Why Blaming the System Isn’t Good Enough: Prioritizing Autistic Rights from Intake to Treatment
When I applied on the behalf of Resonate Music Therapy to become a Colorado state Medicaid waiver provider (Program Approved Service Provider: PASA), the state made sure the practice followed stringent rules and regulations. Our therapists had to develop a multi page document that outlined multiple scenarios or policies:
Procedures for filing a complaint with the state
Client rights
Safeguards on how Resonate Music Therapy would prevent mistreatment, abuse, neglect, and exploitation (MANE)
Guidelines for confidentiality
Essentially, the state system makes sure all medicaid providers adhere to their policies. Technically, these documents are created by the practices themselves, but the state requires specific language be included.
One important legal category covers the use of restraints. Practices must clearly define who can implement mechanical or physical restraints, what restraints can be used, for how long, and in what manner. At Resonate, we do not use restraints in sessions. Our staff is not trained in them, we advocate for complete bodily autonomy. (We also have the benefit of having caregivers remain on site, which we realize is not a support available to all facilities/therapists).
So, though our policies included entire paragraphs about the use of mechanical and physical restraints and the training of those using restraints, we also said, “We do not utilize mechanical or physical restraints.” To comply with the state system requirements, we addressed hypothetical situations where restraint might be necessary.
A couple years later, when a parent asked about our restraints policy, it felt like an easy answer to say, “Oh, we don’t use restraints! Those hypothetical situations are just a necessary legal inclusion.”
From our lawyer’s perspective, this statement set clear boundaries for our use of restraints. Resonate’s staff wasn’t trained in the use of restraints, so that meant we wouldn’t use them. But from the parent’s perspective, the clause was still concerning. As we all know, legal documents can be confusing, and the parent felt anxious reading through our policies trying to decipher the manner and extent to which restraints could possibly be used.
Blaming the system by saying, “Our lawyer recommends we include these restraint policies,” wasn’t helpful for the parent. Nor did it fully express our clinics’ commitment to bodily autonomy. Most importantly, it didn’t prioritize the safety and mental health of our autistic clients who we’ve promised to serve.
Therefore, we completely revised our statement on restraints.
The problem? (Actually, there were a few).
Resonate Music Therapy isn’t prescribing a one-size-fits all approach to the use of restraints in sessions. We do not use them. But we understand the need to maintain an environment that is safe for everyone including therapists and other clients.
However, we found these problems when reviewing our internal policies:
We had no training in place. An untrained individual could have thought they were allowed to use a restraint if they hadn’t first read the legalese.
Restraints did not align with our philosophical approach to music therapy.
What constitutes an emergency? Some of the language was vague.
Why have that policy in the first place if it would never be implemented?
We initially kept the policy because it was the easiest way to keep the system happy, and we defended the policy by blaming the system. We said, “Well, we’re legally required to use all of that terminology. But it says right there… we don’t actually utilize restraints! Unless we need to! And only by an individual trained in the use of restraints! Which we are not - so we don’t use restraints”.
It is not enough for a therapist or company to say, “Trust us. We’re good people and will act accordingly.”
This is because autistic individuals are unfortunately at a higher risk of being seriously injured, traumatized, or even killed due to restraint. If we as therapists are going to do better and be better for our communities (particularly for those who may be vulnerable due to communication differences, lack of outside supervision/oversight in facilities, etc), we need to reflect transparency and autonomy in all we do.
Technically, our policy was written in such a way to specifically exclude any untrained staff from utilizing a restraint. That meant every single therapist at Resonate - we were not trained in restraint of any kind. Technically, we were well within all outlined legal and ethical codes.
But we definitely weren’t championing autistic rights in our stated policies. It’s challenging to address the many ways ableism impacts our society. Systemic requirements are a particularly pernicious issue of ableism. But placing autistic and/or disabled individuals in spaces where adherence to the system, or adherence to the law, is used as an excuse to not be better is problematic.
Did we at Resonate Music Therapy do this very thing knowingly and maliciously? Absolutely not.
But we unintentionally created a space that was not as safe as it could have been. Unfortunately, it took me a few years into my music therapy career to realize that blaming the system is just another way of saying, “I’m part of the system, but I'm meaningless. This is the way things are done. What do you expect from me?”
And certainly, it’s tempting to point blame at large therapy corporations, therapies that routinely deploy restraints as a first round of ‘control’ rather than meeting the person where they are and de-escalating through validation. It’s really tempting. But if we, as small practice owners and individual therapists, aren’t making the change, who will?
This issue is definitely not isolated to Colorado Springs, Colorado as a state, or to the US. This is a global issue where those with physical or cognitive disabilities are at a higher risk of abuse and neglect. The media often puts blame on neurodiverse individuals for their own murders, particularly in cases where the perpetrator is a caregiver who “legally” used restraints.
Blaming the system is just not going to cut it.
We need to acknowledge our roles within the system and actively champion the rights of autistic and disabled people.
Upholding the rights of autistic, neurodiverse, and disabled individuals is an ongoing task. As human beings, it seems we’re always looking backwards with regret. How will we look back in 20, 30 years on the way we’ve treated autistic and/or disabled individuals?
If you are a therapist, particularly if you own or are in a leadership position at a practice, challenge yourself to continually question your own practices and policies. With all policy changes, strive to consult autistic, disabled, and neurodiverse adults.
The following are good things for all therapists to evaluate:
Do I, or does my facility, have any policies that aren’t enforced that should be removed from intake paperwork?
Have I ever had an uncomfortable gut feeling about the way I (or a coworker) treated, spoke, or interacted with a client?
Do I, or does my facility, ever use physical prompts without first asking the client if that’s okay with them? Are talks about bodily autonomy and safety regularly mentioned, and incorporated in real ways (eg, social stories, in client’s AAC devices)?
Have I ever seen someone act out in anger or frustration towards a client? How was that handled?
Is there the staffing and support in place to allow caregivers the opportunity to regulate themselves before attempting to co-regulate?
Is total communication honored or dismissed?
Do I, or does my facility, put more importance on therapist perception of the situation than on client communication? For example, “You said this, but I think you’d rather do this.”
Do I have an advanced understanding of neurodiversity to correctly support safe stimming, echolalia, apraxia of movement and speech?
Did Resonate Music Therapy do anything wrong as a business? Legally and practically – no. We did not have ill intent, and our policy specifically barred us from utilizing a restraint. However, we recognized we needed to hold our professional team to a higher standard. As music therapists, we need to clearly, concisely, and emphatically promote autistic rights and disability rights in all we do. Even if it’s ‘just’ paperwork.
To learn more about Resonate Music Therapy and our core beliefs, visit our home page.
