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
This speech is from Tuesday at the Capitol, co-hosted by Minnesota Consortium for Citizens with Disabilities at the Metropolitan Center for Independent Living
on Tuesday, April 4, 2017
Sheryl, thank you for your kind introduction. Please allow me the opportunity to thank members of the Minnesota Consortium for Citizens with Disabilities in allowing Metropolitan Center for Independent Living to be a co-host for the Tuesday at the Capitol event. All of us at Metropolitan Center for Independent Living are very happy to be a co-host for today. We have a wonderful agenda planned for today.
The Mission of Metropolitan Center for Independent Living, is; “To assist people with disabilities to fulfill their desire to lead productive and self-determined lives.” Our mission, in so many estimable ways, is a prism of light of that great shinning realization made by the founders of our democracy, from our Declaration of Independence, adopted by the Continental Congress on July 4th 1776.
And I quote: “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” Unquote.
These certain unalienable Rights, give rise to the self-determination of all people – which profoundly is at the heart of Metropolitan Center for Independent Living in our quest to assist people with disabilities to fulfill their desire to lead productive and self-determined lives.
These time honored immutable truths, these certain unalienable Rights, and this principle of self-determination, of independent living, are the essence of who we are as a Democracy, as Minnesotans, and as Americans. Our journey as a Nation has aspired, through much toil, adversity and yet discovery, that these truths belong to all, and for all. These truths have illuminated our constitution, to landmark laws such as the Americans with Disabilities Act, the Rehabilitation Reform Act, the Work Innovation and Opportunity Act and shed light for Civil Rights, Human Rights, Affirmative Action and the brightest of recognition that the most noble of civic values of who we are as a society is to advance the ability of people to care for one another. We are compelled, in our era, of our generation, to ask: What can we do on behalf of all, and for all in advancing a civil society?
Our journey as Minnesotans has led to new realizations such as the commitment we have to one another via Minnesota’s Olmstead Plan. We applaud the Vision Statement of the February 2017 edition of The Olmstead Plan on page 42, which all Minnesotans benefit from:
“We will provide services to people with disabilities in a way that helps them achieve their life goals. Services will be appropriate to individual needs, will reflect individual life choices, and will enable people with disabilities to conduct their activities in the most integrated setting – one that allows people with disabilities to interact with nondisabled persons to the fullest extent possible.”
In this light, we also acknowledge the citizenry for advancing public policy for the greater good and for the common good. Please allow me to ask Jeff Bangsberg to speak on an effort that addresses complex care for people with disabilities, please welcome Jeff Bangsberg! (Jeff’s legislation SF393/HF481)
Darrell Paulsen and Nikki Villavicencio have recognized that parents with disabilities are more likely to have their children removed from them, and for no reason at all, and they are working on public policies that help support families, please welcome Darrell and Nikki to speak on their work! Darrell & Nikki’s legislation SF846/HF898 & MACIL bill SF248/HF369]
Metropolitan Center of Independent Living is among eight Centers of Independent Living in Minnesota. Our Centers are what is known as a statutory non-profit organization in that in order for the Center to have been created in 1981, concerned citizens along with the State of Minnesota would have had to ask the Federal government for the creation of such a Center. Minnesota State Statute 268.A.11 provides for Centers of Independent Living to operate in Minnesota.
Yet there is more to how our centers operate. Let me explain. We have in Minnesota the Minnesota Statewide Independent Living Council also known as MNSILC. The Board of Trustees for MNSILC are appointed by Minnesota’s Governor. Both the Centers of Independent Living and the Statewide Independent Living Councils had originated from the Rehabilitation Act of 1973, but now both the Centers and Statewide Independent Living Council nation-wide are now under the rules and regulations of the 2014 Work Innovation and Opportunity Act. Together, MNSILC and the eight Centers of Independent Living in Minnesota bring an engaged framework to advance self-determination and independent living for people with disabilities throughout Minnesota.
Thank you for allowing us to spend time with you today as co-host of Tuesday at the Capitol. On behalf of the Board of Directors, employees, the consumers we assist and our volunteers, we thank you! Let me also thank you for your support and all you do in bringing illumination to all, and for all!
Jesse Bethke Gomez, MMA
Executive Director, Metropolitan Center for Independent Living