MERLD, therapy is turning into a money pit...what to do?

[Ghee]

Ds9 is in language therapy twice a week, 45 min each time, for his MERLD. I really like the therapist, she is sweet and she seems to understand MERLD (as compared to two other SLP's that I spoke to who only treated articulation and had never heard of MERLD..) That said, therapy is $65 per session...$130 per week....$520 per month. That is darn close to our house payment, and I'm starting to question if we are getting therapy that warrants that kind of money, not to mention the extra $120 or so it takes in gas to get us there and back 2x per week.

 

When we had the evaluation with the neuro-psych, he told me he wanted DS in language therapy and OT. He wanted those therapies and their homework to BE his school for the year. Well, this place offers OT, and we've had the eval which states that DS is likely SPD (they won't make a firm diagnosis because they can only give me ideas to do at home, she said their small office wasn't conducive to treating it in office), has severe fine motor delays, and, academically, suffers greatly for them. We were supposed to start OT at the same time as language therapy, but the day we came for the therapy we were told that the OT couldn't see us for 2 weeks. That was almost 5 weeks ago. I've asked since then and was told that the OT therapist couldn't see us until later in the afternoon. I told them we'd reschedule the language therapy to afternoon then if we needed to (we'd have to do them back to back because it is a 4 hour round trip and I can't drive that more than 2 days due to fatigue, time, and gas expense.) They have told me they'd call me to make a new schedule but they never do. One reason I haven't pushed it is our ins won't cover it until we pay $2500 OOP and everything we've paid so far will roll back to $0 on January 1. Another reason is his MERLD is so severe, <1% for expressive language and 1% for receptive language. Having sat in on the OT eval, I'm not sure he totally understands everything the therapists asks of him yet anyway.

 

So, for now, we are paying $520 per month for therapy and another $480 in gas. That's just to get the language therapy. That's a huge flipping chunk of my husband's check. I'm starting to question if we are getting therapy that justifies this cost. Again, the NP wanted him doing SOLELY these two therapies. I'm having a huge issue with getting the SLP to give us homework. I've asked repeatedly, and sometimes we get the remainder of a sheet they didn't complete in the session, sometimes she will have a sheet they haven't done that she'll send with us, usually there is nothing. Last session she gave me links to three games on pbskids.org. That's great, and I'm glad to know they are out there (I might or might not have stumbled across them on my own, so I'm glad she shared), but I guess I thought we'd have access to materials that I, as a non therapist, might not be able to lay my hands on. I'm looking at $1000 a month and thinking that he is getting 6 hours of therapy for that TOTAL, it makes me shake my head. Now she does tell me what they are working on in each session (so far helping verbs and using the correct ones to fit the pronouns, passive sentences, and describing objects/pictures using more than one word). I've been able to pull together some stuff, but what I find on the internet is limited, and I'm a little frustrated that I'm not given a folder of work for us to work through during the week. Or a list of excercises....something. I just feel like we are spending a boatload of money and getting very little in the way of progress. Am I wrong? Is this normal?

 

Also, another thing frustrating me is that she seems to be pulling his lesson together when we get to the session. Now, granted, we come 20-30 min early to make sure we are on time (this drive can have lots of construction and car wrecks and delays so we leave early to ensure we aren't late), but I guess I thought therapists had scheduled in time to prepare for the lessons. I sort of get the feeling that she is very smart and very good at what she does IN therapy, but maybe is sort of fly by the seat of your pants and I'm sooo Type A. I'm not sure if she is unprepared or if I'm just looking for something that I'm not likely to find in a therapist there. I'm well aware that I'm obsessive about planning and being prepared, so that may be my issue. If so, I'll own it :P

 

What do you think? Would you be okay paying $1000 a month for what we are getting? And losing 2 days of time in your classroom with your other two kids (right now, either they stay with my mother and I leave their work to be completed (which is never a new topic, it's always something they've seen before) OR they come with me. I did find a homeschool group in the same city, so sometimes we join one of their classes if it's at a day/time we can do that following therapy so I can't say the day is a *total* loss.)

Edited November 5, 2012 by Ghee

[PeterPan]

Ghee, I think you already know the answer. The issue with money and whether they were really delivering compared to what we were forking out for it was the dividing line for us too. And reading your saga, for me the final straw was her showing up not prepared. THAT is not acceptable. All the other stuff I would live with IF she were this whiz bang therapist who shows up prepared and gives you your money's worth. There ARE therapists who show up prepared and earn what they get, and it doesn't sound like this woman does.

 

Next, I think you'll find that in the world of speech therapy parents, those who are intent on sitting down with their kids and interacting and implementing and carrying it over are NOT the norm. That's not to diss other parents. I'm just saying what our SLP has told us, that the level of interaction and co-working we as homeschoolers want to do is NOT the norm with clients. You couple that with their self-serving "god" complex (only I can do therapy, I have a master's, I know how to do this right, the idiot parent will mess it up) and the natural fear of parents, and you just have this great scheme for bilking people.

 

So I would drop that *particular* SLP in a heartbeat. Why are you having to drive so far? What are your options? I've done the drive far thing and the too hard on mother's health making it impractical thing. It's actually part of why we're doing the therapy we do, because I decided it was easier for me to drive farther less often than it was to do something closer (but still a long drive) more often.

 

In your case, I would do lots of calling until you find a therapist who seems to REALLY KNOW your dc's issues. And I would make sure they are fully committed to helping you learn techniques you can carry over at home. And I would do that long drive initially once a week and then every other week. And I would spend 10 minutes of each session with them teaching *you* how to do things. That way *you* are carrying half the load at home. There IS a ton you can do if they just show you how.

 

Expand your search to your whole state and see what turns up. Think big. You can make a trip once a week or once every other week, but to a much better therapist. When you do that, instead of doing a single session, you could do two sessions with lunch between.

 

And yes, I found it very offensive that therapists would expect to be paid 4X what my dh makes simply because they have a master's. One we had didn't show up prepared, was harebrained, and just didn't earn the money. And when you're asking *4X* what my dh makes, you SURE better earn it! I think the whole insurance model lulls them to sleep. They get paid whether they perform or not, the parent isn't in the room seeing it, blah blah, and it just extends out indefinitely for this "incurable" kid. The less curable our kid is, the more money they make, kwim? It's horrible, but it's true. So yes be cynical, yes move on. You deserve better.

 

PS. We drive 2.5 hours each way, so we've been there. I hope you find someone you feel more confident in. :grouphug:

 

PPS. Have you seen the Rapid Prompting method of instruction? It's totally different from the PROMPT speech method we do for verbal apraxia. Rapid Prompting is a teaching method of connecting with non-verbal kids. There are some videos on the website, and the book is amazing. Might give you some ideas.

Edited November 5, 2012 by OhElizabeth

[Lecka]

I would keep looking also.

 

I am glad she has those positives, but there are more SLPs out there.

 

Personally I had a great experience with student clinicians... I happen to live near a state university that has a speech clinic. They have a sliding scale based on income, and so that might cut your price quite a bit.

 

The student clinicians were always extremely prepared, not at all pulling things together.

 

I did not do homework with my son, it was a source of conflict etc (a huge etc), but when I did at the beginning, they had homework ready for me ahead of time. Sometimes they would not give it all to me, if they did not get as far as expected.

 

His school SLP now prepared a huge packet for him at the beginning of the year, that is in a folder, and she marks what she wants him to do in the folder every week or so. That is much more minor, but if there is a progression being followed, it seems like it might be possible to do this.

 

I was told that power struggles and big fights and tantrums and fits of depression were common with kids and parents with speech therapy (specifically with my son - I don't mean it as something for other people to worry about, just that it was common with kids very similar to my son), that they see it a lot, that it can be very hard to avoid. My son was SO sensitive it was better for me not to have any role in his speech besides modeling correct speech. He had a hard enough time with his low intelligibility he could not handle having it come up at home, too. Anyway -- I think it is awesome when kids and parents can work together and I think it is a precious thing, and I am glad you guys are able to do it!

Edited November 5, 2012 by Lecka

[Ghee]

Thank you. Unfortunately, services for this and other therapy forms is very limited. This was one of 2 places within driving distance. The other place is equi-distant, just in the opposite direction. I actually spoke to them first and was quite put off. They acted like I was bothering them by wanting to know more about their practice. They wouldn't even tell me what sorts of therapy they did without me paying for an eval. That place treats TONS of kids on state funded insurance and I've talked to people who are on TNCare and they got the polar opposite - very welcoming, come tour our facility, we'll give you a comp therapy session before you commit to coming. I think my private ins wasn't going to provide unlimited payments to them and they didn't want us :( Either that, or they just really didn't like ME ;)

 

We are looking at moving to Chicago/Wheaton area, an area that our NP says has MUCH better services available. The move would be after Christmas, so would line up perfectly for the new deductible. I was scared about starting over finding a therapist, as it took me MONTHS of searching this time, but he told me (and he lived in the new city for decades) that he wouldn't hesitate to go, that I won't have the same problems there as so much more is available.

 

I've considered telling them that this is simply too much. Too much money, too much driving...and asking them to do one session a week and give me the second as homework. Then, maybe I'd have more to go off of when trying to figure out what to do at home. I've googled MERLD treatments and ideas/advice is sparse! It's frustrating. :( I'm tired of spinning our wheels and I want to start feeling like I'm actually headed in the right direction.

 

 

ETA: We aren't moving solely for therapy. My husband has lived/worked there for almost 3 years, the better services is just icing on the cake :)

[Ghee]

I do think, as OhElizabeth said, that the majority of kids they treat are already in PS. Therefore, the parents don't want MORE work to do at home - and I've BTDT so I understand. It may be that she is having trouble wrapping her head around a parent that is begging for work. She may see what she gives us as a lot, compared to other kids.

 

Also, I have worried that she will stumble across this and be hurt. I'm very thankful for everything she's done. If we lived in that city, and my insurance wasn't such an *** about therapies, I might not question every.little.thing. It's the $2500 per person and the drive time combined that are making me want to have perhaps more than I can reasonably expect. I don't get the feeling she doesn't know what she plans to do with him, just rather that the materials aren't pulled together prior to the few minutes before the session. Again, I come from the PS teacher "plan for a week/month" mindset, so I may be looking for something that isn't common or possible in the therapy world. If I'm wrong, I do want to hear it!

Edited November 5, 2012 by Ghee

[rafiki]

nt

[Ghee]

Well, that's kind of it, Michele. We've reached the point where I'm weighing the good he's getting from this agains the wear and tear on our family and finances. I think, for me, the therapy is a crutch. If there was program specifically to be used in remediating this, or teaching a child with MERLD, I might feel like I had a starting point. I just feel lost and want someone to say "He struggles here, here, and here. This is the place to start, and this is what to do." I look at everything he struggles with and have a hard time breaking it down into individual things to tackle. Like you, my other 2 need a lot of hand holding, so I don't have tons of time to sit around and craft or implement some radical teaching method.

 

I found MERLDworld, but it has an almost anti-homeschooling taste to it. I wasn't finding a lot of what *I* needed. Again, I can find youtube videos of kid's displaying MERLD symptoms, or blogs detailing what parents face with their MERLD child, but nothing detailing how they are remediating it. Maybe they aren't? I don't know.

 

I do think we will be looking for a good therapist who will work on a minimal basis "in office" and then give me ideas for what can be done at home. I wish our therapist would say "You can do this, or that, or do some of this." rather than just saying "We worked on passive sentences." Do you know how much comes up when looking for ways to teach passive sentences to LD'd kids? NOT MUCH!! LOL

 

I think she does fine with him in her office, I just need practical and specific ideas for what to do at home. I need some kind of MERLD therapy liason :tongue_smilie:

[Crimson Wife]

Is there a SLP who will work with your child over Skype? That would free you up from having to make the long drive twice per week.

[Ghee]

Is there a SLP who will work with your child over Skype? That would free you up from having to make the long drive twice per week.

 

I'm not sure, but that's a good idea. I'm not even entirely sure it would work for him, he tends to need to be micromanaged to stay on task, but it's a consideration.

[DyslexicParent]

My child has SPD among other disorders. None of the reasonably priced treatments have worked so far for any of her disorders, so I am in a similar position as you in trying to decide if it's worth the huge commitment in money, time and missing work for a specific intervention.

 

- I have been advised to look for an SLP that knows Lindamood Phoneme Sequencing (LiPS), but the only LiPS tutor I found so far charges $95/hour and we will have to drive back and forth to another city. LiPS can take 80-120 hours, so this can cost over $11,000 (excluding driving costs & earning less money from missing work).

 

- Neurofeedback is $125/session twice per week for at least 40 sessions, totalling at least $6,800.

 

- Private schools that treats her disorders costs $14,000-$24,000/year. One wants a commitment of three years, so that would cost $72,000!

 

:confused:

Obviously, I am continuing to research if there are evidence-based alternatives.

[eoffg1]

Ghee,

I would ask what was identified as the causation of the Receptive Language Disorder?

Or perhaps they haven't clearly identified it?

[Scoobymummy]

This is one of the things that I find so intensely frustrating about this journey. So many professions seem to have 'the answer' for your child ... but the cost is exhorbitant and, in the end, the results are only a maybe. It puts a huge burden on us to research and try to understand complicated information and to make decisions about family finances vs benefit for the child. It's what wakes me up in the middle of the night in a panic.

[momto4kings]

Have you heard of the NACD? nacd.com I have had all of my children on program with them at one time or another, though none of them have had a severe problem (two with speech delay, two are typical). One of the main thing I hear from other NACD moms is that they were fed up with the high costs of various therapies with very little improvement. The NACD taught me how to do therapy with my kids at home every day, several times a day, 5 days a week, vs. 30-60 min per week. If you want to be involved, the NACD is your ticket and from what you are saying about how much you pay, the NACD seems like a really good deal. Usually the cost is the biggest turn off for people whose kids have mild issues.

 

Good luck!

[DyslexicParent]

Can you explain how paying $232+ every month to NACD on top of materials recommended saved you money? While dismissing evidence-based treatments such as medication for ADHD, they sell unproven programs such as The Listening Program and other sound therapies.

 

When I read, "If you believe that the solution lies with getting more traditional educational or therapeutic services, then NACD is not for you", my parental spidey instincts were already tingling! Read Quackwatch.com before anybody pays for NACD.

nacd.com I have had all of my children on program with them at one time or another, though none of them have had a severe problem (two with speech delay, two are typical).

[PeterPan]

Have you heard of the NACD? nacd.com I have had all of my children on program with them at one time or another, though none of them have had a severe problem (two with speech delay, two are typical). One of the main thing I hear from other NACD moms is that they were fed up with the high costs of various therapies with very little improvement. The NACD taught me how to do therapy with my kids at home every day, several times a day, 5 days a week, vs. 30-60 min per week. If you want to be involved, the NACD is your ticket and from what you are saying about how much you pay, the NACD seems like a really good deal. Usually the cost is the biggest turn off for people whose kids have mild issues.

 

Good luck!

 

Can you explain how paying $232+ every month to NACD on top of materials recommended saved you money? While dismissing evidence-based treatments such as medication for ADHD, they sell unproven programs such as The Listening Program and other sound therapies.

 

When I read, "If you believe that the solution lies with getting more traditional educational or therapeutic services, then NACD is not for you", my parental spidey instincts were already tingling! Read Quackwatch.com before anybody pays for NACD.

 

Just looking at it quickly, the *idea* behind NACD seems laudable. Indeed there's a racket to therapy where they DON'T want to teach us how to do it at home. Many homeschoolers or just people in general have the time and WANT to do more if they would just teach us. So on that level it's awesome. However I think it strikes me as a little odd that they're saying it's for people who don't want traditional therapy, but then they sell the same things traditional therapists recommend. Their app for apraxia is particularly appalling. It's traditional apraxia therapy by a traditional therapist and has so many flaws. (focusing on syllables instead of complete speech, requires the child already to be able to produce the sounds, glossing the issue that the dc could be producing the sounds INCORRECTLY, etc.). Just appalling.

 

I assume some of the things from NACD are quite good, as momto4kings found. However, given how sincere but inadequate their approach is on apraxia, I would exercise caution and sift through their other recs very carefully. The idea is right, that we can do a lot more at home, but you still want to make sure you're getting the BEST therapies. For that hefty price per month, a child with apraxia could actually get one-on-one PROMPT therapy with an actual therapist, someone who wants to teach you to carry it over at home, and get much better results.

[rafiki]

nt

[momto4kings]

Can you explain how paying $232+ every month to NACD on top of materials recommended saved you money? While dismissing evidence-based treatments such as medication for ADHD, they sell unproven programs such as The Listening Program and other sound therapies.

 

When I read, "If you believe that the solution lies with getting more traditional educational or therapeutic services, then NACD is not for you", my parental spidey instincts were already tingling! Read Quackwatch.com before anybody pays for NACD.

How am I saving money with the NACD?

 

Let see:

 

From the original poster: "So, for now, we are paying $520 per month for therapy and another $480 in gas."

 

It looks like she pays about $6240 a year for language therapy, plus gas $480. She is trying to add OT on top of that, which let's say is also $65 per session or $6240 per year. So right there that looks like $13,000 to me.

 

For the NACD you pay $950 (currently $500 off if you have financial need) for the initial evaluation, then $232 per month. So the first year with the NACD is $3284, the second $2784. Is this not significantly less then $13000?

 

Earlier this year I was getting tired of working with my son on his /R/, so I decided to take him to a non-NACD speech therapist. They charged me $59.57 for a 30 min. session and told me that this was the last month they were doing half hours. The hourly fee was going to be $110. So that would be $440 monthly, $5280 yearly. I was prepared to pay that kind of money until I saw that what the professional therapist was doing was EXACTLY what the NACD had trained me to do at home with him, for less money.

 

I've heard the "research based" argument before, unfortunately, I can't address it. I would suggest to the original poster to call the NACD and talk with Sara or Bob. I can say though, that after taking an university class last spring on positive methods in child development I am amazed with what passes as research.

 

If you understand a little bit of the NACD philosophy, you would see why they don't recommend drugs for ADHD. From what I understand, no one is being "cured" from ADHD/ADD with medication, just their symptoms are being managed to some degree. However, I do know people personally whose kids have been officially diagnosed with ADHD who have eliminated the symptoms, not just masked them, with the help of the NACD.

 

Anyway, good luck to all of you with whatever you are dealing with!

[PeterPan]

How am I saving money with the NACD?

 

Let see:

 

From the original poster: "So, for now, we are paying $520 per month for therapy and another $480 in gas."

 

It looks like she pays about $6240 a year for language therapy, plus gas $480. She is trying to add OT on top of that, which let's say is also $65 per session or $6240 per year. So right there that looks like $13,000 to me.

 

For the NACD you pay $950 (currently $500 off if you have financial need) for the initial evaluation, then $232 per month. So the first year with the NACD is $3284, the second $2784. Is this not significantly less then $13000?

 

Earlier this year I was getting tired of working with my son on his /R/, so I decided to take him to a non-NACD speech therapist. They charged me $59.57 for a 30 min. session and told me that this was the last month they were doing half hours. The hourly fee was going to be $110. So that would be $440 monthly, $5280 yearly. I was prepared to pay that kind of money until I saw that what the professional therapist was doing was EXACTLY what the NACD had trained me to do at home with him, for less money.

 

I've heard the "research based" argument before, unfortunately, I can't address it. I would suggest to the original poster to call the NACD and talk with Sara or Bob. I can say though, that after taking an university class last spring on positive methods in child development I am amazed with what passes as research.

 

If you understand a little bit of the NACD philosophy, you would see why they don't recommend drugs for ADHD. From what I understand, no one is being "cured" from ADHD/ADD with medication, just their symptoms are being managed to some degree. However, I do know people personally whose kids have been officially diagnosed with ADHD who have eliminated the symptoms, not just masked them, with the help of the NACD.

 

Anyway, good luck to all of you with whatever you are dealing with!

 

Can I just ask a question? (And I'm really curious here.) What was involved in the eval for that $500/$900? How could they eval his speech? Did I see on their website they did part of it by Skype? I don't know, just that distance thing confuses me. I agree regular therapy makes clients into cash cows and is exacerbated by the insurance model (where people aren't incentivized to make it more efficient), but I'm uncertain how some things can be done long-distance. Some things yes, other things not so well. For instance, with my ds's apraxia there were jaw stability issues. That's something a therapist had to work with hands-on, identify, and show me what to do. That was really beyond the realm of anything you could do via Skype and an ipad app. So I see holes where it wouldn't work, and yet I can see what you're saying, where when you get someone who's willing to stop and see how all these pieces fit together, it could actually be a really good service.

[Ghee]

Ghee,

I would ask what was identified as the causation of the Receptive Language Disorder?

Or perhaps they haven't clearly identified it?

 

We aren't sure. Basically, he's had problems since infancy - you can search my name and probably find the list I posted that I was taking to the NP for our initial eval - and the NP thinks he had the problems DUE TO the SPD and MERLD that he thinks he was born with. I'm feeling guilty that maybe the problems CAUSED them...

 

I try not to think about it too much, TBH, because I can't change any of what happened and I *was* begging dr's for help and getting nothing, so I did what I could then.

 

I don't regret having the NP and SLP evaluations, because they gave me a guide. I've even considered having the SLP updated at the 18 month mark, then the NP repeated 3 years after the initial.

 

Each child with MERLD/ASD is different. I can share what fit my kid and encourage you to look around Super Duper Publications, their OT decks are fabulous, so are their games.

 

So we used things such as:

 

the Fine Motor Fun Deck, Yogarilla, Move Your Body, Pirate Talk, Communicate Junior, Barrier Activities, from Super Duper.

 

Regular games such as Think Fun's MathDice Jr., 7 ate 9, Muggins Knock-Out, Sequence (there are many versions of this), What's in the Cat's Hat, AB See (Curious George), Hullabaloo, Apples to Apples Junior, many versions of Memory (Animal Tracks is a favorite), Rat a Tat Cat, Pictureka, Mancala, Spot It, Make N Break.

 

He started with BrainPop Jr, then went to The Magic School Bus Series, Curious George, now he enjoys Where in the World is Carmen Sandiego.

 

For fine motor work he enjoyed the Melissa & Doug Dino stencils, then Scribble Art, Chicken Socks hand art, Chicken Socks Pop Beads, Chicken Socks Melty Beads, Animal Habitats crafts by Judy Press, Geo Puzzles, Snap Circuits, Creating Line Designs, Mazes, Dot to Dots.

 

On the iPad, ABC Magnetic Board, Monster Mouth, Stack the States, My Play Home, Scribblenauts, Monster Physics, Hold it Up, Air Hockey Gold, Lawn Mowing HDPro, BrainPop Jr, Sentence Builder, Language Builder, Fun with Directions, More Fun with Directions, The Correct Spelling, Montessori apps, Castle Builder, 3D Builder (Cyberchase).

 

For sensory needs a body sock, Cordaroy beanbag to jump into or sit in, Sky Chair on a C Frame, sand and water table filled with a mixture of things, gymnic hop ball, plasma car, sonicare toothbrush for kids, little tikes bounce house, slinky pop toobs, play doh.

 

For more schoolish stuff, Let's Read and Find Out Science, Financial Peace Junior, Spill & Spell, Stranger Safety by the Safe Side, Child 1st Snap Words and Sight Words in Sentences, He went from RS A math to CLE 1 math with MUS blocks, now is doing Life of Fred, Nora Gaydos readers, etc.

 

For the emotional side books from Magination Press.

 

I hope some of this gives you some ideas.

 

Thank you, Michele. I will have to print that out and look over it :)