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 email@example.com if you have questions about this opportunity.
here to edit.
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!
We get a lot of messages, both overt and covert, telling us that “self care” is only for able-bodied, emotionally healthy (but a little stressed) folks with money - who else can get bi-monthly massages and afford designer bath bombs?! What we’re seeing in these advertisements is actually the commodification of self care. Wherever advertisers can find a way to make money, they will do that. And by reaching out to people who want feel the way that these images look, it’s enticing.
The truth is that this isn’t authentic self care. For some, absolutely this is reasonable for them and helps them, but it isn’t the full story. For most of the population, self care looks quite different than getting a backrub and taking a bath. Self care has become a buzz term synonymous with “treat yo’ self” as a way to sell luxury goods. But for most people, self care looks more like “boring self care.” Did I feed my body energizing foods to the best of my ability today? Did I get as much sleep as my body needs to the best of my ability? Did I move my body mindfully in some way today to the best of my ability? Did I engage in a meaningful way with another person or activity that I enjoy to the best of my ability? What this looks like will differ from person to person and it must because we are all very different.
Inevitably the next question that someone will ask me when I bring up this topic is, “but isn’t taking care of myself selfish?” And while I tend not to answer questions in absolutes, I feel confident in saying - No. The word selfish denotes a lack of consideration for others. And nowhere in the questions that I posed above were we caring for ourselves to the exclusion of others. In reality, what self care asks us to do, is to show ourselves the same compassion that we already show other living beings. If you have a pet, consider for a moment all of your pet’s needs: food, water, walks (or cleaning litter boxes, cages, etc), pats and snuggles, plenty of sleep. And now ask yourself, do you provide all of that for your pet? And do you not deserve the same level of care? I believe that you do. What if you considered taking care of yourself as well as you care for your pet?
If you don’t have a pet, or if that example simply doesn’t resonate with you, allow me to bring up one more aspect of self care. The self is political. When we make the time and space to care for ourselves - in a society that does everything it can to keep us from doing so - we are engaging in an act of political resistance. In the immortal words of Audre Lorde: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”
Justine Mastin, MA, LMFT, LADC, E-RYT 200
Owner: Blue Box Counseling LLC, YogaQuest LLC
Last night I taught a lovely workshop on Healthy Relationships to a group of adults with disabilities. While brainstorming a list of Healthy and Unhealthy Behaviors in relationships, one young man yelled out “Sex is an unhealthy behavior!” The room got quiet and then a couple other adults said, “Yes, yes, sex is an unhealthy behavior.” I couldn’t believe it – but I knew this to be a common feeling among folks with disabilities. Many people with disabilities, and actually many people without disabilities, were taught growing up that “sex is bad”. At that moment, our conversation shifted to talk about that statement. We chatted about the word “pleasure” for a while – a new word for most participants. We talked about the importance of consenting to have sex in relationships. We also talked about the fact that sex is an adult activity, and they are adults. Hmm….I think the parents and staff in the room were holding their breath for these few minutes.
People with disabilities are sexually assaulted way more
often than people without disabilities. Let’s talk about these topics so that everyone knows what healthy and unhealthy behaviors are in a relationship. While presenting at the MN State Autism Conference last spring, a young woman with autism shared with me, “Thank you for teaching us this stuff. No one wants to talk to us about this it.”
Find out more about our work to support you in talking
about “this stuff” by visiting our webpage: www.sexualityforallabilities.com or contacting us at firstname.lastname@example.org. You’ll find resources to support self-advocates, support professionals and parents & caregivers.
Katie Thune will present at the MNCCD Health and Wellness Conference on October 3rd. www.mnccd.org/conference
Strengthening families and communities is the theme for National Recovery Month
Minnesotans asked to “Join the Voices for Recovery”
In order to mark National Recovery Month, Gov. Mark Dayton has proclaimed September 2017 Recovery Month in the state of Minnesota.
Recovery Month gives focus to the fact that, as the Governor’s proclamation says, “Every day, Minnesotans across the state recover from substance use disorder and mental illness and join the thousands of vital, active, and contributing members of our communities who live in long-term recovery.”
Now in its 28th year, this year’s theme for National Recovery Month is, “Join the Voices for Recovery: Strengthen Families and Communities.” The theme encourages everyone to support recovery for those with mental and/or substance use disorders and, when needed, to seek help ourselves.
“Recovery Month reminds us that people in recovery are our family, our neighbors, and, sometimes, us,” said DHS Commissioner Emily Piper. “We need to leave judgment and stigma behind and support each other, including people who are in recovery from mental illness and addiction.”
Mental health and/or substance use disorders affect people of all ethnicities, ages, genders, geographic regions and socioeconomic levels. Individuals need to know that help is available, and that people can and do get better. For people who are seeking treatment, free, confidential help is available 24 hours a day through a national help line, 1-800-662-HELP (4357) or 1-800-487-4889 (TDD).
In Minnesota, there were over 50,000 admittances to chemical dependency treatment in 2016. Most people who enter chemical dependency treatment usually complete it and show considerable improvement, and abstinence from substance use and other benefits of treatment tend to continue over the long term. Despite this fact, more than 9 out of 10 adults with a substance use disorder did not receive treatment in the past year. As a result, the 2018-19 state budget includes investments in quicker access to treatment and in a wider range of services outside of treatment programs.
Nationally, one in five adults have some mental illness. Treatment for people with mental illness is highly effective, with between 70 and 90 percent of individuals having a significant reduction of symptoms and improved quality of life. Yet, too many people are not getting the care they need. Meanwhile, over 100,000 children and youth in Minnesota need treatment for serious emotional disturbances. As a result, Minnesota is offering new and innovative services on the county level and investing in more in children’s mental health services.
“They key is to not wait to get help,” said Piper. “With the support of friends, families and the community, people can and do recover.”
Recovery Month will include a variety of ceremonies, activities, and celebrations across the state. For information on events in your community, visit https://minnesotarecovery.org/upcoming-events/category/events/.
The Governor Dayton’s proclamation of September as Recovery Month can be found at https://mn.gov/dhs/assets/recovery-month-proclamation_tcm1053-309499.pdf.