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.
The Minnesota Microgrant Partnership launched this fall making grants up to $1000, in some cases more, to Minnesotans with disabilities. At this time those who receive home and community-based services or are transition-age youth who have an active Level 3 or 4 individual education plan are eligible to apply for a microgrant. Funds are available to help people achieve their person-centered goals around competitive, integrated employment; accessible, inclusive housing; and community integration. The most successful applications will show how a microgrant will help the recipient achieve their goals. They will also include a detailed budget with information on vendors or service providers and item numbers or store SKUs when possible.
Microgrant recipients have landed new jobs wearing appropriate interview clothing or started jobs with new work clothes or uniforms. A couple of people who received microgrants have launched or grown their own businesses. One man who uses a motorized wheelchair can get around his community better and help others with disabilities now that his custom wheelchair trailers have been repaired. A visually-impaired grant recipient will have more independence and community integration when his voice GPS arrives.
How could $500 help you get your dream job? Or help your living situation become more integrated? Could a microgrant expand your participation in your community?
The fastest way to apply for a microgrant is online. Go directly to bit.ly/Apply4MMGP.
You can also find a link to the application at www.arcmn.org. On the Microgrant Partnership page click Apply for a Microgrant which will take you to the application. Because the application process may take up to 45 days, grants are not intended to provide assistance in emergency or crisis situations.
We expect to fund nearly 350 grant recipients before December 31, 2018. Recipients may receive funds once per calendar year. The Minnesota Microgrant Partnership is administered by The Arc Minnesota and funded by Minnesota Department of Human Services.
Call Susan at 651-804-8056 or email firstname.lastname@example.org if you have questions about this opportunity.
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Picture Caption: Rosemarie O. received a microgrant from the Minnesota Microgrant Parntership in October.
Fear of losing health insurance can be a major barrier for people with disabilities who want to work. Medical Assistance for Employed People with Disabilities (MA-EPD) is a work incentive to help people with disabilities work and still retain or gain access to the health care services they need, for a monthly premium they can afford. To be eligible, people must be earning more than $65 per month. Premiums are based on household size and gross monthly income. MA-EPD allows people to retain a higher level of income and assets than standard Medical Assistance. Higher income and more assets help people to live more independently. People who are receiving SSI or SSI 1619(b) are already on Medical Assistance and do not need MA-EPD.
MA-EPD has been a popular benefit in Minnesota since 1999. Over 7,000 Minnesotans a year use MA-EPD, but until legislative changes in 2012, it was not available to people over 65. CCD led the charge to change policy with stories of working Minnesotans with disabilities who had to stop working at age 65 due to no longer being eligible for MA-EPD and face poverty to preserve their health care benefits. Personal stories helped citizens and legislators understand the impact of this challenge to employed individuals with disabilities as they age.
The story of Charles Van Heuvein was picked up by the media and galvanized the public to advocate for legislative changes. Van Heuvein had worked for the St. Paul School District for 18 years. MA-EPD enabled him to keep more of his income and to live more independently. When he reached the age of 65 and was no longer eligible for MA-EPD, he faced a daunting choice. If he was forced into retirement to preserve health care coverage, he could lose the modest assets he had acquired to live more independently including his ability to afford his adapted condo. He might end up in a nursing home. If he continued working, his current income could make him ineligible for standard Medical Assistance and the health care services he needed. Van Heuvein’s situation and similar stories from other Minnesotans gave a human face to what legislative changes were needed. MA-EPD is now available to Minnesotans with disabilities beyond the age of 65.
Don’t let fears about losing heath care coverage prevent you from working. Find out more about your personal situation and how MA-EPD could benefit you. To learn more about MA-EPD, call the Work Incentives Connection at 1-800-976-6728, or go to www.disabilityhubmn.org .
Carol Rydell, Kaposia for the MNCCD Employment Work Group with assistance from the Minnesota Work Incentives Connection website and Anni Simons, Government Relations Specialist at Fredrikson & Byron, P.A.
Do you struggle with heartburn, constipation, bloating or diarrhea? Or perhaps you’re always tired, crave carbohydrates or battle brain fog? Or are you one of the millions living with the pain of arthritis or battling chronic sinus infections?
What all these health conditions have in common may surprise you – an unhealthy digestive system. An unhealthy gut is much more prevalent than you’d think – about 60 to 70 million people in America have less than optimal digestive health.1 As a registered dietitian, I’ve studied this topic, worked with many individuals to restore their gut health, and fully understand that a healthy digestive system is the key to keeping your entire body operating at its best.
How great does optimal health sound? You can find heartburn relief, have regular bowel movements, enjoy great energy and ditch your carb cravings for good! How? The first step to optimal health is looking at the lifestyle habits such as those listed here, and other factors that may be contributing to your intestinal problems.
Stop by my session at the Minnesota Consortium for Citizens with Disabilities Health and Wellness Conference to hear practical ways to heal your digestive system and get you on the road to your healthiest self!