by Clare Collins
MINNEAPOLIS, MN—My cousin Austin was born blind and autistic. He grew up fairly isolated from the rest of the cousins, reading his braille books and playing on his piano keyboard in his room every day. Austin had a true gift with the piano. He would listen to the radio all day from a young age, and play the music he heard on his keyboard. As much as I hate to admit it, I mostly ignored Austin growing up. He didn’t speak like the rest of my cousins did, and because of that I often didn’t understand him, and didn’t make extraordinary efforts to communicate non-verbally. He hung out alone and mostly communicated with his parents and his staff caregiver.
Yet when I think back on my childhood, I wonder how this experience could have been different. I never understood autism, and therefore never understood that people with it are just as talented and smart as my other cousins and I were—they simply process things differently. If I had been curious about Austin instead of nervous and avoidant around him, I might have learned a lot more about how complex and diverse the human mind can be. In many ways, the manner in which I thought about Austin while growing up is endemic in our society. Because of the lack of work opportunities in the community, people like Austin can remain isolated from neurotypical people, keeping everyone from growing and learning together.
However, this past semester I’ve been interning at a service that provides housing for individuals with developmental disabilities. As an intern, I engage with clients, plan activities with them, work with staff to improve trainings and provide guidance for clients trying to live semi-independently. Clients mostly live in houses, so I visit houses and plan activities with clients, or sometimes just reflect on their day. I also talk with their staff members about their experiences at the facility. The experience has made me reflect more deeply about my relationships with people in my life whose mental processing is different from mine. Our societal perceptions of conditions like Autism, Schizophrenia and Down Syndrome, as well as the laws in place that segregate those with disabilities from the public, put up barriers for everyone instead of promoting reform. Minnesota is one of many states with a serious need for reform in services for people with developmental disabilities.
In 2015, the Star Tribune published a five part series titled “Failing the Disabled: How Minnesota Isolates and Marginalizes Adults with Disabilities.” The series explored the ways in which Minnesota laws in particular have failed to address the need for reform of services for people with intellectual and developmental disabilities. Much of the issues in Minnesota, according to the Star Tribune, stem from the overabundance of group homes in rural areas and the lack of meaningful job opportunities available to disabled people.
In 1999 the Supreme Court released what is known as the Olmstead Ruling, which “prohibits states from unnecessarily confining people with disabilities in special homes or workplaces.” The ruling was a landmark case for individuals with developmental disabilities because it made it possible for these individuals to live in the community instead of in institutions. Before the ruling, many individuals who could live semi-autonomously would have to cycle between living in institutions and living on their own because no community services existed for them. The decision said that those with developmental and intellectual disabilities had the right to receive these services in the community rather than in institutions.
After the ruling, the National Conference of State Legislatures surveyed main contacts for the Olmstead Act from each state to assess progress. By 2002, all but 42 states had created task forces to assess areas for improvement and begin a state Olmstead Plan. The eight states that had not written up plans were Kansas, Michigan, Minnesota, Nebraska, Oregon, Rhode Island, South Dakota, and Tennessee. Although most have made significant progress since 2003, to this day many individuals with developmental disabilities are housed in rural group homes, isolated from their families and friends. Group homes are not inherently negative facilities, and many actually do great things for clients. Many clients are happy in them and enjoy the guidance and supervision of the group homes. Some clients are also safer in groups homes because their parents cannot provide the 24 hour support they need and would receive in a group home.
However, some groups homes can also put too many restrictions on clients, or face issues due to understaffing. Clients may need permission to do basic things like go on a date. Some group homes are also understaffed due to difficult conditions and low wages. This can sometimes result in malpractice. Although group homes may be necessary for many clients, some argue other clients would be better off living at home and less segregated from society.
The group home system was seen as an improvement from the state hospital system, which was notorious for packed rooms, hallways filled with beds, a lack of rehabilitative services and underfunding. Many also used electroconvulsive therapy on patients, a therapy now used to treat conditions like severe depression. The therapy sends electric currents through the brain to trigger a small seizure, which can sometimes alter the brain chemistry and improve conditions. However, during its early usage in mental hospitals, patients were given extremely high doses without anaesthesia, leading to extreme memory loss, or, at times, fractured bones.
Group homes, in contrast, have much more regulations placed on them by the state of Minnesota to protect client rights and are required to regularly review medication dosage and client restrictions to protect from malpractice. However, group homes are still flawed institutions. The group homes in Minnesota ended up in mostly rural areas because when state hospitals began closing down in the 1970s for-profit operators bought up land in rural areas for group homes because it was cheaper. For this reason, 62 percent of group homes are now located outside of the Twin Cities, Minnesota’s most populous area. Locating them away from families of clients can be incredibly traumatic. In the past decade, many people living in group homes have run away in search of family and gotten lost in the wilderness. In 2010, a 44 year old man with schizophrenia wandered from his group home and went missing. His body was found decomposing in the forest two years later by hunters.
As an alternative to group homes, families of those with Intellectual and Developmental Disabilities (IDD) can keep their child at home and pay for a caretaker to work with them each day. My aunt Sharon, my cousin Austin’s mom, uses this system. However, she says it’s extremely difficult to find qualified, dependable and trustworthy staff to work with Austin because the state will only pay minimum wage to care for the client. Because of this, most applicants don’t want to work for her long term, and she is stuck with inconsistent and unstable care for Austin. She told me that this system has an impact on Austin. He, as most people, likes consistency in his caretakers. Having people come in and out of his life has made him less willing to open up and have a friendship with his caretakers because he believes they won’t be there in the long term. Most people can’t afford to pay workers extra money out of pocket for each hour, and even if they can, the state prohibits this activity, leaving people like Sharon desperate for long term workers.
The Olmstead Ruling also decreased the number of special workplaces, or what are known as “sheltered workshops.” Sheltered workshops are workplaces in which individuals with developmental and intellectual disabilities are segregated from the rest of the workforce and are accompanied by a supervisor. They were created after World War II to provide work options for individuals with disabilities, and use a federal loophole to pay workers less than minimum wage. Lawmakers justify this lower pay by asserting that because those with developmental disabilities generally are not as productive as other workers, they shouldn’t be paid as much. It is true that developmental disabilities might have an impact on productivity. Those with autism can sometimes have a lack of coordination, which could impact certain types of work, while those with down syndrome can sometimes have more difficulty learning new things. The average hourly rate is $4.05. Although most sheltered workshops are nonprofits, some hold business contracts with companies like 3M. Sheltered workshops also remove autonomy from workers. Workers are not given funds directly, and therefore don’t have the option to decide for themselves what they’d like to do. Because of this lack of independence, they often have limited interactions with the outside community, and instead spend most of the day with one staff supervisor and four or five other individuals with disabilities.
Despite the downsides to sheltered workshops and the Supreme Court ruling against them, Minnesota pays $200 million each year to keep the inefficient system running. According to a 2010 Department of Human Services Survey, it costs $52,000 to run a sheltered workplace that pays minimum wage. In contrast, it costs $5,300 to provide unsheltered jobs to individuals within the community.
Minnesota has made some reforms. In 2015, because of pressure from attorney Frank Donovan, Minnesota officials proposed what is known as an Olmstead Plan. Although a big step in the right direction, the plan is long overdue. As mentioned earlier, by 2003 42 states had created commissions to create Olmstead Plans, and Minnesota was one of the only states to delay this legislation. Olmstead Plans across states address ten main focus areas: transitions from institutions to communities, housing, retaining direct care workers, information and assessments, funding following individuals, reducing waiting lists, employment opportunities, data collection, transportation, and quality care. However, the Minnesota plan, which officials expect to complete by 2019, does not provide broad reforms, and instead produces modest gains in the number of individuals working in community settings.
In contrast, other states have made much quicker progress. Vermont, now seen as the model state for providing meaningful work and housing options for individuals with intellectual and developmental disabilities, has completely stopped funding sheltered workshops. Instead, Vermont sends the funds that would go to sheltered workshops directly to individuals, and lets them decide where they would like the funding to be used—be it for job coaching or other services. The system is more efficient and affordable because individuals are able to work and contribute to society more than they are when they do tasks that are often menial and repetitive, such as picking up trash or packing boxes in sheltered workshops.
Although states like Vermont have seen larger improvements to their services for individuals with IDD, the use of job coaches is not always successful, and these systems must be continuously reviewed and updated to provide the best possible services. In Oregon, for instance, sheltered workshops have also been phased out, but individuals still face barriers to meaningful employment.
I spoke with Laura, a college student whose brother has a developmental disability, about her family’s experience with her brother, David. David lives at home with their mother as his primary caregiver. Over the years he has worked for many employers, but hasn’t had success finding stable, meaningful employment. His jobs have ranged from stuffing envelopes to vacuuming rooms, and Laura says she and her family have grown frustrated with Oregon laws for individuals with IDD. Most recently, David had a job vacuuming for a local company. He was enjoying the job, and loved talking about it. He also got great tips from his job coach. David was having trouble vacuuming the whole floor, so his job coach came up with a strategy for David. As David says, “He came up with the cards. Before the cards I vacuumed the same spot over and over again. But then I put the cards down so I would not vacuum the same spot.” David seemed to be doing well at this placement. However, one day, he didn’t receive a schedule for the week. His mother contacted the manager, and found out the company had just changed the manager’s position. Nobody had bothered to notify the family that David had been let go.
My aunt Sharon had a separate issue with Oregon job laws. Although she understands the need to desegregate the workplace and bring individuals with IDD back into the community, she also says it’s important for those with disabilities to share community with other individuals like them. She said that before Oregon phased out sheltered workshops, there was a School for the Blind in Portland. Austin loved it because the other people at the school treated him normally. He was used to being treated as a blind person by the general public, but at the School for the Blind he was treated as a person. At the School for the Blind he did fun arts and crafts and felt at home. However, because it was considered a sheltered workshop, under Oregon law it was closed down. Sharon said she and other people active in the School for the Blind traveled to the state capital, Salem and protested the move, but Oregon lawmakers still shut it down. She suspects this was partially due to the cost of the program. Although it provided a stable community to people like Austin, it also cost money, and lawmakers didn’t want this cost in the budget.
Pay for Direct Support
Another issue in Minnesota, as in many states, is the matter of adequate pay for direct support staff in housing facilities. At the housing facility in which I worked, the starting hourly wage for a direct support staff is $10.50 an hour. The highest wage a direct support staff can earn is $13.37 hour, but only if they have served more than 10 years. The wages are set by reimbursement rates, which are determined by both the state and federal government. Most housing services do not have enough funds on their own to raise wages above this rate. These wages are funded by both federal and state Medicaid dollars.
Direct support staff who make this wage have an enormous amount of responsibility. They are responsible for making sure clients are fed, clothed, clean and healthy, and must supervise them 24 hours a day to ensure all of this happens. In many cases, direct support staff are working with clients who are nonverbal, self-harming, or even aggressive toward staff members. They must learn how to adequately respond to physical aggression without hurting clients, and also be conscious of extremely subtle cues clients might make about their well-being, needs, and concerns. They also must watch for clients who run out the door without warning, easily trust potentially dangerous strangers, or fall unexpectedly. Not only must they take care of basic needs, but they must also track the wishes, dreams, and goals of clients. This work is incredibly important and rewarding, but also extremely hard to monitor when you’re also working on providing safety to clients. The detailed and time-consuming nature of this work is partially why it’s so difficult to find people willing to work the job for such low wages. The job is tiresome and requires extensive training, patience, and care.
Despite the enormous physical and emotional toll of such a job, direct support staff have very little opportunity for improvement in their salary. As one direct support staff I worked with put it, “we’re really working at this point because we care about the clients. It’s not something you do for the money. I just want to make sure the clients I’ve worked with for more than a decade are safe and healthy.” She added that often you’re forced to work overtime to cover shifts, but also to make enough money to simply pay the bills.
Although this selfless attitude is admirable, wages at this level are not sustainable. Because of the rigor of the job and the extensive training necessary for it, not many individuals will be interested in direct support jobs, especially if they do not receive adequate wages. It’s quite difficult to maintain a healthy lifestyle, pay rent, and much less raise children while earning so little. I spoke with one direct support staff who told me she had decided to quit because she realized she could make five dollars more an hour as a waitress, with half the training and far less stress.
The result of low wages and stress is that many staff members are worn out, working long hours covering shifts that they can’t seem to get staffed. As one staff member told me, “even the most well-intentioned staff members start to get snippy after they’ve worked 24 hours in a row. The system is not good for the clients or the staff involved.” Society cannot claim we respect those who are neurodivergent while underpaying their staff, segregating them in rural communities and separate job environments, or relegating them to only menial job tasks. Respecting this population means paying them at least minimum wage, interacting with them regularly, and providing them adequate staff support.
All of this information brings me back to my cousin Austin. Growing up, I was completely unaware of these concerns, despite the fact that I regularly saw someone personally involved in the system who was related to me. While Austin was isolated in his living situation, usually staying at his house with a 24 hour caregiver, he was quite privileged in having the opportunity to live at home and go into the community with his family regularly. Because his parents could afford a caregiver, he was still able to see his cousins and family friends. Many other clients have little interaction with those who are not their primary caretakers or other neurodivergent individuals and live in more isolated conditions.
In many ways, my experiences with Austin encompass the issue of mental disability in the United States. Although it is very common to have a mental disability, our society segregates and isolates these individuals so much that they are hidden in plain sight. I grew up believing that Austin was so different from me that I needn’t speak with him except to greet him with “hello, Austin,” and walk past him to spend time with my “normal” cousins. More recently, another cousin has been diagnosed with schizophrenia, while two of my uncles are experiencing the impacts of a stroke on their cognition. I now realize that my perception of the word “normal” in regard to mental processing was extremely flawed. Every mind is unique and processes in its own way. As our society begins to accept this, we will be able to grow—as individuals as well as collectively.
Clare Collins is a senior at St. Olaf College studying social work and political science.
The views expressed in this article are those of the writer. The Contemporary takes no position on matters of policy or opinion.
The cover photo above is courtesy of the Disability Integration Project at the Atlanta Legal Aid Society.