5-Year Plan Tracking Studies Meta Analysis Measures of IPSII and Other Timely Issues: Years 2000 through 2020 prepared for: Minnesota Governor’s Council on Developmental Disabilities December 2024 prepared by: MarketResponse International Project #2541 5 Year Plan Individuals Survey EVERY 5 YEAR IPSII TRACKING SINCE 2000 2000 Quality of Life Assessment Survey Mail survey among people with developmental disabilities; perceptions of IPII (n = 300)(Project #1159) 2005 Online and mail survey among people with developmental disabilities; perceptions of IPSII (n = 552) (Project #1713) 2010 GCDD 5-year Plan Phone-Recruit-To-Internet and mail survey among people with developmental disabilities re: perceptions of IPSII, impact of the PCA budget cuts, and adoption of tech. for individuals with disabilities. (n=222) Plus, Service Providers survey (n=66) (Project #2082) 2015 The Quality-of-Life Assessment Survey (QOLAS), 1st conducted in 2000, repeated in 2005 and 2010. input for the next 5-Year State Plans. (n =506) (Project #2327) 2020 GCDD 5-Year State Plan for FFYs 2022-2026 Qualitative & quantitative surveys of advocates and self-advocates (n=191), Service Providers (n=206), and the MN general population (n=920) (Project #2465) (Conducted prior to COVID-19 pandemic) 2025 Proposed: GCDD 5-Year Plan Intersectionality IV Efficient, respondent friendly, and accessible survey, for measures of IPSII and Intersectionality impacts (Project #2541) Please note, each sample was drawn independently; no same group of people were surveyed across the five waves of the tracking study. QUALITY OF LIFE STUDY: Overall Satisfaction with IPSII There is evidence of improvement in Independence, Self-Determination and (possibly) Integration in 2020, compared to past years. Satisfaction with current levels of: 2000 2005 2010 2015 2020 Independence 64% 60% 55% 53% 73% Productivity 67% 72% 71% 73% 66% Self Determination NA 61% 59% 56% 68% Integration 64% 59% 54% 56% 62% Inclusion 55% 54% 50% 52% 56% * Incremental improvements are shown in several aspects of independence, especially related to privacy and access to personal information. * Improvements in control over personal finances and public funds for services could be driving improvement in overall satisfaction with Self Determination * However, there appears to be room for improvement regarding ability to solve one’s own problems, along with control over how public funds are spent, and choice of roommates * One aspect of integration showing the most improvement over past years is the perception of being treated with respect by people without disabilities. QUALITY OF LIFE STUDY: Overall Satisfaction with IPSII 2000 2005 2010 2015 2020 Independence 64% 60% 55% 53% 73% - based on those who work or volunteer Productivity 67% 72% 71% 73% 66% Self Determination NA 61% 59% 56% 68% Integration 64% 59% 54% 56% 62% Inclusion 55% 54% 50% 52% 56% Evidence of improvement in some basic needs: - Feeling more comfortable where they live - Having access to needed healthcare - Having enough money to live on - Feeling secure about their future No evidence of improvements in Inclusion and Productivity: - The most significant impediments to inclusion appear to be feelings of not being treated as an equal, and lack of opportunities to develop meaningful relationships with people without disabilities. - Feelings of being productive at home remain relatively steady, and positive, over the years. - However, there was no change in employment levels in 2020 compared to previous years. (Survey was conducted prior to the effects of the COVID-19 pandemic.) QUALITY OF LIFE ASSESSMENT SURVEY - Year 2000: Project- 1159 Date Completed January 2001 - Project Name Quality of Life Assessment Survey - Methodology - Mail survey among people with developmental disabilities (n = 300) Study Brief - The Minnesota GCDD commissioned this survey in 2000 to determine how people with developmental disabilities perceive their own levels of IPII, how they evaluate the quality of services they receive, and obstacles they face in their day-to-day living. Perceptions of Independence, Productivity, Integration, Inclusion (IPII), Education and Government were asked of all respondents. Graduates of Partners in Policymaking we significantly less satisfied with their current levels of Independence, Integration and Inclusion, compared to non-graduates of the program. * Independence - Satisfaction with independence was related to degree of disabilities. People with mild developmental disabilities felt they had more control of major decisions, compared to those with moderate or severe disabilities. Consequently, they had more positive ratings on Independence. * Productivity - Higher productivity ratings came from people with developmental disabilities who develop skills, are given responsibilities at home or work or while volunteering, and those who were recognized for their achievements, especially at home and at school. * Integration - When people with developmental disabilities have adequate resources, and feel they are treated as equals, their ratings on Integration improve. * Inclusion - Satisfaction with Inclusion was rated the lowest and appears to have potential for the most improvement. Developing meaningful relationships and being treated as an equal and with respect, are drivers of a person’s sense of belonging and inclusion. * Education - One of four parents and or advocates felt their child spends too little time in regular classes. Almost one-third of parents and advocates feel their concerns are neither addressed promptly nor professionally by their school. * Government - All levels of Government - County, State and Federal - received low ratings on their performance as it relates to people with developmental disabilities. Many people find the process of learning the government system - in order to get assistance - confusing and time consuming. QUALITY OF LIFE ASSESSMENT SURVEY - Year 2005: Project- 1713 Date Completed January 2006 - Project Name 5 Year Plan, Individual Survey - Methodology - Online mail survey among people with developmental disabilities (n = 552) Study Brief - This was the second wave of customer-focused studies among people with developmental disabilities in Minnesota, measuring the degree to which they believe they are independent, productive, self determined, integrated and included in the community. The most obvious result of this study was that there were substantial differences in satisfaction with IPSII within the total population of individuals with developmental disabilities in Minnesota; and there were no measurable improvements from the 2000 survey. * Productivity - Whether an individual has a job or is volunteering appears to have a strong positive impact on their level of satisfaction with Productivity. * Inclusion - 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. * Self Determination, Independence, Integration - Independence, Self Determination and Integration rated better than the other IPSII measures. Information access, privacy issues and mobility were rated relatively high as aspects of Independence that were being met; while housing options and being able to choose one’s provider and staff received lower ratings. * 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. * Family Support - Less than half of the family members that participated in this survey received 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 with less significant disabilities were more satisfied with the education they were receiving, compared to those with more significant disabilities. * Critical Improvements - Critical issues that Minnesotans with developmental disabilities will face in the next five years were related to: financial issues, access to services, access to healthcare and improved employment opportunities. QUALITY OF LIFE ASSESSMENT SURVEY - Year 2010: Project- 2082 Date Completed December 2010 - Project Name 5 Year Plan, Individuals with Developmental Disabilities and Family Members - Methodology - Phone recruit to internet survey, as well as mailed hard copy surveys (n=222) developmental disabilities (n = 552) Study Brief - This was the third wave of studies among people with developmental disabilities in Minnesota, measuring the degree to which they believe they are independent, productive, self determined, integrated and included in the community. The impacts of PCA budget cuts and technology use among individuals with developmental disabilities were added. Diverse needs and motivations among people with developmental disabilities revealed differing priorities regarding Independence, Integration, and Inclusion. * Various IPSII Motivations - The segmentation analysis, based on attitudes and use of information technology, revealed that people with developmental disabilities are motivated differently by various aspects of IPSII. For example, some are motivated most by the need for independence or self determination; others may seek integration and inclusion. * Heterogeneous Population - People with developmental disabilities are a heterogeneous group, and various segments of the population may express different needs with respect to products and services from government and or other organizations. * Challenging Teenage Years - Results from this research study also implied that the teenage years are particularly challenging for people with developmental disabilities, which adds another layer of complexity to this already heterogeneous group of people. * Top Issues - The top five most important issues facing people with developmental disabilities over the next few years were: housing, employment, healthcare, personal care services and education. * Information Technology Segments - Four segments were identified based on attitudes and use of information technology: Tech Savvy Life Enhancers (26%), Adaptive Technology Enabled (33%), Independent Technology Users (14%), and Technology Yearners (27%). QUALITY OF LIFE ASSESSMENT SURVEY - Year 2015: Project- 2327 Date Completed December 2015 - Project Name 5 Year Plan Research Report - Methodology - The GCDD and MarketResponse reached out to hundreds of groups and individuals to administer survey online or by hard-copy mail. (n=506) Study Brief - This 4th Quality-of-Life Assessment Survey (QOLAS) was initially conducted in 2000, repeated in 2005 and 2010. The findings were used as input for the next 5-Year State Plan. There was no evidence of any improvement overall, over the previous 15 years, in satisfaction with IPSII * Young Adult Challenges - For the youngest adult age group (ages 19-34), overall satisfaction with Integration and Inclusion were lowest compared to the other ISII ratings. This age group had the highest unemployment rate, with 51% without a paying job, versus 37% and 43% for the two older age groups respectively. * Overall Benefits of Employment - For adults with developmental disabilities (ages 19 and older), having a job outside of the home appears to be highly correlated with satisfaction with all elements of IPSII. - Those with a paying job work an average of approximately 20 hours per week. - Just over half (53%) of those who volunteer spend 5 or fewer hours per week in their volunteer position. - Seven out of 10 of all workers believe they work the right number of hours, while 1 in 4 think their working hours are too few. * Decline in Community Impressions - Impressions of living in a community that is a good place for people with developmental disabilities appear to have eroded somewhat over the past 10 years. QUALITY OF LIFE ASSESSMENT SURVEY - Year 2020: Project- 2465 Date Completed August 2020 - Project Name EXECUTIVE SUMMARY of 2020 Surveys coducted for 5 Year State Plan - Methodology - Qualitative and quantitative surveys of advocates, self-advocates, service providers and the MN general population Study Brief - From January to March 2020, three surveys were conducted to fulfill the requirements of the Five-Year State Plan for FFYs 2022-2026. All attitudes and opinions were surveyed prior to the effects of the COVID-19 pandemic. PERCEPTIONS AMONG PEOPLE WITH DEVELOPMENTAL DISABILITIES * Some areas of improvement - There was evidence of improvements in 2020 in Independence, Self-Determination, and Integration; no measurable improvements were found over the twenty-year period in Inclusion or levels of employment among adults. * Most Critical Issues - The top four critical issues that people with developmental disabilities will face over the next 5 years were related to employment, funding for services and training, housing, and staffing. * HCBS Waiver Dissatisfaction - Almost one-third (31%) of people with developmental disabilities who applied for an HCBS Waiver were dissatisfied with the assessment and application process. MINNESOTANS' ATTITUDES TOWARDS PEOPLE WITH DEVELOPMENTAL DISABILITIES Minnesotans had very positive attitudes regarding the importance and value to society of inclusion and supports for people with developmental disabilities. However, there was less certainty regarding costs and responsibility for supports, voting rights, level of inclusion in education, and rights to independent living. Minnesotans with a family member with a developmental disability were more likely to be concerned about abuse and financial exploitation, compared to those who do not know a person with a developmental disability. Thank you! from your MarketResponse team TOM PEARSON, Managing Director t.pearson@marketresponse.com SUSAN McCULLOUGH, Sr. Research Director s.mccullough@marketresponse.com DEREK PEARSON, Sr. Director of Operations derek.pearson@marketresponse.com LYNN SCHREIFELS, Sr. Research Manager l.schreifels@marketresponse.com