The Voice of Service Providers for People with Developmental Disabilities Prepared for the Governor’s Council on Developmental Disabilities Prepared by MarketResponse International The Assignment: According to the GCDD’s current Five-Year Plan for FFYs 2017-2021, the following Goal Statement applies to Customer Research: Conduct or commission research studies to measure and assess quality outcomes of the federal DD Act through annual qualitative and quantitative surveys on new topics and issues or further research on topics and issues previously studied. In quarter one of 2020, three surveys were conducted to fulfill the requirements of the Five Year State Plan for FFYs 2022-2026: * Professionals’ Perspectives regarding IPSII, Voice of Service Providers for People with Developmental Disabilities * Quality of Life for People with Developmental Disabilities, Attitudes regarding IPSII among Advocates and Self-Advocates * Impact of the Americans with Disabilities Act, Attitudes among the General Population of Minnesota The following is the analysis from the Professionals’ Perspectives regarding IPSII, Voice of Service Providers for People with Developmental Disabilities study. Research Methods: 4 qualitative pilot interviews with professional service providers were conducted to uncover any current, relevant issues impacting service providers that should be included in the quantitative survey instrument. The online quantitative study among n=206 service providers measured attitudes regarding: * Familiarity with the Developmental Disabilities Assistance and Bill of Rights Act * The extent to which Minnesota is achieving independence, productivity, self-determination, integration and inclusion (IPSII) for people with developmental disabilities Quantitative Online Survey The majority (59%) of the survey participants provide services for people with developmental disabilities in a day program setting. Almost a quarter (24%) provide services in a work or school setting. The following shows the total sample of survey participants by workplace setting. QC. In which of the following settings do you, and/or the company you work with, provide services to people with developmental disabilities? Total sample: (n=206) At a day program: 59% At my clients' place of work: 13% At a school or other education facility: 11% In a group home: 6% Other setting: 5% In a private home: 3% At an advocacy agency: 3% Half or more of the providers who participated in this study are involved in employment, life skills development and recreation related activities for people with developmental disabilities. The following shows the total sample of survey participants by types of services they provide. Which of the following best describe the types of services you provide to people with developmental disabilities? (Check all that apply) (QE) Total sample: (n=206) Employment/supported employment services such as a job coach, job developer, or employment specialist (job skills training, to enhance job retention and advancement opportunities in inclusive work environments): 70% Life skills development, such as community and social interactions, artistic expression and other functional skills development: 57% Recreation related activities (providing access to and use of recreational, leisure and social activities): 50% Transportation services for people with developmental disabilities (driver or bus aid): 39% Self-advocacy training and education for people with developmental disabilities, and/or their advocates, on how to exercise their rights and speak up for oneself: 38% Personal care attendant or personal care assistant, to assist people with developmental disabilities, to enable them to live more independently, or as they choose: 21% Physical therapy, speech/language therapy, occupational therapy, or cognitive behavioral therapy: 10% Health related activities (providing access to and use of health, dental, mental health and preventative health services): 9% Para-professional, teacher, administrator in school/classroom settings: 8% Independent housing/housing support services, including assistance in renting, owning or home modifications: 7% Training and counseling services for parents of people with developmental disabilities: 6% Provision of home medical, adaptive equipment, or assistive technology: 4% Early intervention - childcare related activities (birth to age 9): 3% Other services not listed: 8% Years Worked as a Service Provider 35% of the survey participants had more than 20 years of experience, 33% had between 7 and 20 years of experience and 32% had less than 7 years of experience as a service provider for people with developmental disabilities. The following shows the total sample of survey participants by years worked as a service provider. More than 20 years: 35% 16 to 20 years: 9% 11 to 15 years: 12% 7 to 10 years: 12% 4 to 6 years: 12% 1 to 3 years: 14% Less than 1 year: 6% Awareness of Developmental Disabilities Assistance and Bill of Rights Act A total of 125 providers (61%) have heard of the DD Act, 76% say they are very familiar or somewhat familiar with its overall purpose and specific aspects. Therefore, 46% of all providers are at least somewhat familiar with the purpose and specific aspects of the DD Act. The following shows the total sample of survey participants by awareness of the Developmental Disabilities Assistance and Bill of Rights Act: Have you ever heard of the Developmental Disabilities Assistance and Bill of Rights Act? (Q1) Total sample: (n=206) Yes: 61% No: 19% Not sure: 20% Survey participants who said Yes were then asked: How familiar are you with the DD Act, including its overall purpose and its specific aspects? (Q2) Sample size: (n=125) Very familiar: 12% Somewhat familiar: 64% Aware but not at all familiar: 23% Not at all familiar: 1% Survey participants who had heard of the Developmental Disabilities Assistance and Bill of Rights Act were asked: Approximately how many years ago do you believe the DD Act was passed? (Q3) There were a variety of opinions regarding when the DD Act was passed. 14% of providers were correct that it was passed 50 years ago. Twenty-eight percent of providers’ estimates were within +/- 10 years of the actual date of passage. Sample size: (n=125) Within the past 10 years: 6% About 20 years ago: 34% About 30 years ago: 13% About 40 years ago: 6% About 50 years ago: 14% More than 50 years ago: 8% Don't know, no idea: 19% Providers’ Perspectives Regarding Independence, Productivity, Self-Determination, Integration and Inclusion (IPSII) Survey participants were asked to rate how well The State of Minnesota is doing in achieving IPSII for people with developmental disabilities on a 9-point scale where 1=Very poor, 3=Sub-par, 5=Fair, 7=Good and 9=Excellent A total of 51% of providers rated Minnesota as doing good or better than good in helping people with developmental disabilities achieve IPSII. A total of 49% of providers gave Minnesota a less than good rating. From your experiences, and from everything you may have seen or heard, how well would you say the state of Minnesota is doing, overall, in achieving independence, productivity, self-determination, integration and inclusion (IPSII) for people with developmental disabilities? (Q5) Total sample: (n=206) Very poor 1: 0% 2: 2% Sub-par 3: 12% 4: 3% Fair 5: 19% 6: 13% Good 7: 38% 8: 10% Excellent 9: 3% Survey Participants were asked to explain their rating. Of all comments received, 44% had positive elements. The most frequent positive comments were about person-centered practices, and the State of Minnesota is doing well compared to other states. Two-thirds of all comments (67%) had negative elements about funding and staffing. Please explain why you give Minnesota your rating in achieving IPSII for people with developmental disabilities. (Open-end) (Q6) Coded responses Total sample: (n=206) Moving in the right direction of person-centered: 29% Staff crisis/low wages: 16% Doing well compared to other states: 15% Lack of funding: 14% Outdated/complex government systems: 12% Limited choices/resources: 9% Limited access: 8% Lack of awareness: 8% Open-Ended Comments Regarding IPSII Ratings Lack of Awareness Some of the low ratings were about lack of awareness from the general public regarding the services that are provided to people with developmental disabilities, which can lead to negative attitudes. “Members of the general public may be unaware of their local community rehabilitation providers, state and county offices and the work that they do providing services to people with disabilities. Lack of information and education for the general public undoubtedly leads to the development of negative attitudes, stigma, and even discrimination which can end up stripping people living with disabilities of their dignity, their rights, equality, potential, and ultimately their social integration.” Transportation Issues Lack of adequate transportation options, in both the metro and rural areas, was also mentioned as a reason for low IPSII ratings. “Lack of public transportation options beyond the immediate metro area and extending into rural areas limits employment, recreation, leisure, educational, and social choices.” “People lack access to transportation options which could promote greater independence and inclusion.” Low Wages Some low IPSII ratings were based on low wages for service providers that can result in high turnover rates of direct support professionals and disrupt the continuity of services for people with developmental disabilities. “Federal, State and County service rates for providers make attracting, recruiting, and retaining direct support employees extremely difficult. The significant impacts that has on the people they serve include, but are not limited to the very basic needs of dignity, stability, human or social connections, rapport, accurate and appropriate representation to others in a position to hire, support, engage, mentor, provide care, train or coach, etc.” “If wages for people who work with folks with developmental disabilities were improved that would reduce turnover and bring workers into this field that want to stay and make a difference in the lives of this population. I have been doing this work for over 20 years and have not had a wage increase in the last 5 years, which makes it hard to put money away for retirement as needed. I continue to do this type of work and continue to struggle to make ends meet, because if I am not working with this population someone else who doesn't care and could treat them disrespectfully might end up working with them, and I couldn't live with that.” “Low wages for service providers have a significantly negative impact on the quality and continuity of services being provided. Volatility, instability, and turnover in the regulatory organizations have been a large challenge as well (DHS, DEED, VRS).” Accessing Information Some survey participants noted that obtaining information about benefits and programs can be difficult to access, thereby limiting IPSII opportunities. “There are too many inaccessible communication systems, websites, policies and processes related to gaining information about benefits, programs, and other opportunities to learn, live, and grow within their communities. Paul Wellstone got it right when saying, we all do better when we all do better, and, in my opinion, Minnesota can do much better.” Billing Complexities Some providers talked about needless complexities regarding the billing process, which can divert resources from providing services and supports for people with developmental disabilities. “The Department of Human Services continues to make the Direct Service Provider field increasingly and needlessly complex. MN-ITS billing and the breakup of DT&H Services into three separate billable services are examples. This diverts resources from the direct support that people need for daily living and to be engaged in the community.” Staffing and Housing Some providers feel that staffing issues, if left unchecked, can lead to taking steps backwards towards settings that are reminiscent of institutions. “Minnesota was at one time very progressive in terms of providing new choices and options for people with disabilities. Due to the staffing crisis we are now experiencing, we now are finding ourselves in an environment that looks very similar to the institutions we moved away from many years ago. The only difference now is the settings have fewer people in them. The level of care, especially in group home settings, has become very scary within the last couple years. There has been little to no noticeable response at the state level to this crisis.” Services for Adults There is a perception that Minnesota does a great job providing services for individuals with developmental disabilities until age 21. After that, receiving needed services becomes more difficult. “I think the State of Minnesota has phenomenal programming for individuals until the age of 21. For students who aren't able to be independent after age 21, it is much more difficult to receive services for increasing adaptive functional skills and possible career skills.” Access to Services Providers suggest that overly complex systems and inconsistencies between counties and state agencies are barriers to individual’s being able to access the services they need, as well as choices of where they want to live and with whom, and how they want services provided. “I think we have agencies that are working to provide creative solutions for individuals with disabilities, but our systems are still working to play catch up.  I think that the waiver system at times can be discriminatory and can provide barriers to accessing an individual’s true needs. I believe as a state we have made progress, but we have more progress to make. I also feel that Counties & State Agencies  need to be willing to work together so that individuals can truly have a choice of where they want to live and how they want services provided.” Employment Opportunities Some businesses are doing well at hiring people with developmental disabilities in positions along side workers without disabilities, including them in the workforce at large, that can lead to increased IPSII among employees with developmental disabilities. “From my experience, Minnesota is doing well with making individuals feel independent, productive, and included. I supervise 8 individuals with disabilities in a factory. Minnesota has done a good job of supporting programs that allow individuals with disabilities to be included in this type of work. In my opinion, employers are also doing a good job of including individuals with disabilities on the work floor and surrounding them with other people, so they won't feel secluded.” Person Centered Approach Minnesota has been adopting a person-centered approach for providing services to people with developmental disabilities. However, low wages and staffing shortages are inhibiting service quality. “Minnesota's system has been evolving over the past 10 years to promote more choice and independence through using a person-centered approach. This has helped the industry grow to offering services that required more personnel during a time of low wages and low unemployment making it difficult to provide quality service. With this said, I think given more time for the system to evolve, quality of life for people with developmental disabilities will improve.” Recommended Actions to Improve IPSII Survey participants were asked, What specific actions do you believe the state government of Minnesota would need to take in order to do better in achieving IPSII for the people in our state with developmental disabilities (Open-end) The top two most frequently mentioned actions by 44% of service providers that the state government needs to take in order to improve the lives of people with developmental disabilities in Minnesota are related to funding: Direct service provider wages and overall funding for services. Greater support and engagement with Direct Service Providers were often mentioned actions needed to improve IPSII for people with developmental disabilities. The following shows the total sample of survey participants recommended actions to improve IPSII. Increase Direct Support Professional wages: 27% Increase overall funding for services: 17% Match Needs: 13% Improve employment: 10% Direct Service Provider engagement and value: 8% Improve Special Ed: 8% Increase access: 8% Increase choices: 6% Direct Service Provider education and training: 5% Increase housing: 5% Improve transportation: 3% Create a seat at the table: 3% Improve Day Programs: 1% Improve Group Homes: 1% Create a Seat at the Table A common theme: There is great potential value to be gained from engagement with front line service providers, people with developmental disabilities, parents and guardians, giving them a seat at the table. “Communicate with, listen to, go to; individuals with disabilities, parents or guardians, day and residential providers, and the rest of the stakeholders.” “Ask a transportation route driver to the table…folks would be amazed as to how much they know about those they're transporting and what could help IPSII practices! Engage the (front-line service providers), especially those in out-state MN, and state government will experience broader perspectives, new ideas, stronger support networks and more likely outcome attainment of IPSII.” “Those involved at the point of service--family members, friends, Direct Support Professionals, case managers, transportation service drivers, community members, etc. --have truly been left out of the decision-making processes in MN, despite some structured efforts and a lot of conversation proclaiming engagement of these individuals. Especially in rural areas (where I work), there is so much to be learned that could inform IPSII progress.” Employment Two ways to enhance employment opportunities were suggested: 1) Resolve issues restricting and limiting employment 2) Offer tax incentives for employers that include people with developmental disabilities in their workforce “Change how funding is distributed and move away from group home and day program services while focusing on community-based living and employment support. Provide tax incentives for businesses that hire people with developmental disabilities.” Conclusion In order to achieve the goal of improving the overall quality of life of people with developmental disabilities, increases in funding for services is imperative. The top areas that Providers believe need more funding in order to achieve higher levels of independence, productivity, self-determination, integration and inclusion (IPSII) for people with developmental disabilities are: Staff support, Employment, Transportation, K-12 education, and Housing Providers also strongly believe there is a need to invest in higher wages for Direct Support Professionals. Fair compensation and training for Direct Support Professionals will: Decrease the current high turnover rates which disrupts the continuity of services for people with developmental disabilities, and improve the quality of service provided to people with developmental disabilities. Thank you for your time reading this report. If you have any questions or comments to share, your MarketResponse International contact is Derek Pearson, Senior Research Manager. d.pearson@marketresponse.com 612 379 1645