Something I do regularly as part of clinical consultation,
is what I call Quality Assurance.
Basically, providing clinical guidance to a family or fellow
professional who wants to know: “Is this normal? Is this what ABA should look
like? What should I expect from services? Can I request that the provider
start/stop doing (blank)?”. Issues can
range from the simple to the complex, such as answering questions like “Is this
a good Behavior Plan?” to “How many hours a week of therapy does my child need? Does it have to be 40?”.
Doing this regularly, I hear LOTS of crazy stories. Lots of
sad stories. And lots of “Wait…..What?!” stories. I love when I get to tell the
client everything looks great, and the intervention being provided is sound,
ethical, and evidence - based. But I don’t always get to say that ☹
Of course every scenario and situation is different, so its
hard to summarize the main takeaways for ensuring you and your child are
receiving high-quality therapy services.
But.
There are a few general points that I usually explain to
people during these consults, that I would love to openly share. I hope its helpful
for any who need it.
First things first--- if you are wondering or questioning if you are receiving high-quality services, or if intervention is “working”, then unfortunately I’d have to say….. probably not.
People who are accessing great special education, Speech services, Occupational therapy, or ABA, generally don’t wonder if they are. The wondering and questioning is usually a sign that your “parent gut” is picking up on an issue. When you dig into it further, usually more issues or problems are revealed. So tip #1 is if you are currently skeptical or doubtful of the services being provided, DO NOT ignore that. Don’t minimize it and don’t brush it off. Investigate further.
Tip #2 is: Attitude matters. I talk to so many people who
say “Well he/she is an expert in their field, so who cares if they’re kind of
arrogant... condescending…rude…never returns phone calls…..mistreats me”. Nope.
Full stop. It is not okay for a professional to treat you like trash, just
because they are highly knowledgeable and in demand. Asking for qualifications
+ basic human decency is not too big of an ask.
Tip #3: As the parent or caregiver, you should expect to be
involved in your child’s intervention process. Any school, therapist, or
provider, who is treating you like an unwanted green bean dish at the buffet is
not acting with your best interests in mind. It is not unusual to expect to
have treatment goals explained to you, in detail, minus the jargon, until you
understand. It is not unreasonable to expect your questions to be answered, and
your feedback to be incorporated into treatment. This is your CHILD we are talking
about. Of COURSE you should expect to be treated respectfully and like a team member.
Tip #4: You should know the ethical obligations of the service
provider. If you are receiving ABA services, do you know what is considered unethical
behavior for a BCBA? What about for a RBT? No? Then how will you know if the
team is behaving unethically? I’ve spoken with families of children who exhibit
highly violent or dangerous behaviors, and there isn’t even a Behavior Plan in
place. That shouldn’t happen and is unethical treatment. If you don’t know what
you should be getting, its kinda hard to ask for it.
Last tip: Look for progress. This is probably the #1 complaint
people have when I speak with them, is their child has been participating in
XYZ treatment for ABC amount of time and nothing is better Nothing has improved.
Language is still a huge area of deficit, no new skills are being demonstrated,
behavior at home is still awful and challenging, they still can’t go out to eat
as a family, the child still isn’t toilet trained, etc. Now the specific amount
of progress, I can’t tell you that part. It varies by individual. But you
should expect to SEE the intervention working. If your child was tantrumming
for 5 hours a day when services began, is it less now? If your child would only
eat 4 foods when services began, is it more now? Has the intervention helped
any of the areas that are highest priority to you as the parent? No? Then why
continue??
Regardless of the specific intervention, treatment, or therapy, these basic tips should help answer many of those “parent gut” questions that start whispering to you that something is wrong, even if you can’t pinpoint specifically what is wrong.
Listen to that instinct, do more digging, ask more
questions, and reach out for clinical help or guidance when you need to!
*Recommended Resources:
Ethical Guidelines for ABA Providers
Ethical Guidelines for Speech Pathologists
Ethical Guidelines for Occupational Therapists
IEP/Special Education Law Resource
Informed Consent in Therapy (when disabled adults or children are being treated, it is the parent who must give informed consent)
Parent Participation in Therapy
Parent Involvement in the Therapeutic Process Improves Care
