#SaveArnaldo : How Much Is Lifelong CPTSD Worth?

Image of Arnaldo Rios Soto, a nonspeaking
Latinx autistic young man in a gray hoodie
with crew-cut brown hair and a clean-shaven face
smiling broadly for the camera. Credit
Matthew Dietz, Esq.

If your child's school staff,  then his residential care home staff,  harm your autistic child and one terrible day, you get a call that the behavioral aide your child finally connects with has been shot and your grown child, having survived so much, was shot at while sitting in the street holding his toy truck, handcuffed, interrogated, institutionalized, and now has permanent complex PTSD caused by the mishandling of a catastrophic encounter with law enforcement, can you think of a price tag that with make it all go away?

That final traumatic event, the moment Arnaldo Ríos Soto screams out in his frequent nightmares in the single word utterance "POLICE", cannot be fixed or undone. Any parent of an autistic young adult would hold those responsible to account for the lifelong care he needs. The state of Florida is accountable for Arnaldo's lifelong, 24/7 care and support. This should not even be in question.

So why then was the cost for his lifelong care cut? Lifelong damage was done. Irreparable damage. The kind of trauma Arnaldo experienced cannot be undone. Put simply it is the obligation of those who caused this trauma to care for him. 

Arnaldo was evicted from his home because the state cut the funding needed for his care in half. He was evicted after a contract was signed saying his care facility would continue his care despite the funding shortfall. His former care home should lose their license.

I have been steadily updating on Arnaldo's situation because but for the grace of God Arnaldo could be my son.

I wrote an essay on the eve of Arnaldo's eviction that was published in Poor Magazine, but still, no one seemed to give a damn. So I'm reposting it here. Let's hope someone out there listens this time.

Arnaldo Rios Soto, Autistic, nonspeaking, and Latinx, was evicted from his current group home.  

His ongoing crisis brought back a personal memory. 

When I was in my teens, I worked summers as part of the Youth Conservation Corps. One of our projects was assisting efforts to reclaim the Palso strip mine. A group of us were standing with our supervising forest ranger on the top of a mountain of slag looking at miles of blasted fields and ponds filled with acid runoff when suddenly the rubble beneath us shifted and three of us tumbled downward with the landslide. The other two managed to stop and scurry back up. But each time I moved, the mountain seemed to respond by raining more debris around and over me. It was an avalanche. I was sure I was going to die that day.

If we were to create a timeline of each pivotal event in Arnaldo Rios Soto’s life, I believe those traumatic moments would morph into a rubble mountain of suffering and trauma. Arnaldo has now seen the ground shift beneath him one too many times. An avalanche is happening, and Arnaldo, like me the day I hung suspended on a slag mountain, is scraped, bruised, too young to die. The detritus of a failed disability care system falling like rubble all around him, he has now been evicted from another group home on the excuse that money was cut from his care budget.

Arnaldo’s life is measured by how much profit he makes for those who offer services to house and care for him. His family’s lives have been punctuated by seeking the land of autism care Oz, that place where Arnaldo won’t be beaten, chemically lobotomized, where someone, anyone, can truly see him as a human being and not a collection of behavioral reports, untreated complex PTSD and medications. They are tired, burnt out with disappointment in that shattered dream of an American mainland utopian disability care system they sacrificed and journeyed from Puerto Rico for in vain.

What will happen to Arnaldo now?

What happens to Arnaldo now is up to all of us. We are his family now. He is in our care. So we need to understand how and why Arnaldo matters. Arnaldo’s situation is greater than his news headlines. His situation right now is bigger than my personal emotional reaction, informed by the fact that he once looked so much like our son that both my husband and I cried out in shock when we saw that video of him sitting in the middle of the street, holding his toy truck, police shouting and Charles Kinsey shot and bleeding beside him.

 It is greater now than Arnaldo not understanding that he was about to tumble down that cruel mountain of police interrogation for the crime of sitting in the street holding a toy truck while disabled and brown. Arnaldo is now the symbol of what it means to be a nonspeaking autistic male of color at the mercy of a system that views the Black and Brown disabled body as a threat. This system, founded on eugenic attitudes, views those with complex support needs as burdens or cash cows. When the profit margin is not enough the cash cow is sent to the slaughterhouse. For someone like Arnaldo, who was harmed by agents of the state, leaving him without shelter and the complex support he needs is tantamount to destroying his psyche entirely. And returning him to a hellhole institutional setting like Carlton Arms is unthinkable and unacceptable.

What that means is that what happens to Arnaldo now has the potential to impact how future cases like his are handled across our country. If we can act together and change his destiny it will demonstrate that our community has the power to transform the destinies of others brought low by this system. It means that the lifetime efforts of hundreds of disability justice activists have managed to change something. We need this hope because we multiply marginalized people have become the targets of hate groups instigated by those who feel that the current administration has given them a free license to hunt those who are oppressed and vulnerable. So what I am doing right now, typing, wheezing with asthma, pushing past joints that ache to write this is reaching out to say this is the time when all of us, ALL OF US can help Arnaldo. #SaveArnaldo can trend on every social media platform enough to make those who made the decision to cut funding for Arnaldo’s care rethink their decision. Organizations can support the AutisticSelf Advocacy Network’s leadership and issue statements in support of the Sotos family. Legislative advocates can reach out to their lawmakers. This takes a few moments, a click, a retweet. But multiplied exponentially, collective cross-disability community action could be an avalanche that forces a positive resolution to Arnaldo’s crisis.

As I was sliding down a mountain of slag towards my death, two other people volunteered to lay flat, one grabbing the ankles of the other, and acted as a human rope. Five others held on to the arms of the person laying flat on the top of that mountain for dear life. Then they all heaved up and backward.

Together, they saved my life.

I am asking you all to make a human and virtual chain. Get him off that sliding bureaucratic slag mountain and back into a place where his family can see him every day and he can be safe and cared for. #SaveArnaldo.

Peace.

Poor Magazine Lays out My position on catastrophic encounters with Law Enforcement:

https://poormagazine.org/node/5510

Read and hear more about Arnaldo:

Miami Herald coverage of Arnaldo's eviction CN: for Ableism

https://www.miamiherald.com/news/local/article236523038.html

Aftereffect: Against the Erasure of Arnaldo Rios Soto

http://theautismwars.blogspot.com/2019/02/affereffect-against-erasure-of-arnaldo.html

Aftereffect: A SWAT team, an autistic man, an American tragedy.

https://www.wnycstudios.org/podcasts/aftereffect

Podcast: Aftereffect — an indictment of America’s disability care

https://www.ft.com/content/b2187ace-8685-11e8-9199-c2a4754b5a0e?segmentid=acee4131-99c2-09d3-a635-873e61754ec6

On catastrophic encounters between disabled youth and men of color with law enforcement specific to Arnaldo’s case:

http://theautismwars.blogspot.com/2016/08/mustafas-dilemma.html

Hobson's Choice, Nonverbal Autism, Technology, And The Myth Of No Future

A Hobson's choice is a free choice in which only one thing is offered. Because a person may refuse to accept what is offered, the two options are taking it or taking nothing. In other words, one may "take it or leave it." Wikipedia

Mu in a plum colored t-shirt, at age six on climbing bars at  the playground ©Kerima Çevik

There is a rhetorical question that representatives of institutions and service providers continually ask parents of autistic people. My husband and I first heard it at an IEP meeting when our son was four. It is a two-part question. 1. What kind of a future do you see for your son? 2. What will you do with him when he's 21?

This line of inquiry is meant to build up faux hope as we parents are supposed to be mourning for our autistic offspring as Edgar Allan Poe mourned for his lost Lenore. Then they lay out their Hobson's choices. "Does your son like trucks?" They asked, not really caring. "He likes watching construction vehicles in action," I answered, wondering where this was going. "Well, maybe we can train him to be a garbage collector." At another meeting, I answered the rhetorical question with, "He loves to sky watch by looking from his picture window on days of inclement weather." Their response was "then he'd make a great janitor." His father and I stared at one another in shock, wondering what one thing had to do with another. At one point I tried to discuss his strengths. "He likes lining up particular things. When he was a baby I used to give him plastic juice bottles filled with water dyed in rainbow colors and he'd line them up to look exactly like sunlight refracted through a prism. It amazed us." Their answer? "Oh, he's a trainable [insert r-word] that's great." "He can be taught to collect shopping carts and maybe even stock shelves."

 Because he's a nonspeaking autistic. Nonspeaking, to them, always equaled nonthinking. They don't actually listen to what you are saying. They don't actually see your children's worth when observing them. Their one-two punches, the rhetorical questions followed by their Hobson's choices are part of a myth that nonspeaking autistic people have no future. Their personal bias morphs into the professional opinion that they can't conceive of living without verbal speech, or navigating life with a combination of no verbal speech and intellectual disability so it is not possible.

Very recently I was asked the "what do you see your son doing in five years" derivative rhetorical question. I had to bite my tongue. I wanted to answer "I see my son continuingly chemically altering his RNA to adapt to changes in his environment, the way cephalopods do." Or "I see my son as the first nonspeaking President of the United States." I really considered just giving one of those two answers and watching that interviewer's face as they tried to process what I had just answered.

I'm tired of the entire "your son has no future so here are your Hobson's choices that you need to pay for" circular rhetorical question thing. To counter it,  I thought I'd discuss my real view of the possibilities for a community based, minimally invasive, autonomous life for my son after he grows up and as he ages in a series of posts beginning with this one.

Mu at age 5 signs what he wants to drink and what groceries he wants to buy
while his sister puts them in the cart. He keeps himself on
her arm to keep himself oriented © Kerima Çevik

From our parental perspective, we see that since our son's diagnosis, technology has directly and repeatedly improved the quality of his life and therefore our lives as well. This means future planning choices being presented as his only options right now won't be valid when he's 21 and therefore should keep changing even as I type this article. What bothers me is that the historical structures built to advocate for autistic stakeholders are heartbreakingly slow to keep pace with the technology that changes how we are all living.  That means those offering choices in future planning for nonspeaking autistics fail at the job of providing modern solutions in assistive technology, accommodations, and supports meant to truly include nonspeaking autistic people in communities of the future. Structural ableism and a hierarchy of disability bias against nonspeaking autistic clients are firmly sitting in the way of achievable solutions.

Particularly in autism services, solutions that allow nonspeaking autistic children and adults to leap forward don't come from established channels, they come from completely new directions. Before the iPhone and Proloquo2go AAC, a Dynavox or similar AAC device was not affordable for nonspeaking autistics of color without a source of funding such as Medicaid. Most schools, therefore, rejected the urgent need for students like my son to be taught to use AAC devices and generally offered only minimal speech supports, despite the clear fact that ability to communicate is the primary challenge of a nonspeaking autistic pupil. Apple's mass production of iPods and iPads began the first steps to communication rights for nonspeaking autistics in particular. That is a transformative change in one major aspect of autistic assistive tech that no one in the service provision or professional service industries saw coming.

Education pathways for nonspeaking autistic students are stagnant because school administrations don't accept that nonspeaking autistic students have learning potential. We have the technology and the infrastructure, as shown by Khan Academy, Open Courseware and things like audio book services, as well as other free or low-cost quality online education models, to offer nonspeaking students lifelong learning possibilities to challenge and stimulate their minds wherever they live if they are given online access and the effort is made to adapt the learning to provide accessibility. This education enrichment, with goals to prep for everything from a literacy certificate to GED certificates, and even certifications in things that interest them in post-secondary education, are never offered as goals for nonspeaking autistics trapped in an education system that does not allow them to graduate at 21 with a high school diploma. No option to keep learning exists in the Hobson's choice of future planning.

Financial pathways do not plan for future banking technologies or how our offspring can be prepared to manage funds. It is simply assumed that we have no choice but to put our children's financial future  in trust, in the hands of attorneys and hope those attorneys don't turn out to be like disbarred lawyer Julie Kronhaus, who embezzled $1.5 million dollars from multiple clients' trust funds, including a disabled young woman whose family had won a settlement and put the money in trust for her care. Trusts are the only choices given us. We are simply supposed to accept that this is the only solution available to transitioning nonspeaking autistic adults. Yet we are nearing the end of the age of paper money, and as financial institutions rush to get the technology necessary to produce legal tender similar to Bitcoin, and Amazon is changing the way we shop such that a cash register is no longer necessary and food deserts can be overcome with an internet connection, disability service organizations and service providers continue forcibly pushing future financial solutions that increase risk of theft or fraud.

Community housing pathways always seem to default to group home placement after the passing of parent care providers and this means that autistic adults who may have never been in a group home situation in their lives are suddenly removed from their own homes and placed in institutional settings when technology makes such an action expensive and completely unnecessary.  No one considered changing laws so that estates inherited by nonspeaking autistic adult offspring can be future planned and adjusted for direct to service in-home care that is minimally invasive and keeps the disabled adult seamlessly in the family home that they know how to navigate and are accustomed to. No one has considered developing smart home technology to assist in keeping orphaned autistic adults in their homes for the remainder of their lives. No one thinks of high-tech micro-housing as a safe and affordable community living option for nonspeaking autistic adults. That would take work, foresight, caring about their clients. Unfortunately, independent parent driven community living models are basically private institutions, complete with prison guard-like security staff and the traditional highly invasive staffing for care, like this example from North Texas.

I do not support traditional group home or full on institutional housing models being independently built by an increasing number of affluent groups of parents. I am saying we autism parents are acting against the basic principles inherent in the Olmstead Decision with these horrific housing options when what we should be working on are options like minimally invasive, community integrated solutions for our grown children. Just because we are building it doesn't mean it is any different from any other mental institution, even if parents with the best intentions create it.

We need to rethink future planning for our transitioning autistic people. We need to start thinking about what senior care looks like for aging autistic people who have the human right to continue to live in the communities they've spent their lives in after those who were their lifetime care providers pass away. And I'm sorry, that is not throwing them in custom built groups homes or private mental institutions with guards and staff.

 In 2010, the first MedCottage, a smart home for senior care as an alternative to nursing homes, was rolled out and marketed.

These pods are far from perfect, but they demonstrate that when we are considering solutions for transitioning autistic offspring or aging autistic siblings who might require intensive supports, we need to push boundaries beyond the Hobson's choices offered us and fight for Olmstead decision compliant adaptive housing options like these pods that keep our loved ones in our families and in our communities as is their human right. We need to leverage existing technology and develop assistive technology solutions that expand future planning options for autistic people. This begins with expanding our thinking about what our autistic loved ones can do, how they can live included in society rather than isolated, guarded, and invasively managed distantly from it. Begin with pushing back against the tide of gaslighting professionals and service providers forcing Hobson's choices of no-future so institutionalize myth on us.

Here is where I see my son in the future:
My son, like any young adult, will be able to own a car, because driverless cars will be in mass production and one will be adapted to his needs, to take him directly to and from his daytime appointments to home based on his schedule. Emergency locations will be there for him to choose from a touchscreen device should he feel unwell when entering the vehicle. 
My son will have a job in something he's interested in, even pushing shopping carts, not because someone decided that is all he's good enough to do, but because he is motivated, interested, and has the will to do that work.
My son will be housed in a minimally invasive, smart living space that he will be able to live in and manage as autonomously as possible. The bathroom will be self-cleaning. The floors will be cushioned to prevent broken bones in case of a fall, and they will be maintained by cleaning bots. He will be able to prepare prepackaged healthy meals in a microwave that will sense what kind of food is in it and cook said food without the need for pushing additional settings. The microwave will not open until the hot food cannot burn him. He will also have a smart refrigerator that knows when groceries are needed. A plan will be in place to ensure at home supports are provided as he transitions so that in the event that one or both of us, his parents, pass away, he will be able to remain in that home without interruption and he will already have what support staff is needed in place to care for him. He will not need to have cash around nor will any staff have access to payment systems or funding. Grocery, household goods, clothing, will be sent as they are needed through buying habit bots determining when such things are in need of replacement and will be paid for without money changing hands. The house will be powered off the grid and therefore bills will not be an issue. A non-gasoline backup generator will come online in the event of an emergency. The pod will be able to withstand high winds and be equipped with a sprinkler system in case of fire. Outside meals will be purchased from an interactive touchscreen device not requiring verbal input and paid for prior to leaving so food can be either eaten at the location, picked up and brought home, or delivered without money changing hands. Purchases for entertainment venues and social events will be handled the same way. 
Each day he will be able to log on to an education program and retain knowledge as well as be challenged with new learning goals and coursework. This will continue at his pace for the rest of his life. 

No disabled person should live in poverty simply because they have transitioned to adulthood.

This is the future for all disabled adults as it is meant to be.
Make that future happen, don't fight for less.

Resources
=================
On the Right to Community Integration for People with Disabilities 
https://dredf.org/news/publications/disability-rights-law-and-policy/the-right-to-community-integration-for-people-with-disabilities-under-united-states-and-international-law/

The Embezzling Trust Fund Attorney Who Raided a Disabled Young Woman'sTrust Fund
http://www.orlandosentinel.com/news/breaking-news/os-julie-kronhaus-attorney-embezzle-kids-20160129-story.html

Parent built isolated, guarded, institutional mass housing project for high support need autistic adults with medical staff onsite 
https://www.dallasnews.com/business/business/2017/01/04/build-future-son-dallas-couple-plans-12-million-community-young-adults-autism

Google's Driverless Car Test Drive
Self-Driving Car Test: Steve Mahan
https://youtu.be/cdgQpa1pUUE
A First Drive
https://youtu.be/CqSDWoAhvLU

About MedCottages 
In the News
https://youtu.be/5RnY5CSwO9E
Website
https://smallhousebliss.com/2015/11/28/n2care-medcottage/
MedCottage Classic Plans on Sale for $29
https://store9854291.ecwid.com/

Ford's Driverless Cars
http://www.slate.com/blogs/future_tense/2016/08/16/ford_says_it_will_mass_produce_a_driverless_car_by_2021.html

The First Smart Refrigerator
http://www.samsung.com/us/home-appliances/refrigerators/?cid=ppc-

7-year-old Autistic Boy Found Dead in Creek - WAFB Channel 9, Baton Rouge, LA |

7-year-old boy with autism found dead in creek - WAFB Channel 9, Baton Rouge, LA Today my heart broke for a family I’ll probably never meet, over a child who could have been my son. I learned that, John Burton Jr., age 7, autistic, drowned in a creek near his new home. He was not familiar with his new neighborhood. His dog was unable to keep him from drowning.
This news triggered thoughts of February 27, 2009. The day the principal of my then 7-year-old son’s full special education school called to say the school had “lost” my son.

“This is bad”, she said. “This is very, very bad”. And in those few frightening hours, I learned things that would change me for the rest of his life and ours. He was supposed to have been in the care of a paraprofessional in plain view of 6 adults but somehow he disappeared. Could this be true? Had he overcome his fear of the dark miraculously acquired the OT skills to break safety latches and automatically locking doors when he was incapable of holding a pencil without support, and decided to make a jailbreak, running from the most restricted educational environment available in the public school system? Had my brave, nonspeaking, chubby little guy taken flight in bare feet, coatless in the chilling February winds? We learned that what we were initially told about what happened that day was completely untrue. Something more horrible had happened. But our story has a less tragic ending. A stranger found him, wet and muddy, but alive, and brought him back to us.

I have been homeschooling my son ever since. The most important segment of his physical education program is the swimming program. Not the water therapy he was getting in his special education school, but real swimming lessons, with dedicated instructors and his parents attending him. We will never know what happened that day unless our son should learn to type and tell us. But we realized our son needed to learn some life saving skills. We urge all parents and care providers of autistic children and adults, particularly nonspeaking ones, to find someone able to teach your children/ adults to swim. All children, autistic or not, will always be very attracted to water. Teaching children to survive in the water might save their lives even when a faithful dog cannot. Think your child or adult carries too "severe" a function label to learn to survive in the water? Anyone can be taught water survival, even if they can't swim. This video gives a brief introduction of a swim to survive program, one that all special needs families should have available here in the U.S. but we don't: 

Read about what the Dan Marino Foundation is doing to save lives by training people to teach neurodivergent youth to swim. http://www.danmarinofoundation.org/aquatics

I hope that families try their best to plan for events like moves from one home to another. Prepare your nonspeaking child's bedroom first; then sacrifice unpacking time to teach your child how to be safe in his/her new place. Marco Polo your offspring and keep them engaged and within view until the move in is at a stage where your child won't get lost in the confusion of movers and friends trying to place large items in the new home. Preparation could save your loved one's life.

I am not assigning blame to the family at all. Sometimes every precaution can be taken and things can still go very wrong. I send my deepest condolences to the Burton family. But for the grace of God, any one of us could be in the Burton family's position. The only thing we can do as care providers is plan, accommodate, and educate our loved ones.

Peace