strongly 49 Top 2 Box Total 65% Self Determination Agree Somewhat 30 Agree Strongly 38 Top 2 Box Total 68% Integration Agree Somewhat 27 Agree Strongly 37 Top 2 Box Total 64% Inclusion Agree Somewhat 24 Agree Strongly 41 Top 2 Box Total 65% Affect Slightly n = 55 Basic Needs (avg.*) Agree Somewhat 48 Agree Strongly 31 Top 2 Box Total 79% Independence Agree Somewhat 49 Agree Strongly 26 Top 2 Box Total 75% Productivity** Agree Somewhat 37 Agree Strongly 26 Top 2 Box Total 63% Self Determination Agree Somewhat 47 Agree Strongly 34 Top 2 Box Total 81% Integration Agree Somewhat 44 Agree Strongly 40 Top 2 Box Total 84% Inclusion Agree Somewhat 40 Agree Strongly 40 Top 2 Box Total 80% *Average of 6 basic needs statements **Smaller sample of respondents weighted to represent total survey sample :: Individuals who reported having disabilities that had less of an effect on their abilities to be mobile, use language, and learn were much more positive about their current situation. overall IPSII & basic needs satisfaction Individuals with a Developmental Disability who Work or Volunteer Percent of respondents who… Job n = 189 Basic Needs (avg.*) Agree Somewhat 42 Agree Strongly 32 Top 2 Box Total 74% Independence Agree Somewhat 32 Agree Strongly 42 Top 2 Box Total 74% Productivity** Agree Somewhat 5 Agree Strongly 47 Top 2 Box Total 52% Self Determination Agree Somewhat 33 Agree Strongly 40 Top 2 Box Total 73% Integration Agree Somewhat 27 Agree Strongly 41 Top 2 Box Total 68% Inclusion Agree Somewhat 24 Agree Strongly 42 Top 2 Box Total 66% Volunteer n = 64 Basic Needs (avg.*) Agree Somewhat 41 Agree Strongly 32 Top 2 Box Total 73% Independence Agree Somewhat 41 Agree Strongly 34 Top 2 Box Total 75% Productivity** Agree Somewhat 25 Agree Strongly 44 Top 2 Box Total 69% Self Determination Agree Somewhat 33 Agree Strongly 42 Top 2 Box Total 75% Integration Agree Somewhat 35 Agree Strongly 32 Top 2 Box Total 77% Inclusion Agree Somewhat 32 Agree Strongly 33 Top 2 Box Total 65% Neither n = 55 Basic Needs (avg.*) Agree Somewhat 32 Agree Strongly 25 Top 2 Box Total 57% Independence Agree Somewhat 19 Agree Strongly 26 Top 2 Box Total 45% Productivity** Agree Somewhat 7 Agree Strongly 36 Top 2 Box Total 43% Self Determination Agree Somewhat 18 Agree Strongly 29 Top 2 Box Total 47% Integration Agree Somewhat 14 Agree Strongly 38 Top 2 Box Total 52% Inclusion Agree Somewhat 12 Agree Strongly 30 Top 2 Box Total 42% *Average of 6 basic needs statements **Smaller sample of respondents weighted to represent total survey sample :: Individuals who currently work or volunteer were much more positive about their current situation. It is important to note as well that respondents who work or volunteer were more likely to: :: be over 19 years of age :: report having disabilities of less impact :: live outside their parents’ home, and :: be of white/European descent, all of which were identified as leading to more positive responses. overall IPSII & basic needs satisfaction Primary Residence of the Individual with a Developmental Disability Percent of respondents who… Parents or Relatives n = 252 Basic Needs (avg.*) Agree Somewhat 32 Agree Strongly 25 Top 2 Box Total 57% Independence Agree Somewhat 15 Agree Strongly 32 Top 2 Box Total 47% Productivity** Agree Somewhat 3 Agree Strongly 34 Top 2 Box Total 36% Self Determination Agree Somewhat 17 Agree Strongly 34 Top 2 Box Total 51% Integration Agree Somewhat 15 Agree Strongly 35 Top 2 Box Total 50% Inclusion Agree Somewhat 12 Agree Strongly 29 Top 2 Box Total 41% Group Home n = 210 Basic Needs (avg.*) Agree Somewhat 43 Agree Strongly 31 Top 2 Box Total 74% Independence Agree Somewhat 30 Agree Strongly 39 Top 2 Box Total 69% Productivity** Agree Somewhat 9 Agree Strongly 57 Top 2 Box Total 66% Self Determination Agree Somewhat 28 Agree Strongly 42 Top 2 Box Total 70% Integration Agree Somewhat 25 Agree Strongly 47 Top 2 Box Total 72% Inclusion Agree Somewhat 23 Agree Strongly 43 Top 2 Box Total 66% Other n = 86 Basic Needs (avg.*) Agree Somewhat 34 Agree Strongly 35 Top 2 Box Total 69% Independence Agree Somewhat 38 Agree Strongly 41 Top 2 Box Total 79% Productivity** Agree Somewhat 39 Agree Strongly 29 Top 2 Box Total 68% Self Determination Agree Somewhat 36 Agree Strongly 34 Top 2 Box Total 70% Integration Agree Somewhat 38 Agree Strongly 22 Top 2 Box Total 60% Inclusion Agree Somewhat 32 Agree Strongly 35 Top 2 Box Total 67% *Average of 6 basic needs statements **Smaller sample of respondents weighted to represent total survey sample :: Respondents who lived outside their parents’ home were much more positive about their current situation. Factors which may be contributing to this are that people living outside their parents’ home are much more likely to: :: be over 19 years of age :: have a job or volunteer, and :: be of white/European descent, all of which were identified as leading to more positive responses. overall IPSII & basic needs satisfaction Ethnicity of the Individual with a Developmental Disability Percent of respondents who… White n = 453 Basic Needs (avg.*) Agree Somewhat 39 Agree Strongly 28 Top 2 Box Total 67% Independence Agree Somewhat 25 Agree Strongly 37 Top 2 Box Total 62% Productivity** Agree Somewhat 16 Agree Strongly 41 Top 2 Box Total 57% Self Determination Agree Somewhat 25 Agree Strongly 37 Top 2 Box Total 62% Integration Agree Somewhat 23 Agree Strongly 40 Top 2 Box Total 63% Inclusion Agree Somewhat 19 Agree Strongly 39 Top 2 Box Total 58% Of Color n = 90 Basic Needs (avg.*) Agree Somewhat 27 Agree Strongly 31 Top 2 Box Total 58% Independence Agree Somewhat 14 Agree Strongly 33 Top 2 Box Total 47% Productivity** Agree Somewhat 0 Agree Strongly 24 Top 2 Box Total 24% Self Determination Agree Somewhat 16 Agree Strongly 35 Top 2 Box Total 51% Integration Agree Somewhat 15 Agree Strongly 28 Top 2 Box Total 43% Inclusion Agree Somewhat 16 Agree Strongly 23 Top 2 Box Total 39% *Average of 6 basic needs statements **Smaller sample of respondents weighted to represent total survey sample :: Respondents of white/European descent were much more positive about their current situation than respondents of other ethnic backgrounds. Factors which may be contributing to this are that respondents of white/European descent were also more likely to: :: be over 19 years of age, and :: live outside of parents’ home,both of which were identified as leading to more positive responses. It is also important to consider that households of white/European descent have a higher median and average income, according to 2000 census data--providing them with more means to satisfying their needs. 5:: critical improvements most critical issues Open-ended question where respondents were asked to identify the most critical issues that Minnesotans with developmental disabilities will face in the next years. Financial Issues 30 :: Including: funding cuts, increased cost of healthcare, insurance, money issues. :: This was more important to family and friends, etc. (33%) than those with a disability (21%) Access to Services 27 :: Including: transportation, recreational opportunities, cuts in waiver services, access to waivers :: This was more important to individuals with severe disabilities (29%) than those with less severe disabilities. Access to Healthcare 25 :: Including: access to quality/appropriate health care, affordable healthcare, medications, and therapies :: This was more important to people in greater Minnesota (31%) than in the Twin Cities Metro Area (21%). Improved Employment Opportunities 21 :: Including: better jobs, more places to work, equal opportunities, funding for job supports and training, fair pay and living wages :: This was more important to people who volunteer (30%) than those that neither work nor volunteer (14%). :: Many of the stated concerns related to funding cuts, accessibility to resources—both financial and human—and better opportunities for employment and interaction. respondents Affordable Housing 18 :: Including: funding, affordable options, independent living arrangements, safe, assisted living housing options, group homes Service Personnel 16 :: Including: better pay, better quality personal aides, better retention, too few caregivers, better qualified staff, better trained Improved Education 13 :: Including: inclusion in the classroom, funding for education and training, post-secondary education, early childhood special education, summer school More Programs 11 :: Including: funding, day programs, transitioning from school/young adult, CDCS program cuts, social activities, access to programs, funding for SILS Inclusive Attitudes 7 :: Including: treat us as humans/equals/fairly, listen to us, ability to make friends and relationships, respect from others, abuse Achieving Personal Goals 6 :: Including: independent living, choosing where to live, economic selfsufficiency, live safely, autonomy, freedoms Other 16 :: Including: advocacy, community awareness, aging, access to public buildings, inclusion in the community No answer 10 6:: family support family support Are you currently receiving any family support services (defined as services that keep the family together)? n=206* No 48% Yes 52% *Question only asked of parent or other family member who completed the survey on behalf of an individual with a developmental disability. If yes n = 108 (those families that receive family support services) Percent of respondents who… The types of services our family needs are available to us. Agree Strongly 15 Agree Somewhat 52 Neither 1 Disagree Somewhat 17 Disagree Strongly 15 Services are provided by qualified and competent staff. Agree Strongly 27 Agree Somewhat 42 Neither 8 Disagree Somewhat 14 Disagree Strongly 9 Our family receives enough support to keep the family together. Agree Strongly 26 Agree Somewhat 42 Neither 4 Disagree Somewhat 21 Disagree Strongly 7 :: Less than half of respondents receive any family support services. :: Of those receiving family support services, most agree that the types of services they need are provided by competent staff, and that they receive enough services to keep theirfamilies together. 7:: education education program What type of education program are you currently enrolled in? n = 541 Out of School 51% Public School System (K-12) 32% Early intervention / preschool 6% Day treatment /activity program 4% Adult transition program / independentliving 3% All other types of education 9% Note: Multiple responses allowed. :: Over half of respondents reported being out of school. :: Of those enrolled in school most reported attending public school. education setting What type of education setting or service(s) do you currently receive in school? n = 269 Question only asked of people who did not say they were “out of school”. Mix of special education & regular classes 38% Aide in classroom 37% Mostly special education classes 27% Pull-out services and regular classes 23% Completely integrated in regular classes 10% Transition / independent living / job training 4% Day treatment / activity center 3% Other type of setting /service 11% How do you feel about the amount of time you spend in regular classes? n = 261 Don’t know 28% Too little 29% Just right 38% Too much 5% Note: Multiple responses allowed. :: Of those respondents currently in school, the most common education settings were a mix of special education and regular classes, having an aide in the classroom or mostly special education classes. :: Individuals reporting more severe disabilities were much more likely to be in mostly special education classes, and/or have pull-out services and regular classes. They were also more likely to say that they spend too little time in regular classes. satisfaction with education I am satisfied with the education I am receiving: Percent of respondents who… Total n = 243 Agree Strongly 16 Agree Somewhat 41 Neither Agree Nor Disagree 13 Disagree Somewhat 22 Disagree Strongly 9 Under 19 Years Old n = 195 Agree Strongly 17 Agree Somewhat 44 Neither Agree Nor Disagree 6 Disagree Somewhat 25 Disagree Strongly 8 19+ Years Old n = 82 Agree Strongly 11 Agree Somewhat 31 Neither Agree Nor Disagree 34 Disagree Somewhat 13 Disagree Strongly 11 :: Respondents under 19 were more satisfied (agree strongly/somewhat) with their education (61%) than respondents 19 and older (42%). :: Individuals with less severe disabilities (56%) agreed strongly or somewhat with “I am satisfied with the education I am receiving” than those individuals with moderate or severe disabilities (53%). education by degree of disability School system: % in public school system Severe n = 347 36% Moderate n = 150 26% Slight n = 55 32% Classroom setting: Mostly special education classes Severe n = 347 32% Moderate n = 150 19% Slight n = 55 13% Time: I spend too little time in regular classes Severe n = 347 31% Moderate n = 150 22% Slight n = 55 22% Satisfaction: I am satisfied with the education I am receiving (strongly/somewhat agree) Severe n = 347 53% Moderate n = 150 53% Slight n = 55 86% :: Individuals with more severe disabilities are more likely to attend public school, be in special education classes, and be less satisfied with the education they are receiving. Indicates statistically significant difference from other values in row at the 95% confidence level 8:: comparison with 2000 study comparison with 2000 – methodology The survey in 2000 was used as a benchmark for the 2005 study. However, in 2005 the recruiting and survey format were enhanced to increase the number of completes. The chart below describes the difference between the two studies: Methodology Recruiting 2005 Through the service provider network (via phone) who then emailed the invitation to the Internet survey to individuals with developmental disabilities that they work with 2000 Through the Partners in Policymaking graduates (via phone) who were then mailed multiple copies of surveys to distribute to individuals with developmental disabilities that they know Survey format 2005 E-mail invitation to Internet survey and mail option for those without Internet access 2000 Mail Survey language 2005 English and Spanish (mail version only) 2000 English Total number of completes 2005 n = 552 200 n = 300 comparison with 2000 study comparison with 2000 study – sample profile sample profile 2005 Respondent Type* Individual 19% Other 84% Age <19 36% 19+ 64% Ethnicity* White 88% Black 6% American Indian 4% Hispanic 4% Asian 2% Other 4% Employment Job 45%** Volunteer 36% Neither 44% Sample Profile 2000 Respondent Type* Individual 21% Other 90% Age <19 51% 19+ 47% Ethnicity* White 94% Black 2% American Indian 2% Hispanic *** Asian 1% Other 3% Employment Job 42% Volunteer 22% Neither 46% *Multiple responses allowed. **Base includes respondents age 15 or older. :: The 2005 study had more adults over age 19 participating in the study and higher ethnic minority representation. ***Not a specifically asked category in 2000. comparison with 2000 study – IPSII & basic needs satisfaction Percent of respondents who… 2005 Basic Needs (avg.*) Agree Somewhat 37 Agree Strongly 29 Top 2 Box Total 66% Independence Agree Somewhat 24 Agree Strongly 36 Top 2 Box Total 60% Productivity** Agree Somewhat 14 Agree Strongly 39 Top 2 Box Total 53% Self Determination Agree Somewhat 24 Agree Strongly 37 Top 2 Box Total 61% Integration Agree Somewhat 22 Agree Strongly 37 Top 2 Box Total 59% Inclusion Agree Somewhat 19 Agree Strongly 35 Top 2 Box Total 54% 2000 Basic Needs (avg.*) Agree Somewhat 49 Agree Strongly 28 Top 2 Box Total 77% Independence Agree Somewhat 28 Agree Strongly 36 Top 2 Box Total 64% Productivity** Agree Somewhat 25 Agree Strongly 37 Top 2 Box Total 62% Self Determination Agree Somewhat 0 Agree Strongly 0 Top 2 Box Total 0% Integration Agree Somewhat 29 Agree Strongly 35 Top 2 Box Total 64% Inclusion Agree Somewhat 20 Agree Strongly 35 Top 2 Box Total 55% **Smaller sample of respondents weighted to represent total survey sample :: Comparing the 2000 study to the 2005 study, it appears as though the ratings for the 2000 study were a bit higher. However, it is important to keep in mind the methodology and demographic differences between the two studies, which may be driving some of the differences. 9:: summary IPSII Evaluation The most obvious result of this study is that there are huge differences in satisfaction with independence, productivity, self determination, integration, and inclusion (IPSII) within the total population of individuals with developmental disabilities in the State of Minnesota. If you are over 19 years of age, have a job or volunteer, have a less severe disability and are white, you are much more likely to be satisfied with your current IPSII. These significant demographic differences suggest that the population of individuals with developmental disabilities should not be treated as a single entity. Big differences in satisfaction imply that policies and procedures designed to improve IPSII have had different effects on different segments of the population. Therefore, as an example, the State should consider different policies, procedures and possibly measurement criteria for individuals with developmental disabilities under age 19 when compared to adults. Because we do not know what the true statistics of this population are, it is difficult to interpret the results at a total level; however it is clear that people are more satisfied with their current levels of Independence, Self Determination & Integration, than with their current levels of Productivity & Inclusion. Productivity & Inclusion Whether an individual has a job or is volunteering appears to have a strong positive impact on his/her level of satisfaction with Productivity. There were significant differences in overall satisfaction with Productivity between the demographic sub groups; however when we only looked at individuals working or volunteering these differences diminished dramatically. Inclusion received low overall satisfaction ratings driven by lower ratings on statements such as being treated as equals, being treated with respect, and having opportunities to develop friendships with individuals who do not have a developmental disability. Independence, Self Determination & Integration Independence, Self Determination & Integration rated better than the other IPSII measures. Information access, privacy issues and mobility were rated relatively highly as aspects of Independence that are being met; while housing options and being able to choose one’s provider and staff received lower ratings. With regards to Self Determination aspects, self expression (decorating living space and personal presentation) received the highest ratings; while control over services spending and who individuals live with received the lowest ratings. Opportunities to make friends with people who do not have disabilities and to do things with people their own age received the highest levels of agreement for Integration. Availability of resources and personal support in their community as well as an acknowledgement of rights to equality received the lowest levels of agreement. Community and Basic Needs The majority of respondents agreed that their community is a good place for people with developmental disabilities to live and that it is getting better. That said, however, some individual basic needs require real improvement. While most people agreed that they feel comfortable and safe where they live and that they have access to the healthcare that they need; the majority of people with developmental disabilities in Minnesota do not feel that they have enough money to live on, are unsure about their security in the future, and don’t know what to do if their health or safety is in jeopardy. These and other similar basic needs should be addressed together before people can substantially improve their independence, productivity, self determination, integration, and inclusion (IPSII). Family Support This survey included a couple of questions related to family support. We found that less than half of the parents or other family members that participated in this survey receive any family support services. Of those receiving family support services, most agree that the types of services they need are provided by competent staff, and that they receive enough services to keep their families together. Education Of individuals still in school, those individuals with less severe disabilities were more satisfied with the education they were receiving than those with more severe disabilities. Individuals reporting more severe disabilities went to public schools more often, were likely to be in mostly special education classes, and/or have pull-out services and regular classes, and were also more likely to say that they spend too little time in regular classes. Critical Improvements We asked respondents to identify the most critical issues that Minnesotans with developmental disabilities will face in the next five years. Many of the stated concerns related to funding cuts, accessibility to resources—both financial and human—and better opportunities for employment and interaction. The top responses were related to: • financial issues (i.e. funding cuts, increased costs of healthcare and insurance, and money issues), • access to services (i.e. transportation, recreational opportunities, cuts in waiver services, access to waivers), • access to healthcare (i.e. access to appropriate, affordable, quality healthcare, medications and therapies), and • improved employment opportunities (i.e. better jobs, more places to work, more and equal opportunities, funding for job supports and training, fair pay and living wages). 10:: appendix online versus paper survey Online 79% Paper/Mail 21% Respondents were recruited via e-mail invitation from a service provider contacted by GCDD or MarketResponse. The majority of these respondents completed the survey online. A few individuals called the toll free number and requested a paper version. Some providers requested that we send multiple copies of the mail version, which they could distribute in person. Similarly, one provider in the Hispanic community requested the Spanish paper version. We did not receive any other calls for a Spanish version of the survey. We looked at the differences between the online responses versus the paper responses. There were some significant differences, however since the demographics between the groups were very different, we cannot say whether the response differences were due to the technological capability/availability or other reasons. Originally, we offered the paper version for people that do not have access to the Internet. In the end, the majority of the requests for the paper version came from providers who didn't have e-mail addresses for their clients – so we don’t know whether the respondents had internet access or not. Also, nearly all the Hispanic respondents (68%) were by mail because we only offered the Spanish survey on paper. We do not know how many of those respondents might have completed a Spanish version online. Therefore, we do not recommend that specific conclusions be drawn based on the format of the survey. Recommendations for future surveys Our recommendation for future surveys is to offer all quantitative studies on the Internet. It is a very efficient and effective way of collecting data. Respondents tend to be more responsive because it requires less effort than completing and returning a mail survey. Additionally, we have over 200 new e-mail addresses of people that have agreed to participate in future studies. With the help of GovDelivery, GCDD is building a sample list of e-mail addresses, which will be a useful base for future Internet research studies. However, GCDD and MarketResponse are dedicated to ensuring that the survey is accessible to everyone possible. Therefore, a mail survey option is very important. Other recommendations include: :: Consider offering the Spanish survey online or at least let people taking it online know that there is a Spanish paper version available :: Consider offering the survey in other languages to accommodate other communities such as Hmong or Somali :: Attempt to validate the e-mail addresses (i.e. ask respondents to enter their e-mail address twice) :: Offer mail respondents the opportunity to share their e-mail address for future research :: Attempt to obtain statistics that represent the true population of individuals with developmental disabilities within the state of Minnesota across important demographic subgroups (i.e. age, level of disability, and ethnicity) in order to weight the results to be projectable to the total sample. :: ‘Family Supports’ as defined did not appear to be understood by respondents and should be explained in more detail in future studies.