When you love the child, but hate the autism

This mother does not love the immense suffering autism brings to her son and family. She invites critics to help, not judge.

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By Lisa Burger

Sorry if these pictures make anyone uncomfortable, honestly they make me uncomfortable too.

I feel that over the years, in an effort to show acceptance for people with autism, society has spent a lot of time focusing on the positive characteristics and talents some people with autism portray. In a way, this is a good thing, because for too long society put people like my son Caleb away in institutions because we assumed they were too stupid to understand anything or offer any value to anyone else. We had forgotten that God gives all people value regardless of their intellectual or communicative abilities.

We forget how challenging and heartbreaking the condition can be for families like mine.

Currently, I think we're getting to a point where when someone talks about a loved one having autism we immediately start to think of all these success stories, and we forget how challenging and heartbreaking the condition can be for families like mine that are more severely affected.

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Caleb is loved and valuable simply for who he is because God created him. We've gotten to a point where if you share the fact that you dislike autism, it's somehow synonymous with saying you don't love your child. This is ridiculous and untrue. 

If your child was blind, deaf, or paralyzed, and you said you hated the disability that prevents them from doing these things, no one would assume you do not love your child. 

Why do we do this to families affected by autism? Why do we make them defend their love for their children?

I think part of the reason is because those who have autism and can speak for themselves have found their identity in their disability. Therefore when we say we hate the disability, they feel we hate who they are.

I'd like to remind people, you're a person who is valuable, but you're not your disability. 

I struggle with severe social anxiety and depression. It's not my identity. My identity is Lisa Burger.

I've asked Caleb if he wishes he could talk, and he will always point to the answer Yes. So if he could change things, and allow himself to talk, he would. 

Does that mean he hates everything about himself and having autism? No. But a part of him does wish he were different "normal." Like everyone else. And it's okay for him to wish that, and it's okay for him to be disappointed that he can't do the things that the rest of us can do easily.

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Caleb is unusual in that he is a savant. Not all severely autistic people are. Caleb can read foreign languages, understand advanced math concepts, and has a photographic memory.

He also smears poop, tries to eat small plastic water bottle caps, gets dirt in his hair to the point where I'm afraid he's going to go blind if he gets it in his eye, head-bangs and breaks windows in my house and then tries to play with the glass, steals food from everyone around him, scratches, bites, pulls hair, drops to the floor like a toddler even though he'll be eight this month, and will attempt to wander off in public.

I'm here to tell you right now, it's okay for families like mine to hate this side of autism. It doesn't mean we hate our children. 

We hate their suffering. We hate worrying that they're going to hurt themselves or someone else. We hate the suffering it causes us as parents, and the suffering it causes their siblings. We hate not having enough time to pay attention to our other non disabled children because our attention is taken up with the child who needs more help. We hate not being able to attend certain events because our child with a disability can't handle it, and watching our other children miss out on things they would enjoy because their sibling cannot handle it.

People seem to think that I'm particularly gifted in the area of autism, but I'm not. My son didn't come with an instruction manual. He came with a disability, and parents who love him who are willing to learn along the way. Really, that's all it takes to help anyone affected by disability. Willingness.

Caring for others involves getting out of your comfort zone and doing something difficult in order to make someone else's life better, even if that means saying, "Lisa, you look super tired and emotionally exhausted, why don't you go sit down and take a break while I scrub the poop off the walls...." Offer practical help. It might be hard to watch a child with a disability for one day. I promise you it's harder for the people who watch them everyday. 

Honest acceptance means offering to help in difficult times, not indulging in fantasies.

Lisa Burger is the mother of a son with a severe form of autism.


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A Sister’s Quest to End Sexual Abuse of the Severely Disabled

At every level the system failed a nonverbal young woman who was raped. Her sister seeks justice and systemwide reform.

Julie Neward on her wedding day with her sister Natalie. (Photo: Stacey Pentland Photography)

Julie Neward on her wedding day with her sister Natalie. (Photo: Stacey Pentland Photography)

People with intellectual disabilities are sexually assaulted at seven times the rate of people without disabilities, according to NPR. One of those victims is Natalie, the younger sister of Julie Neward, who has since transformed into a dogged advocate for the care and protection of our most vulnerable adults. Julie founded Natalie’s Voice, a sexual assault prevention advocacy movement, and the California Sibling Leadership Network, which aims to network and empower siblings of those with developmental disabilities. Interview by Jill Escher, president of NCSA. 


Jill: How did you get involved with the issue of sexual abuse of people with intellectual disabilities?

Julie: My sister is a victim. On April 2, 2012 she was diagnosed with gonorrhea, which was life changing. It was a big, huge, raw moment for me. Natalie was born normal but at 27 months of age she suddenly fell into a coma that left her brain damaged. She has the cognitive level of a 10 month old. She’s nonverbal, epileptic, wears diapers, and communicates by moaning and through her beautiful brown eyes. She is exceptionally vulnerable.

Natalie was living at home with our mother and our younger sister, but attended a program in the community. Hindsight is 20-20 and for months prior to her diagnosis the signs and symptoms were quite obvious, but we just did not know. Natalie had been having a difficult time, moaning a lot and not sleeping, which was not like her. Doctors thought she had urinary tract infections and yeast infections. She was also having seizures, which hadn’t happened for years. She was passing bright red blood while being pottied, after returning home via transit from her outside caretaking facility, which prior to her diagnosis doctors thought were hemorrhoids. Then one evening when we were giving her a bath we noticed that her vaginal area was red and swollen. My mother rushed her to urgent care, where for the first time in all her medical visits, a doctor swabbed her for STDs (sexually transmitted diseases). 

The following day, while we waited for test results to arrive a few days later, we took her to the emergency room for a sudden onset of seizures, but Natalie was just given medication for a yeast infection and sent home.

And then she was finally diagnosed with gonorrhea?

Yes. We were in shock. It took so long to finally have an answer about what had been causing all this distress. And her doctors hadn’t bothered to look. It was a double shock, learning about the STD and the devastating implication that she had been raped. The system failed her in another way too. The doctors noted Natalie’s low cognitive level, that she cannot consent to sex. This should have triggered state-mandated reporting. But the doctors did not do that.

I called the police. They investigated but did not press charges, which is by far the most typical outcome when a person with intellectual disabilities is raped. We also pulled Natalie out of her program, where the director told us “You should have told us first and not called the police.” I personally told her regional center caseworker what happened. Yet the regional center offered no supports, no one reached out. There was a complete lack of alarm and support from our regional center system. There was no emergency IPP (individual program plan) meeting, no emergency services deployed, and it was not treated like a crime by anybody we told about the situation. 

Fast forward a few years, as Natalie’s co-conservator, I pulled her regional center (editor’s note: a California regional center is a nonprofit agency funded by the state to provide and supervise a network of services for people with developmental disabilities) file and began to investigate her records. I sat down with the executive director of our local regional center and walked them through it; it was evident there were errors. In her file, there was no mention of suspected abuse/rape, no police report case number referenced. There was one Special Incident Report (SIR) form in her file filed by her instructor, related to the police investigator inquiring about her history at the program. It was a self-report on the investigator asking about an incident that occurred months prior, where Natalie wandered at an excursion to a bowling alley. After my meeting with the regional center I called Community Care Licensing about the SIR and abuse report; they never received it. The person on the other end stated it was never faxed to them, or that no one in their office was working that area, assumed to be geographic based.

We filed a civil lawsuit against the facility where Natalie had been abused and it led to a confidential settlement. There’s a nondisclosure agreement signed by my mother that I am not at liberty to discuss. But it’s shocking to think that if Natalie didn’t get an STD we would never have known she had been sexually abused in the first place. Because of the privacy laws, the investigator was unable to test the workers at the outside caregiving facility for an STD to narrow down who the abuser could be. Natalie’s perpetrator is still out there. 

The system failed Natalie and your family in multiple ways. 

Yes. By the place where she was abused. By the regional center. By the medical professionals. By the mandated reporting system. By law enforcement. By Community Care Licensing. There was failure at every level. When the violation was discovered there was no alarm, no response. We need confidence in the regional center system that they can handle and respond to suspected abuse, but there was nothing even included in my sister’s files or to help manage this trauma. The regional center did not even refer us to the Family Justice Center of our county, which addresses sexual assault. We have a full system accountability issue.

How is Natalie doing now?

This happened seven years ago and is still very raw. She’s not in pain anymore, but emotionally you don’t really know. But it became apparent she was likely abused over some period and in multiple ways and that she had suffered terribly. She continues to live with our mother and we directly hire a female caregiver, through the regional center system, who helps take her out in to the community — staying at home all day is no life. Now we know she is in safe hands, but I would love to have more support for my mom at home, she is exhausted.

That’s one reason sibling empowerment is so important. They often have more time and energy than the parents, though it’s often hard for them too. During this traumatic time I got married, had two children and advanced my career. We want to do everything for our siblings but we are also limited by our own lives.

In what ways does having an intellectual disability increase risk for sexual abuse?

I will speak to what I know. Natalie is of a lower cognitive level. She has a special and subtle way of communicating with us but other than that she is nonverbal. A perpetrator is looking for someone like her who cannot talk and does not understand what is going on. People like Natalie can’t defend themselves, can’t report abuse, and can’t provide testimony in court. They are the perfect victims.

Based upon the information I’ve seen, the abuse tends to come from a small population of people who are repeat sexual abusers. The abuse tends to happen during the day, by people the individuals with disabilities know. It’s not at night at the hands of strangers. That’s why it’s so important to catch that one person and stop that multiplier effect. But with a population that is so vulnerable and cannot communicate, everything is just “suspected.” You can change all the laws you want but serial abusers will not show up in criminal background checks because accusations don’t stick.

So what can we do?

We need change at two levels: at the systems level, and also with empowerment of families and individuals. For a start, we need the system to acknowledge the epidemic of sexual abuse. I now sit on the State Council on Developmental Disabilities and am starting to stress that we need to fund education and the response to this crisis. We need a line item in the state’s budget; there is none for this year, but maybe next. 

Community Care Licensing is ultimately responsible for the quality of care, but we don’t have real data, it’s all behind the curtain. We have no way of knowing of the volume of confidential settlements, just like with the general #MeToo movement — sexual abusers, and their employers, get shielded by nondisclosures. I think secret settlements are a public health hazard and only protect the perpetrator, allowing them to freely abuse again and again. A close friend suggested that any entity that serves people with I/DD should be legally obligated to disclose nondisclosures, and now the #MeToo movement has really opened the door for that.

Neward with Tarana Burke, founder of the #MeToo movement, and her sisters Patricia (left) and Natalie (right).

Neward with Tarana Burke, founder of the #MeToo movement, and her sisters Patricia (left) and Natalie (right).

I firmly believe there are nondisclosure agreements all over the place and no one knows about them. Facilities and regional centers don’t want histories to be known because the system is stressed and adult services are already in jeopardy. Practitioners and medical professionals need to be more in tune with the I/DD population. I would like to see everyone with I/DD be routinely tested for STDs and other signs of abuse.

Getting down to the level of the individual, prevention of abuse should be embedded in every person-centered plan. This may mean certain type of staffing, or training, or supervision. But usually there is no budget for specialized staffing.

A male support worker was left alone with Natalie long enough to perpetrate sexual acts. Could there have been a plan that a male could not be alone with her?

I have been told that funding issues would prevent 2 on 1 staffing, even for brief periods like diaper changes. The concern is that there is already limited staffing, though at times I have been told an accommodation could be made. I have also been told that if a client is out in the community, it would be challenging to have two people for a diaper change as they would have to neglect someone else. It is not law to have two people and it should be, but we have funding/staffing challenges.

Sorry, back to the question of empowering individuals and families.

Yes, we need to put more power in the hands of the families and individuals, and technology will help us bring this to the next level. Video monitoring and wearable devices can help. I firmly believe we should have cameras in common areas, but this is highly controversial. They offer a false sense of security and we have to be mindful of privacy rights, especially in bathrooms and changing areas. Also, CCTV systems are very costly — it can be hundreds of thousands of dollars. You need someone to be monitoring them and due to storage capacity challenges, the footage may be recorded over within two weeks to a month. There is AngelSense for wandering which is great, but it is limited to GPS and does not take in forensic data that can prove abuse. Remember, abusers are usually known to the suspect in familiar places.

I’ve been working with Dr. Susan Abend of the Right Care Now Project. She has created an “inside-out” medical record system, where loving care providers can input information, not just the doctor. Using an algorithm, the monitoring system assesses health and quality-of-life information for adults with I/DD. The system could potential flag potential problems.

My big dream is that people with I/DD, who consent or have conservators who do, will have wearable devices that can track all sorts of data for quality of life and care. For example, a Fitbit can tell us heart rate, steps, location. If we had wearable technology, we could constantly monitor forensic data, we could see warning signs in real time. Now if a potential perpetrator wants to abuse your daughter  he will know she is being monitored, and be less likely to choose her as a victim. This is our most vulnerable population, this should be a commodity for them. I’m on the supervisory committee looking at technology solutions. We want to test this system and we want the state behind it. We are inching toward this program.

Even without technology, people with I/DD tend to have a routine, and patterns in behaviors. When you see people out of their pattern that’s a clue abuse may be happening; when routine is affected, behavior changes. Natalie’s behavior changed, it should have been a sign. Technology will help, but we should always be alert.

What progress do you hope to see in the next ten years?

We need everyone to fully understand that people with I/DD are highly vulnerable to sexual assault. We need truly effective planning and prevention tools, and a system where perpetrators brought to justice. We need families to demand change and accountability. Having a conversation with a caseworker about creating plans around abuse, for before, during and after, does not cost more money. It is a check box. Dr. Nora Baladerian of the Disability & Abuse Project writes about this. I want to see a world where people with I/DD are able to live their lives free from sexual assault, and their loved ones are relieved from worry.

As the mother of two children with nonverbal autism I want to thank you for sharing your family’s story and all you are doing to advance this urgent cause, Julie.

Thanks for speaking with me, Jill.

Julie Neward is a real estate professional and anti-sexual abuse advocate who lives in California. Learn more about her advocacy work at NataliesVoice.net and CaliforniaSibs.org.  This interview was edited for length and clarity.

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Including Severe Autism in Neuroscience Research

A decreasing proportion of studies include the severe end of the spectrum, which represents 30-50% of the autism population. This needs to change.

Leaders of an INSAR group devoted to improving inclusion of the severely affected in neuroscience research: Kevin Stephenson, Alison Singer, Charlotte DiStefano, Mina Kim, Mark Shen, Christine Wu Nordahl, and Mikle South, with Jill Escher, president of NCSA, at right.

Leaders of an INSAR group devoted to improving inclusion of the severely affected in neuroscience research: Kevin Stephenson, Alison Singer, Charlotte DiStefano, Mina Kim, Mark Shen, Christine Wu Nordahl, and Mikle South, with Jill Escher, president of NCSA, at right.

[Editor’s note: Alison Singer is the founder and president of Autism Science Foundation, a board member of the International Society for Autism Research (INSAR), and a board member of the National Council on Severe Autism. She made these remarks at a session of the INSAR conference on May 3, 2019 in Montreal, Canada.]

By Alison Singer

Thank you so much for inviting me to speak today. This topic is critically important because people with severe autism are being left behind. As I mentioned in the keynote address I gave at INSAR two years ago, many advocates have growing concerns that the word “autism” has grown to encompass something so broad that it is now meaningless. Autism used to mean something specific; until we moved to DSM-5 (Diagnostic and Statistical Manual 5), autism described a consistent cluster of symptoms. But today the phrase “autism spectrum disorder” has become such a big tent term that the people under that tent often have little in common with each other. Autism can mean genius, or IQ below 50. Autism can mean highly verbal or nonverbal. It can mean graduating from Harvard Law School, or “exiting” high school with a certificate of attendance. It can mean self-injury, sleep disorders, aggression, pica, wandering, biting, or not. Thanks to decades of research, we know autism encompasses core symptoms that are present in each person who is diagnosed, but their abilities are vastly different. 

If we are going to be able to personalize our approach to care and provide benefits to ALL people, we need terminology and language that are specific and meaningful. In fact, the DSM-5 was supposed to do this; it was supposed to provide greater specificity so that the diagnosis would point toward potential services, but because of the way DSM-5 is applied, the opposite has happened. Everyone is lumped together as having ASD. To the broader public, the word “autism” only describes the more verbal, traditionally skilled, visible end of the spectrum, because those individuals are able to have a voice, represent themselves at meetings, and appear in the media. Unfortunately, television shows like The Good Doctor are broadcasting this brand of autism, and only this brand, to the world. The result; autistic people with the most challenging behaviors have become invisible and are being left behind.

Earlier this year a new effort was launched to utilize the term “severe autism” when describing more classic autism symptoms. As with many issues in autism, there is no scientifically precise definition of what constitutes severe. Most consider the term to encompass individuals with autism who, by virtue of any combination of cognitive and functional impairments require continuous or near continuous, lifelong services, supports and supervision. Individuals in this category are often nonverbal or have limited use of language, have intellectual impairment and exhibit extremely challenging behaviors like self-injury or aggression that interfere with safety and well-being.

It’s difficult to put a precise number on this population, but national research from the CDC indicates that of the 1 in 59 children diagnosed with autism, 31% were found to have intellectual disability and an additional 25% to have borderline intellectual disability. 30% of people with autism are considered minimally verbal, and according to work by Helen Tager Flusberg and Connie Kasari, core autistic symptoms are typically more severe in these minimally verbal individuals. They are also more likely to exhibit challenging behavior. Overall, the estimate of those with severe autism is between 30-50% of people with autism. And yet we rarely see them on TV or at the policy making table.

Earlier this year, a new organization was formed, the National Council on Severe Autism, to represent this population. The president of that organization, Jill Escher, is here today. This group is committed to directing resources to this population and to making this population more visible. And already they are seeing success. For example, the term “severe autism” is starting to take hold, and in fact was used by NIMH (National Institute for Mental Health) Director Dr. Josh Gordon at a recent meeting of the Interagency Autism Coordinating Committee. It’s sticking because it’s meaningful. It describes a clear cluster of symptoms which is key to finding appropriate interventions, services and supports. 

One of the core goals of the new National Council on Severe Autism is to encourage research of this population. Recent trends in research have been toward focusing on higher functioning individuals; helping them find employment, for example, or studying ways to improve their social skills. A decreasing proportion of autism studies focus on the severe end of the spectrum. Profound impairments in communication, and disruptive behaviors often make cooperation with assessments and procedures challenging, and that’s why I am so glad this INSAR special interest group exists to share best practice on the very meaningful accommodations being developed and implemented to make autism research truly inclusive. Many members of this population cannot speak for themselves, and so this task falls to their parents. I think you will find these parents quite eager to participate in research, as in many cases it’s their children who have the most to gain. I hope you will utilize the resources of the National Council on Severe Autism and look to us for support and partnership. In closing, I want to close by thanking you for making a commitment to research those with severe autism and taking on the additional challenges this brings. 

Alison Singer is founder of the Autism Science Foundation and treasurer of National Council on Severe Autism. She is the parent of two daughters, one with severe autism.


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Five Decades of Autism Awareness: What Have We Achieved?

After much work and little progress, are we like Sisyphus, pushing our autism boulder up the hill, then failing to see fruits of our efforts?

Autism Awareness logos abound, but meaningful solutions remain elusive.

Autism Awareness logos abound, but meaningful solutions remain elusive.

By Neil Greenspan, MD, PhD

In 1970, the Autism Society of America created the first Autism Awareness Month. So, as I write in April 2019, we have had five decades of efforts to increase sensitivity to individuals with this condition — which is actually a constellation of conditions — affecting neural development, communication, social interaction, and behavior. While these annual commemorations may have increased awareness of autism, the extent to which they have enhanced insight into and improved the lives of people with autism is unclear. 

Awareness campaigns may even backfire by creating false impressions. One limitation of disability-specific campaigns such as Autism Awareness Month is that they typically promote experiences of individuals with diseases or disabilities that conform to a preferred pattern. For the individual at the center of attention for one of these human-interest stories, obstacles are faced, struggles ensue, and there is an emotionally satisfying success in the end. Iterations of this narrative arc in relation to autism have undoubtedly engaged some non-disabled people who might otherwise not have paid attention, but they have also tended to obscure many dire realities as well.

Too many media outlets prefer to present only the stories, even if unrepresentative, that have a relatively happy ending and will be perceived as uplifting by the audience. Meanwhile, the bottom line for our population is the inadequacy and sometimes even cruelty of systems and services nominally in place to assist those with autism, especially adults. True autism awareness requires clarity about areas where progress is desperately needed. Here are some of them.

Mental and Behavioral Health Care: The first arena of tremendous need is basic behavioral and mental health treatment. In my experience, most physicians specializing in the treatment of autism focus on children and possibly adolescents and do not treat adults.  Meanwhile, psychiatrists and perhaps some neurologists who do treat adults with autism tend to focus too narrowly on prescribing medications. Furthermore, there are currently zero drugs that are FDA-approved specifically for the core clinical manifestations of autism. The FDA has approved two drugs for aggression in the context of autism (the antipsychotics risperidone [Risperdal] and aripiprazole [Abilify]). However, they do not necessarily address the defining symptoms associated with autism, or, in some cases, even the symptoms they are supposed to treat.

The drugs that are employed typically require a laborious and largely empirical process (i.e. trial and error, with emphasis on the error) that can be excruciatingly difficult for the patient and the family as increasing doses are tried until a positive effect can be discerned, preferably in the absence of intolerable side effects. Knowing what effects, either good or bad, are attributable to the new medication is often uncertain and can create additional burdensome appointments with yet more doctors, not to mention stress. Even so, many of these drugs are only modestly effective or are ineffective while the side effects may be barely tolerated or intolerable. Some of these side effects, such as weight gain, dizziness, or heat insensitivity can be quite serious in the full context of family life even if the prescribing physician regards them as minor. Consequently, the current standard of care for adults with autism is embarrassingly inadequate for many patients.

So have decades of awareness resulted in significantly improved interventions for adults with autism? It seems the answer is no in spite of the sometimes extensive efforts of parents, or other caregivers, to find the necessary care.

General Medical Care: A second problem is medical services for the endless variety of other ailments experienced by many adults with autism. Some adults with autism, even if highly verbal, may not be able to describe their symptoms in as detailed a manner as their doctors would prefer, resulting in a lower quality of care than might otherwise be the case. In the current time-pressured medical environment, the tendency for some physicians to become impatient with those affected by autism, who may require more time and effort than other patients, can also undermine the quality of care. The establishment of a specialized general medical service for adult patients with autism at the Wexner Medical Center affiliated with Ohio State University is a bright spot but also reflects my strong impression that few family physicians or internists elsewhere are effective in interacting with and treating members of this population.

A further complication is that individuals with autism often suffer from multiple other complaints affecting the central nervous system or other bodily systems. These other conditions can include, but are not limited to, anxiety, obsessive compulsive disorder, attention deficit hyperactivity disorder (ADHD), epilepsy, gastrointestinal problems, and difficulty sleeping. Treatment for these other conditions or symptoms will frequently require appointments with other specialists. A lack of coordinated care, which is more often than not the case, adds to the burden of parents or other caregivers.

Another obstacle to appropriate medical care is that when autistic adults live apart from family members, home care providers may be reluctant to take clients to doctor visits for a variety of reasons: a tendency to dismiss the concerns of people with disabilities, a preference for minimizing effort, constraints imposed by having to deal with the needs of multiple clients in group homes, and minimal medical knowledge. A related factor contributing to less than optimal well-being in such residential settings is that the diets of individuals with disabilities may contain too many calories and too few nutrients. Of comparable importance, their levels of physical activity may be less than is necessary for optimal or even decent health.

With some exceptions, it is hard to see how decades of autism awareness have resulted in improved access to general medical care for adults with autism even when caregivers devote hours to finding the most appropriate physicians. 

Community Services: Adults with autism typically lack the cognitive and adaptive skills to function independently, and require disability programs to provide care, paid or volunteer work, social and recreational opportunities, and community engagement. However, the supply of these programs is not keeping pace with increasing demand. Providers are not paid adequately and many are shutting their doors, while waitlists for these Medicaid-funded programs grow longer in many states. The autism housing crisis is acute across the country, and will only be exacerbated as the parents grow older and too infirm to care for their disabled grown children.

In many cases, the extent of individual attention required necessitates monthly expenses that are astonishingly high and therefore completely out of reach for the vast majority of families. For example, earlier this year we spoke to an individual with multiple relevant credentials who provides customized in-home services — and charges $250 per hour for her services. More recently, we contacted a residential therapeutic facility in another state to assess its suitability for a family member and learned that the services offered are about $25,000 per month.

Furthermore, in spite of stereotypes, many individuals with autism want friends and seek social acceptance and engagement. However, limitations in social skills may cause them to be anxious in social settings and may create situations that make nondisabled people less likely to become friends. One result is that many adults with autism are extremely lonely. I see an epidemic of isolation among young autistic adults, who need to find their micro-communities within their own communities. But such services are in short supply.

Again, it is difficult to see how decades of autism awareness has produced an adequate community care system for adults disabled by autism. No matter how hard parents search for an appropriate residential arrangement for an affected family member, they cannot find it if it does not exist.

Employment: For those with sufficient cognitive skills, finding and maintaining employment is challenging. They can run afoul of fellow employees and supervisors because they react too strongly to impolite comments or critical feedback from other employees or from customers or clients. Affected individuals may also fail to abide by what are viewed (at a given workplace) as customary patterns of behavior. One consequence is that adults with autism, even those who are deemed “high functioning” continue to have relatively low employment rates. 

Summing up, in spite of decades of awareness campaigns, necessary services are profoundly inadequate, and I do not see on the horizon solutions in many of areas, be it mental health, general medical care, community services and housing, or employment. Sure, iPads, behavioral therapies, and palliatives described in some books — such as Disney movies, Siri, medical cannabis and road trips — may be helpful at times, but current, stable and long-term options are unsatisfactory for the overwhelming majority of people. Consequently, the efforts of parents, other family members, or unrelated caregivers supporting adults with autism are analogous to Sisyphus* of the ancient Greek myth – metaphorically rolling a boulder up a hill only to have it roll down again endlessly. Awareness is clearly not enough. We need well-conceived action now.

Neil Greenspan, MD, PhD is an immunologist and clinical pathologist in the Department of Pathology at the Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, Ohio. The opinions expressed are solely his own and should not be interpreted as representing the official views of the institutions with which he is affiliated.

* In Greek mythology, Sisyphus, because of various tricks he had played on lesser gods, was punished for eternity by Zeus to roll a boulder up a hill only to have it roll back down, in an endless cycle.

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We Need a Full Continuum of Care for Adults with Severe Autism

No community provider was equipped to serve our grandson. ICFs (intermediate care facilities) are like ICUs of the I/DD world, providing a centralized level of care unavailable in the fragmented community system.

 
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The author and her husband with their grandson, Aidan.

 By Joan Kelley

Twenty six years ago, our beautiful two-year-old grandson had come to live with us as a bright-eyed, engaging, talkative toddler. Within six months he began to exhibit odd behaviors, extreme sleep issues and lost ability to use his three and four-word sentences. Little did we know that a diagnosis of autism awaited us, or what that would mean.

Among other things, it has meant a Herculean struggle to find appropriate services for Aidan. In addition to the stress at home — sleepless nights, extreme behavioral issues, including daily clean-up of feces smears in various places through the house — we faced ongoing resistance from the schools and the social services agencies. It started in preschool when the special ed director decided they were not about to “spend money they didn’t have” on this intensely challenging child. Special education then limited provision of much needed behavior services, training and oversight necessary for a child with extreme needs.

After the Kansas Winfield State Hospital closed its doors, money was released for Medicaid HCBS, or Home and Community Based Services. We were excited about our move back to Kansas when told by community providers that funds and services were available to help support our grandson. Instead, he was put on an HCBS waiting list, unable to access services. We were never informed what “happened to all the waiver money” that was supposedly available after the Winfield closure.

After applying pressure on state agencies and community providers, we accessed waiver services, only to find that significant restrictions prevented implementing a successful program. For example, overlapping of staff was forbidden under the waiver. HCBS would not cover critical staff meetings, necessary to develop solutions for decreasing pervasive, maladaptive behaviors. Nor could we pay more than $8.00 per hour for direct staff under the waiver. 

Due to the self-injurious, aggressive, eloping, and other behaviors, direct support staff did not stay around long. We found ourselves continually recruiting, interviewing, and training new staff along with constant 24-7 “surveillance” of our grandson, making sure he did not escape out the door in the middle of the night. We were also exhausted and in crisis.

We found a unique solution during this time. In June of 2000 we became licensed, therapeutic foster parents, accessing a funding stream which paid a per diem, providing the flexibility to pay an incentive wage to direct support staff and hire professionals for support, oversight, staff training, and team meetings.

Many skills were gained over the next few years, until our grandson began the journey through puberty. In order to keep him and others safe on community outings, we had to maintain a 2 to 1 staff ratio. We were grateful we could do this, but when our precious young man became so strong and aggressive that I became afraid of him, our days with him at home were numbered.

At age 14, he was placed in what is now known as a Psychiatric Residential Treatment Facility (PRTF). Staff there were nice, but inadequately trained to handle the most challenging individuals they endeavored to serve. At that time our grandson began to lose skills, as the school there seemed ill-equipped to follow through with the intense behavioral program he enjoyed previously.

The PRTF also experienced staff oversight challenges; at one point we had to hot-line in suspected abuse. Shortly after that, the PRTF suddenly decided that Aidan was “stable”, and it was time to discharge him.

Everyone we approached in the community indicated they were not equipped to provide the intense levels of care necessary for Aidan’s success and safety, as well as the safety of support staff. That’s when we pursued an evaluation and medication wash at the Kansas Neurological Institute (KNI).

The state required us to thoroughly document that we had exhausted every community resource and option, which we did, but his doctor was extremely reluctant to sign on for his admission to KNI. After a year of struggles, prayers and convincing, he was admitted to KNI on a temporary basis.

The staff at KNI were wonderful. They were able to not only safely reduce the years-long, toxic mix of medications from five down to one, but KNI had already incorporated the Person Centered Care Model for several years. They developed a program for Aidan which included frequent community outings, exercise, grocery shopping, part time supported employment, etc. while addressing extreme behaviors.

After stabilization, we looked forward to re-integrating Aidan back into a community setting closer to home. As we looked at possible community options, we visited a number of single and duplex group homes. To our surprise, some were so poorly maintained that I would not have wanted to see a pet dog to live in some of these conditions. While this was disturbing enough, we were also shocked when numerous community providers refused to serve him.

Our grandson has lived on a campus of homes at the Kansas Neurological Institute for ten years; this facility has been a godsend, and has served him well. Aidan’s condition is also lifelong. As with many fragile developmentally disabled individuals affected with most complex conditions, he needs a level of care that is difficult to find, maintain, and oversee in a fragmented community system. The centralized care model is recognized as a needed alternative for some individuals in our Supreme Court’s Olmstead ruling, yet this important aspect of care is being dismantled by zealous advocates, most of whom have never lifted a finger to care for such profoundly disabled individuals.

I believe in community, and I also believe, as most rational-thinking people do, that Intensive Care Units in hospitals across the nation are a critical part of our health care system. Intermediate Care Facilities (ICFs) such as KNI are the Intensive Care Units for our DD loved ones. We should no sooner get rid of ICUs than we should ICFs. We need the full continuum of care.

Shall we devalue the lives of the weakest among us by continuing to close down the only providers capable of serving them? My husband and I say a resounding no! — joining with thousands of families across the nation who know firsthand what it takes to care for our most fragile citizens.  

Joan Kelley is the grandmother of a young man with a severe form of autism. She serves as the Kansas State Coordinator for VOR.



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Help, I Need Somebody (But Since I'm the Mom, the Answer Is No?)

A Kansas single mom of a severely autistic son discovers that the desperately needed supports denied to her are readily available to foster carers. Another tale from our broken system.

 
The author’s son enjoying a birthday outing.

The author’s son enjoying a birthday outing.

 

By Beneeta Dean-Felton

I am the proud mother to three beloved sons, the middle of whom has a severe form of autism. At 12 years old, Preston is nonverbal, is not potty trained, and already has the size and strength of a man, which is a problem because he can be aggressive. If he pushes you, you can’t stop him and if he runs away, you might not catch him.

A few years ago I moved from New Hampshire, where I had been teaching, to pursue a new teaching opportunity at the federal penitentiary in Leavenworth, Kansas. Of course I needed help at home, particularly before and after school when I needed to be at work and couldn’t physically be there for Preston. In Kansas, disability services are determined by the county. As it turned out, my area had the worst services in Kansas. Everything is contracted out, a decentralized system so complex it felt like a corn maze where you can’t find the end: calls that were not returned, year-long waiting lists, and already-full agencies. I have a three-page document that shows every single service I asked for and couldn’t obtain.

After pleading, the county office offered Medicaid and a before- and after- care assistant, contingent on my finding my own worker at $9.35 per hour, that would be paid through state Medicaid funds. I used every resource I could think of to find a worker: Facebook, Indeed, flyers and advertisement, you name it. I scheduled dozens of interviews. If I scheduled 30 interviews though, only about five people would show up. I did end up hiring two separate workers and in each case they worked one day and then quit. Working with a large aggressive child, really now a young man, was just too hard for $9.35 per hour.

I was then informed by our Medicaid insurer that if I didn’t try harder to find somebody they would take services away. They recommended an agency, but the first worker the agency sent quit after one day. Finally they sent a worker who stayed for three months. But the agency paid her late and their checks bounced, and she left as well. My employer reprimanded me for arriving late and leaving early from work, but I had no choice. I was then assigned to a job with strict hours and no access to my cell phone. The unbearable stress of my home and work situations took a huge toll on my mental and physical health. I asked the child welfare officer what else they could offer me. The answer was “There is nothing I can offer you.”

At one point I made the difficult but desperate decision to leave Preston at home in the care of his older brother who would put him on the school bus. Unfortunately, my eldest fell asleep and Preston eloped, ending up in the street naked (he hates clothes so much). I am obviously not proud of this episode and regret what happened, but in my experience almost every family with a severely autistic child experiences something very similar to this. The police took him to the hospital, and the Department of Child and Family Services asked if I wanted to put him in foster care. At that point that was my only option to get him services. Preston has now been in state custody in a foster home since November 2018. Even though this is not a case of abuse (instead, Preston is deemed a “child in need of care”), I am treated like a felon, allowed only weekly, one-hour supervised visits with him. 

During a case plan meeting, the foster home provider said she needed an array of services to care for Preston, including aide support, respite, and home therapy. And guess what, she got them. Wait a minute, I said, what do you mean she instantly gets these services I’ve been fighting to get for years now? The response? I’m not entitled because I’m the biological parent. 

This was complete lunacy. It seemed the state of Kansas would rather separate families, at incalculable emotional not to mention monetary expense, than offer needed support in the first place. It was a perverse penny-wise-pound-foolish situation. It also occurred to me that if I had moved just 20 miles away, to Missouri, I would not be in this predicament, we likely would have received appropriate services in the first place. Autism is like a game of lottery, you luck out or you don’t. And if you don’t your life can become a living hell.

Through this painful process my income was too high to get a court-appointed lawyer and I can’t afford a private lawyer. The judge in this case recognized the injustice of my situation and appointed me a lawyer. I am now working with him to figure out next steps. The best thing for Preston may be placement in a full-time residential school where he can have access to vocational services, social opportunities, a vocational farm, therapies and so much more than a foster home could. But he could also return home. If only I could get the help.

Beneeta Dean-Felton is the mother of three boys, one of whom has a severe form of autism. She lives in Leavenworth, Kansas.

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The Crisis Call No One Is Willing to Hear

A family’s trip through “the worst hellish nightmare you could ever have” and a system unprepared and unwilling to help.

 
The author, right, visiting with his son Joshua.

The author, right, visiting with his son Joshua.

 

By Vance Goforth

We begged for years for help to no avail. This is the story of our son Josh, who we adopted after he suffered severe abuse in infancy, and who has severe nonverbal autism, along with comorbid conditions like seizure disorder, cerebral palsy, bipolar and disruptive mood dysregulation disorder. He is now 18 years old.

The behaviors started in childhood. By eight years old, issues at school got progressively worse and he was put on home bound after they became so severe the school system couldn’t keep him safe anymore. We sought help through doctors and medications at first and then psychiatrists who recommended inpatient treatment ASAP. He was even accepted into a treatment facility only to be called the day before admission to be told that they couldn’t treat Josh because we owned a wheelchair and their facility wasn’t ADA compliant. 

Everything started escalating during a trip to town a few years ago, Josh got upset and kicked out our van window and tried to crawl out at 55 miles per hour.  I had to pull him back into our van and tried to keep him calm until we could get home. We decided to call a help number on my insurance card and see what they recommended. To our shock, they didn’t know what to do, so they called the Department of Children’s Services. DCS told us since this wasn’t an abuse case, if we didn’t see them in 48 hours then they weren’t coming. So there we were, making calls that no one knew what to do with and ended with us facing crisis level behaviors with no help.  

The behaviors kept escalating and he was targeting our youngest daughter to the point that she was hiding daily from his outbursts. The nightmares really started as we began to call for help again. As we called crisis during these behaviors, we heard statements like, “We’re not prepared for a child as low functioning as your son,” or “If your son was suicidal then we could help.” Yet again, crisis responders would leave and we were dealing with the severe outbursts on our own. 

We were advised multiple times to take Josh and “drop him off” at an ER department and let the state take custody. We were also told to get a divorce, because “it’s easier to get help if the parents are separated.” Needless to say, we didn’t want to call crisis after some of the interactions we had. 

Finally, we kept begging for help and the Tennessee Department of Intellectual and Developmental Disabilities came to our home and told us they would find us help. DIDD couldn’t offer us anything until Josh turned 22, so they called and set up an appointment with Children’s Services. We were nervous about this because of the reaction we had before but we agreed to go to a meeting.  

During this interview, we were asked why Josh was no longer welcome in our home. I explained that wasn’t the case, we just needed help desperately. They requested documents from us and I provided them and we never heard back from them. Joshua’s behaviors had become daily at this point and after two weeks, I called DIDD and asked why they told DCS that Josh was no longer welcome in our home. They said, “You don’t understand, if we didn’t report it that way, they will never help your family.” I was absolutely blown away after this, not only did we not get help, they never followed up on the situation and he was getting worse by the day.  

DIDD finally made a referral for Joshua to get into a new state program called ECF choices in July 2016. He was accepted into this program and we were told he would get respite care, in-home services and other therapies and resources as needed. We thought yes! We’re finally getting help! But days turned into weeks and weeks into months. My wife was sending emails to our coordinator begging for help but the reoccurring theme was “no providers available.”

From 2016 to May 2017, the behaviors increased exponentially and had become very dangerous with severe aggression and self-injurious behaviors. In May of 2017, we still had not received the promised services and I was out of town for a conference when I received a call that Josh had a severe outburst and my wife had no choice but to call crisis again. This time crisis said that Josh needed help but couldn’t find any facilities that had open beds. He was extremely helpful but every path he tried was a dead end. 

So he called DCS, and this did not go well for the situation. They came out while crisis was still at our home and began interviewing our other children on our back deck as they watched through the window as my wife was hit, slapped and kicked just trying to keep Josh from hurting himself. The crisis worker ended up apologizing for calling them because he said “I’ve never had an experience like this before,” and he couldn’t understand why the situation was being handled the way it was.   

The social workers “watched through the window as my wife was hit, slapped and kicked just trying to keep Josh from hurting himself.”

After all of this, my wife and family were left alone with no help after he got his meds and took a nap. The next day our coordinator said to meet her at a Knoxville hospital and they would get Josh treatment. My wife and father had to self-transport Josh even though we had voiced concerns about severe outbursts he had while we were driving. When they arrived, we were yet again turned away and told that the hospital couldn’t provide treatment. Even though they would not treat Josh, they didn’t want my wife to leave with him over safety concerns. They also advised taking him to an ER and discussed relinquishing custody in order to get help.  

Finally, they got Josh home and he was accepted to a hospital in Georgia the next day. Again, my family had to transport him because an ambulance service refused to do the transport due to his aggressive behaviors. He spent 12 days at this hospital and was sent home because “they witnessed no behaviors.” Four days later he was tearing our house apart and hurting himself severely. I made the call to get him back into the hospital but was informed, “it doesn’t work that way.” I was told he had to be turned down by every treatment facility in Tennessee, again. This process takes months and he was getting dangerously aggressive at this point.  

We were provided with ABA therapy at this point and it didn’t take long for our therapist to see that Josh needed residential treatment and that was what they recommended. Our therapist eventually resigned and we didn’t get ABA after that. We finally received one-third of the in-home services that he was supposed to get in September 2017 and the behaviors kept increasing over the next few months. He had got so severe that he had broken several teeth and had done over $17,000 worth of damage to our home and vehicles.

My wife and I had become increasingly isolated from everyone around us during this time and we struggled to keep everyone from seeing how severe our son’s behaviors had become. We basically had confined ourselves in our home, taking turns trying to minimize the behaviors as much as we could all while being told that help is on the way.   

I cannot even start to describe what life was like during December 2017 through February 12, 2018. The behaviors had reached a level that can only be described as the worst hellish nightmare you could ever have. To watch your child you love so much inflict so much harm upon himself is too much to bear. The strain this brings is indescribable and even that isn’t an accurate description.  

“To watch your child you love so much inflict so much harm upon himself is too much to bear. “

The stress was building day by day and on February 2, 2018, the nightmares went into overdrive. We were coping the best we could and trying to keep life as semi-normal as we could for our other four children. On that day, my wife Kristy had stayed with Josh while I took our other son Camden to workouts. I was on my way home when I received the phone call. At first the call was totally indistinguishable from all the screaming that was taking place. My heart sank as I tried desperately to find out what was happening, then I figured out it was one of my daughters that had called and finally I heard “It’s Josh” through the screams.  

It felt like a shock of electricity went through me before I went completely numb. I had no idea what was going on but I was trying desperately to just get home. I was crying and praying as I drove as fast as I could and Camden was crying hysterically and begging God to help his brother. I actually arrived before the first responders and as I ran in the house, Josh had just stopped having the most severe seizure we had ever witnessed. Kristy had called 911 when the seizure kept going to the point that Josh quit breathing and turned blue. He gasped for air and started breathing again just seconds before I arrived home.  

Whatever happened during this seizure changed Josh and the behaviors became even more amplified than before. Over the next ten days, I can’t even say we were handling the outbursts because that would be a lie. The behaviors reached a fever pitch that ended with extensive injuries to myself and Josh. 

“The behaviors reached a fever pitch that ended with extensive injuries to myself and Josh.” Here, two photos of the author after a series of his son’s aggressions.

“The behaviors reached a fever pitch that ended with extensive injuries to myself and Josh.” Here, two photos of the author after a series of his son’s aggressions.

Josh would bite his wrist until it was almost down to bone and began breaking all of his teeth off by hitting his head on the floor and walls, and hitting his hand while biting it. I was bitten over 50 times during three different outbursts and received lacerations, bruises and a severe black eye that may have caused permanent damage. Josh had extensive injuries from the self-injurious behaviors and was not calming down at all. We visited two different ER departments during these outbursts and mobile crisis was contacted twice. Mobile crisis never did the face to face evaluation that is required by state guidelines. 

We took Josh back to his doctor the next morning after being in ER rooms all night and his doctor forced the issue and made crisis respond. Josh was eventually transferred after a three-day stay in another ER room but we had to get lawyers and judges involved just to get the treatment he needed. After a few weeks and multiple legal issues he was transferred from Georgia, where they had said before he wasn’t having issues, to South Carolina where they recognized the severity of the behaviors. He has been in treatment there for 14 months now. 

Joshua is making improvements in his residential program. It took many years of traumatic dead ends before he received appropriate treatment.

Joshua is making improvements in his residential program. It took many years of traumatic dead ends before he received appropriate treatment.

When Josh finally received the needed treatment, he started slowly making progress. Springbrook has been amazing and not only treated our son but also encouraged and gave advice to the whole family. After 14 months of treatment, Josh is scheduled to be the first resident in a new experimental housing program in Tennessee. Hopefully he will be ready for this program within the next month or two.

Without naming organizations specifically, here are just a few things we have been told while seeking help for Joshua.

1) If your son was suicidal we could help, but since he is so low functioning we are unprepared for a child like Joshua.

2) Your best option may be to drop your son off at a emergency room. (Basically telling us to abandon him! Yes, this was really suggested to us and more than once!)

3) You’re approved for certain services but they aren’t available in your area.

4) Your behavior analyst quit and you will not have these services anymore because one isn’t available in your area now.

5) You can’t get the services you are requesting because your son is a minor.

6) You are approved for respite care but it’s not available to minors.

7) Your son can’t go into residential care because he is a minor.

8 ) You have 24 hours to pick up your son or you will be charged with abandonment. While another agency is telling you he can’t return home until he is treated and is stable.

9) Every facility in the state must deny admission for your son before you are eligible.

10) We can’t take your son because our facility is not ADA compliant.

11) We can’t take your son because this is not an abuse case.

12) If we separate or get divorced we might get priority for services for our son.

And the list goes on. Is everyone seeing the need for changes to the system yet? —VG

We were in pure survival mode for so long, we didn’t know how much all of this had affected our other children and family members. Joshua’s siblings love him dearly and were quietly trying to deal with the situation as they watched things that no child should have to ever witness. After Josh was in treatment a few weeks, they began to open up to us about everything and it hit us like a ton of bricks. We were so consumed by managing the behaviors and keeping everyone safe, that we didn’t realize how much the stress was affecting all of us. Slowly but surely, the kids began to heal from all of the trauma and we started seeing improvement in school and other activities.

After Josh finally got the treatment he needed, we created a Facebook page, A Voice for Joshua. I was determined that I would advocate for issues affecting individuals like Josh who have severe ASD and comorbid conditions. I’m not the most eloquent speaker and my posts are usually more solutions-oriented than other bloggers who can effectively pull on heartstrings, but I’m determined to keep advocating and sharing his story until needed changes take place.  

Please join us in this journey and advocate for Josh and others who face desperate situations without appropriate resources and services.

Vance Goforth is the father of five who lives in Tennessee. You can find A Voice for Joshua at facebook.com/pg/changeforjosh

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Autism's Quiet Heroes: The Siblings

 
Photo of Zoe courtesy of the author

Photo of Zoe courtesy of the author

By Melissa Collins-Porter

For this year’s autism awareness month, I’d like to honor and celebrate the siblings. They love their brothers or sisters fiercely, yet quietly endure being dragged to therapists’ offices and doctor appointments, become basically ABA-certified by the time they’re 12, and get used to only Mom or Dad coming to their events because one has to stay with their sibling. They often are forced to concentrate on homework amidst what reasonable people would call total chaos. From a young age, they have an awareness that at some point, they will likely become caregivers to their sibling. They may feel guilt about the fullness of their own lives (friends, sports, activities, travel, independence, college) in contrast to that of their sibling. They may feel pressure to be “the quiet one,” “the good one,” “the easy one.” They have become used to cancelled plans, destroyed or lost personal items, and giving up their own preferences to appease their brother or sister. They tirelessly stand up for their siblings when people ask questions, stare, or use “autistic” as a pejorative at school. Underestimate them at your peril, because they grow up to be extraordinary adults and you want them on your side. This one right here is my hero.

The writer is a filmmaker who lives in Southern California.

 

Federal Bill Would Put Jobs Out of Reach for Severely Autistic Adults

Everybody should have access to work, but a new bill, based on the fantasy that all intellectually disabled adults could achieve competitive employment, would trash cherished job programs for the severely disabled. 

 
Jonny+SCU+volunteer.jpg
 

Under the Transformation to Competitive Employment Act, the author’s 20 year-old severely autistic son, and countless others like him, will be relegated to the status of permanent volunteers, effectively prohibited from landing paid employment.

By Jill Escher

My son Jonathan is a delightful nonverbal autistic 20 year-old man. Powerfully built, he has a supercharged energy and a deep well of affection for loved ones and his iTunes library. But Jonny is also profoundly intellectually impaired. Accomplishing even simple tasks requires vigorous prompting and continuous oversight, and chances are that along the way he might bite, stand on, or even throw his chair. As muscular and lovable though he may be, his chances of landing a competitive job are exactly zero.

The TCEA was introduced on January 29, 2019 by Congressman Bobby Scott (D-VA-3), chairman of the House Education and Labor Committee, Senator Bob Casey (D-PA), and Rep. Cathy McMorris Rodgers (R-WA-5).

Nevertheless I can envision that some day Jonny could participate in a disability program engaging in simple but important work (albeit with hawk-like oversight and prompting), perhaps boxing or moving heavy objects, or picking up garbage. But under a federal bill introduced in January, Jonny’s hope for future wage-earning would be thoroughly trashed. 

The Transformation to Competitive Employment Act (TCEA) (S. 260 and H.R. 873) would, over a period of six years, completely phase out disability-specific sub-minimum wage programs, even those serving the severely cognitively disabled who would otherwise be unable to access work. The bill would also provide a grant program to help expand capacity for those capable of achieving competitive employment.

Listen, the TCEA is in part addressing an important issue. Section 14(c) of the Fair Labor Standards Act, which authorizes employers to pay specially tailored wages to employees with disabilities in certain restricted circumstances, has at times been abused by bad-apple employers to pay disabled employees less than they were worth. Though affecting a small portion of the 14(c) programs, the exploitation was indeed something to be remedied. The TCEA offers some needed fixes to our labor system by ensuring these workers have a way to move out of 14(c)  programs and into competitive integrated employment. Amen to this wage justice.

But for the more impaired portion of the disability community, the 14(c) program fills an urgent need. It is simply inconceivable that a commercial employer would willingly hire someone like Jonny, who cannot talk, read, or write, and at best can follow only one-step directions, over a non disabled person whose productivity is ten times greater and who is unlikely to chew the furniture.

Some disability advocates are telling lawmakers that all people no matter how disabled can find integrated, competitive employment. Please. Just stop. I don’t know what these advocates have been smoking to spout such fantasies, but clearly they are not spending much time with guys like mine, nor have they ever tried to employ them.

So it should be clear to any fair-minded person that the TCEA risks throwing the jobs baby out with the social justice bathwater. Beyond its preposterous assumption that all disabilities are created equal, let’s look at some other problems with the bill: 

In addition to the TCEA, the Raise the Wage Act, H.R. 582 and S.150, also contains provisions to close 14(c) options. It is also sponsored by Bobby Scott (D-VA). This bill is tied to the movement to raise the federal minimum wage, so it has many more sponsors (currently 204, versus 20 for the TCEA).

  • The TCEA ignores the staggering increase in severe autism and what should be a clear imperative to create vastly more, not fewer, options for day programing and supported forms of employment. In California, the population of adults with developmental disability type of autism will grow nearly five-fold over the next 20 years. Only a small portion of these adults can achieve competitive employment. The rest? We need to maximize their options, including work that pays special wages based on less-than-competitive productivity. 

  • The TCEA dodges the obvious fact that subminimum wage work is but one benefit accruing to the significantly disabled clients. Work programs serving adults with significant intellectual disabilities like Jonny are typically run by mission-driven, not profit-driven, nonprofit organizations. These adults are typically also beneficiaries of supervision, therapeutic care, training, and social and recreational programs funded and provided by the nonprofits. It can be very costly to serve these disabled individuals: they often require high staff ratios, intensive supervision, crisis intervention and ongoing coaching. A standard job supervisor is unlikely to treat seizures, change diapers, or handle getting punched or scratched, to put it mildly. The extremely valuable, though non-monetary, therapeutic dimensions should be considered before over-simplistically labeling subminimum wages as discriminatory.

  • 14(c) programs serving the significantly intellectually disabled provide a protected form of employment unavailable in the free market. “It’s not an employer-employee relationship,” explains Tracey Brown-May, Director of Advocacy, Board, and Government Relations at Opportunity Village in Las Vegas. “People employed here who are earning 14(c) wages are not at risk of being fired.” In other words, the employee’s needs comes first, and profitability is not the prime endpoint. The nonprofit work is typically tailored to the particular skillset of the worker, a customization unavailable in the free labor market where individuals are expected to conform to pre-established performance standards. Disability advocates often accuse 14(c) wage program of exploiting or abusing their disabled workers, but at least for severely challenged adults, the opposite is almost always true— the programs often protect clients from exploitation and abuse by offering a protected form of employment.

  • No person with a disability is forced into 14(c) work, and wages are set carefully. The provision authorizes employers to pay specially tailored wages to employees with disabilities only when the employer can demonstrate, through an exacting certification process, that the worker’s productivity is compromised by the disability. The certification requires a careful calculation of fair wages based on productivity and continuous re-evaluation of the employee’s capacities to ensure wages keep pace with skills. And of course the worker would also need to agree to the wage. Programs must be re-certified every two years by the Department of Labor, which has the duty to identify and remedy any abuse or exploitation it finds during its reviews. 

  • Most workers with disabilities, for example physical disabilities, are already in the competitive market. Retaining a 14(c) option does nothing to negate or undermine expansion of competitive employment for those capable of that option. Both work options can and should peacefully coexist to serve a dramatically diverse disability population. As Harris Capps, the father Matthew, who loves his job in a Ohio work center, asked, "Why do higher functioning disabled persons and their lobbying organizations want to deny lower functioning persons, the right to work? If a higher functioning individual is able to get a job providing a mandated minimum wage, surely, they already have the minimum wage law in effect to protect them.”

Matt Capps at PERCO.JPG

Loves his job: Matthew Capps loves nothing more than to report for work. But the TCEA is putting his job, and thousands of others, at risk.

  • Not supported by data. Data from states that have closed their sheltered workshops do not necessarily demonstrate a correlated increase in competitive, minimum-wage employment. In Maine, two-thirds of former workshop participants are now unemployed. Those adults with I/DD who do have jobs work only an average of twelve hours a week, which is the lowest average in the country. In Washington state, more than 80% of those with severe cognitive impairments remain unemployed. Vermont reports fewer adults with I/DD in supported employment since closing its sheltered workshops in 2002. In short, when sheltered workshops close, participants often end up idle at home, lonely and unemployed, or if they work at all, with decreased job hours and decreased total wages. The other alternative — volunteer work in the community — can sometimes provide community, engagement and pride, but in reality, volunteering for commercial employers often suffers the same challenge as competitive employment: that option does not offer the support needed.

Every family affected by severe autism should know about the TCEA and oppose it in its current form. While federal policy should certainly promote opportunities for competitive employment when possible, guess what — our pizza can have both pepperoni and mushrooms. Let’s expand capacity for competitive wages using the planned federal grants, while also retaining vital options for our severely disabled loved ones.

As Opportunity Village’s Brown-May says, if 14(c) is phased out, “employment opportunities will go away for people with a very significant level of disability. They are the people who will get hurt.”

Jill Escher is President of the National Council on Severe Autism, President of Autism Society San Francisco Bay Area, and founder of the Escher Fund for Autism. She is the mother of two children disabled by nonverbal forms of autism.

See NCSA Position Statement on Vocational Options: ncsautism.org/vocational-options


A Federal Policy Victory for Adults with Autism

A 2014 Medicaid guidance, now withdrawn, had the effect of substantially restricting program and residential choices for autistic adults precisely at a time of surging need for new options.

 
Amy Lutz, now NCSA’s secretary, discussed the problems with the former Medicaid guidance in the article,  Who Decides Where Autistic Adults Live?  published in  The Atlantic .

Amy Lutz, now NCSA’s secretary, discussed the problems with the former Medicaid guidance in the article, Who Decides Where Autistic Adults Live? published in The Atlantic.

 

We are pleased to inform you of a significant policy victory for adults with autism.

The surging population of young adults disabled by autism is creating unprecedented demand for a wide spectrum of supportive programs and residential options across all our communities. 

NCSA will update this page soon with more details about the CMS guidance.

Together for Choice press release here

Many of these options will be funded in part through federal “Medicaid HCBS waiver” dollars. This is federal money designed to subsidize services in one’s own home or one’s own community, and outside of state institutions.

In 2014, Medicaid’s administrators, the Center for Medicare & Medicaid Services (CMS), surprised the developmental disability community by issuing a sub-regulatory guidance that has had the effect of substantially restricting program and residential options for adults with autism and other DDs. The guidance targeted farmsteads, disability-specific communities, residential schools, campus models and other intentional communities as “isolating,” and therefore presumptively noncompliant with the CMS regulations, a presumption that could be overcome only after an opaque process called “heightened scrutiny.”

Fortunately for our community, this past Friday CMS issued new HCBS guidance which supersedes the previous guidance. You can view the new policy here, which is written in FAQ form. Advocates spoke with CMS staff on Friday and confirmed the following:

  • Settings described in previous guidance are no longer presumed institutional nor isolating and will no longer be forced to go through heightened scrutiny if the state determines the setting is compliant with the HCBS Final Rule.

  • Consumer-controlled settings are presumed compliant.

  • Settings previously submitted for heightened scrutiny may no longer need to go through the heightened scrutiny process if the state determines it is compliant or can become compliant by July 2020.

  • The role of an individual’s person-centered plan is paramount in guiding services, their home preferences, and access to the greater community.

  • The new guidance is outcome-oriented and focuses on the setting’s facilitation of community engagement as described in one’s person-centered plan.

This welcome development will help our community mobilize as many options as possible for our burgeoning and incredibly diverse population disabled with autism. We will update this page soon with additional information, but in the meantime for background information please see:

  •  “You Can Choose Where You Want to Live... Unless You Have Autism" by Jill Escher. 

    NCSA thanks all the autism and disability advocates who pressed for common sense, person-centered policy changes, and who fought draconian rules that would have privileged a segment of the disability community at the expense of others, particularly those in need of strong supports.