Many individuals with disabilities rely on government programs to help them with their medical needs. Often these programs have limits on what kinds of assets a program participant can own. This can make it challenging for family and friends to care for the disabled person.
One tool that is available is a special type of trust that can hold assets without affecting a person’s medical benefits. These trusts come in two types.
Special Needs Trust
A Special Needs Trust holds assets belonging to an individual who is enrolled in a public benefits program. By placing their assets in trust, the enrollee can sometimes prevent these assets from being counted by the government program. This allows them to use their assets to their benefit instead of losing them to pay for care.
Supplemental Needs Trust
A Supplemental Needs Trust also holds assets on behalf of a disabled individual. Supplemental Needs Trusts differ from Special Needs Trusts. A Supplemental Needs Trust holds assets that originally belong to a 3rd party (like a parent or relative) and allow those assets to be used for the disabled person’s benefit.
Pluto Legal, PLLC operates differently than most firms. Our office and staff are located in Tyler, Minnesota, while our attorneys currently live in Olivia and St. Louis Park. The attorneys at Pluto Legal will make house calls throughout Minnesota. So, rather than asking you to travel and bring all of your information to our office, we meet with you in the comfort and privacy of your own home or other convenient location.
We offer a no charge consultation to review your situation and base our recommendation on only what you need. We will never recommend services to you that are unnecessary.
We offer many workshops for community education and for Continuing Education Credits. Please contact Pluto Legal for more information Toll Free 1-866-457-3131, firstname.lastname@example.org 100 E. Hwy. 14, Tyler, MN 56178 or check out our website, www.plutolegal.com.
Health and wellbeing are dependent on many factors, including genetics, environment, and behavior. While some things are outside of our immediate control, other things – like learned behaviors – make a huge difference in how we feel. This cuts both ways, of course… less-skillful behaviors contribute to feelings of
dis-ease, while more-skillful behaviors contribute to feelings of wellbeing. Wellbeing is a feeling that signals alignment between our values, beliefs and behaviors. It is a feeling that communicates, “I am on the right track” and “Keep doing more of this because it is good for me.”
Compassionate communications is a tool to increase this critical alignment, along with feelings of wellbeing. When we identify and share feelings and needs, as well as listen to others through healthy conversations, we build trust, are able to form close relationships and feel valued and understood.
In the Compassionate Communication as Self-Care breakout session, we will expand our understanding of universal needs and experience the feelings associated with needs when they are met and unmet. We’ll talk about what is happening in our brains when we learn how to skillfully express our needs. Finally, we’ll have fun practicing this effective tool.
Compassionate communications is a wellbeing tool that can be learned and used by everyone, including caregivers and clients, parents and children, and nurses and patients. As we increase our skill, we increase our own health and the health of our organizations.
Ricka Robb Kohnstamm, ALIGN Whole Health Coaching, creates safe space for clients to untangle complex issues that contribute to feelings of dis-ease of mind, body or spirit. Through her soft, supportive approach, her clients find the courage within themselves to embrace a meaningful, always evolving life.
Ricka will be a Presenter at our October Health and Wellness Conference.
Life before the Americans with Disabilities Act (ADA) was not the good old days if you had a disability. I was injured in a farming accident when I was about two years old and grew up with a spinal cord injury. I couldn’t wait to move to the big city when I was a teenager, and I stayed with friends in Minneapolis at every opportunity. Life in the 70’s and 80’s was difficult if you were an active wheelchair user. Public transportation was not accessible, buildings entrances were generally not accessible, restrooms were not accessible and curb-cuts were few and far between. Life back then was so dramatically different from today that it’s difficult trying to compare the two worlds.
If you were a wheelchair user and wanted to take a public bus, you had two choices; either talk someone into pulling you up the steps of the bus while in your chair, or get out of your chair (if able) rump it up the steps and ask a total stranger to fold up your wheelchair and carry it up the steps of the bus.
Getting into and out of buildings was an ongoing fight where I and others with disabilities had to constantly ask for assistance. Sometimes people would simply stare and keep walking, other times people were more than happy to help. But the reality was, one had to ask for help on a daily basis just to negotiate the stores, businesses and government buildings in their community.
Accessible, functional restrooms did not exist. When I did find that rare restroom that I could get into – the wheelchair accessible stall was 36” wide and without enough wheelchair space in front of the toilet to close the stall door. So, if you have to live in an inaccessible world without accessible restrooms, you learn to adapt, be creative and do what needs to be done. Curb cuts pretty much didn’t exist outside of a few intersections in downtown Minneapolis, so I and others learned where the alley entrances were and tried to avoid getting hit by vehicles.
Life is different today, the country is far more accessible, and the ADA has had a very positive impact! Not that we don’t have much to do yet and miles to go – but we are making measurable progress.
As of late, there has been an increase in efforts to weaken the ADA. We must fight those efforts and unite as a community to reaffirm our rights! Please join us on July 26th for a Disability Rights March and Rally. We are meeting at the Minnesota History Center at 1:00 pm to march down John Ireland Blvd to the Capitol. Once at the Capitol we will have a rally in the Rotunda with speakers and entertainment. Come and join us as we celebrate the most important disability rights legislation in our Nation’s history!
Margot Imdieke Cross, Accessibility Specialist
Minnesota Council on Disability
Medicaid, which is Medical Assistance or MA in Minnesota, is a household term for many people with disabilities and their families. Nationally, over 10 Million people with disabilities utilize Medicaid to help them be independent and stay in the community.
Proposals at the Federal level would cut Medicaid by 25% in the first 10 years, and 33% within 20 years. There is simply no way to make this level of reduction without harming people with disabilities’ ability to live in the community.
Medicaid provides far beyond hospital care and doctor visits. Home and Community Based Services (HCBS) is actually optional under Medicaid for states. When steep reductions to Medicaid are made at the Federal level, states will be required to make tough decisions about rate reductions to services, changing eligibility, or limiting services that are provided. HCBS is one of the largest areas of spending in Medical Assistance, and due to the optional nature of it, will be very vulnerable when cuts are made.
In Minnesota, Senator Klobuchar and Senator Franken have been vocal opponents of reductions to Medicaid through the current proposals in Congress. There are some key states that you can reach out to where the Senators are on the fence. Please contact your networks and ask them to reach their U.S. Senators and tell them to vote NO and protect Medicaid.
You can find the tools you need, including the key states, what to say and the number to call at www.thisismedicaid.org. Follow @ThisIsMedicaid on twitter and ‘This Is Medicaid’ on Facebook to easily access resources and connect to others who want to protect Medicaid.
Watch this video and share it with your networks:
By: Susie Emmert Schatz, MSW LGSW
Sr. Director of Advocacy, Lutheran Social Service of Minnesota
MNCCD Board Member
Every parent reacts differently when a child is born with, or develops, a complex medical condition. Common reactions and emotions might include disbelief, shock, confusion, denial or worry—and all of these emotions can change based upon the given day or situation. It’s important for parents to know that however you’re feeling, it’s OK. Many parents find that feelings of distress often fade in time, giving way to acceptance, validation, relief and a sense of belonging.
Whatever your family’s circumstance, one thing’s for certain: You and your child are not alone. Connecting with other families can offer comfort, hope and the chance to share your questions. Support networks can be invaluable forums to seek out answers and, if needed, obtain further understanding of your child’s condition.
Ultimately, it’s important—for you and your child—to stay connected. Surround yourself and your child with supportive family, friends and professionals. Talk with loved ones and other parents. Listen, learn and share. We all benefit when we have supportive relationships with one another.
Richard DiPrima, PsyD, LP, is a neuropsychologist at Gillette Children’s Specialty Healthcare.
The Minnesota State Legislature finally adjourned in the wee hours of Friday, May 26th. They may or may not return to re-work some bills, but more about that in a bit.
Long-time Capitol hands say that "no two sessions are the same." This session was certainly the case, and may be the oddest I have ever witnessed. In the closing days of the regular legislative session, which was due to adjourn at midnight on Monday, May 22nd, a budget deal between Governor Dayton and legislative leaders did not seem close at hand. Most Capitol observers anticipated no budget and the need for a special session.
But just 30 minutes before midnight, on the May 22nd deadline, the Governor and legislative leaders emerged from his office announcing they had struck a deal. All the caucus leaders and the Governor signed a one page agreement on the budget, tax, and bonding bills. The Governor called a special session for 12:01AM Tuesday May 23rd so legislators could iron out some of the remaining bills like HHS. They just kept on going and most people at the Capitol thought they would be done by late Tuesday night or early Wednesday morning. But they were not…
It took three and a half more days for the nine budget bills, as well as the tax and bonding bills, to be re-written, introduced and voted on. Only the tax bill got a public hearing. Some spending bills were publicly posted and then voted on within hours. There were substantial changes to many bills, with previously included pieces of legislation like the Complex PCA dropped at the last minute. Legislators, staff, and lobbyists staggered out of the Capitol just before sunrise on Friday to get home in time to sleep through most of the Memorial Day weekend (I know I did).
By the Tuesday after Memorial Day, Gov. Dayton had signed all nine budget bills. He gave legislative leadership a letter saying that he'd done so to "forestall a bitter June showdown" over a government shutdown. The Governor complained about several provisions in the bills that he was strongly opposed to, and hadn't agreed to, in their last minute budget agreement.
Moreover, the majority leadership slipped a "poison pill" into the state government finance bill that would have zeroed-out funding for the Revenue Department if the tax bill was vetoed. Dayton reluctantly signed the tax bill and was so angry about the legislative trickery that he line-item vetoed funding for the House and Senate for FY2018 and FY 2019, meaning no salaries for legislators or assistants. Wow. I have not seen these two end of session maneuvers before.
The Governor hoped that by de-funding the Legislature in would force the re-negotiation of the items that he was so opposed to signing. At this point the legislature does not appear willing to re-negotiate any of the bills and seems set on a showdown in the courts. One citizen group has filed with the court, saying that Dayton's line-item veto was an unconstitutional violation of the separation of powers.
The Legislature has hired outside counsel, and it is assumed, will file a complaint making the same unconstitutional argument. The Speaker of the House, Kurt Daudt, and many others, have said that Gov. Dayton's veto is clearly unconstitutional. However, reading the state constitution, the language clearly gives governors the power to line-item veto spending appropriations. There are no qualifications or exceptions. Another constitutional provision states that the branches of government have separate powers; specifically that one branch of government cannot do the other branch's job. For example, the Legislature cannot try people for a crime, or adjudicate a contract dispute between two citizens.
There are no previous cases to guide the court. The court could site the judicial doctrine of "political question" and decline to take the case, essentially telling the Governor and the Legislature, "you created this mess, you clean it up."
Now that we're rested up, we'll keep watching for court filings. This may not be done yet. Stay tuned.
Bill Amberg, CCD Contract Lobbyist
Join the Conversation
The Metropolitan Council is proposing to potentially raise all transit fares for publically supported transportation later this year. Now is the time for us - the disability community - to tell the Metropolitan Council what we think of the proposal.
Here’s what we need to know:
Metro Mobility and regular route transit service are critical to support independence for people with disabilities, many of whom who have limited incomes. Demand for this service has grown significantly in recent years, and the growth projections anticipate the demand will continue to grow between 5% and 8% a year, particularly as the population ages.
What can we do? Provide our thoughts and comments in a variety of ways
The Metropolitan Council needs to hear from us in the disability community! What do you think of a possible fare increase? Let them know using the following methods:
For more information on these proposed changes go to: https://metrocouncil.org/News-Events/Transportation/News-Articles/Comment-now-on-proposal-to-raise-metro-area-transi.aspx
From a distance, The QuangNam Center for the Homeless and the Disabled, in Hoi An, Vietnam, looks like it could be an inviting Spanish Villa. As I walked by on my way to the marketplace one morning, I peered through the gates and saw a young man walking towards me. I’d been asking myself a question since arriving in Vietnam; “Is there any autism is this part of the world?” and standing in front of me, smiling through the gate, was the answer to that question.
After smiling back and then walking on towards the marketplace, I couldn’t get the young man out of my head. I thought about him, and others, in this less than fully developed country, “How are the disabled integrated into Vietnamese culture, how do they live?” I resolved to return the next day and find out more.
Early the following morning I walked back over to the Center with no real plan in mind. Overnight I had researched and read some basic articles about autism and disability in Vietnam. The facts were swirling in my head as I walked.
“Vietnam has one of the largest disability populations in the world.… Babies born with physical deformities due to Agent Orange.… Over 4.5 million people exposed.… A 50 times higher incidence of autism from 2000 to 2007, a 116 fold increase in Saigon.… People with disabilities referred to as invalids.… People with disabilities not well accepted…Often hidden by family members.… Reports of torture and abuse.... No disability parking or wheelchair accessibility. No wheelchairs.” All I could think was how unsophisticated it was in Vietnam; it left me apprehensive about what I would find inside The Quangnam Center.
Surprisingly the Center’s gate was wide open and numerous residents were milling around in the courtyard.
I walked in and asked to see someone in charge and hopefully someone who spoke English. I was able to locate the head nurse, a young woman with reasonably good language skills, and after asking, was granted permission for a tour and to take pictures. She led the way and I got the impression she was very proud of the facility. I tried from the beginning not to judge things based on American standards.
The Center was laid out on two floors. The first floor had meetings rooms, a kitchen, and offices, all in various states of decline. It also housed the “non-ambulatory” wing, several large rooms with numerous beds like a hospital nursery. There were no mattresses on the beds, just wooden boards and bamboo mats. I saw no wheel chairs and residents appeared to be carried when needed, some of the semi-ambulatory residents had walkers. Oral hygiene was lacking with lots of rotting smiles and everyone was quite thin, but being thin, like sleeping on bamboo mats, was common in Vietnam.
On the walk upstairs (no elevator) I learned additional details about the center. It served adults ages 16 and older, with close to 100 residents throughout the year. The Center is government funded, with a staff of nurses and care attendants. It is greatly in need of everything, and especially medical equipment, from thermometers to wheelchairs. Most of the residents don’t work, their disabilities are much too severe, but they do have recreational activities.
A tour of the second floor revealed a number of large bedrooms with four or five beds in each room. Each resident had a bed frame with a bamboo mat and a dresser. I saw no televisions, computers or much in the way of personal belongings, everything was relatively primitive and in disrepair. There was visible corrosion of the plaster, and mold on the walls. By American standards the place was dirty and deteriorated.
The windows were barred and the doors had locks on the outside to keep residents in at night. Bedpans were scattered under beds.
In spite of everything, the place had an uncanny buoyancy about it. The residents were all smiling, and incredibly warm and friendly. I made a comment to the nurse about how happy everyone seemed, and she replied, “Because they loved!” as though it was a given. Her response caught me off guard and my throat tightened, my eyes teared up. What I had mistaken for her pride in the institution was actually love and caring for the residents. It was evident in the way she spoke and how patient and kind she was with them.
We traveled back downstairs and through the courtyard. I had a very warm feeling as I concluded my tour and visited with several of the residents, but also a desire to help. Their lives could be made so much better by wheelchairs and adaptive equipment. It pained me to see the lack.
In reflecting back, I thought about two primary things. First, that I am so grateful to live in Minnesota, where people with disabilities have rights, have funding, have equipment and transportation, and safe clean places to live. I have also thought, that in spite of the lack of these things, the residents at the QuangNam Center do have a level of caring that can’t be replaced by equipment or cleanliness, a level of caring that meets a very intrinsic human need for love and respect. Still, I wish for those residents that they could have both the caring and the equipment, and I look forward to seeing the progress Vietnam is able to make over time.
The QuangNam Center for the Homeless and the Disabled does accept private donations, to help go to: https://sites.google.com/site/hoianhomelesscenter/english
Dr. Sheryl Grassie
Executive Director, Minnesota Consortium for Citizens with Disabilities
I’m thinking, “Today was a typical day” as I stand looking over my 8-year-old drifting to sleep in his bed. It’s a hospital bed with a large zippered white mesh canopy that keeps him secured at night. Every evening we engage in a leisurely bath and stories, always the same three books, a kiss goodnight, prayers, and the final zipping in and locking of the bed. At this point his medication is usually taking effect and he is starting to dose, surrendering easily to his bedtime routine. With autism, we work hard to have every day be as typical as possible. Routines are tight and inflexible. Everything from food to the timing of movements is calculated to be the same, day after day. Without this structure the results can be disastrous, the pain for him intense.
I leave the room and go downstairs. I hear some moving around and wonder if he has woken. If I go back up to check and he sees me, he could be up for hours, screaming. If I ignore his moving around he will likely fall back to sleep, but there are other risks to not checking on him. I’m tired and err on the “leave it be” side. I move to my office and sit down at the computer to check e-mails and write. I listen periodically for noise, turn up the baby monitor and settle in to work.
I write for an hour or so, and then decide I had better check on him. Ascending the stairs, I pause halfway up and the smell hits me. Putrid and pervasive, I can guess what waits. I turn on the light and enter his room. He is naked; wound in his covers with feces smeared from head to toe. He is completely unconscious, the medication doing its job. The excrement looks like mud and he looks like a little Indian covered in war paint.
There are times when I encounter this scene and it pushes me to the edge. Even though I know this love of smearing is part of his sensory abnormality, expected in ways and the consequence of having left him unchecked for that hour of writing. I try to find avenues in my mind to reframe the experience, to make it okay, to let my love for him pervade, to maintain my balance and not go over the edge. But, there are nights when I am tired and coping is nearly impossible. None of this was part of the life I envisioned for “when I grew up.” I did not see myself as a single mother of three caring 24 / 7 for a child with a severe disability.
I leave him for a moment and go to run the bath. I return, unzip the canopy and wrap him in the sheets. He stays motionless, a large limp chocolate-covered rag doll. I carry him down the hall, unwrap him and lay him in the bath holding his head above the water. He will need to soak; the excrement is dry and caked, chunks in his hair and up his nose. If I am not careful to get every speck, they will send him home from school tomorrow; sometimes the lingering odor will incite the school nurse enough to request his removal, so I scrub. He groans and opens his eyes, rolls to his side, thinks he is sleeping. I tell him how much I love him.
The tears come, rolling over this dichotomy of pleasure and pain. So much love for this child and so little ability to understand the purpose of his life, or mine with him. My teenage daughter uttered her disgust as we passed in the hall. She closes her door, can’t deal. Should she have to? This is an odd life we live in service to his disability, his sensory needs, his autism. Autism literally reigns in our home, creating everything from our meals to our memories.
The scrubbing is now complete, so I rinse and rinse. The smell lingers and I know from experience that no amount of soap and water will eradicate it completely, only time.
I wrap him in a towel and carry him back down the hall to his room, snuggling him in a blanket and placing him on the “map of the world” rug on his floor. He sleeps. I then gather the soiled bedding and pajamas, and deposit then in the laundry chute. I get out the disinfectant and wipe down the plastic covering on the bed and canopy. I gather fresh linens and remake the bed, placing him in it and tucking him in for the night. Zipping the canopy and locking it closed, my task is almost complete. I go back to the bathroom and dispose of the remaining soiled bedding. I wash out and disinfect the tub and floor, change my clothes and call it a night.
I always feel at loose ends after the intensity of this clean up, as though I don’t remember what I might have done otherwise or what to do next. I wonder how long I will be able to do it at all. He is 60 lbs now and getting hard to carry. What will I do when he is a teenager? How will I lift him, how will I restrain him when he’s out of control? More tears. I know better than to project into the future.
I walk back down the hall and into his room. I stand looking over my 8-year-old sleeping contentedly in his bed. I think, “Today was a typical day, a good day.” I was able to maintain the routines, keep the transitions minimal, and thus his pain low. I leave the room carrying with me the endless sense of déjà vu that permeates my life. I have been here before. I will be here again.
Imagine with early intervention services like the EIDBI legislation how different things might be.
Dr. Sheryl Grassie
Executive Director, Minnesota Consortium for Citizens with Disabilities
The incidence of autism has increased dramatically in recent years. The CDC now estimates that 1 in 68 children have autism. There are approximately 17,000 children in Minnesota with autism.
While the autism community has not always been united about how to approach this challenge, it is generally accepted that early diagnosis and intervention is effective in improving functioning and should be available to all affected children.
In 2013 the legislature passed the governor’s autism bill which expanded access to Medical Assistance payments for autism treatment. Unfortunately, due to a number of factors, the implementation stalled, and providers were not able to take advantage of the funding. Last year, a representative group of providers, advocates, and DHS staff worked together to make improvements that would allow for the accessing of the benefit. What emerged was a consensus bill that all supported.
A key feature of this consensus bill is giving the commissioner of DHS the authority to waive certain requirements based on the workforce shortage so that providers can actually access the benefit.
This legislative session HF 919 and SF562 were drafted to implement the Early Intensive Developmental and Behavioral Intervention (EIDBI). After passing through senate and house committees the bill is now on the floor of each body. Advocates are optimistic that it will pass and the governor will sign into law. However, as with all things with the legislature, nothing is certain. We remain hopeful.
Another bill that impacts families with children with autism, as well as other disabilities, would lower the TEFRA fees and provide financial relief for parents who have to use this mechanism to help fund treatment. Parents and advocates have lobbied hard with compelling stories for this relief. As of this writing the effort is still alive in both houses, but, as stated, nothing can be taken for granted.
From my perspective we have made great progress in building a coalition in the autism community. While I doubt there will ever be complete consensus, there is significant agreement among everyone that we can and must do a better job of helping families access the treatments and supports their children deserve.
Chairperson, Autism Recovery Foundation
Chairperson, Minnesota Consortium for Citizens with Disabilities