Sunday, June 6, 2021

The ABA autism industry needs to be abolished, but please stop with the "abuse and neglect" language

I recently wrote about how the ABA autism industry needs to be abolished, while at the same time we need to take care to keep an intersectional view and recognize that many families do not have the privilege to decline recommended services.

Another pattern I am seeing in ABA abolition advocacy that lacks intersectionality is the practice of referring to ABA as "abuse and neglect." Now, I absolutely understand from a clinical standpoint why someone would view these practices this way. There are very much practices in the ABA autism industry that are demonstrated to cause long-lasting harm. There is much documentation of therapists engaging in the same practices that have in other separate instances resulted in an abuse/neglect finding when carried out by various parents unrelated to ABA (force-feeding, extended seclusion/ignoring, withholding of food/restroom, etc.) There is no question that this industry engages in harmful practices.

The problem comes when we refer to the entire industry as abusive while failing to understand the child welfare system and the very real and serious risks it poses to poorer families, browner families, and disabled parents. 

As a clinician, I recognize that there exists a wide range of parenting and caregiving practices that could make sense to call abusive or neglectful from a clinical standpoint, but which do not rise to the level of abuse or neglect in which legal intervention would be warranted. (For the purposes of this discussion, I am not currently going to discuss CPS overreach and the widespread problems with non-abusive families being involved with CPS for reasons of racism and poverty, nor will I discuss movements to abolish the current system in favor of proactive and collaborative community-led programming. I am referring here to situations in which legal intervention is truly needed in order to ensure safety of a child.) 

When I am in the role of working with someone 18 or over who discusses having been abused or neglected as a child, my response is to listen and allow the individual to control this narrative. It does not generally matter at this point what language the person is using; it matters what their experience was.

However, when I am working in a role involving minor children, or in policy or other discussions involving minor children, this language absolutely does matter. It is highly problematic to refer to ineffective or questionable parenting as abuse and neglect when there is currently a minor child involved, as this can result in unnecessary and traumatic child welfare involvement. It has been well demonstrated that the child welfare system is rife with patterns of racism and classism at every level (reporting, screening, investigating, supporting, removal, and reunification), and is has been well demonstrated that any contact with this system is highly traumatic and destabilizing for children and parents. It has also been well demonstrated that "better safe than sorry" practices are harmful both to the non-abusive families as well as to victimized children who are not able to receive help because resources are misallocated in a system in which only a single-digit percentage of reports turn out to be abuse (and even fewer of those would hold up in court as such). 

Another thing to understand about the child welfare system is how allegations are documented and screened. In order to screen in a situation for investigation, an "alleged perpetrator" must be named. For anyone who is still on the fence about "better safe than sorry" or "just to make sure services are in place" usage of this system, what this means is that in order to contact the child welfare system with a concern that a child/family "might be in need of further services," a reporter needs to list an alleged perpetrator, who must be someone considered a caregiver for the child. If the reporter states they are not alleging abuse or neglect, or states they are not blaming anyone, the screener nonetheless takes the report, alleging (usually) neglect, and lists the child's parent as the alleged perpetrator. If anyone still thinks this is a system "to make sure services are in place," please know there is no such option for doing this, because that is not what the system is legally tasked with doing. There are ample voluntary community-led programs that put services in place. 

I have sat in meetings as a clinician in which a DCF investigator explains to the family "no one is accusing you of anything; we are just wanting to make sure appropriate services are in place." In the meetings in which the family was fortunate enough to have an attorney (unless the family can private-pay an attorney, in Massachusetts this generally means only families where a child in the family already is in DCF custody), the attorney has informed the investigator that it is problematic if that is how they are viewing the situation, as the legal role of the investigator is to determine whether a caregiver has abused or neglected the child, not "whether appropriate services are in place." (A family has the legal right to have their child involved in considerably fewer services than most of us would agree are ideal, as long as their inaction is not causing or highly likely to cause the child significant lifelong harm.) Also, the report having been screened in requires that DCF has alleged abuse or neglect with the caregiver listed as alleged perpetrator, so someone is being accused of something. 

So, back to how this relates to ABA. More and more, I am seeing well-meaning folks in their ABA abolition advocacy stating that things like behavior charts, time-outs, rewards, withholding any preferred item or activity, first-work-then-fun practices, and general participation in ABA are "abuse and neglect." Again, I get the sentiment. I am right with y'all in knowing why primarily behavioral systems of teaching and parenting are not trauma-informed and not the best choice. 

Language matters though. In the presence of a child welfare system that can do so much harm if misused or carelessly employed, we as clinicians and as members of the public need to be very cautious to not refer to anything occurring in a family (with or without the encouragement of an ABA program) as abuse or neglect, unless we truly feel legal intervention is needed for the safety of the child. I have a real problem with sentiments such as that "withholding any preferred item or activity is abuse." While I fully agree it shouldn't be done by a therapist unless done in a really supportive/collaborative "hey let's see if you can get through this hard thing" type of way, I am not comfortable with a view that means a parent who takes away TV privileges until chores are done or takes away a child's electronics for whatever reason should have the legal system intervene in their family. 

For anyone who thinks this is hyperbole, and of course this isn't what is being discussed, this shows immense privilege. As someone living and working in a mixed-income, primarily Black and brown community, I can tell you it's disturbingly common for young childless white "professionals" to call in reports for anything that isn't "gentle parenting" enough for them. (FWIW, I think gentle parenting itself is great; the sanctimony around it and lack of recognizing that some families have much higher stakes than others is the issue.) A lot of these reports are supported, even though most wouldn't hold up if families could afford private attorneys to appeal them. 

The other side of this is that part of a child welfare investigation is to assess how the family disciplines their children. They are not only looking for overly harsh discipline, but also will note if a family does not seem to have a structured-enough model for discipline. While this is legally massive overreach unless a lack of limit-setting is resulting in injuries or similar, it is absolutely something that I do see occur. Families are indicated for neglect due to "lack of structure" and "lack of limit-setting" if they practice gentle/constructive discipline but lack the white social worker language and mannerisms to explain this in the way that I can. With this kind of reality hanging over the heads of poorer and browner families, I honestly would encourage families to have some sort of gentle structure for discipline that they can mention when their pediatrician asks and that their children can discuss if the topic comes up during a school discussion. White middle-class families might have the luxury of their children answering "I don't" when asked "what happens when you get in trouble?," but other families do not. Most poorer and browner families have many reasons in favor of having a protocol of infrequently asking their child to take a break in their room. 

What about viewing participation in ABA itself as abuse/neglect? Remember the "alleged perpetrator" construct? If someone reports a family for participating in ABA, and they cite the problems as things like coercion and manipulation, the parent is going to be listed as the alleged perpetrator, particularly if the therapist is never with the child without the parent in the home. The parent is still the caregiver, and the parent has authorized the services. The therapist would usually not be implicated, unless something like sexual abuse or felony-level physical abuse is alleged. And even if the therapist is listed as the alleged perpetrator (i.e., was deemed to be the caregiver in charge at the time), the parent would likely also be added as an alleged perpetrator due to "choosing unsuitable caregiver."

The bottom line here is that Black and brown parents, poorer parents, and disabled parents just do not need anything said or documented anywhere that suggests abuse or neglect is going on on their watch or via a caregiver they have selected. The stakes are just too high. 

There are a number of other constructs we can use that only apply to healthcare providers' behavior that can address this. The methods being used are often unethical, ineffective, not trauma-informed, and not-evidence-based (to my knowledge, there has been no large-scale research of ABA that compares it to the same number of hours of other types of teaching or therapy, nor that looks at acquisition of a full range of healthy and useful life skills rather than effectiveness at teaching autistics to mask autistic traits). There is emerging research that ABA causes anxiety and a poor self-concept. These are things to bring up when advocating that insurance companies stop funding it and fund better alternatives, that other professionals stop recommending it, and that the industry be shut down. But stating or suggesting that there is abuse and neglect going on in the homes of parents who might lack the privilege to decline ABA is not the way to go about this. We need to do better with our intersectionality. 

Saturday, June 5, 2021

The ABA autism industry needs to be abolished, but the discussions about it need to be intersectional

I don't need to reiterate here how the ABA autism industry has a primary aim of getting autistic folks to act neurotypical, relies on manipulation and coercion, and is harmful to autistic folks. If this is unfamiliar to you, please do a quick google search and listen to the many autistic voices who tell us this, rather than relying on a neurotypical clinician's take on it.

With that aside, I do want to discuss how most of the discussions I see about "never ABA" by clinicians, autistic folks, and autistic clinicians are almost entirely taking place among white, middle-class-passing, non-disabled-passing folks. These are people who have the privilege to decline a service recommended by medical teams with little risk that their children will be taken from them. These are people who largely are not relying on subsidized housing or subsidized child care that they can easily lose if their child cannot follow certain expectations or is seen to be "not participating in services." I should clarify that I know plenty of Black and brown visibly disabled autistic and otherwise neurodivergent folks who speak out about the ABA industry and the harms it does, but I have not witnessed these folks promoting the idea that all families are free to decline services recommended to them. 

There is currently a huge systemic problem in the US in that private and public insurance providers will cover hours upon hours of ABA for minors with an autism diagnosis, while often covering very little else. This is the problem that needs to be addressed.

But while this is still the case, we have situations such as these (all of these are types of situations I have witnessed in my work or from friends and family, with details changed and some composites formed in order to not be personally identifiable):

Tamara is a Black autistic two-year-old who attends a subsidized child care program while her single mother Angie works. Tamara sometimes becomes overwhelmed during transition times and runs out of the classroom. The teachers cannot legally leave the classroom with her and remain in their prescribed/funded student:teacher ratio. With a 1:1 aide who can help her clean up and get her things ready a few minutes before her peers, take some breaths and squeeze a preferred toy to feel regulated, and go with her to step out of the classroom before her peers transition, she is content and successful and has no instances of running off or otherwise presenting a safety or supervision concern. The child care center does not have the funding to provide her with a 1:1 aide, nor is it legally obligated to do so. Her state does not provide any type of insurance or other funding for 1:1 aides. Her state does provide up to 40 hours per week of ABA services. Angie has enlisted an ABA therapist to remain with Tamara at child care so she can continue to attend. The ABA therapist also helps throughout the day with breaks, visual schedules, and so forth to accommodate Tamara.

Before anyone tells me that this program is billing something as ABA that is not in fact ABA, what the therapist is doing is actually a textbook ABA intervention. Chaotic transitions are an antecedent to the behavior of running off. Removing the antecedent results in the behavior no longer being necessary for the individual. While I don't see this type of ABA approach much by the ABA autism industry, it is textbook ABA and appropriate to be billed as such (as are things like task analysis, scaffolding, prompting, that all good teachers and therapists are using when needed). Again, while the ABA industry and its culture of ableism absolutely needs to be shut down, behaviorism itself just is a way to describe human behavior that we all engage in. All clinicians work based on an understanding of behavior; hopefully most of us are doing this in affirming ways that would not jump out as "behaviorism."

Braeden is a white autistic 9-year-old. His mother, Rain, received an autism diagnosis in her 40s after Braeden was diagnosed and she recognized their similarities. Rain is a self-employed graphic artist who works from home in an upper-middle-class community. Braeden was recommended a number of therapies as a young child. Rain tried some of these briefly, but found them rigid and found that Braeden was often frustrated by them. Rain now proudly describes their life as "therapy-free" and describes Braeden as a "radical unschooler" who participates in homeschooling using no curriculum, few structured classes or activities, and spends his days involved in exploring his own interests. Rain writes a popular blog promoting unschooling and rejection of all therapies. She belongs to several online radical unschooling groups made up of nearly all upper-middle-class white parents. The family's pediatrician has at a few points mentioned available therapies and suggested resources such as testing to monitor academic progress, but Rain has provided her with unschooling literature and articles about neurodiversity, and the pediatrician has been satisfied with this.

Joshua is a Black autistic 4-year-old. His mother, Tania, suspects she is probably also autistic. She mentioned this to her family physician and was immediately diagnosed with a personality disorder and denied a referral for an evaluation. Tania works from home doing electronic insurance billing for a local community health center and maintains the family right above the poverty level. Joshua has been recommended a number of therapies and placement in special education preschool. Tania has tried some of these therapies briefly, but found them rigid and found that Joshua was often frustrated by them. She has rejected the IEP and preschool placement as it was heavily behaviorally based and she could not imagine sending Joshua there. Tania has joined online homeschooling groups and is currently homeschooling Joshua using a commercial homeschooling curriculum she is able to adapt and use flexibly. He participates in music lessons, martial arts, and some online and in-person homeschool classes. The family physician asked Tania about Joshua's schooling. She talked about Joshua's routines and explained all the information she has found out about homeschooling and neurodiversity. The family physician reported the family to child services for neglect. The family was investigated and their report indicated that Joshua attends no schooling, the family is refusing recommended therapeutic services, and Tania makes off-topic remarks and appears to have mental illness. The neglect report was substantiated and the family was given a service plan requiring that Joshua attend public school and participate in home-based ABA services, and she participate in psychiatric services. Tania lost her job due to the CPS case showing on her background check and has had to take a lower-paying job at an employer that does not work with children. 

The similarities in these stories are not a coincidence; I have worked with a number of homeschooling families in various roles, and have seen these exact patterns, including a neglect finding for homeschooling a child below compulsory school age as well as investigation reports that do not mention homeschooling whatsoever and just say the child does not attend school. The patterns around professionals recognizing wealthy white folks as autistic or similarly neurodivergent while failing to recognize this in poorer and browner folks also plays out frequently in situations I see that are so similar to each other aside from demographics. The first vignette is not made of any families I have seen clinically, for what should be obvious reasons, but rather of several families I have encountered in the broader homeschooling and neurodiversity communities (who often are the ones who loudly proclaim everyone can just refuse all services). 

Alex is an autistic 10-year-old. They live in a subsidized high-rise building with their Central American immigrant parents who both have an elementary-level education. Alex will sometimes yell if something loud and unexpected happens, such as a siren or loud car radio going by. They are not distressed for long, are easily comforted by their parents, and have a healthy attitude in which they make jokes about how they startle easily and that's just how they are. When other children get into their space on the building's playground, Alex will scream at them. Alex's family has been written up by building management for Alex yelling during "quiet hours" and screaming at other children. Alex's parents have explained that Alex would be fine on the playground if peers respected their requests for space and have explained that the shouting at night is no different from other inevitable noises in a housing development, but the management does not listen, is afraid Alex will be aggressive or cause problems, and has referred them to the housing authority social worker. The social worker is requiring that Alex and his family receive therapeutic services in order to maintain their housing. Alex's parents also know the housing authority will also report them to child services for not complying. Alex's parents call the community agencies that take Medicaid to ask about psychotherapy, but the agency states the only program they have that works with autistic children is an ABA program. Alex's parents seek an evaluation from this program, which recommends the same things the family is already doing (sensory and coping strategies for re-regulating after sudden noises, practicing telling peers they do not like people to be too close) and states Alex shows no concerns for aggressive behavior. A person with letters after her name has now written an evaluation stating the same things that Alex's parents have told the housing authority, and they have listened to this person and eased up. However, the social worker verifies with Alex's parents that they will of course be doing the recommended therapy. Alex's parents don't really have much of a choice, so they agree to it. The ABA therapist comes three afternoons per week for two hours and mainly just reassures Alex and helps break down tasks as they do their homework and chores – really the exact same things Alex's parents have always done, but they now have professional reports in formal language stating that Alex is getting therapeutic support. The program they have found doesn't have any particularly new insights or really much to offer, and Alex's parents aren't crazy about the sticker charts, but they do defer to the family about goals to work on and do not insist they work with Alex out of their parents' view.

We can see the myriad systemic injustices here. There are so many things wrong with what leads us to the family being in this situation. Still, they make the choice most families would make given this set of circumstances. Because of racism and classism, the family needs someone with professional credentials to state their child is fine and harmless, which was not respected when the family stated this. Because of the intersection of ableism with racism and classism, the family is constantly under the watch of systems, where people generally have a viewpoint that anyone who is atypical in any way needs to be in formal services and that any "unusual" behavior needs to be cured even though it is not particularly limiting or distressing the person. There is also the widely held racist and classist view that poorer and browner folks need to be under the supervision of largely white professionals in order for their children to be properly cared for. We need to recognize that many families just do not have the privilege to decline recommended services. Rather than focusing advocacy on a position that families should be the ones responsible for declining problematic services, we need to focus on getting the problematic industries themselves shut down, as well as focusing on the larger systemic issues that leave families without a real option to decline.

Friday, June 4, 2021

BCBS waiving cost-share during pandemic, but this is actually a disservice to people with Masshealth as a secondary

From BCBS website

Out-of-pocket COVID-19 costs are waived Telehealth costs for all covered services are waived All members can talk to a licensed doctor or provider from the comfort and safety of home, limiting the potential exposure to, and spread of, the virus. For the duration of the Massachusetts Public health emergency, we’ve waived member cost share* (copayments, co-insurance and deductibles) for all covered medically necessary medical and mental health services, provided via phone or video (telehealth) with in-network providers.  Call your provider to request remote visits by phone or video, and your claims will be processed to reflect these waived costs.* Members with our telehealth benefit are encouraged to use our Well Connection platform.  For Medicare HMO Blue and Medicare PPO Blue members: For Medicare HMO Blue and Medicare PPO Blue members: Until further notice, telehealth cost share will be waived for primary care visits, urgently needed visits, health risk assessments and outpatient mental health visits. In addition, cost share will be waived for telehealth visits by a specialist if the visit is related to COVID-19.  *Benefits may vary by plan

I spoke to someone in customer service, and what this means is that they are not charging any copays or 80/20 split for any telehealth services through July 1.

For people who have Masshealth as a secondary insurance, which is most children of low/moderate income, and many people with disabilities, what usually happens is that for services performed by providers who take both BCBS and Masshealth, the copay is billed to Masshealth. The BCBS deductible is then met through payments that come from Masshealth rather than the family. A sizable number of folks in my circle who have minor children with extensive needs purchase a child-only PPO plan from BCBS, which will reimburse at 80% pretty much any service for which the provider provides a proper bill regardless of whether they participate in insurance plans. I also know adults who purchase an individual BCBS plan in addition to their Masshealth plan. Child-only PPO plans are around $400 per month and adult individual plans are around $700. This allows people to get speech therapy, neuropsych evals, trauma treatment, occupational therapy, etc. from providers who do not directly bill insurance. 

What most of us do is schedule hospital-based visits (and especially the expensive ones...) like neurology and genetics as early as we can during the year. We don't pay anything out of pocket for the visits because Masshealth covers the out-of-pocket charges and the deductible gets largely met by these in-network visits. We then start getting reimbursed at 80% for private therapy services for the rest of the year. 

This year, BCBS is doing us a "favor" by not charging any co-pays or cost sharing. But what this means is that nothing is getting charged to Masshealth thus not going toward the deductible. So it's helping the families who make enough to not have a connector plan and who don't have disabilities and extensive costs, but is actually making it so the rest of us have an extra $5000 or so in out-of-pocket health costs this year. I asked and there is no way to opt out of this "favor." This is yet another example of why these decisions need to be made with people around the table who are low income, people with disabilities, etc. 

Of course, this was less annoying before Masshealth premium assistance stopped allowing members to use premium assistance for privately purchased plans a few years ago. I still don't understand the logic behind that; Masshealth was able to get out of paying most of a member's costs for only $300 a month or whatever it was that they reimbursed us for having the private plan. They now only offer this for people who have access to employer-sponsored plans (which are rarely PPO plans).