The ethics of price gauging special needs families

[Anonymous]

Anonymous wrote:Not to worry, OP. With the changes that the current administration is making to higher education, publicly funded research, medical insurance, and funding for education, providers of specialized services will become rarer and, probably, more expensive. Such services will be less available, and even less likely to be covered by insurance plans. The “free” services are not actually “free” — but available because tax payers have agreed to pay for such services and resources in support of the common good. As the staunch capitalists become less supportive of “the common good” such services may dwindle as well.

OP, I’m curious about what you view as “price gauging” (sic) and what you don’t. It’s rare, I think, for someone to question, say, the fees of an anesthesiologist, yet services provided to children, often by highly educated and specialized female professionals are often questioned and belittled.

Here’s a question for you: How much should I charge per hour in the DC area?

I attended public schools — so, acquired a certain set of experiences and perspectives. I went to a HYP college, followed by what was then the top PHD program in my field at a top ranked university. Along the way, I worked at a well-regarded lab school, a Head Start program, school and community based programs, and trained and worked in a learning disabilities assessment program. I tutored college students in my spare time. I now have over 2 decades of experience in assessments and interventions — which has included multi-disciplinary supervision and training.

What do you think that’s worth? If you’re interested in getting a well-done report, please know that I don’t use AI, and that analyzing assessments and writing up a good, comprehensive, detailed report could easily take as much time as doing the assessments. So: What seems reasonable to you?

HAH!! It's not rare over on the Health and Medicine forum, I'll tell ya that much.

[Anonymous]

Anonymous wrote:I highly respect most of the SN professionals we’ve worked with and am happy for them to be reasonably well paid. I do find it horrifying that you truly can’t find an in person pediatric therapist in my area that takes insurance. We private pay nearly $200 an hour. Insurance will reimburse us about $35 a session. It’s maddening for us but I also feel guilty because we can pay it. What are the vast majority of families doing? I know our income is very high and it’s still a significant cost to us. I don’t necessarily blame the providers but yeah when they charge more than 4x what insurance reimburses it feels …not good.

It's because insurance reimburses so little that they don't take insurance. A SLP who can only get 35 dollars an hour for her services could not stay in business, considering her overhead costs. She'd be making less than minimum wage.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I highly respect most of the SN professionals we’ve worked with and am happy for them to be reasonably well paid. I do find it horrifying that you truly can’t find an in person pediatric therapist in my area that takes insurance. We private pay nearly $200 an hour. Insurance will reimburse us about $35 a session. It’s maddening for us but I also feel guilty because we can pay it. What are the vast majority of families doing? I know our income is very high and it’s still a significant cost to us. I don’t necessarily blame the providers but yeah when they charge more than 4x what insurance reimburses it feels …not good.

It's because insurance reimburses so little that they don't take insurance. A SLP who can only get 35 dollars an hour for her services could not stay in business, considering her overhead costs. She'd be making less than minimum wage.

When our DC did EI which took insurance, they were getting big payouts from insurance. They gave multiple diagnoses that had made our developmental ped raise his eyebrows and were getting close to 200 a session over 15 years ago. Our DC liked the ST and enjoyed the sessions. I know nothing about ST, but simply googled the billing codes. We were so overwhelmed and I was pregnant so I just didn't have the energy to see if it was legit.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It was a rude awakening when I realized that plenty of people in the sn world were just out for our money.

When you consider that people smuggling is a business, and that gangs can even torture migrants so their families pay up... then it makes more sense that something as "benign" as special needs would be a legitimate money-making industry.

What a concerning argument. Yes, murder is worse than assault, but they are still crimes. Taking advantage of SP families is not benign. You clearly have no idea what these families face day after day and year after year.

[Anonymous]

Anonymous wrote:I completely agree with the poster mentioning advocates as something to be wary of. In my experience, they are the biggest price gougers and some of the least ethical operators in the field. Some of them clearly want to earn their hourly pay rate by dragging out meetings endlessly, arguing with the school, and obtaining no meaningful benefit for your child. Advocates CAN help in some cases, usually when it is clear cut that your child is being denied access to something that they are obviously entitled to (i.e the school won't even evaluate them for an IEP and they are four grade levels behind). However, a lot of the time, they argue for small word changes in the goals that are antagonistic and change absolutely nothing about the services. Or, they argue for something knowing full well it won't be granted given their own knowledge of the system, charging you for their time instead of being honest about what is realistic in your child's case. In the worst cases, they don't even know the child they are arguing for and don't have expertise in that particular disability. I've worked with many advocates and only a few are truly ethical operators, in my opinion.

Agree!

[Anonymous]

Anonymous wrote:I completely agree with the poster mentioning advocates as something to be wary of. In my experience, they are the biggest price gougers and some of the least ethical operators in the field. Some of them clearly want to earn their hourly pay rate by dragging out meetings endlessly, arguing with the school, and obtaining no meaningful benefit for your child. Advocates CAN help in some cases, usually when it is clear cut that your child is being denied access to something that they are obviously entitled to (i.e the school won't even evaluate them for an IEP and they are four grade levels behind). However, a lot of the time, they argue for small word changes in the goals that are antagonistic and change absolutely nothing about the services. Or, they argue for something knowing full well it won't be granted given their own knowledge of the system, charging you for their time instead of being honest about what is realistic in your child's case. In the worst cases, they don't even know the child they are arguing for and don't have expertise in that particular disability. I've worked with many advocates and only a few are truly ethical operators, in my opinion.

Can you recommend a good one or say who to stay away from?

[Anonymous]

Anonymous wrote: Once we started getting priced out it turned into a blessing because we found better services we could afford. Instead of social skills group, we just kept trying sports-rec sports, regular sports, different sports until DC finally found the right match. We also started planning group events at our home and outside our home to get DC socializing more.

We hired an outstanding young woman training to be a speech therapist for ST and it was a much better match. She is now a ST and we have been one of her references for years. For tutoring, we started experimenting with online platforms until we found a match. Her prices went up, but still quite reasonable. We hired a local teen to help our child with motor skills. We paid everyone well above going rate for the experience level, and I will be honest, the services most of the time were better than boutique services folks. Think outside the box.

Awesome advice. In particular we had great experience with 1:1 sports coaching - so cheap compared to other services!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:You require a highly trained and educated professional to provide services for you. I agree these services should be covered by insurance, but that’s the real issue here, not how much they are charging. As a previous poster pointed out, these services are often provided by highly educated, underpaid, overburdened and burned out women.
Also, keep in mind when someone does an assessment for your child, it takes literally hours to write a report.

Well said.

Ditto.

Neuro-psych assessments are 5-7 thousand sometimes more. You are telling me even after over-head this person is underpaid?

The issue is lots of time that is overkill for the kid. They don’t need it.

[Anonymous]

Anonymous wrote:I am a school psychologist and have a son with special needs. The research on so many types of therapies is really lacking.

When he was turning three and really needed speech therapy I really looked into the research. Ethically they can't take identical twins and give one twin speech therapy and the other twin is the control, which would be the best type of study to see if the twin who receives therapy ends up being better off. The same with occupational therapy.

In my experience (which really isn't proof of anything, of course) when there is a specific targeted issue like an articulation disorder or producing sounds that can be measured pretty well then speech therapy seems to be effective.

If it is a language issue then working for 30 minutes or 60 minutes once a week really just doesn't seem to be effective. There are around 100 hours in a week that kids are awake. So that is really working on something intently 1% of the time. So you can take your child to speech therapy for language issues for years and continue to pay but how much is it really doing.

I think as a parent if I am spending money and time to get my chid therapy, then I am going to have a tendency to think that is what is making my child better over the course of time and not just they are developing as they get older. So providers take advantage of this.

The best providers consider parents part of the care team and spend most of their time or at least a considerable amount showing parents how to support goals at home. Like the Hanen method of speech therapy and a lot of behavioral stuff - is really about training the parents.

[Anonymous]

Anonymous wrote:I completely agree with the poster mentioning advocates as something to be wary of. In my experience, they are the biggest price gougers and some of the least ethical operators in the field. Some of them clearly want to earn their hourly pay rate by dragging out meetings endlessly, arguing with the school, and obtaining no meaningful benefit for your child. Advocates CAN help in some cases, usually when it is clear cut that your child is being denied access to something that they are obviously entitled to (i.e the school won't even evaluate them for an IEP and they are four grade levels behind). However, a lot of the time, they argue for small word changes in the goals that are antagonistic and change absolutely nothing about the services. Or, they argue for something knowing full well it won't be granted given their own knowledge of the system, charging you for their time instead of being honest about what is realistic in your child's case. In the worst cases, they don't even know the child they are arguing for and don't have expertise in that particular disability. I've worked with many advocates and only a few are truly ethical operators, in my opinion.

I think I truly lucked out with my advocate. I am a lawyer so I didn’t need a lawyer - I needed someone who would help me talk to the school and understand their perspective but who was also knowledgeable enough to suggest good goals and services. She is a former special educator.

[Anonymous]

This is a concern of mine as a dyslexia tutor. I have 30 years experience teaching, a master's in curriculum and instruction, an ESL and a sped certificate and I'm Wilson trained. I feel like the absolute lowest I could go would be $75 an hour, and I know people getting $120-150. But since this type of tutoring requires twice weekly sessions, how many people can really afford $600 a month? MY family couldn't afford that. At the same time, I offered one family a discount and then learned they turned around and signed their kid up for an expensive travel sport. So I don't know what the right thing to do is sometimes.

[Anonymous]

Anonymous wrote:This is a concern of mine as a dyslexia tutor. I have 30 years experience teaching, a master's in curriculum and instruction, an ESL and a sped certificate and I'm Wilson trained. I feel like the absolute lowest I could go would be $75 an hour, and I know people getting $120-150. But since this type of tutoring requires twice weekly sessions, how many people can really afford $600 a month? MY family couldn't afford that. At the same time, I offered one family a discount and then learned they turned around and signed their kid up for an expensive travel sport. So I don't know what the right thing to do is sometimes.

I think the key is that you actually have a clear set of goals for the family that are attainable and a time frame for that. Beyond that, yeah, I expect to pay that much.

[Anonymous]

I am a professional who serves kids with disabilities. I do follow through, but I can't always achieve the outcome parents want, and that doesn't mean they don't have to pay. I could make a lot more with my same degree and training if I did other work. I do this work because it matters. I often get asked to do the work for free and I have to say no because I have bills to pay too. I'm always slightly offended when people who can pay ask this. Do they work for free? No. Why do they expect me to?

[Anonymous]

Anonymous wrote:I am a professional who serves kids with disabilities. I do follow through, but I can't always achieve the outcome parents want, and that doesn't mean they don't have to pay. I could make a lot more with my same degree and training if I did other work. I do this work because it matters. I often get asked to do the work for free and I have to say no because I have bills to pay too. I'm always slightly offended when people who can pay ask this. Do they work for free? No. Why do they expect me to?

It is your job to communicate to the parents what the reasonable goals are and the progress.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I completely agree with the poster mentioning advocates as something to be wary of. In my experience, they are the biggest price gougers and some of the least ethical operators in the field. Some of them clearly want to earn their hourly pay rate by dragging out meetings endlessly, arguing with the school, and obtaining no meaningful benefit for your child. Advocates CAN help in some cases, usually when it is clear cut that your child is being denied access to something that they are obviously entitled to (i.e the school won't even evaluate them for an IEP and they are four grade levels behind). However, a lot of the time, they argue for small word changes in the goals that are antagonistic and change absolutely nothing about the services. Or, they argue for something knowing full well it won't be granted given their own knowledge of the system, charging you for their time instead of being honest about what is realistic in your child's case. In the worst cases, they don't even know the child they are arguing for and don't have expertise in that particular disability. I've worked with many advocates and only a few are truly ethical operators, in my opinion.

Can you recommend a good one or say who to stay away from?

You will be much better off with a a special ed attorney instead of an advocate