Welcome to (De Facto) U.S. Policy: "Autism Housing for Rich People Only"

#AuthenticAwareness requires that we see the near-complete absence of realistic policy addressing the housing needs of the rapidly growing number of adults disabled by autism.

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By Jill Escher

Ten years ago, when I started giving presentations about housing options for adults disabled by autism, my characterization of U.S. policy on this most urgent matter boiled down to one phrase, it’s “Autism Housing for Rich People Only.” I said this because adults with autism whose income was limited to Supplemental Security (about $900/month) could not afford rent anywhere in our region, because it was nearly impossible to obtain rental subsidies, sometimes called Section 8, from the local Housing Authorities, and because California was failing to produce more licensed homes even as it shuttered developmental centers.

But in these talks I would express some hope that considering everyone recognized the tidal wave of disabled autistic adults, within a decade we should see a shift toward a more rational and fair system, a system that allows for an array of viable and affordable options for ASD adults incapable of earning a living and caring for themselves.

Now that we’ve time-traveled to this point, I can only say that, instead, things have become worse, much worse, with many factors conspiring to move the autism housing crisis from downright terrible to an absolute nightmare.

Housing costs are soaring, with rents and home prices more than doubling in my area. Concerns about freakishly bizarre Medicaid rules beloved by “disability advocates” stunt desperately needed cost-effective development for people with I/DD receiving HCBS waivers. The federal Department of Housing and Urban Development (HUD), which ostensibly provides needed subsidies, suffers a history of outright discrimination against I/DD-focused developments. Intermediate Care Facilities (ICF) continue to decline in number. The uber-ideological federal Administration for Community Living has turned its back on severe autism, lavishing its attention on the needs of the high functioning sector. Many local resources have diverted to the mentally ill and addicted homeless. And all the while the population of young adults disabled by autism continues to escalate, living with ever-older parents hobbled by ever-more ailments.

The result? An intensifying of our repugnant national policy of Autism Housing for Rich People Only.

So what can we do about it? I think we can make progress toward sensible, equitable housing opportunities for our severely disabled and vulnerable autistic adults, no matter what their family income, via the following:

As a threshold matter, prominent voices in the autism advocacy community must stop mythologizing autism as a mere “difference” to be “celebrated” and instead act like grown-ups and speak truth to power about the dire lifespan needs of this often devastatingly disabled population. Certain organizations sow complacency exactly at a time we should be stoking flames of urgency. Further, we must boost recognition that severe autism should not be lumped in with every other disability category when it comes to housing — these individuals often need indoor space, outdoor space, staff areas, security elements, materials and amenities absent in almost all generic “low-income” housing.

Second, we need HUD programs devoted to prioritizing housing subsidies for the autistic and I/DD, without arbitrary restrictions (such as limiting any new development to a maximum of 25% with I/DD), and without lumping the severely autistic in with every other low-income contingent. Too often new Section 8 vouchers for I/DD are restricted to those exiting institutions, and precious few adults with autism reside in institutions — in California it’s less than .05%. Thousands of HUD vouchers go unclaimed, which is absurd given the desperate need.

As a landlord who over the years has served many tenants with autism and I/DD, including several with severe autism, I can attest to the power of Section 8 vouchers, which cover rental costs over the tenant’s contribution of 1/3 of the tenant’s income (which is usually about $900 in SSI, so the tenant pays only about $300 of the total rent). These tenants are all extremely low-income and able to break through the national policy of Autism Housing for Rich People Only via the wonders of Section 8 subsidies. But they are the lucky ones, as most ostensibly eligible adults with autism in our area don’t stand a chance to obtain vouchers anytime soon.

Third, we must stop the madness about the Centers for Medicare and Medicaid Services (CMS) Home and Community Based Services (HCBS) “Settings Rule,” which has created a culture of fear among those striving to create disability housing. People are reluctant to create new housing opportunities if there is a chance that a state Medicaid agency will withhold services and supports based on arbitrary litmus tests around size and character of the buildings, or the presence of disabilities among the other inhabitants. Disability activists’ zeal for a one-size-fits-all type of setting has effectively resulted in the de-funding of viable and affordable housing options. And of course, we need more HCBS vouchers available to our population, paying rates that attract and retain competent service providers.

While certainly there are other mechanisms to expand housing options, from a more robust approach to Intermediate Care Facilities (ICFs), to more family-oriented solutions such as legacy homes and accessory dwelling units, substantial changes at HUD and CMS federal level could go a long way toward the policy we need: Autism Housing for All Adults Disabled by Autism, Period. I realize this is all easier said than done, but it’s a conversation we must be having at the federal level if we are ever to address this mounting crisis.

Jill Escher is President of the National Council on Severe Autism.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

"I no longer have patience for toxic autism ideologies"

#AuthenticAwareness from an outspoken autism mom: “We have to keep fighting. We have to be the ones to stand up and say enough is enough. You aren't allowed to change my child's diagnosis. “

The author’s daughter with severe autism.

By Seasons of Autism

It's 1:45 a.m. P is wide awake. There's nobody else here to take care of my daughter. Nobody out there in the community that has come to despise parents of autistic children so much is here caring for her. None of those people who say I'm not an advocate. None of those people who call me a horrible person. None of the people who claim to know her better than me are here right now. It's just us.

When you walk this journey please don't let anybody tell you what's best for your children. Especially don't let some random person on the internet who claims they know your child because they claim they share a diagnosis. Sometimes I have tried to just stay out of the fights or ignore it. But the other day I saw just how toxic the rhetoric has become. And over the past couple months my view has changed. I can't sit by as an advocate and allow parents to be treated this way. As caregivers we don't have it easy. This is a hard path. The reality for some of us is that our children will grow up and become adults who will continue to need lifelong care. Frankly I just no longer have the patience for the toxic ideologies being pushed.

My daughter is autistic, it is not her identity. It's her diagnosis. Autism and autism alone is my daughter's disability. Due to her autism she will profoundly be impacted her entire life. If you are autistic and have gone on to have children and live a life outside of a caregivers careful watch that is wonderful, but you aren't like my daughter. There's a reason why autism is a spectrum. Call it severity. Call it support needs. Potato, potato. Same difference.

I'm tired you guys. I'm so dang tired.

Being a mother to P has helped me to understand that autism is different in different people. For us, it's changed our lives. As I sit here listening to my beautiful teen script to herself and watch young children shows I'm acutely aware that we are different from those who rail so heavily against parents instead of supporting them. We are different because we understand the difference. So my page is a place to hear people, to understand that severe autism still exists, although in hushed tones. We wouldn't want to offend those who don't understand it. Don't recognize it because it doesn't fit their version of what autism looks like.

I am so darn tired.

So we won't bow. We won't break under the weight of pressure to conform or be canceled. We won't bend to the mob. I refuse to stop advocating for autistic children and their caregivers. I refuse to remain silent out of fear. I refuse to give up and hide in the shadows where they prefer children like mine stay. Voices who certainly can't speak for themselves so if you silence the parents then you've silenced every story of those who cannot tell their own story. Scary thought, isn't it? If we don't speak up the meaning of autism as a diagnosis of a disability will someday change. I've been saying that for quite a few years now. Never did I fully believe it could happen, now I'm not so sure.

We have to be their voice. We have to keep fighting. We have to be the ones to stand up and say enough is enough. You aren't allowed to change my child's diagnosis. Please understand me when I say I have wonderful autistic friends who do understand severity levels exist. They do understand the difference. They understand that stories like P's deserve to be heard, just like their own. So please don't be fearful of all autistic adults because I have wonderful friends who have been great help to me and my family. Friends across oceans who I know I could call on at anytime. Friends who also have had their voices squashed because they dared to disagree with the cult like mentality that has formed in some parts of the autism community. Just be careful who you allow in your circle.

“Stopping the bullies is vital. Stopping the threats is vital. Protecting caregivers is vital.”

I believe there's hope, but stopping the misinformation is vital. Stopping the bullies is vital. Stopping the threats is vital. Protecting caregivers is vital. When someone is saying something is abuse that needs to be looked at through a clear lens. Not a murky one where some people had a bad experience twenty years ago. The world of psychology is about learning and understanding. And it'll never be without some bad apples who probably shouldn't be therapists. But with any profession some people don't belong there. That doesn't mean you toss out all of it.

After all that has been said to me, some of the horrible things, I'm the one that's here for P. These people no longer deserve my respect, or even a response from me. They are no longer allowed to take my energy or my peace. Someday I'll stand in front of my Lord and Savior and I don't believe He'll shame me for saying parents can decide what therapies their child should have. I believe that beautiful day where I finally no longer suffer from chronic pain, where I finally no longer feel tired, or scared, or overwhelmed by anxiety. I believe that day He'll say well done, good and faithful servant. I don't believe we are here by accident. P was no mistake. P is beautifully and wonderfully made. And her home, her peace, her comfort is church. There is a reason she's so at peace there. It's reassuring to me because I know she has a connection to our Creator I probably won't ever understand.

So this is us. Take it or leave it. Seriously. I used to never ban people, and I always tried talking things out. But I'll no longer tolerate hateful people who spew ridiculous garbage. So if you've hung with me I think it's clear my mental health is suffering due to this mess. It has been rough. I have no tolerance for foolishness.

“Take us or leave us, this is our autism journey.”

This is our life. Sometimes it's extremely difficult. Other times are full of great victories. One thing is for sure Autism alone changed my daughter's life. As well as everyone else in our family. And while we've learned to appreciate the beauty, we also accept the emotional drain from the hard parts. And unfortunately for me, even physical pain is part of that equation. Take us or leave us, this is our autism journey.

Thanks for listening. It's 2:45 a.m. now and P is still not back in bed. It's going to be a long night.

#autismjourney #youcansitwithus #norestfortheweary #mentalhealthawareness

Seasons of Autism is the blog of an autism mom based in Nebraska. You can find Seasons of Autism here.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

In Crowded AutismLand, One Issue Truly Stands Out

#AuthenticAwareness means we understand that not all autism problems are created equal

By Jill Escher

Every day I feel fairly bombarded by media, messages, and research articles about The Latest Terrible Thing in autism. Last week I heard about how terrible it is that parents speak out about their children’s disabilities how terrible it is to use the term “special needs,” the terrible terrible puzzle piece (of course!), and terribleness of autism studies not conducted by “autistic researchers.”

I admit my jealously. How I yearn for the luxury of such superficial moral quandaries.

Here’s what’s truly terrible. A muscular nonverbal 23 year-old autistic man who spends his days ripping and throwing things, and can’t leave the house without at least two strong people safeguarding him. A young autistic woman who ingests toys, soap, rocks, and even light bulbs. An 8 year-old autistic boy who has been kicked out of every school program available in his state due to his aggression. A bedroom smeared with poop. A mother who needs to pad the walls of her house because of her adult son’s history of pummeling sheetrock. A family that spends $80,000 a year that they don’t have on therapies, in-home support and home repairs. A family on the brink of sanity due to acute sleep deprivation. A severely autistic boy locked in the ER, in a helmet and arm limiters to prevent self-injury, with nowhere to go. A family that cannot take their daughter anywhere owing to her constant screaming and history of elopement. A mother who regularly turns to 911 calls to save her when attacked by her 280-pound adult son.

These are the true priority issues in autism. What the professionals call “severe, challenging behaviors,” or “externalizing behaviors.” These are things that ruin lives, break bones and homes, and impose astronomical financial costs and families, schools and care systems. No amount of wishful thinking about neurodiversity, inclusion or “autism acceptance” can make even the slightest dent in these overwhelming, calamitous problems that have tragically become commonplace across the U.S.

The number one job for autism research and practice today must be the reduction of severe behaviors. Compared to this, everything else strikes me as a luxury.

I have two children with profound “Level 3” autism, one who has severe behaviors, and one who does not. Their daily functional realities are so dramatically different that it seem preposterous they have the same exact diagnosis. I would give anything to transform my son’s version of severe autism into my daughter’s.

My son’s behaviors are so severe that not a single agency in our region will accept him as a client. My daughter’s behaviors are so mellow that she can go anywhere and do almost anything with minimal assistance, even a fancy fundraising gala, or skiing challenging slopes. My son cannot attend any family functions; my daughter enjoys all of them. The financial bill to care for my son is many times that for my daughter. My son is on five medications to help address his behaviors, my daughter is on none.

While the idea of curing autism is out of the question (you can’t cure a disorder arising from dysfunction of early brain development), finding ways to mitigate the severe behaviors may be in our grasp. At this time we see practitioners and parents throwing darts at the problem using any tools that might help, including behavioral therapy, a wide array of medications, sensory therapy, cannabis products, and in rare cases electroconvulsive therapy. Occasionally an underlying medical problem like a rotten tooth, is found to be at the root of the behaviors. Typically today’s therapies help somewhat but often they lose effectiveness or have unwanted side effects. Sometimes they are too expensive, or families can’t find a doctor to treat their children. Waitlists at the best clinics can be more than a year long.

We must do better. We need a Manhattan Project of Severe Behavior in Autism to identify better therapeutics for these patients so they can have a semblance of quality of life and to reduce the enormous toll on families, care providers, and systems. How truly terrible that we see so little research on severe autism, the area of greatest need.

But a bit of good news. At the INSAR conference (International Society for Autism Research) next month, NCSA will be working to intensify research in this area. We are co-sponsoring a special interest group, Reducing Severe and Challenging Behaviors in Profound Autism, with many leaders in the field. We see this as a starting point to make tangible differences in the lives of those with profound autism. Nothing in autism is more important.

Jill Escher is president of NCSA.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

#AuthenticAction: Profound Autism at the Dentist

How ABA enabled my son to transform into a cooperative patient and partner in his own health

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By Eric Jager

As the parent of a profoundly disabled autistic young adult, I’ve heard lots of perspectives on the challenges and health risks associated with autism. This has meant learning about multiple therapies and determining how and when to use them to reduce the trauma caused by his autism and to increase his ability to function independently. My son is not unique in that the dentist’s office was a tremendous source of his trauma.

But thanks to a program developed and implemented by his ABA therapist and a dental hygienist who utilized methods grounded ABA, he is now able to calmly tolerate a professional cleaning, an outcome which I previously thought was not possible when we began the process years ago.

“Thanks to a program developed and implemented by his ABA therapist and a dental hygienist, he is now able to calmly tolerate a professional cleaning, an outcome which I previously thought was not possible.”

MJ, who is non-verbal and intellectually disabled, has had exposure to ABA (as well as speech and occupational therapy) in some form for 17 years and I have been reading about both practical uses and critiques of the therapy for almost as long. Over the years, I have seen a shift in the goals suggested by some ABA therapists and insurance companies. For example, extinguishing harmless “socially stigmatizing behaviors” like hand flapping has been less of a focus. Our therapists, with our active input, have had a more intense focus on increasing self-help skills, functioning more independently in the community, and tolerating unpleasant but necessary experiences including a visit to the dentist’s office.

MJ’s trips to the dentist were horrible when he was younger. He didn’t understand why he was there and he resisted opening his mouth. We found it very difficult to communicate the necessity of the experience which he clearly found to be a horrific sensory assault. He would frequently kick and scream and refuse to sit at all. His original dentist wanted to use something called a papoose to keep him still. This is a board that the child is placed on forcibly, if necessary, which binds his hands and legs in place. It reminded me of a straitjacket and we wouldn’t let him use it. As a parent, it was agonizing to watch a dentist use force to keep his mouth open. I can’t begin to imagine how traumatic this must have been for MJ.

This is when we asked our home-based ABA therapists to help. They used a common ABA procedure called task analysis which involves breaking down the process of acquiring a new skill or habit by dividing it into smaller, manageable tasks. The plan involved exposing MJ to various dental tools including the mirror, probe and toothbrush in the comfort of his own home. They worked with him to open his mouth for increasing lengths of time and simulated cleaning his teeth. He was rewarded with verbal praise (“Great job, MJ!”) each time he met one of the established sub-goals.

Next, the BCBA and team leader accompanied us to the dentist’s office and again used verbal praise to reinforce his success in sitting in the chair and opening his mouth, even for a very short time. He made some progress but ultimately, as MJ became bigger and stronger and remained generally uncooperative, this dentist said that the only way that he would be able to effectively clean his teeth would be in a hospital under anesthesia.

“It’s very rewarding to see him now, at 20 years old, finally sitting calmly in the chair for an entire 30-minute appointment. It was crucial for the team to remain patient and focused on the goal of reducing our son’s trauma.”

We found another pediatric dentist with a hygienist who was using the same methodology (explaining every step of the process to him, requesting that he open mouth for just a few seconds at a time and then rewarding him with a drink of water). Although, he is non-verbal it is clear that he likes this hygienist and is much less stressed by the dental visits. Over the course of several years at this practice he has shown slow but significant progress in tolerating the visits.

It’s very rewarding to see him now, at 20 years old, finally sitting calmly in the chair for an entire 30-minute appointment. It was crucial for the team to remain patient and focused on the goal of reducing our son’s trauma. The approach, while not quick or easy, has helped him to maintain his physical health and well-being.

Eric Jager is the parent of a young adult with autism. He writes about autism parenting and develops workshops for parents, educators, employers and individuals with disabilities.

 Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.