"Noah cannot let this go. I can't tell if it's part of his diagnosis or if he just enjoys stirring the pot or a little bit of both" - Carver County Sheriff Olson
These words are taken from an email sent by Carver County Sheriff Jim Olson to Carver County Administrator Dave Hemze. It was typed in inconspicuous black font, covering one sides of a white piece of paper and It is one of thousands of letters, emails and memos I received in the mail today, to say nothing of the 2 am visits from cops and the threats to lynch me that were hung up all around the City Square Park— after I refused to, as Sheriff Olson so aptly put it, " let it go," and proceeded to publish my thoughts on how Carver County treats people with disabilities. I think in the beginning I did it more out of a desire to advocate than out of anger, as conversations are important, especially about a topic that resides at the heart of who we want to be as a community.
The entire thing is fairly frustrating because people come at disability issues from a variety of different perspectives, and people are at different stages of understanding of the cause-and-effect of issues facing minority groups in modern day America. There are a hundred different sentiments that can (and should) be analyzed in these conversations, but one keeps coming up that always gives me pause:
"Institutionalization ended a long time ago — isn’t it time for disabled people to get over it? At this point, they’re just using it as an excuse for their behavior. We all have equal rights now. They need to stop playing the victim and take responsibility. That’s not bigotry, that’s reality."
I hear it all the time and I could go into a 3 hour lecture on the history of the disability community or offer all sorts of arguments from philosophical legal and socio-economic perspectives, but I feel as though this is best illustrated with a simple story:
Once upon a time, there was a handful of blue houses in a neighborhood of yellow ones. Each day, the yellow house owners would dump all of their trash into the yards of the blue houses. Their owners hated it, of course, but if they complained, the yellow house owners would beat them senseless. If they went to the authorities, they’d beat them senseless too.
Day after day, so much garbage filled the blue house yards that it was impossible to clear it all. So the blue house people did their best to live their lives around it.
After years and years of this, the blue house folks said enough was enough. They banded together and blocked the road so nobody could get home. The yellow house owners tried to beat them up like they always had, but the blue house owners refused to move until the trash dumpers would listen.
The blue house people explained the obvious fact that it was unfair to dump garbage in their yards and vowed to continue to block the road until it stopped. It took a while, but finally, the yellow house people conceded.
But the blue house owners’ woes weren’t over. Their lawns were dead from years without sunlight. Their shrubs were withered from the toxic sludge that seeped in year after year. Some of the poison even penetrated the foundations of the houses, causing structural issues. The blue house people tried many things to remedy all of this, but there was so much damage, it proved difficult. Meanwhile, the yellow house owners’ yards thrived as they always had. And soon, they started complaining about how the blue houses looked.
“What’s the matter?” they asked the blue house owners. “We don’t put garbage in your yard anymore. Why aren’t you fixing up your yard?” The blue house people explained that they’re trying, but were running into some problems. Their tools were rusty from years in storage. They needed new plants, some good soil to restart their grass, and maybe some fertilizer.
Since the yellow house owners had caused the problem, they thought “hmm, maybe the yellow house owners will help us since they originally caused all this damage.”
“You’re just looking for a handout,” said the yellow house people. “You just need to work harder and be responsible. Look at your yard! What a mess! We don’t dump our garbage on you anymore. We’re equal now. There’s nothing wrong with your soil or your tools — you just don’t want to work at it like we do. I bust my butt to get my lawn looking this way. It’s your own fault that yours isn’t thriving and your house needs work.”
See the problem? This is what it sounds like when "normal” people refuse to acknowledge the generational, societal effects of America’s history of prejudice against the disabled. This is what it sounds like when people place the blame for all the issues they've caused and failed to address on the disability community. It is patently unfair to deny that so many challenges my community faces are the direct result of centuries of dehumanization and degradation. It is blatant arrogance for normal people to expect people with disabilities to take responsibility for disparities in our economic and justice systems over which we've had no control (AND STILL DON'T HAVE ANY CONTROL) when it's their fault the disparities exist in the first place.
You cannot exclude people away from society for 200 years, systematically and legally oppress them for another century, and think that everything is hunky-dory a mere 28 years later. I know all these behavioral determinist folks who want to point their finger in a disabled guys face and “move on,” to leave that ugly history in the past, to start with a clean slate. But there’s no such thing.
We can’t just wish away the far-reaching effects of blatant discrimination We can’t pretend that a mere two decades after the American with disabilities signed, which contrary to popular belief had opposition (and still does) that we've successfully weeded out the deep-seated prejudice that historically has and continues to fuel centuries of mistreatment for individuals with disabilities both inside and outside of institutional settings.
This isn’t about “white liberal guilt” or "revenge." Even though the very least — and I mean the very least — those who define themselves as "Normal" could do is acknowledge that our ancestors gave birth to this current mess, even if we had nothing to do with it directly. Of course we haven’t personally had somebody locked up in an asylum, but if we deny the ongoing effects of Minnesota's legacy of Ableism and refuse to own our role in helping remedy the problems it’s caused, then we are no better than that yellow house owner chastising his neighbor for the state of his yard — dishonest, unjust…and yes, prejudiced.
“I’ve never seen a session this badly mismanaged. I’ve never seen a session less transparent. I’ve never seen a session more beholden to special interests,” –Governor Mark Dayton on the recent legislative session.
“A plague a' both your houses!” –Mercutio, Romeo and Juliet
Amen. The Governor and the Republican legislative leadership can point fingers all they want, but I say it cuts both ways. Republicans lard up bills with provisions they know the Governor will veto, and the Governor waits until the last minute to promote “emergency” funding for schools. Why does it always end up this way, a game of last minute chicken? Well, it wasn’t always this way. I remember when people used to work together to get thinks done for the greater good, but in recent years with more partisan wrangling, those days are gone.
Assuming the Governor follows through with his threat to veto the Omnibus bill, or parts of it, the list of things that didn’t get done is long: elder abuse prevention, tax conformity, distracted driving enhanced penalties, and no action on sensible gun safety laws which most support, to name a few.
It gets worse. Legislative leaders dumped a document with over 900 pages before the legislature two hours before adjournment with no time to review the provisions, nor offer amendments. This kind of stunt directly violates the single subject provision of the Minnesota Constitution:
Article IV, Section 17, of the Minnesota Constitution states: “No law shall embrace more than one subject, which shall be expressed in its title.”
So what is the remedy? Is it too much to ask that the Governor and the legislative leadership sit down before the session and outline their priorities? That they try to find common ground? That they agree to adhere to the Constitutional requirement that bills embrace only a single subject, and let the bill pass or fail on its merit? That they develop a legislative agenda schedule, allow time for hearings and floor votes, and stick to it? That they actually COMPROMISE?
This fall candidates will be asking for your vote. Ask them if they will adhere to the principle of putting all cards on the table and working across the isle to get things done for Minnesotans. Ask them if they will adhere to the requirement of the Constitution to stick to the single subject rule. If they can’t or won’t pledge to do this, then for the sake of good government, throw the bums out.
Randall Bachman is a retired health and human services administrator, a former school board member, and an advocate for persons with disabilities. He lives in Afton.
Although employers are legally required to provide reasonable accommodation to workers with disabilities, in reality, getting the accommodations you need is less than straightforward. Obtaining reasonable accommodation is frequently a back-and-forth process between the employee and employer that costs the employee time, energy, and money. So it’s not surprising that so many people with disabilities are drawn to self-employment. When you run a business of your own, you can work in the time, place, and manner that’s best for you. And while business ownership comes with many challenges of its own, that flexibility offers enormous relief to people with disabilities.
The rise of home-based businesses has made self-employment especially appealing to people with disabilities. With a home computer and a high-speed internet connection, you can run a wide range of businesses. A new business owner might turn a longtime career into a freelance venture, start a blog, or begin their own e-commerce business. Even if you don’t have a ton of skills to draw on, consider starting a business drop-shipping popular consumer goods. Topping Oberlo’s list of business ideas that make money are: phone cases, backpacks and drawstring bags, and personal grooming tools.
No matter what type of business you choose, you need to know the basics of small business ownership. Most businesses have to register with their state. You may need a sales tax permit and other licenses, depending on the type of business. If your business exposes you to liability, incorporating and purchasing insurance is a smart business decision. Forming an LLC is a simple, affordable process that protects your personal assets from business dealings. You can learn more about registering a business and various business structures at the Small Business Administration.
After your business is registered, it’s time to create business bank accounts. A small business checking account keeps personal and business transactions separate. Building a relationship with a banking institution also gives you access to credit for financing business expenses.
Health insurance is a common concern for people with disabilities who are taking the plunge into small business ownership. While insurers through the Health Insurance Marketplace can’t deny coverage or charge more for people with disabilities, available plans can be costly while offering insufficient health coverage. However, you don’t have to remain unemployed or stay in a job you’re unhappy with just to retain health coverage. In Minnesota, you can obtain coverage under the Medical Assistance for Employed Persons with Disabilities (MA-EPD) program. The Minnesota Department of Human Resources has more information about MA-EPD.
When you’re living with a disability, self-employment represents more than a paycheck. It represents freedom from rigid office environments and unsupportive bosses, the ability to create your own accommodations, and the opportunity to pursue a passion. If the idea of starting your own business has crossed your mind, it might be time to take a closer look at self-employment.
Patrick Young, Founder of ableusa.info
Image via Unsplash
While public policies are aimed at creating a framework for our lives that offer protection and support, many that are currently in place produce effects that are unjust. When negative social impacts caused by policies are discovered, it is the people’s duty to collaborate to revise these laws. In a democracy, the policies in place should reflect the values of the people. Through strategic support efforts, individuals can work together to greatly impact policy that benefits its citizens. Advocacy is much more than just proclaiming one’s belief for something. Advocacy is the physical support that contributes to a change.
What does it mean to be an advocate? A self-advocate of the disability community encompasses the meaning fully, stating advocacy is “knowing your rights and responsibilities. Self-advocate means standing up for your own rights. Self-advocate means speak for yourself and make your own decisions, being more independent, standing on your own two feet and sticking up for your rights" (Anderson 2017). Advocacy is multifaceted, and elicits results through continuous and thoughtful actions. By further interpreting this meaning, an individual can understand the fundamentals of being an advocate and begin to make a change in policy.
1. Knowing your rights and responsibilities.
To begin the path to advocacy, one must be knowledgeable of the legislative system and the meaning of the laws in place to protect an individual’s rights. Through this understanding, an individual is able to navigate the political system and make effective efforts in supporting revision for better policy.
2. Speak for yourself.
The values of a community cannot be known if the citizens of the community do not contribute to the conversation. While elected officials are appointed to represent and promote policy that is beneficial to society, it is the duty of the citizens to create a voice that guides policy makers to create effective laws.
3. Stand on your own two feet and stick up for your rights.
To instigate change against policies that are inconsistent with a community's values, participation from the individuals of that community is essential. Standing on your own two feet and sticking up for your rights reflects individuals of the community voicing their opinion and not conceding to unethical policies.
As stated above, the fundamentals of being an advocate involve: understanding your rights, staying informed, and participating in strategic movements that contribute to revising policy. Advocacy empowers a community and allows for the voice and values of that community to be heard, and therefore, utilized in the installation and revision of laws. Being an advocate means influencing the laws that influence you.
By Haley Hajjali / U of M
1. Anderson, Sian, and Christine Bigby. “Self Advocacy as a Means to Positive Identities for Individuals with Intellectual Disabilities .” Journal of Applied Research in Intellectual Disabilities , vol. 30, 2017.
Headlines across newspaper front page scream PCA Fraud! Doesn’t it makes you want to cringe and yell out, “We are not all bad providers!”
I have worked for a Fiscal Support Entity (FSE) for the past 10 years, specifically with the Personal Care Attendant (PCA) program along with other self-directed programs. Over time I have seen, both suspected and confirmed cases of fraud. Each time fraud is suspected, you hope it’s not true. But an investigation takes place, a report is made with the State and the questioning begins. While cases of fraud are few and far between it does happen. But, with each case it makes a provider tighten their policies and practices to ensure it does not happen again.
While it feels as if we read or hear about a new fraud case each month, the following fraud facts might surprise you. Within the state of Minnesota there are 240,000 enrolled providers, some examples are PCA’s, pharmacists, transportation providers and day care providers. Over all there are 100 different provider types. For each person enrolled, the Department of Human Services (DHS) will authorize a unique identifier which is used for billing. The billing for Medicaid services is overseen by the Office of Inspector General (OIG). Currently OIG oversees provider billing for the $12 billion dollars Medicaid industry in Minnesota, this fact came from a recent Senate hearing in which the DHS and the OIG reported their findings on PCA Fraud.
Within this same report, OIG indicated in 2016 there were 361 completed fraudulent investigations. Out of these 361 completed reports only 189 were related to PCA fraud, so this accounts for 52% of the fraud cases within Minnesota. Also 2016, according to the Bureau of Labor Statistics there were 67,420 workers employed as personal care aides for recipients of Home and Community Based Services in Minnesota. If we do some math comparing the 189 cases of fraud compared to the amount of workers this breaks down to 0.002%.
On a national level, Applied Self Direction (a national organization focused on technical assistance for self-directed services) conducted a study in 2015 and reported there were 536 indictments for fraud, waste or abuse of Personal Care Services out of the more than 2 million PCA’s working throughout the nation. That calculates to 0.03%, or if you want look at this in another way, it breaks down to 1 in every 4,500 PCA’s.
As a Fiscal Support Entity; our staff looks at every timesheet, every signature, and every receipt that comes in to ensure accuracy and to avoid any potential fraudulent activity. Fiscal Support Entities or PCA agencies have policies in place to report suspected fraud or training for workers upon hire and annually on what constitutes fraud in an effort to minimize activity. Both PCA agencies and Fiscal Support Entities have to pass rigorous requirements with the state in order to provide services.
So while the news would have us believe that there are fraud cases running rampant across the county, the facts indicate a relatively low percentage. While there may be a case from time to time, over all services are being provided without problem.
Written by: Julie Lux, MRCI
While important issues like the elder abuse cases are sweeping media attention, there are other major concerns that directly affect vulnerable populations in Minnesota. Currently there is a direct care workforce shortage affecting thousands of individuals with disabilities. In July of 2016, the Minnesota Department of Human Services hosted a Direct Care Workforce Shortage Conference attended by over 180 individuals to begin addressing the problem. The result of this conference was a DHS report in November of that same year summarizing issues relevant to the the workforce shortage, with one of the major themes being the work of personal care assistants.
Personal care assistants (PCAs) help people with their most basic needs, working through day-to-day activities in the homes and communities of those they serve. Without qualified PCAs, many individuals would struggle with everything from eating to getting dressed. As a consequence of the current PCA shortage in Minnesota, many people are understaffed and not getting the care they need. Some endure uncovered shifts, are forced to stay in bed for prolonged periods, or even sleep in their wheelchairs overnight. Without adequate care people with complex needs can develop severe health complications that require costly hospitalizations. Left completely unattended some individuals cannot survive and more and more deaths are occurring due to a lack of trained and available workers.
This shortage of workers can in part be explained by a deficiency in adequate funding. Our state sets the rate and reimburses providers who compensate the PCA’s. Currently PCS’s earn as little as $10 to $12 per hour and receive few benefits. The pay scale has not kept up with the marketplace and workers can find better paying jobs in most industries. Additionally, the same level of pay applies to all PCA’s, whether the client has basic needs or complex needs dis-incentivizing PCA’s to take a harder position requiring the administration of more intense services.
On Monday March 12th, 2018, a hearing was held in the Minnesota Senate for a bill to begin addressing the problems around the workforce shortage. The Critical Need for Enhanced Rate for PCA Services, otherwise known as the Complex Care Bill (HF481/SF393) is legislation that asks for a higher reimbursement rate for PCA’s that work with individuals needing ten or more hours of PCA services per day (generally the more complex cases). Under this bill the PCA wage would be at least 10% higher than the typical PCA wage. These PCAs would also undergo more training, similar to Nursing Assistants or Home Health Aides.
There is an urgent need to pass bills like the Complex Care in order to improve availability of support staff for those in the disability community. Enhancing the rate for PCA’s that serve individuals with more complex needs is an essential part of meeting the needs of people with disabilities in general and beginning to address the overall workforce shortage.
More information on this bill can be found on the policy page of this website.
By Jenna Ogle / U of M
25 million Americans suffer from bladder and bowel incontinence which can lead to a daunting range of health and lifestyle implications. Incontinence is a major factor in long-term care admissions, and the methods by which patients and caregivers are able to manage this condition seriously affects a person’s quality of life.
When the Department of Human Services (DHS) approached Minnesota legislators, during special session negotiations, with a proposal that would save money by decreasing what is spent on incontinence products by 35% it was included in the final Omnibus Bill without much question. When the disability community got wind of it they felt blindsided. This legislation, known as the Medicaid Preferred Incontinence Product Program (MPIPP) was passed during special session last May without public notice, debate, or awareness. There was no vetting process or input from stakeholders who actually use these products. Even the Governor was unaware of the implications of this bill.
The 14,000 Minnesotans who currently rely on these products are mostly unaware of this bill as well, but organizations that advocate for them are aware, and they immediately took action for its' repeal. One of DHS’s aims and initiatives is to work with Minnesotans to help them meet their basic needs so they can live as part of the greater community, yet the MPIPP does not support that. Currently, Medicaid recipients receiving incontinence products have a choice of products that best fit their needs. With MPIPP, the new program which includes a competitive bidding process, products are only covered if they fall on the MHCP Incontinence Products List. This significantly limits a patient’s options for their most personal and important needs.
ActivStyle, a home delivery medical supplier is just one of the many companies that would be affected without repeal of this bill. With the MPIPP’s "one-size-fits-all" distribution model, qualified Medicaid recipients will no longer be able to receive products through their original distributor. This will result in substantial job layoffs across the state for medical supply businesses. Additionally, through the MPIPP’s new distribution process, product recipients who live far from the Metro area will likely not be able to continue receiving products. While medical supply companies specialize in product delivery, it will become increasingly difficult for the new distribution model to reach individuals in rural or northern regions.
Incontinence is a challenge in and of itself. This narrowing of options is unlikely to save DHS’s projected 35% in costs as more product is used when quality goes down. The MPIPP is a similar single-vendor model to ones that have been implemented in twelve other states. However, seven of those states have had to abandon their programs after deeming them “corrupt.” The experience in other states further supports the fact that this model will not serve patients in Minnesota in a way that is sound and sustainable. Without proper access to needed products, individuals will become further isolated from their communities. In general, the MPIPP should be repealed and the existing incontinence program, which has been considered an exemplar nationally, should continue.
Jenna Ogle / Graduate Student U of M
Every year, as part of our work at the state legislature on behalf of people with disabilities, we are asked to support, or at least consider, legislation that is often contentious. This year we have again listened to presenters regarding the controversial Minnesota End-of-Life Option Act (SF1572/HF1885) authored by Senator Chris Eaton and Representative Mike Freiberg.
This legislation is modeled after Oregon’s 1997 Death with Dignity Act which has been adopted by six states (Oregon, Washington, Montana, Vermont, California, and Colorado) and the District of Columbia. The law allows terminally ill adults of sound mind to request and receive medication for a peaceful death. There are caveats that accompany the law such as the patient must be able to self-administer the medication, any health care professional can opt out of giving consent, and eligibility must be determined by at least two physicians, just to start.
There are numerous further safeguards including:
However, the disability community is not as supportive as the average, and we are actually identified as one of “the groups” that do not support this bill. Obviously it is dangerous to make assertions about the beliefs of an entire group, but understandably given our history the disability community might well be cautious about such a bill.
Wherever you stand on the issue, it is important to be informed. Compassion & Choices is the Denver based non-profit that supports education and advocacy around the country on this issue. They have a local group at work in Minnesota that can be contacted via Facebook at www.Facebook.com/CompassionandChoiceMinnesota and would be happy to come and talk to your group or provide further information. So, get educated, give it some thought, and then you decide. Ultimately, as is our democratic process, Minnesotans will make the choice to incorporate aid in dying or not.
Feel free to reach out to your legislator regarding this bill.
Sheryl Grassie / Executive Director MNCCD
Last weekend, on a cold and snowy Sunday afternoon in mid-January, I found myself once again driving around Northfield with my son Seth. We face the same dilemma every weekend, I go down and pick him up from his group home, and then we drive around wondering where can we go and what can we do? In nice weather of course there are parks, and nature walks, and picnics, and swimming. But in winter, we spend a lot of time just driving around doing nothing. For much of Seth’s life, no matter where he has lived (he is now 19 and in his 6th placement), I have struggled with how to get him out into the community. He can’t go into stores, or restaurants, or most public places. He is too challenged by the sensory stimulation and too inadvertently destructive; an unintentional bull in a china shop. If he were higher functioning we might tackle a ball game or a mall, but these things aren’t possible.
Evidently we are not alone in our frustration regarding nowhere to go, nowhere that is really suitable for, and welcoming of, people with sensory disabilities like autism. However, something has happened. Just two miles south of Northfield, in the sleepy little hamlet of Dundas, Minnesota, a visionary and philanthropic couple have created a destination; A Great Day Farm.
On their 13 acre homestead Greg and Patty Closser have developed “a recreational facility for persons with developmental disabilities.” This facility just opened and is free to the public! A perfect destination for an outing, the large indoor space houses games, swings, foosball; a place to run around, pet the dog, climb, jump, and play. There is a kitchen, large accessible bathrooms, and rocking chairs. There is something for everyone. In the warmer weather there will be outside space, a sensory garden and nature trails, long-term a goat pen and gardens; at some point soon a schedule of activities.
What does it feel like to have somewhere to go, somewhere we are welcome, and somewhere Seth can be himself? For those of you who don’t resonate with our struggle it may not seem like much, but I can assure you that for my family and many others, this is a dream come true.
If you need a user friendly destination for an outing for a loved one with a disability, consider driving to just south of Northfield to The Great Day Farm. It is my hope that this inspirational setting will be well utilized and even replicated in some form by others. In the quest to create better lives for people with disabilities, A Great Day Farm is a big step forward.
Dr. Sheryl Grassie / Executive Director MNCCD
Check it out at: https://www.facebook.com/AGreatDayFarmNorthfield/
The presents are wrapped and the cookies are made, but parents of children who have disabilities and complex conditions still have one more item on their holiday checklist. Before the big celebration, it’s important to communicate with friends and family members to educate them about your child’s health challenges.
Preparation is the key to keeping the holidays happy. It’s important to speak with your child about expectations and to give them strategies to respond to what might be challenging questions. Below, you’ll find some practical tips to help keep things merry.
Consider sending a letter to family and friends to tell them specifically what they might expect when interacting with your child. For example, if your child is unable to make eye contact or give hugs, your note could state that your child appreciates being loved but cannot tolerate certain physical contact. You can also provide suggestions for ways friends and family can interact with your child—quiet play, reading or singing.
Help relatives understand how your child is similar to other children, rather than focusing on differences. It’s also important to redirect pity. People might think they are being compassionate when they express sorrow for you and your child. Assure these relatives that acceptance and friendship is what is valued—not pity.
Plan to have a space for your child to unwind and decompress. It could be helpful for your child to know that it’s OK to take some private time if the holiday hubbub becomes too overwhelming.
Consider providing a list of specific and appropriate gifts your child would enjoy.
Be proactive if you’re traveling to someone else’s home to celebrate. It’s wise to tell your hosts about dietary needs, the medical equipment you may bring, and to ask for a quiet place for you and your child. You might also want to ask about parking plans and discuss your family’s specific needs.
Explain to your child that people may say insensitive comments, but that most often, these are not meant to be hurtful. Remember you don’t need to overshare and give too many details about your child’s condition. Talk about what feels comfortable. Your distant cousin does not need to hear private information about your family.
Finally, take care of yourself, relax, and enjoy the holiday season!
Erin Tentis-Berglund, PhD, LP, is a psychologist at Gillette Children’s Specialty Healthcare.