In 2017, O, the Oprah Magazine, commissioned a famous white photographer, Chris Buck, to deliver a series of shocking photos on the reality of how racial inequality is socialized into the American psyche. The most striking photo is of a white child with long blonde hair standing in front of a shop window filled with Black dolls.
Had Oprah's team thought this through, they would have chosen a talented Black photographer to both present the topic and uplift Black photographers from obscurity. But the reality of what life was like for me and all my peers as a child was clearly displayed in that script flipped series of magazine photos.
Asking me why I want anything specifically African American for my Black autistic son is a highly painful personal question. The answer lies in the reality thrown into stark relief in the photos displayed in that magazine. We are taught through every channel of mass communication that our societal worth is less than whites. This system attempts to subliminally teach us that we are not humans who matter. It is meant to remind us that the world is not made for us.
Our country dictates the scope of our culture and societal value by how we make the dominant culture feel and react, and how we serve and entertain them. These views of speech, beauty, justice are subliminally infused in our daily lives. Our hair is "not right" because the standard of beauty is white hair, which is largely straight. Our speech is "not right" because our English has a lilt and flows like music. It is okay to have a foreign accent but not okay to have an Ebonic one. We were taught to eliminate the Blackness from our voices if we wanted to succeed and lift our race above poverty. It seems to be okay for white people to mimic and mock our speech, or to profit from our athleticism, creativity, and intelligence, but it has been taught to the white majority that to date, the African American Vernacular (AAVE or AAE) is a sign of a lesser command of English rather than a cultural variation. AAE has been used to diminish us and make us feel that we are not educated enough or assimilated enough to be acceptable to mainstream society. It has been used to excuse injustices like disparities in criminal justice, healthcare, and work-life benefits.
Asking me why would I want an Assistive Augmentative Communication (AAC) device made to serve my son to have the voice of my Black brother is like asking why I would want my son to have a Black prosthetic arm instead of a white one. The idea of having this option is long overdue. If my son could use verbal speech, his voice would not sound like any of the voices on his current AAC devices. It is a question that shouldn't have to be asked. It matters more than anything that a person has the equivalent of a speech device made for the entirety of who that individual is. And right now, in 2020, that option does not exist for my son and his AAC using Black autistic peers.
But this question is extremely painful for me. There was a brief part of our son's life when he could use verbal speech. Somewhere we have a video of him speaking Turkish to me. It happened when his father was asleep and I was recording. Our son asked if he could have some food. His voice was the African American toddler version of his father's. His Turkish was beautiful. I witnessed that he fully understood the Spanish other toddlers at the playground spoke too. He responded appropriately to all their requests he join them in play and on various pieces of playground equipment.
I am a heritage Spanish speaker. My husband is a heritage Turkish speaker and our daughter is an interpreter and educator. Realizing our son had a facility for being multilingual with the ability to smoothly code-switch from one language to another was one of the happiest days of my life.
Our son still has that talent for a receptive understanding of many languages. But the hope of verbal speech, impeccable AAE/Turkish /English/Spanish with that distinct AAE lilt is gone. The idea that he could have a voice that even slightly resembles the one he lost in his assistive technology is both exciting and heartbreaking.
It is heartbreaking that I must explain why this matters. It is heartbreaking because we are in the year 2020 and it should not have taken this long to realize this need. It is heartbreaking because asking me this question brings a great deal of pain to me. It forces me to remember that generations of our people have had to justify our right to the same quality of life as white American society. It reminds me that I was the little Black girl looking in the window at all the white dolls and not finding any who looked like me.
We have a right to the same quality of life white disabled people already enjoy. Asking me to give reasons why a nonspeaking autistic Black teen would need an African American voice on his AAC device shows how much further we need to travel to get there.
P.S. The need for a variety of African American voices on AAC devices is also a matter of hope. Hope that someday, AAC device access will not be blocked by affordability. A disabled Black nonspeaker's right to the assistive technology they need to communicate should not be something unaffordable to most of our people. AAC devices, like prosthetics for physical disabilities, should be available and affordable to all, regardless of race.
Arnaldo Rios Soto, a Latinx male presenting autistic man with dark curly hair
wearing a gray t-shirt is holding a brown and tan teddy bear and smiling at the
camera.
Today, the police officer who shot Charles Kinsey goes on trial. I read a news report describing how Mr. Kinsey has not recovered from the trauma of being an unarmed Black man doing his job and trying to tend to his client and explain to the police that he and his client were unarmed and trying to cooperate. The police officer claimed he was not trying to shoot Mr. Kinsey. He wanted to shoot his autistic client, Arnaldo Rios Soto instead.
It is important to note that police radio notified officers that Arnaldo was holding a toy, and officers 20 feet away did not feel under threat. Quoting Mr. Rios Soto's attorney, Matthew Dietz, in the Miami Herald:
“I can’t believe that every other officer heard on the radio that it was a toy,” Dietz said. Aledda “aimed, but couldn’t hit a 250-pound man sitting cross-legged on the ground, and he’s a SWAT member? If he was aiming at Arnaldo, he’s the worst shot in the world.”
Arnaldo was a passing mention in the story of the aftermath of this tragedy. In fact, the story of what happens to Arnaldo is told in heartbreaking detail on the podcast Aftereffect, which you can listen to by clicking this link: https://www.wnycstudios.org/shows/aftereffect
There were two victims of color that day, Mr. Kinsey and Arnaldo Soto. One was an African American carer, the other was his Latinx and autistic client. There shouldn't be a hierarchy of victims that makes the victim struck by the bullet intended for the other the main protagonist in this horror story. I find it sad but not surprising that this news article uses the power of words to leave Arnaldo a voiceless footnote in his own tragedy.
Arnaldo has paid a devastating price for wanting to take a walk away from his group home. He was targeted because he was autistic and wandering in the street on a route usually taken with Mr. Kinsey, clutching his toy truck. Arnaldo was unjustly arrested, he was placed in the mental health equivalent of hell for too long. Despite his story having a happy ending of sorts (I mean, he's still in a group home), the memories of that day will haunt Arnaldo for the rest of his life, just as they haunt Charles Kinsey.
I think we need to remind the media that today, the police officer who alleged he aimed to shoot Arnaldo Rios Soto, an autistic young man of color, missed and shot his support staff member, Mr. Charles Kinsey, instead.
Read more about Arnaldo, Autism, and catastrophic encounters with law enforcement:
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
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.
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.
I try to stay out of autism parenting arguments in the community. My son doesn't fit the mold of those parenting issues being debated, and such discussions only end with my being furious at the lengths parents go to try and force normalization in their children the way Cinderella's stepmother tried to force a glass slipper that clearly wouldn't fit on Cindy's stepsisters. But sometimes speaking up saves lives and may change things for the better. So I'm going to write about an aspect of autism parenting.
Someone on social media decided to post a question. They asked if it was better to make an autistic child comfortable than to challenge them. The inquirer followed by saying this was a point of heavy debate in the autism community and someone had advised them that it was better to make their child comfortable implying that parent posting the question didn't agree with the idea of comfort over challenge.
The entire question was wrong because it was founded on the idea that normalization of an autistic child, by any means necessary, is the right ultimate goal when curing them is not possible. This ignores the reality that autism is a disability that requires, by law, just as much adaptation, accommodation, inclusion, and support as any physical disability would.
Autism is a lifelong disability. Autism is not "curable" by ABA. Enforced behavioral modification simply masks the outward expression of autistic behavior but can cause residual harm that presents in post-traumatic psychiatric disability. Parents often believe that the surfacing of mental health concerns in their autistic children expressed in anxiety disorders and PTSD are caused by autism when in fact they are part and parcel of a lifetime of no accommodation for their offspring's disability, traumatic enforcement of normalization in the guise of parental and professional "challenge over comfort" attitudinal ableism and treatment-related stressors accumulating over time.
Back to the question. Is it better to make an autistic child comfortable or challenge them?
What the hell does that mean?
Where daily life, care of self, care of the personal environment, and overcoming bars to access and disparities in everything from health services to educational equity are challenges which already exist for nonspeaking autistic youth, creating the "making them comfortable v challenging them" question as some adversarial issue dividing the autism community skews the autism conversation away from the true question.
Why isn't the question "why hasn't the entire autism stakeholder community met and worked out the problem of how therapeutic support can be given without doing further harm to the autistic consumer, particularly when we now know that at least one generation of autistic adults have been permanently traumatized by how therapies are provided now?
When parents set incorrectly high expectations and later find they can't normalize their offspring to their satisfaction they begin a cycle of frustration based abuse that ends in tragedy. Autistic disability rights activists discuss their own lifelong traumatic treatment experiences in the hope of sparing today's autistic children the long term damage they must live with because of these attempts to normalize them instead of providing the accommodations and supports needed to improve autonomy. If autistic parents were told their child had a physical disability that required they use assistive technology equipment like a wheelchair or cane, they would not then feel they must challenge their children to move through their environment without a wheelchair or cane. They would instead fight for the best equipment available for their offspring. Fundamental to the rift in the understanding of what autism accommodation, services, assistive tech, and inclusion should look like is this incorrect concept that autistic children must be forced to adapt to everything. This pressure increases the more a child can pass for what is viewed as normal. It increases if a child who might be able to communicate at a much higher level with an assistive technology device can produce single or two-word utterances. The goal with any other nonspeaking population is communication through AAC. With autistic nonspeakers, it is forcing two-word utterances and declaring their incompetence.
It is important not to conflate challenging a child after accommodation for a disability and forcing a child to a parent's view of what a normal person looks like. Forcing normalization is a clear sign that parent does not understand the scope of what encompasses autism as a disability and that is dangerous. Acceptance of disability is not lip service during Autism month where we can say we accept our children while compartmentalizing away the reality that they are disabled. It is critical to grasp that we are parenting disabled people. It is imperative that we be certain our children who can pass for typical are assessed for auditory, sensory, and cognitive processing disorders often missed in diagnosis because the child presents as "high functioning. It is critical to push for assessments that do not exist right now that can measure the same auditory, sensory, and cognitive processing disorders in nonspeaking autistic children and adults. Not knowing if a nonspeaking person processes what is said to them in a typical way is a major bar to any treatment, therapeutic support or communication support they need as disabled clients.
This is not a question of "comfort v challenge." It is a question of supporting decision making, educating your children about the scope of their disability and how to keep their mental health intact by using accommodations and assistive technology to support their processing and navigating a world not built for them. It means allowing coping strategies to remain in place as long as they aren't self-injurious. It means actively seeking humane solutions to self-injurious behavior. It means when aggression occurs, understanding whether the culprit is something like your offspring being in that eight percent of epilepsy patients reacting to their medications with so-called Keppra raging. One diligent autism mom tracked her daughter's rages and realized over time that the culprit was environmental and in fact an additive in McDonald;s fries. Once the culprit was discovered, the young woman was calm and happy.
Yet we parents are being taught that everything society considers wrong with our offspring is the fault of autism. More lives have been destroyed by this attitude than I can count.
This journey isn't about how embarrassed parents might feel that our children are disabled. It isn't about how things look to others. It is about preparing our disabled children to survive and navigate our world with as little stress and as much independence as possible. It is also about teaching them that society is also interdependent, and it is perfectly natural to need help and supports to safely navigate their lives.
Let us begin by understanding our own offspring as much as we are able. Let us realize everything we try to do with them on the excuse we are doing something for their own good has consequences.
Let us get our own headspace together so we can mentor confident, happy, autistic adults who know they are disabled and are fine with who they are.
Fred Dickey uses the smell of Bleach as subliminal messaging throughout
his train wreck of an article on autism. Pictured are Clorox and a bucket
from their #BleachItAway campaign
I need to make some points about the heinous article professor David Perry discusses in one of his blog posts. I chose to share it on the Autism Wars community page on Facebook. The discussion on the post is beginning to veer from the point of professor Perry's critique and my original reason for sharing it. So let me break this down from my personal point of view.
The goal of journalist Fred Dickey is calculated and apparent. He’s written in this style (evil autie trope) nearly 10 years after numerous protests organized by autistic disability rights activists shut down everything from the infamous “ransom notes” campaign launched by New York University's Child Study Center (NYU CSC) to a series of horrific PSAs from misguided organizations like Autism Speaks. The media knows better than to present this dangerous view of autism by now. So we must ask ourselves why Fred Dickey wrote about autism this way at this moment.
Less than one year after the publication of two comprehensive histories of autism, the use of 1950's tropes to characterize disability could be in part Mr. Dickey not researching autism as a disability but rather imposing his personal ableism regarding autistic people into his writing. Mr. Dickey's goal appears to have been the deliberate sensationalization of a family crisis situation involving a vulnerable autistic 10-year-old and his overwhelmed mother. To the comments I've read on making this a teachable moment for Mr. Dickey, I sincerely doubt he is open to teaching nor is that a viable use of time and energy. He stands to benefit from any sort of written attention in terms of driving traffic to his article and the chance to write more on this topic and do further damage. My opinion is such efforts are a zero sum game.
This is an election year that includes great pushes to pass some frankly terrifying attempts at mental health reform by regressing to draconian systems of care, so Dickey's attempt at painting the worst portrait possible may also have a hidden agenda supporting the case for funding the return of the mental institution model that locks disabled community members away from society to be victimized behind prison-like conditions.
Mr. Dickey may have also wanted to anger enough people to force a reaction, and by that reaction, whether well-intentioned parents trying to educate him in autism awareness or angry activists calling him out on this atrocious piece of work, would serve to make this single article more prominent and more likely to facilitate Dickey being called upon to pen more controversial articles. Mr. Dickey may be using the Trump “strategy” of using shock value to gain attention. Unfortunately, his victim here is Rene Camacho, an autistic 10-year-old. No one should be allowed to do this to a child, and no parent should allow it.
The most effective protest that can be given in reaction to Dickey's sorry excuse for an article is to ignore posting any reaction to it or Fred Dickey and reach out to Rene Camacho and his mother instead since Dickey used them as props in his fake American horror story. Caring about the autistic victim and his clueless family is both the right thing to do and the moral obligation of the entire community. Reaching out and offering to educate and help the mother, son, and siblings could save their lives.
But it is also important to point out inconsistencies in this story. This kind of deconstruction of destructive content demonizing disabled family members in crisis can go a long way to correct the way other vulnerable autism families view them and reboot the entire train wreck into positive support for the autistic people in crisis being victimized by such rubbish. Here are a few things that caught my attention.
1.How does a woman so overwhelmed she cannot keep furniture or cleaning fluids safe in the house and needing to constantly disinfect because of her son's alleged behavior, have the energy to establish and run a nonprofit that repairs the property damage done by autistic kids in homes?
2. If this Rene's behavior is as described in the article, why is there no mention of his school life and how these behavioral challenges impact it? This would indicate that Mr. Dickey couldn’t find any facts to embellish there, making it conspicuous by its absence. If Rene does well in a school setting then his problems are related to his home environment.
3. The mother in this article claims to have repeatedly discussed her son’s inappropriate use of cloth towels in the bathroom with him, but claims because of her son’s autism, she has now chosen to not have towels in the bathrooms. Two interesting things not intended by Fred Dickey to come out here do once we are able to move past our justifiable outrage at the disclosure of the worst moments and private challenges of a disabled child.
a. Because she discusses having repeatedly told Rene what the appropriate use of bathroom towels are, we can conclude that Rene has verbal speech, and sadly, his mother andwhoever continues the therapies mentioned in the article have not tested Rene for an auditory processing disorder. They have simply assumed he is being noncompliant because they presume his incompetence.
b. It never dawns on Ms. Camacho that her son Rene may be trying to tell her that something about the toilet paper she’s supplying for example that it is causing him discomfort, and she needs to change her brand of toilet paper. She probably has never asked him if he is having an allergic or sensory reaction to the toilet paper in the bathroom. Because her fixes are based on the presumption of Rene’s incompetence, she sees her own son as behaviorally static, and she will never accept any answer to the question of why a particular behavior is happening in the context of agency. The fact that Rene might be trying to solve a problem by behaving in what those around him view as a maladaptive way requires the presumption of his competence and respect of his agency in his own life.
4. Dickey describes situations like the replacement of a broken window glass with plexiglass, the uprooting of a tree in the context of the family not being able to enjoy their own preferred object and activities because of the autistic member. He does not discuss the changes needed to adapt Rene’s home to make it accessible an accommodate his disability. Had the changes in the house been approached from the standpoint of ADA accommodation, it would have given a qualitative difference to the article’s narrative.
5. Rene’s sisters have not been taught to engage him as a sibling.They have been taught to blame every unhappiness on their brother including the absence of their father in their lives. His activities to seek sensory input are viewed as behavioral problems rather than attempts to gain accurate input from an environment he is clearly having challenges navigating . No one is educating his sisters about his disability except to scapegoat and victim blame. He is seen as destructive rather than a disabled young man trying to gain vestibular control in order to focus. Someone needs to reach out to these people and educate the lot of them. This is happening in San Diego, CA. I hope this can be made to happen.
6. Ms. Camacho’s husband was in the U.S. Navy, where the nature of duty assignments involves long absences from family and the military spouse is expected to carry on alone. Protracted duty assignments are statistically the cause of a large rate of military marriages ending in divorce, particularly in destabilizing moments for the military member, such as transitioning out of active duty military life, which was mentioned in the article. So the ending of the marriage here being entirely laid on the shoulders of an autistic ten-year-old is overly simplistic and dangerous, even if it gives Rene's mother an excuse beyond her control for the failure of the relationship.
7. The most important trope in the article, Dickey’s use of Ms. Camacho’s anecdote of her father wishing to call a priest to exorcise the autism from his grandson should be a red flag to everyone reading this. It harkens to incidents like the death of Torrance Cantrell who suffered and died at age 8 because his mother's church was trying to expel the demon autism from him. Demonizing, othering, and reaching for unhealthy solutions to a young man whose had no outlet to organize sensory input, navigate his home environment, and interact without ableism with his siblings and parents is not going to end well. That is justification for outrage against Dickey. But he is truly unimportant. Those he used to gain a moment's attention in a content laden Internet are the people that matter. References/Resources
----------------------------- Bad Disability Journalism: Autism as 'Genetic Devil' by David Perry http://www.thismess.net/2016/08/bad-disability-journalism-autism-as.html Disability Community Condemns Autism Speaks http://autisticadvocacy.org/2009/10/disability-community-condemns-autism-speaks/ The Ransom Notes Affair: When Neurodiversity Came of Age http://dsq-sds.org/article/view/1065/1254 Exorcising 'Genetic Devil' Autism: The Murder of Torrance Cantrell: http://theautismwars.blogspot.com/2013/06/the-murder-of-torrance-cantrell-towards.html
Bonnie Liltz was given a reduced charge of manslaughter and sentenced to four years in prison for the premeditated murder of her nonspeaking disabled adopted daughter Courtney. Courtney was a 28-year-old woman with CP and had a right to survive her mother's potential death. Bonnie's excuse was that she has severe health concerns and did not wish to die and leave Courtney back in an institution where she would receive terrible care.
Bonnie was 19 when she was diagnosed with ovarian cancer. The treatment at that time was basically radiation sickness inducing and Bonnie had devastating health problems ever since. She chose to adopt Courtney, fully aware of Courtney's lifetime support needs as well as her own frail health. During sentencing a parade of family, friends, and neighbors requested leniency. Her attorney repeatedly stated that Bonnie had dedicated herself to Courtney's care and that Courtney's murder was an act of love.
Nope. NOPE. NOPE.
This is such an insult to the hundreds of disabled and chronically ill parents with high support needs who lovingly future plan and parent their own disabled children and keep up with changes in the law that have changed service providing for adults with intense support needs like Courtney. Courtney could have remained in Bonnie's home, the home she knew and grew up with if Bonnie had achieved home ownership. Courtney was adopted by Bonnie at age 5. So in the 23 years that followed, Bonnie, who knew she had a horrific health history and declining health, did not reach out to all these friends and family who are singing her praises in court and come up with the 24-hour nursing and personal care plan Courtney would need after she died? Did no disability service agency explain that Courtney could have the services she needed at home or in the community? The tacit structural ableism rampant in media reporting of these events leaves so many questions unanswered because their narratives leave Courtney erased from both her life and death, her existence defined by her mother as self-sacrificing care providing single-parent, her mother's friends and family relating her mother's struggles, and her mother's justifications for her murder. Courtney deserves better.
Why didn't Bonnie, knowing her own health was failing, set Courtney up in a community-based placement of her own with staff to care for her after Courtney's 21st birthday? Why would she just say to herself "If I die, what will happen to Courtney? Well, I'd better kill her then?" Why is it that in so many of these murder-suicide attempts the murderer seems to recover without any real harm but the disabled victim has no chance of survival?
If I die, and any of you, my friends, family, or colleagues, say "she dedicated her life to that severely disabled son of hers" I will come back as a ghost and kick your collective asses. If you have any love and respect for me in life, do me the service of not cheapening my relationship with my son after my demise. Mustafa deserves better.
Let us make this clear. If I die, the only thing I want anyone saying about me and my son is that I dedicated my life to fighting for my son's right to have autonomy and as much agency in his own life as he can manage. Anything else is dehumanizing to my son, and my son deserves better than to be defined by the idea that I was unpaid support staff for him and I mothered him. He can't become some sort of object of pity in his dead mother's life. If I die, I expect our community to step up and help my husband and adult daughter ensure my son has his human rights to a free and appropriate education, a community-based living placement neither in a group home nor an institution and the supports he needs to thrive after I'm dust in the ground. The only legacy any parent who is the primary care provider for a nonspeaking disabled person must leave is the memory of their efforts in life to guarantee the survival, autonomy and freedom of that disabled human to live as full a life as possible whether they survive to care for them or not. Everything we do, from their diagnosis day to the last breath we take, must ensure the survival of our offspring. That is what a mother's job is. That is my damn job. It doesn't make me a warrior mother. It doesn't make me superlative. It makes me Mustafa's mother doing my job by him and fighting for his human rights to respect, dignity and access to the same community I fought to live in as a woman of color.
Murder is not an act of mercy. We must all stop propagating this lie that murdering a severely disabled loved one is an act of mercy simply because so many people are so ignorant of what it means to be disabled that their fear of visible disability drives these horrible thoughts. If you are a parent and have ingested this poison you must expel it from your heart. This ideology that people are better off dead than disabled is a terribly dangerous lie. Part of moving past that toxic culture and towards saving lives is to recognize that everyone has the right to an autonomous life and agency in that life. Courtney's life was hers to live and not her mother's life to take. Mustafa and I fought to bring him into this world and survived. I sure as hell am not going to take the valiant war he has fought to overcome the mountain of obstacles posed by his disabilities and dishonor our joint fight for survival by murdering him simply because I have been told my life may end before his.
Rather than fearing what the future might hold for our offspring help build a world of communities designed to accommodate everyone and stop being afraid to let your disabled children grow up and live an adult life. Imagine what their lives without you will look like and help them make that happen now. STOP KILLING THEM. Bend your collective parental wills and energies to making the world work for them. The ultimate failure in this cycle of violence against disabled adult children by their carers is a systemic one. Bonnie should have been shown that Courtney would not have to survive her death in any institution and Bonnie should have been able to transition Courtney into an autonomous community-based living situation at 21 that Bonnie could have overseen for these 7 years. I would argue that if Bonnie truly loved Courtney as much as everyone said she did, a secure future plan being implemented now for Courtney would have dismissed thoughts of filicide on Bonnie's part and she might have sought professional help for her own wish to end her life, and possibly two lives would have been saved.
What needs to happen is that we must all get to work on the foundational issues that can prevent these murders before they happen. That begins with all of us parents understanding that our deaths are not the end of the world for our severely disabled children. We must act now to ensure they are able to have an excellent quality of life both now and when we leave the world. Fight to save our children's future not to end their lives.
If I die, and my son survives, thrives, and remembers he had a mother who loved him, I know I will have left this earth feeling as if I have achieved paradise. His survival, his growing up to be a man who can exercise his human rights and civil rights and be accepted as he is my only goal. Remember that. Remember the tragedy of Courtney Liltz and the toxic ideology that led to her murder. Remember Courtney as a woman who is being erased from her own story and don't allow it to happen. Be aware that filicidal and suicidal ideations require professional help. If you hear it, get that parent help. Don't enable it by supporting this ideology on any platform for any reason. Don't stand by and do nothing, then sing the praises of the murderer. Courtney is not better off in Heaven. Courtney is not better off knowing the one person she trusted murdered her. To claim a belief in God and take a life placed on this earth and meant to outlive you means you have no faith that God will protect the life He brought on this earth after you've left it. That is the ultimate in religious hypocrisy.
Justice was nearly undone by those who by their testimony eulogized Bonnie Liltz, and thus erased Courtney Liltz's value as a person with the right to live, decimating her rights as a victim with the right to justice. If we continue to allow this mentality to spread, others will target our children and decide it is okay to end their lives without their consent or our knowledge. So wake up and educate people about your disabled loved one's right to exist. Begin with your own friends, neighbors, and family.
I was leaving the hospital, being wheeled out to my transportation.The LPN, said: "your son is autistic? Wow, that's so sad." I turned in my wheelchair and replied, "Oh? Why?" She was so taken aback that she began with "well, uh, I mean, er, you know.." I was firm. "My son is brave, resilient, and compassionate. He is also incredibly patient." "So it is not sad. It is an honor to be his mother and be part of his life." We spoke a while longer, and she left thoughtfully reflecting on what we discussed about Mustafa and his value as a person.
Begin by changing the conversation. No exceptions. What is at risk is our children's lives.
Peace
Our children are growing up and growing old. As fun as it was to watch them as infants and sweet young children, we have to accept the fact that our children are maturing and will age. My son is on the brink of becoming a teen. What I have spent the past three years doing is asking myself what kind of quality of life and standard of living I want my son to have when he is grown up.
Part of the reason for my unusual point of view in this blog is an attitude driven by the idea that I want my son and everyone who is disabled to live as autonomously as possible. I want my son and all his peers to experience the best quality of life they can. I want my son and his peers to have the opportunities to succeed and excel in life without losing health benefits, food stamps, and other supports that sustain them. I want my son to be completely included in our community and respected in society as he is. I want my family to understand that my son's future should not be tied to anyone else's. The world should be such that he can live his life without feeling he needs me to be alive to live it with joy. No one, not even his mother, should make him feel dependent. He should feel empowered.
This attitude is why, when being asked something by Landon Bryce one day a long while ago, I was unable to answer. It had to do with whether I considered myself an autism parent blogger. I really dislike the term "Autism Mommy Blogger". I didn't want to be called that. Because it is used in a derogatory way, to diminish the women blogging. The majority of these women are highly educated authors, journalists and career women who made life changing decisions to be there for their autistic children. Others are dedicated stay at home parents who are self taught advocates for their own kids. None deserve to be marginalized because thousands of other parents read what they write and hold it in higher regard than someone with a background in journalism or science who is not autistic, or has not parented an autistic child. But facing this question from Landon, I could not put this all into words. I could only say, that I did not want that label. I did not want my son to be diminished by my blogging about him. And not all mom bloggers understand that attitude or care. Some are destructive of their children in their blogging and I did not want to be part of that either.
So understand that blogging was something I started to help gain a voice for what I thought my son and his nonspeaking autistic peers deserved for their future as adults. I don't believe a goal of living above the poverty line is an unreasonable goal. I don't think living autonomously is an extreme goal for a nonspeaking autistic person either. In fact I know nonspeaking autistic adults who do live autonomously in their own homes. So the question was how could I write to explain this to other parents? How could I make them understand that the rhetoric they have been given all their lives, that they must somehow survive beyond all hope and be healthy because their lifework is now to be a caregiver for their nonspeaking autistic child for as long as that child is alive is a recipe for disaster? How do I make other mothers see that there is a better future for their children that does not necessarily include them? Because once the problem is defined properly, it can be solved. Autism parents are determined, tough, patient, and focused people. Imagine if all these characteristics were bent towards finding a solution to the problem of where their children could live out their lives autonomously and how to keep them living a good quality of life. I felt that if I could accomplish that change in thought process and attitude, all our children would be safer, happier, and included in their own lives. Parents would be relieved, less stressful about the future, happier now.
So far, I've failed to reach most adults. Perhaps that is because I am not writing about the tough day to day aspects of being an autism parent. Maybe because I am saying I love my son as he as and am proud of him. Or that I reject Autism Speaks, who does not seem to get the faintest idea of how to advocate for my son and his peers because it refuses to include autistic adults in the leadership of their organization, which professes to advocate and speak for them. I do not know, but I do know that I am not reaching the people who I wanted to try and tell that life does not have to be as others have said it will be for our children. I now wonder if I should simply cease trying.
I don't really know where to go from here. Maybe I should spend some time telling you all what is already out there that can change your children's lives right now. Right now, as state and federal governments are cutting funding from developmental disabilities programs (click me), autistic adults are teaming up to live autonomously and support one another living as independently as possible. Parents of nonspeaking autistic children are having that conversation about coaching their children in day to day life skills now. All that is great. But there is something we can all do right now. We can fight to insure that by the time our children grow up, they are paid what any other worker is paid for equal work. We can fight to insure that all our nonspeaking autistic children are assessed and accommodated with AAC devices and that the law insures that their speech devices are never removed from their reach. We can form communities for autonomous living as parents and built our own cohorts of classmates, playmates or friends that can live together and share a home or large apartment and adapt the homes for them so they can live as autonomously as possible.
We have right now, so much technology that can make a nonspeaking autistic adult autonomous. We are just so focused on the tragedy model scenarios of us carrying our children on our backs for their entire lives that we are not demanding our schools prepare them for life on their own. Our children are ABA "therapy-ed" into learned helplessness. We are fed a litany of what our children cannot do to such an extent that we become helplessly trapped in a mentality that says our children will need us until they die.That mindset is a type of learned helplessness as well.
We now have driverless cars that use GPS and onboard computers to navigate traffic. We have robots that clean carpets, toilets that flush themselves, all in one machines that can wash, dry and even steam clean laundry. We have dials on showers that keep users from dispensing water hot enough to burn. No autism parent is thinking about how these things can make their children's lives more autonomous. What is out there is literally thousands of autism blogs saying the same sad and tragic things. I don't want my blog to be one of the thousands abandoning hope and wallowing in despair.
How can we change things right now? How can we make a future for our children that no one believes is possible? First change our attitudes of what the future means for our children. Yes, our nonspeaking autistic children can live well without us. Yes they can. If we help them. Believe your child can leave home just like any other child. See yourself being proud of your grown child living autonomously. Then join me. I"m telling you what is out there for them will blow your minds.
When we are future planning for our children, we assume they will get the accommodations mandated by the Americans with Disabilities Act, and that is not always the case. I invited Ondrea to share her recent fight for transit support because the present system uses medical standards to determine eligibility for para-transit support, and this criteria excludes the entire population of individuals who may not have visible impairment, but who still need services like para-transit support to help navigate their communities independently and without harassment. So as Ondrea relates her situation and her determination to fight for the right to ride the Ride para-transit service, we who are parent advocates might take a good hard look at our own communities and see how we can change what eligibility is to gain more autonomy for everyone whose challenges may not be apparent. Learn more about Ondrea by clicking here. KC
The need for services is not easy for anyone with a disability to get, because sometimes the door slams in his/her face when he/she really needs that door open. The example I am about to give you applies to me:
Image description: RIPTA RIde vehicle #0141 in downtown Providence
I found out that I had to re-apply to receive my ADA, which is the American with Disabilities Act status, in order to ride the RIDE van to and from places in place of managing the transitions for so many buses in order to get from Point A to Point B to Point C. ( I had to get my primary care physician to fill out the medical part as well.) Once the application was sent in for review, I had to wait a little while before I got a letter in the mail indicating if I was accepted or denied. The truth is, I did not know I had the ADA after receiving a letter on two different occasions, saying that I was denied. I was able to actually take the RIDE van to the Autism Project in Johnston, RI, and back home, for free, although I ended up paying $4.00 when I was going there. (The ADA fee is $4.00 each way although I do have a bus pass. It makes no sense to me why I have to pay, but that's the rule.) It seemed like a long time for a letter to be sent, so I decided to call RIPTA and ask what was the status of my application was.
RIPTA Gillig #0517 buspicks up customers
on the #51 line at Kennedy Plaza.
I was told I was denied, because the primary care physician had checked that I was able to take the bus independently and that I did not need an escort. I can get to and from a bus stop. I can climb the railings just fine. I can understand directions. I won't deny all that, because it is true. However, I get anxious at times when the bus is crowded, and sometimes it is not pleasant, either, when I have to deal with some people who just say some inappropriate things. It is bad enough I have to take three buses to get to destinations like Providence or Johnston. I tried to tell the customer service representative that anxiousness and multiple changes of buses were the issues, but she was going by what the primary care physician said (although I will not deny it). To me, that's clueless, because if those two ladies were in my shoes, they would know how it feels to have autism. Having autism related sensory issues and being anxious is challenge enough to have the reasonable accommodation the RIDE van service provides.
It's not fair that I have to be denied, but I'm going to do everything that I can to fight this, and I will not do it alone. But I must remember I'm not the only one who is going through a situation like this. Despite what's going on, I'm going to keep on smiling and let God do His work.
Re-aligning funding to remove the racial, ethnic, gender and
income disparities in access to accurate diagnosis, lifespan supports and
services
Distributing research funding to increase research in assistive
technology supports, quality of service provision, and directly addressing the
needs of Autistic individuals and care providing families throughout their
lifespan
The importance of the Olmstead decision for my son and those like
him
Medicaid will be important to my son; continued federal governance
is needed
Thank you, Chairman Issa, Ranking Member Cummings and esteemed
Members of the Committee, for allowing me to share my family’s concerns and
Autism experiences with you.
My name is Kerima Cevik.
I am a resident of Prince George’s County, Maryland and mother to
Mustafa Cevik, affectionately known as Mumu, a wonderful 10-year-old boy with
multiple intellectual disabilities. When our son was four, we took him to the
Kennedy Krieger Institute for evaluation. After three years and four
pediatricians telling us “let’s wait and see, maybe he’ll speak” our son was
given a grim diagnosis that included the labels “low functioning” and
“nonverbal Autism”. We were told
that our son would never speak; he’d never improve, that he would always need
help with all his basic needs. We
were also told there was nothing we could do to improve our son’s situation.
Then we were left to absorb this harsh reality about our child.
Since his diagnosis, we have seen our boy repeatedly surprise the
experts. We videotaped our child doing things we were told he did not have the
cognition to do. The team at Kennedy Krieger realized our son was capable of
learning and retaining what he learned. He was in fact, not as he appeared. We
were told we were at the bottom of the developmental mountain with our son. But
he showed them differently. What we’ve learned about our son is that he has the
ability to achieve whatever he goal he sets for himself despite the severity of
his disabilities. And each developmental roadblock he passes drives us to fight
that much harder for his right to respect, acceptance, literacy, and his right
to gain the intensive supports he needs to help him be as independent as
possible throughout his lifespan.
Our son is very brave. He has survived abuse and neglect in
school. He steps outside each day to a world where he is gaped at and made the
object of ridicule. I am a woman of color, what our government has labeled
“Black of Hispanic origin”. So I know what discrimination is. I cannot explain
why this hate exists to my son. He senses it however. He faces racism and
ableism patient and unfazed, because he knows he is loved and accepted at home.
He has made great strides despite not being allowed to benefit from the
treatments and therapies that are supposed to be available at his school and in
his community.
My son’s story is not unusual for special needs children in
families with racial and ethnic differences. So I was disappointed when I heard
a medical professional testifying that late diagnosis and disparity of care
were the result of episodic medical visits to pediatricians by minority
families. Racial bias in health
care and education is well known and I expected that to be addressed by
witnesses at this hearing and it was not. I am respectfully requesting the
committee invite witnesses from a broad demographic, who might be able to give
testimony about the experience of racial, ethnic, and gender differences and
how this directly impacts supports and services for Autistic individuals who
are also minorities or women.
It angered me to hear some of the testimony at the hearing because
our son is our pride and joy. He is an amazing human being. His strength of
will alone is humbling. Is it easy to not work outside the home in order to
teach and care for him? It is a great deal easier than what my son deals with
each day of his existence. And yet he gets up and jumps into life with all the
joy the rest of us may sometimes lack. He deserves better than being called a
burden. He is not a “damaged
child”. Autism did not take our son away; our son is Autistic and is learning
to meet and master his challenges. I cannot get up in the morning and remove my
dark skin; I expect the world to accept me as I am, because my skin looks good
on me. While the devastating historical attacks on the self-image of dark
skinned people have created a market for skin-lightening treatments, “curing”
my dark skin is not the answer. Nor can my son’s brain be removed from his
body; it is part of who he is. The answer then, is to accept him as he is, and
help him meet the challenges his neurology might present him. The Autistic
ability to persevere is giving him the will to work to master skills many of us
take for granted. And if funding is balanced and distributed in such a way that
my son and all those waiting for services are given the supports and
accommodation needed to be fully contributing members of society they will not
disappoint. Our son’s continuing story is proof that motivation, will, and
courage are the ingredients of successful people.
Funding for Services and Supports
Research is a fine thing and I support it; but our son and his
peers will not benefit from any research currently being done because this
research is not in areas such as better learning approaches, life skill
acquisition, Autism specific healthcare and more efficient and affordable
assistive technology. There is very little research on the health profiles of
individuals on the Autism spectrum. And what caused my son’s brain to be wired
differently and whose fault it may be is probably the least urgent of the
questions he needs answered. Autism’s primary challenge is communication, and
yet no research dollars are invested in assistive technology and education
strategies to maximize literacy in nonspeaking Autistics. I fought to get a
single assistive technology evaluation and this evaluation resulted in the
professional opinion that our son could use an iPad and TouchChat App as an
affordable speech device. He is learning to use it now. This single event could
change the entire quality of our son’s life. We must somehow afford a second
iPad device and the software to have on hand as a backup communication device
should his present device be damaged. Families are borrowing money,
fundraising, trying to do anything they can to get the equipment they need for
their loved ones to communicate. Imagine how we feel when we are told that
funding for iPads and iPod as AAC devices is not approved but funding for a
$10,000 dynavox device and the requisite supports and equipment needed to make
using it feasible is. If the funding spent on awareness campaigns was spent on
iPads the impact on the %25 of the Autistic population that needs communication
support and literacy would be life changing. Where funding goes and how it is
used in our community concerns us.
Because our son is learning to use an iPad speech device, someday
he might be able to testify about his needs directly before your committee.
Many older children and adults on the Autism spectrum who do not have verbal
speech are erroneously labeled “low functioning” and thought to be incapable of
learning. We were told our son would always have the mental age of a 6 month
old. His life is changing because we ceased listening to what he could not do
and began focusing on what he could.
Shouldn’t more than 2% of funding go to helping our children and Adults
on the spectrum become more independent? Much of the aggression associated with
some Autistic nonspeaking children and Adults resolves itself when these
individuals are given a means to communicate. Yet research is lacking on Autism
and literacy.
The Olmstead Decision
When our son was first diagnosed, we were told that at some near
future date, we would be placing him in an institution. If you are a parent,
probably one of the most horrific things you could be told is that it might be
a good idea to institutionalize your toddler. I am so glad we did not heed that
advice but instead sought support from the Kennedy Krieger Institute and other
resources to help our son. He has made greater improvement at home and in his
community. While many of his peers are on medications to reduce anxiety and
regulate sleep, he is medication free and is receiving professional help to
manage the overwhelming sensory input he deals with daily without medication.
Unfortunately life in institutions often came with medication used for chemical
restraint, and for many of developmentally disabled children heartbreaking
abuse and neglect. Funding for community-based care allows families like ours
to be educated care providers and our children to live in whatever degree of
independence they can. Whenever a vulnerable population is made to be dependent
on an institutional style care setting the risk rises for abuse. The Olmstead
decision has saved the lives of hundreds of disabled children and adults and is
creating environments that allow us to see our children in our schools and
communities and not shut away and harmed. The benefit of my son being out and
about in his wheelchair is that his is accepted in his community. Our son is an
active part of his community everywhere typical children are. The only way to
end the maltreatment of developmentally disabled children and adults is to end
segregating them. The idea of our son, after having come so far, being forced
to live in prison-like conditions because he is disabled is horrific to me. The
federal role in assuring that our son and all those like him are not imprisoned
in the guise of providing housing supports because they are in the profoundly
disabled category is critical.
A final concern about Medicaid Funding
Although our son is not currently a Medicaid recipient, his degree
of disability dictates that at some future date he will be. Many of his
disabled peers are able to have the critical medical support services they need
through Medicaid. Please do not reduce the role of the Federal government in
Medicaid services.
