Text Version The Minnesota Governor's Council on Developmental Disabilities Becoming ONE MINNESOTA Qualitative Research Study #2456; 1 April 2019 Overview Executive Summary Detailed Findings What does One Minnesota mean for people with developmental disabilities? Icon shows the shape of the state of Minnesota. Personal experiences and perspectives were provided by people with developmental disabilities, advocates and family members from throughout the state. 28 respondents participated in 3-day online bulletin board focus groups 9 respondents participated in hour-long in-person interviews 6 respondents were interviewed by telephone in hour-long in-depth interviews The 43 individuals who participated matched the state demographic profile in terms of race/ethnicity, geographic location, males, females, internet access and no internet access, etc. They were specifically selected to be a cross section of One Minnesota. The ultimate objective was to obtain rich insights that illustrate what must happen for One Minnesota to be operationalized across state agencies while remaining inclusive of people with developmental disabilities. NOTE: Verbatim quotes from respondents throughout this report are shown in italics. BECOMING ONE MINNESOTA: QUALITATIVE RESEARCH STUDY Overview Executive Summary Detailed Findings Achieving One Minnesota It's all about Inclusion Include me icon EXECUTIVE SUMMARY: ACHIEVING ONE MINNESOTA. THE GOAL. One Minnesota means people with developmental disabilities are seen and treated as active equal participants in the community. One Minnesota is achieved when: Services/Supports shows icon with heart in hand. All services and supports promised to people with disabilities are known and easily accessed Employment shows icon with briefcase. Fulfilling employment opportunities, appropriate to each individual's abilities, are available and accessible to all Housing shows icon with a house. Plentiful housing options, with sufficient services for people with disabilities, are available in communities throughout the state Transportation shows icon with a bus. Efficient transportation services for people with disabilities enable access and full participation in their communities Education shows icon with a school building. All public schools in the state provide students of all ability levels with free appropriate public education in the most integrated settings Technology shows icon with beams in widening circles. High-speed internet and easy to use government online services are available and accessible, regardless of location or income EXECUTIVE SUMMARY: ACHIEVING ONE MINNESOTA. THE OPPORTUNITY. Importance of Inclusion in One Minnesota: Including people with developmental disabilities in the One Minnesota promise would benefit all Minnesotans; If people with developmental disabilities were provided with the services and accommodations they need, the state would save money instead of wasting it; People with disabilities want to work, and with the right accommodations would become more independent and productive members of the community. HOWEVER, it is a constant struggle for people with developmental disabilities and their advocates to get the services they need and to which they are eligible. EXECUTIVE SUMMARY: ACHIEVING ONE MINNESOTA. BARRIERS TO INCLUSION. You Might be Surprised to Learn … Services are available but often difficult to access. Employment opportunities are limited. Housing options are few and far between. Transportation services are insufficient and unreliable. Special education services are inconsistent throughout the state. High-speed internet provides opportunities for access and inclusion, but is not available to all. EXECUTIVE SUMMARY To achieve ONE MINNESOTA for people with disabilities there needs to be a fundamental shift in the way the state perceives individuals with developmental disabilities – from a cost to society, to an opportunity for inclusion that will enhance the quality of life for all Minnesotans. Create awareness among all Minnesotans of the importance of including people with developmental disabilities in the One Minnesota promise. Focus resources and efforts on identifying fulfilling opportunities for employment and earning a livable income, which will drive inclusion and enable more independence for people with developmental disabilities. Educate service providers on the importance of having a customer service mentality, and proactively informing people with developmental disabilities of the services and supports to which they are eligible. Assure that all services and supports for people with developmental disabilities are equally available and easily accessible everywhere in the state. Include people with developmental disabilities and/or their families and advocates in policymaking processes and decisions. ONE MINNESOTA INCLUSION: WHAT IT MEANS AND WHY IT'S IMPORTANT Everything we have been fighting for has been to ensure our son has the same "rights" as everyone else: rights to education, full accessibility, community integration, job availability, etc. Inclusion means being a part of everything. It is important for there to be no distinction between people with and without disabilities. The idea behind inclusion is not to DO things for those of us with disabilities, but to empower us to help ourselves. We all need to feel accepted and valued, and be given the opportunity to contribute to society in meaningful ways. Icon shows the word “inclusion” in a middle circle, with four words surrounding the circle in different segments, reading, “connected,” “respected,” “progressing,” and “contributing.” ONE MINNESOTA People with Disabilities Need to be Included. Include people with disabilities in the conversations, because we know our realities. Push the Federal Government to pay its fair share of Special Education funding because right now they only contribute 16% instead of the promised 40%. Photo shows former U.S. Senator David Durenberger bumping fists with a self advocate in a wheelchair. ONE MINNESOTA HOW DO WE GET THERE? Empowering people to contribute, in the ways that they can, fosters much more motivation and happiness. The important thing is having people integrated into their communities in a way that is respectful and empowering for them, not a bullet list of requirements they have to make themselves fit into. This is hard, it requires understanding each person and what he or she needs to be successful. Photograph shows a young man with autism playing a grand piano at a public store. ONE MINNESOTA INCLUSION See me, not my disability! Photo shows an older man and a young man with a beard sitting at a table with their arms around each other. We are human beings with actual feelings and problems, not statistics. BECOMING ONE MINNESOTA: QUALITATIVE RESEARCH STUDY Overview Executive Summary Detailed Findings Services/Supports: Employment Housing Transportation Education Technology Services/Supports Why Services for People with Disabilities are Important Available but Often Difficult to Access Unnecessary Complexity Limits Access Gaining Access can be a Difficult, Discouraging, Demoralizing Process Strategies for Improving Access Something to Prove Services and Supports icon shows heart in hand. The One Minnesota Goal: All services and supports promised to people with disabilities are known and easily accessed. Strategies for Achieving One Minnesota: Statewide availability: Assure that all services and supports for people with disabilities are equally available and easily accessible everywhere in the state. Easy access to information: Make it easy for people with disabilities and their advocates to find out what services and supports are available. Inform service providers at all levels of government regarding the importance of helping people with disabilities access the services and supports to which they are eligible. Train and encourage service providers on the importance of having a customer service mentality when interacting with people with disabilities. SERVICES AND SUPPORTS ARE IMPORTANT FOR PEOPLE WITH DISABILITIES Greater Independence is Supported Programs that enable greater levels of independent living are desirable … and they work. Instead of having to move to a group home or adult foster care, I was able to move into my own apartment and live mostly independently, thanks to a government funded program that helps people with epilepsy live in housing with available support. SERVICES AND SUPPORTS WHY ARE SERVICES FOR PEOPLE WITH DISABILITIES IMPORTANT? A Win-Win for People with Developmental Disabilities and the State With the right services, supports and accommodations, people with developmental disabilities can be contributing, working members of the community. In many cases, providing the services people need saves the State money. The impact of providing accessible services to those with developmental disabilities would prove that they are worthy of being in the community. It would give them a moral boost, making people more independent and a benefit to society. I have benefited from State funded programs: job search and placement, homecare, and independent living services. They have enabled me to work, participate in my community, and live independently for 16 years. The Legislature sees individuals with disabilities as a burden to the budget and want to cut services to this population. If they understood what my son would have cost the state if placed in foster care versus us adopting him, the cost of a waiver to support his needs is nothing. County to County Differences in Availability of Services Counties are not equal regarding the services they provide to people with developmental disabilities. I think it has to do with all the counties not being treated equally as far as getting services throughout the whole state. People in the Metro have really great services. I live in Mankato, I would say we have decent services. If you go to the outlying counties, they have no access to anything without driving hours or fighting their county to get it. Inconsistencies within Counties: Access To Services Depends on Who You Talk To Within counties, you can talk to multiple social workers and get multiple answers regarding the availability of needed services. It takes perseverance, knowing exactly what services you need, exactly how to ask for it, talking to the right person, and luck. We find ourselves helping each other a lot around these walls and obstacles. Even county workers in the same county aren't on the same page, I can be qualified for a waiver, and my friend down the street is told, "No, we don't pay for that." I feel there's so many hoops for people to jump through to get services. People are told different things depending on who it is that's calling in and who it is that you talk to. I don't think the services are all accessed evenly. Why should you keep having to call hoping you get a different person? And once you do get into the system and assigned a worker, well if your worker doesn't know the whole process or doesn't know all the rules, you're just sort of stuck and you're fighting them for everything that you need. SERVICES AND SUPPORTS UNNECESSARY COMPLEXITY LIMITS ACCESS Lack of Awareness Regarding the Rights of People with Disabilities On my own, stumbling through online information. I was never told what my rights are in regards to ADA accommodations and what kind of discrimination I might face. I've had to figure that out on my own, by stumbling across the right information, usually online. No help from government regarding my ADA rights. It's important that disabled people and their caregivers know what their rights are! I only learned about the ADA in the last few years from reading other people's stories online and passing along what they know. No doctor or government employee has ever told me about the ADA or civil rights, which would have been helpful especially when I was younger. SERVICES AND SUPPORTS UNNECESSARY COMPLEXITY LIMITS ACCESS Lack of Clarity Regarding the Availability of Services, and How to Access Them Some don't know how to navigate the system, and fall through the cracks. There needs to be more public knowledge of the resources and programs available to families of individuals with disabilities, and how to access them. If I wasn't able to navigate the system, and ask questions, I would not know what to access. Think about an adult who may not be able to know how to access those opportunities. This is not equity! You Need To Know Exactly What To Ask For, and What Words To Use, To Get The Services You Need There is no one source to easily understand the services that are available and how to access them. If you call into the county and you don't have the exact words or know exactly what you're looking for, they don't help you. I had to hunt for everything that was available. There wasn't a silver platter of options that I could pick and choose from, I had to ask the right questions of the right people. It's an art in itself to know what you are entitled to. A parent wanted waiver services for her son, but didn't know how to ask for it. She called and asked for a service to help pay for camps and daycare. And they responded with, "We don't do that." If she would have called in and said she wanted the MnCHOICES assessment, they would have known exactly what she wanted. But because she didn't have the exact wording of the waivered service, so they didn't seem to know what she wanted. SERVICES AND SUPPORTS UNNECESSARY COMPLEXITY LIMITS ACCESS Some Unnecessary Eligibility Requirements There are complex processes to pay for services. It seems like there should be some kind of assessment that tells what supports a person needs and how they can get them. I'm currently going through the process of moving to the Payroll Model to pay for my PCA through the waiver program I'm on. This is requiring me to create a Federal Employer Tax ID number, basically making me a small business employer of my PCA. Even though I have been told this does not increase my personal liability, I cannot think of another assistance program that requires the recipient to do this. SERVICES AND SUPPORTSGAINING ACCESS CAN BE A DIFFICULT, DISCOURAGING, DEMORALIZING PROCESS A Complex, Time Consuming Process It's exhausting. It can be excessive. It takes up all your time, energy, strength. And you need to have a feel for doing paperwork and social skills, so all these skills, and you get sick, and get behind. Overwhelming, Frustrating, Have to Fight, Why? Being the parent of a special needs child is so overwhelming. It's frustrating calling the county, doctors, teachers, and day cares, and not getting a response right away. Sometimes it takes days. Why shouldn't you get the information the first time you call in? Why should you have to fight for it? Some get services, some are denied. It's in the hands of the case workers. We don't know why some people are denied services and some people get covered. We don't know because there are so many gray areas and it just depends on what your case worker considers in order to qualify. SERVICES AND SUPPORTS GAINING ACCESS CAN BE A DIFFICULT, DISCOURAGING, DEMORALIZING PROCESS Some Requirements Have Unintended Consequences Penalties for making too much money. My daughter and I want to be productive members of society, but she's not disabled enough, and our family income is too high. I finally found a program that will help me but it requires that I be separated from my husband so as not to take his income into consideration. Income stipulations prevent access to higher paying jobs. I am always trying to figure out and understand what the income limits are. I turned down a job last year because I was afraid that an increased salary would increase my parental fee, making my higher income useless. SERVICES AND SUPPORTSGAINING ACCESS CAN BE A DIFFICULT, DISCOURAGING, DEMORALIZING PROCESS Poor Customer Service Government sends a message that they don't want you to access services. It felt like the government was saying "We have assistance for you, but we really don't want you to have it, so we're going to be as difficult and demoralizing as possible." It really doesn't make me want to go to the government for any kind of assistance in the future, no matter how much I might need it. Interacting with the government in regards to needing benefits, tends to lead to frustration and feeling like I don't matter. I've been transferred multiple times to different people and had to explain myself over and over again. Most people seem so disinterested in helping me solve my issue. Overextended Government Case Workers There are not enough employees to work one-on-one with people. State employees have too many cases to handle. I feel like no one will listen or guide me to available services. You will be lucky if you get anything. There are all these families that are going without the help that they need because case workers don't have the time or attention or energy to take on one more battle. SERVICES AND SUPPORTS STRATEGIES FOR IMPROVING ACCESS Need Single Point of Contact When Accessing Services. Frustrating process of finding the right person to talk to. My son was signed up for the CADI (Community Access for Disability Inclusion) waiver, and a month later I got paperwork with a bill from the state. When I contacted his caseworker at the time, she said she doesn't deal with anything financial and I was referred from person to person. It was frustrating. I had to constantly ask and talk to different people. I would phrase questions in different ways and would get information from different people. It was very frustrating, like feeling around in the dark to find a light switch. Employment Provides Independence and a Sense of Purpose Supports Inclusion: Being Seen as an Equal Member of Society Current Limitations and Barriers to Employment One Minnesota Goal: Fulfilling employment opportunities, appropriate to each individual's abilities, are available and accessible to all. Strategies for Achieving One Minnesota: Partner with private sector employers, and provide incentives to identify opportunities for employing people with disabilities in productive, fulfilling positions. Eliminate employment disincentives, such as disqualifying people from receiving supports if they become employed. Enable livable earnings Expand access to job coaching, and provide subsidies as needed, to enable people with disabilities to earn a livable income. EMPLOYMENT PROVIDES INDEPENDENCE AND A SENSE OF PURPOSE Employment is Key to Independence for Many People with Disabilities Having a job gives us the ability to be independent, considered as equals to others in the workforce, and not be labeled by our disabilities. Employment opportunities are extremely important. Money is a real motivator, just like for the rest of us, it's rewarding. It is definitely important to have employment options based on an individual's needs, and opportunity for growth and development in the workplace. Everyone needs guidance, leadership and challenges when it comes to a new job. EMPLOYMENT PROVIDES INCLUSION: BEING SEEN AS AN EQUAL MEMBER OF SOCIETY People with Disabilities Want to Work. Contributing members of the workforce are respected. The more we can be integrated into society and be seen as contributors, the more I think we will be seen as whole people by society. Being able to work and contribute is very empowering. You get to be seen as a member of society, not just someone who needs help from others. It normalizes us. Being able to work and have a good job, not just being a token, feels incredibly empowering. I am using my skills and knowledge to contribute and be part of a team. I am able to make money and pay bills. EMPLOYMENT CURRENT LIMITATIONS AND BARRIERS Long Waiting Lists and Limited Opportunities Limited opportunities for higher paying jobs above poverty line. There are not enough higher paying jobs to get off state aid. People live at poverty level. Job programs have long waiting lists and are hard to find. Without the support of my daughter's foster home manager, we wouldn't have a clue about other available resources. After several months, the manager finally found a program that didn't have a waiting list. Individuals with disabilities should not have to wait for months to get into a job program. Employment Might Disqualify a Person From Receiving Some Services. Disability benefits that limit work fosters a culture of dependency. I've heard with some disability benefits, recipients are not allowed to work or are limited in how much they can work. That doesn't make sense to me, why put barriers to someone being able to work? That fosters a culture of dependency and not actually empowering people. Need for Supported Employment Environments. Coaching, time to learn job skills and on the job supports are needed. Job Coaching is a valuable service that assists employees in doing the best job they can do. We need to have more coaches available. It is my hope that my children are able to find satisfying and competitive wage jobs in the community. They are going to need time to practice job skills, supported employment gives them the opportunity to do that. We need interest based, skill focused job opportunities in supported employment so they are able to find joy in using their skills to give back to their community. HOUSING Very Limited Options Staffing Crisis: Shortage of PCAs One Minnesota Goal: Plentiful housing options, with sufficient services for people with disabilities, are available in communities throughout the state. Strategies for Achieving One Minnesota: Invest in PCAs. Allocate more money for training and increasing incomes of Personal Care Assistants, to meet the need for more and better in-home staffing and personalized care. Expand housing options. Provide more affordable housing options throughout the state for people with disabilities. Raise income eligibility levels. Raise the base income threshold for eligibility for affordable housing and personal care assistance, to ensure that people do not need to live at the poverty level in order to qualify for these supports. Limited Housing Options and Waiting Lists. Some struggle to find a living environment that meets the needs of people with developmental disabilities. Some families are faced with having to keep their loved one at home because there isn't a home to meet their needs. Others are being placed in homes that cannot meet their needs. I had to fight tooth and nail to get him in the group home. It can be difficult to find housing outside of group homes. Living situations are limited. We were lucky to find adult foster care, so he does not live currently in a corporate group home because shift workers probably wouldn't be very appropriate for him. Becoming Ineligible for Assistance, When It's Still Needed. Affordable housing is only available for those below the poverty line. Affordable housing is only available for people who are financially kept very poor in order to continue receiving assistance, like social security and waivered services. Just because you can afford housing doesn't mean you can afford needed services. My daughter struggles with having a place to live. She is paying $1,200 a month right now and she's been threatened to get kicked out. She needs someone to help her clean. She doesn't have a lot to offer them as far as money is concerned and she can't find anybody. This would be something pretty simple as far as assistance is concerned, but again she's not bad enough off. We worked really hard to make her self-sufficient. Now that she's relatively self-sufficient, she's too high functioning to get any help. We often wonder if we should've left her less self-sufficient, then she would've qualified for assistance. HOUSING STAFFING CRISIS: SHORTAGE OF PCAs More Support for Personal Care Assistants. Higher pay for PCAs would decrease the turnover and improve quality of care The State of Minnesota needs to allocate more money and training for in-home staffing. There's a huge turnover in workers. It's just not something that people are choosing as a career. It's very low pay, leading PCAs to burnout. TRANSPORTATION Metro Mobility: the Longest Ride Disability Parking Isn't Always Available or Respected. An Independent Life Depends On Reliable Transportation. One Minnesota Goal: Efficient transportation services for people with disabilities enable access and full participation in their communities. Strategies for Achieving One Minnesota: Expand public transportation. Continue expansion of light rail and other public transportation options in the Twin Cities and other metropolitan areas in the state. Increase Metro Mobility funding. Increase funding to enhance the availability and efficiency of Metro Mobility and (perhaps) other transportation services for people with disabilities. More options for towns/rural Minnesota. Expand transportation options for people with disabilities in smaller towns and rural areas. Better Transportation Services Would Enhance Overall Integration and Inclusion. If people are not able to easily access their community, then they are very limited as to the extent they can participate in it. In order for other types of improvements to have any real impact, people first need to be able to get to where they need to go and easily access them. Many people miss out on contributing due to the time and frustration involved in transportation. Transportation is one of the biggest obstacles to overall inclusion. I would like to see continued expansion of the light rail system to the Northwest suburbs and increased funding to the Metro Mobility program. This would allow people with disabilities to better access their communities and take advantage of various inclusive efforts. I know of many people who have lost gainful employment due to a lack of timely transportation. Lack of Transportation Options Make Services Inaccessible to People in Smaller Towns and Rural Areas. The lifestyle of rural areas is appealing to some. A lot of people who have developmental disabilities gravitate to rural communities because it's not that sensory stimulating. We don't have all the traffic, airplanes flying over, and it's safer. You can get through your days without being bothered. Services don't reach rural areas. I live up in Northern Minnesota, where there aren't a lot of services or workshops. I usually have to travel over four hours to the city for them. That's a little tough if you don't have a good vehicle or the time. No public transportation is available. Other towns have transportation services to help get to school, doctor appointments, the gym, etc. They won't come to my town, and that's problematic. I want to make transportation better for all Minnesotans. Limitations of Metro Mobility The ability to get where you want to go increases the opportunity to be a part of the community. It's so critical to have reliable transportation available for people to be able to be fully integrated into their community. Metro Mobility is a good start, but you can wait hours or be in the vehicle for hours before you get to your destination. You can't rely on it to get you somewhere by a particular time. Long wait times and long rides. We expect more from people with developmental disabilities than we do from ourselves. I would never ride a bus for 90 minutes to get to work. Long wait times can hinder those from becoming a successful part of society. The long wait times force many to give up or not take on opportunities, which makes transportation such a vital issue for so many people. Disability Parking is Very Important To Those Who Need It, But It's Not Always Available or Respected. There isn't an adequate amount of accessible parking spots in parking lots or parking ramps, especially since there are more people than ever who qualify for disability parking tags and plates. I use a wheelchair and I need extra side-lift space to get my ramp down. I lose independence when someone is parked in that aisle spot. Educating the public on disability parking is important. I see far too many people hanging out in disability parking spots, because "no one is using it" or "it's only for a minute, I'm waiting for someone." People just see them as free spaces to park and not as an important service for those of us who really need them. EDUCATION Creating a Society of Inclusion Inconsistent Understanding & Practices from School to School Better Results with Inclusion Parents Have to be Strong Advocates for Their Student A Need for Personalized Plan/Goals Local, State, and Federal Inconsistencies One Minnesota Goal: All public schools in the state provide students of all ability levels with free appropriate public education in the most integrated settings. Strategies for Achieving One Minnesota: Educate the Educators: It would be most impactful to educate both teachers and students about the history of treatment of people with disabilities, highlight contributions by people like Ed Roberts, sensitivity training concerning obstacles, and focus on strengths rather than deficits. These discussions could begin in schools and carry forward into communities. Assure FAPE For All: Minnesota needs to do better in making sure all students receive a Free Appropriate Public Education (FAPE) in the most integrated setting. Include Parents in Policymaking: Parents of kids with disabilities need to be a part of the planning and policymaking for special education. EDUCATION CREATES A SOCIETY OF INCLUSION Without Inclusion in The Schools, the Community Will Not Be Accepting. Inclusion starts at kindergarten. Children who learn the value of inclusion become adults who are more likely to practice inclusion. Inclusion is not practiced in our school district, so the kids who live around us are not accepting of my son's disability. No one wants to play with my son because he is different and they do not know who he is. The glass door is closed to inclusion in our neighborhood and our community. EDUCATION INCONSISTENT UNDERSTANDING & PRACTICES FROM SCHOOL TO SCHOOL Varying Degrees of Inclusion Different definitions of inclusion between schools. Not all schools are the same and the definition of "inclusion" is not widely interpreted the same. I had to look for a school where my vision of "inclusion" matched the school's. I do not believe every child with a disability is given every opportunity to thrive because inclusion isn't equal in every school district. Varying levels of inclusion between schools across the state. There are still schools that don't understand what inclusion really is. They are confident that they are inclusive, but the students with disabilities are still not accessing general education settings or a curriculum for learning. Some schools are still so backwards-thinking about inclusion and what's best for kids with disabilities. EDUCATION INCONSISTENT UNDERSTANDING & PRACTICES FROM SCHOOL TO SCHOOL We Need to Educate Teachers & Students About Developmental Disabilities. Make inclusion a common topic of conversation. We learn about Rosa Parks and Martin Luther King Jr. during Black History Month in school. It would make sense to have similar curriculum about those with disabilities. If people with disabilities are part of the curriculum in school, that would help normalize them and make inclusion a more common topic of conversation. My son is in 11th grade and we still need to push for him to be fully included with the appropriate supports. Using our own money, we hired an Educational Consultant to address this inequity and teach the teachers and administration how it SHOULD BE DONE. This is completely unacceptable that the school district did not follow the IDEA Law (Individuals with Disabilities Education Act). EDUCATION LOCAL, STATE, AND FEDERAL INCONSISTENCIES Contradictions Between State Mandates and School District's Rules I had to get an advocate lawyer involved when trying to get an Individualized Education Program (IEP) for my son. The lawyer did the best she could, but because of school district's rules, regulations and protocol, over half the items we asked for were denied. At our expense, we got training for the paraprofessionals for dealing with my son's behavior and how he learns best. It's hard to deal with what is mandated by the state versus individual school district rules. EDUCATION LOCAL, STATE, AND FEDERAL INCONSISTENCIES Lack of Promised Federal Funds Our schools have never been funded at the Federal level as promised back when Special Education started in the 1970s.This causes burden on the school district, and the schools ended up being more segregated. In our community they don't have the funds to support inclusion that would best serve children with disabilities and the community. EDUCATION BETTER RESULTS WITH INCLUSION Students with Disabilities Learn Acceptable Behavior, When Included with Other Students. My child has developed/heightened behavioral issues when separated from the classroom. He learns best when with his peers; he wants to be like them and tries harder. When students with disabilities are included with other students, they may learn less of the content, but they learn how they should act with peers and in the community. This sort of learning is not transferred when the child is in a self contained classroom which only includes peers with disabilities. EDUCATION: GOING TO BATTLE FOR SERVICES Parents Need To Fight For Special Education Services Facing resistance and intimidation from educators. Parents have to fight tooth and nail to get services. There is nothing more intimidating than two parents sitting in a room full of educators fighting for services. It's really sad if you can't stick up for your student, and have to back off because of this intimidation. I always seem to be fighting for programs and never told how to access them. Inclusion denied after kindergarten. At the transition meeting at our local public elementary, we were told that (our son) would spend 60% or more of his time in the resource room with other special education students. He would spend only a small amount of time out of the room with his kindergarten class. Lunch would even be in the Resource room. I was livid. I stood up and walked out when my request to change that was shut down. I knew that children with developmental disabilities learn better and retain more when taught in an inclusive classroom. EDUCATION: ON GOING BATTLE FOR SERVICES Continuous Battle at All Grade Levels. Need to fight for paraprofessional support. As my daughter progressed through school, I had to diligently advocate for her to be around her typical peers, as the trend was to segregate the kids with special needs. It was an exhausting endeavor at times. I also had to battle for 1:1 paraprofessional support starting in middle school, which was an absolute necessity for her to have an inclusive experience at school. Wide differences in quality of service between paraprofessionals. When my daughter moved from elementary to middle school, I asked that her paraprofessional(para) transition with her, and I was informed that things didn't work that way. Because of their "policy," we spent years going through a revolving door of paras. Some paras were good, and some were awful. Once I had to bring an advocate from the Law Center to a school meeting in order to have the para removed from her position. I love this photo of my son singing at a choir concert with his typically developing peers. He is the cute, short one in the middle of the pack. Now this is what Full Inclusion looks like!! EDUCATION: WHAT FULL INCLUSION LOOKS LIKE Technology High-Speed Internet Access Online Government Services One Minnesota Goal: High-speed internet and easy to use government online services are available and accessible, regardless of location or income. Provide affordable high-speed internet access to people with disabilities in all areas of the state. Design user-friendly government websites that provide clear and complete information regarding disability services and eligibility. Online Services: Create an accessible, easy to follow online application process for people with disabilities to obtain services. High-Speed Internet Access Enables Opportunities for Inclusion. Access to higher education. I would be able to do more demanding activities like online college classes that are time sensitive. Also, I would have better connection in bad weather. High-speed internet would enable me to take classes without going on campus. Out-of-reach to high-speed internet in rural areas. I live out in a rural area and I can't get high-speed internet. The highest speed that I can get is probably two to three levels below what they call high-speed internet. It's very expensive. Some disabilities require specially designed computer technology. If you cannot type, how are you going to access filling out a form unless you have someone who can do it for you? Unless you have a special computer, how are you going to get access? Need To Improve Online Access To Government Services. I prefer being able to communicate in ways that respect my time and energy. It would be nice to be able to get information without having to physically go somewhere, like a county service center; whether being able to call or email or chat online. Opportunities to update online user experience. It's vital that the state websites keep up with changes in technology and ease of navigation. We're in the 21st century now, the online experience for state websites and forms needs to be easy to use. The multiple state agencies' websites don't talk to each other; it can be hard to find all the information I need. The disaster of the MNSure website and the issues with MNLARS shows that it's really important to bring in people who understand website design and online user experience. I would say having an easy to navigate website with the right information would be incredibly helpful. I don't know what I qualify for or how to ask. I can't spend hours or days trying to hunt information down, only to find out I can't use any of the services. Thank you! Market Response International Derek Pearson, Research Manager d.pearson@marketresponse.com Lynn Schreifels, Research Analyst l.schreifels@marketresponse.com Tom Pearson, Managing Director t.pearson@marketresponse.com To request an alternative format of this report, please contact the Minnesota Governor's Council on Developmental Disabilities: admin.dd.info@state.mn.us 651-296-4018 or 877-348-0505