Can you help me evaluate my son's PT?

[Wild Lupine]

My son has developmental dyspraxia for which he receives OT, PT, and feeding therapy. (It's a neurological disorder that affects muscle tone and motor planning). I'm trying to figure out whether to sign up for extended services through his EI agency once he turns three. My hesitation is that I really am not sure about the PT he's been seeing; his OT and SLP are fine, but I've had concerns about his PT for a while. I'd appreciate other's perspective. 

She sees him once a month and does play-based PT with him. He enjoys it, but I am not sure what he gets out of it, being only once month. 

The things that concern me are that she seems to underestimate the severity of his symptoms and isn't very proactive with him; she seems to think he'll be fine, just needs to get a little older, and doesn't seem to consider his symtoms very deeply. First she 'graduated' him out of PT once he learned to walk (at 20 months), saying he was where he needed to be at developmentally and would stay there; after several months he had fallen far behind on gross motor skills so he started PT again.

When I bring up a concern, she kind of dismisses it.  For example, he is almost three and still cannot walk up an entire flight of stairs, but switches to a crawl halfway up. She says he probably can walk all the way, but is in a habit of crawling. There are other things like this, saying things he does (or rather doesn't do) are a matter of personality rather than lack of physical skill. It's also up to me to tell her areas in which DS is behind, she doesn't ask specific questions about what he is able to do at home or on the playground. I don't always know what kids DS's age should be doing, so unfortunately I failed to mention a way in which he was hugely behind because I didn't recognize his skill level as being delayed. 

But, as I said, his OT and SLP are good. The three are kind of a package deal and I can't decide if my concerns about the PT warrant switching the entire package or not. 

[momof3tobe]

I would keep get the extended therapies and then also take him for private PT at least once a week.  Anything that the private PT suggests or evaluates, get it in writing and bring it to the EI services.  Have them all work together to get your Ds the best possible therapy.  You will have pay for the private PT (around my area it's between $50 to $75 for a half hour session and depending on your insurance, it may not be covered), but it would be worth it.  My son received OT and speech through the school district and I also got him private speech, OT, and feeding therapy and I made sure everyone was emailing each other and talking about what they were doing and what would be best for my ds and I'm glad it did both.  I personally think that EI and school district therapists need more accountability- but in a good way- I always kept up a good relationship with them and they were always willing to communicate with the private therapists to come up the best plan for my ds.

[Wild Lupine]

Originally Posted by momof3tobe 

I would keep get the extended therapies and then also take him for private PT at least once a week.  Anything that the private PT suggests or evaluates, get it in writing and bring it to the EI services.  Have them all work together to get your Ds the best possible therapy.  You will have pay for the private PT (around my area it's between $50 to $75 for a half hour session and depending on your insurance, it may not be covered), but it would be worth it.  My son received OT and speech through the school district and I also got him private speech, OT, and feeding therapy and I made sure everyone was emailing each other and talking about what they were doing and what would be best for my ds and I'm glad it did both.  I personally think that EI and school district therapists need more accountability- but in a good way- I always kept up a good relationship with them and they were always willing to communicate with the private therapists to come up the best plan for my ds.

That's a good idea, making sure everyone is emailing one another and in communication even though they're not in the same agency. 

I should have mentioned though, that our finances don't allow us to pay for anything beyond what insurance will cover. Fortunately, his insurance is good and will pay for PT, OT, and SLP (with a co-pay), but they won't pay for two PTs.

[crunchy_mommy]

Hmm I wonder if you could drop the PT (since the PT doesn't seem to think he needs it anyway ) and then continue with EI and get PT through your insurance?

Also, have you discussed your concerns with your EI coordinator? Is it possible to get a different PT?

[Wild Lupine]

Originally Posted by crunchy_mommy 

Hmm I wonder if you could drop the PT (since the PT doesn't seem to think he needs it anyway ) and then continue with EI and get PT through your insurance?

Also, have you discussed your concerns with your EI coordinator? Is it possible to get a different PT?

Once EI ends (very soon, sadly), everything comes out of our insurance and pocket. So even though we'd be at the same place using the same OT and SLP, we wouldn't be able to use EI funds. This PT is the only one in the agency, so I couldn't switch to another one there and because all his needs are interrelated it would be very hard to coordinate his needs if he was being served by people who worked in different places, couldn't coordinate schedules, and tracked hours and billed our insurance separately.

Talking this through here has helped me see that I would be much happier and my son would be served much better if we switched agencies. 

Thanks!

[crunchy_mommy]

Originally Posted by Wild Lupine 

Once EI ends (very soon, sadly), everything comes out of our insurance and pocket. So even though we'd be at the same place using the same OT and SLP, we wouldn't be able to use EI funds. This PT is the only one in the agency, so I couldn't switch to another one there and because all his needs are interrelated it would be very hard to coordinate his needs if he was being served by people who worked in different places, couldn't coordinate schedules, and tracked hours and billed our insurance separately.

Talking this through here has helped me see that I would be much happier and my son would be served much better if we switched agencies. 

Thanks!

Ahhh OK I was kind of confused lol wondering how you were getting EI to pay past 3 Now I get it... yeah it does sound like switching agencies would make more sense so he can get proper PT...

[Roar]

One thing to try might be scheduling a specific time to talk to the PT and giving her your concerns in writing. One thing to ask is if the PT is going to be so rare if she could give you more of a home plan to work on. I agree with you that once a month isn't very often for a kid with low muscle tone. You are going to make more progress by regular stuff at home but you need somebody guiding that.

[APToddlerMama]

Originally Posted by Wild Lupine 

Once EI ends (very soon, sadly), everything comes out of our insurance and pocket. So even though we'd be at the same place using the same OT and SLP, we wouldn't be able to use EI funds. This PT is the only one in the agency, so I couldn't switch to another one there and because all his needs are interrelated it would be very hard to coordinate his needs if he was being served by people who worked in different places, couldn't coordinate schedules, and tracked hours and billed our insurance separately.

Talking this through here has helped me see that I would be much happier and my son would be served much better if we switched agencies. 

Thanks!

A couple things.  First, I don't know how close your son is to turning three.  Has EI talked to you about an IEP with the school system?  Because 90 days before his third birthday, they should be submitting a referral to the school system, with your permission, asking the school to evaluate him.  Depending on his SN, he should then be able to receive services through the school system.  My son was able to continue PT and speech, but school said he didn't need OT, which EI had done.  I didn't think he needed OT anymore anyhow.

Also, it depends on where you live, but in our county, the school comes out to our house since it is DS's "natural environment." So basically, it is like continuing EI with a new batch of therapists and they are paid by the schools.  It has been working out great.  School doesn't bill insurance either, so we would have the option of using our insurance and having double therapy if we wanted. 

Also, I used to work in EI, and you *can* revoke your consent for them to bill your insurance for PT.  I only know this because I worked for them so I knew all the rules/laws regarding this.  They would still be required to service your son, and your cost share, if you  have one, won't change.  Your tax dollars are paying for it anyhow.  I did this with my son. Not because we were moving PTs (although at one point it was a consideration) but because my insurance wouldn't pay simultaneously for PT and orthotics.  The orthotics cost $2500 and we simply couldn't eat that cost.  So I revoked consent to bill insurance, and got the orthotics.  Nothing changed with EI...because they legally can't change it.  Your cost share (or lack there of) isn't based on how many times you're seen a week/month.  It is based on a monthly flat fee based on your income.  So...if you want to deny their PT insurance payment, continue with her for continuity, but get a second opinion, you can.  Or, you can simply request a different EI PT.  I'm embarrassed to say I "fired" an OT, teacher, and two SLPs during the time my son was in EI, but quite frankly, they don't always have the greatest providers and I was bound and determined to get my son the services he deserved. 

Good luck! 

[Wild Lupine]

Originally Posted by Roar 

One thing to try might be scheduling a specific time to talk to the PT and giving her your concerns in writing. One thing to ask is if the PT is going to be so rare if she could give you more of a home plan to work on. I agree with you that once a month isn't very often for a kid with low muscle tone. You are going to make more progress by regular stuff at home but you need somebody guiding that.

I've mentioned specific things several times. I've never sat down and said directly, look this is bugging me, let's fix it, but I have let her know that certain things are issues for him repetitively every time I've seen her. She's a friend of a friend, which makes it kind of awkward.

Originally Posted by APToddlerMama 

A couple things.  First, I don't know how close your son is to turning three.  Has EI talked to you about an IEP with the school system?  Because 90 days before his third birthday, they should be submitting a referral to the school system, with your permission, asking the school to evaluate him.  Depending on his SN, he should then be able to receive services through the school system.  My son was able to continue PT and speech, but school said he didn't need OT, which EI had done.  I didn't think he needed OT anymore anyhow.

Also, it depends on where you live, but in our county, the school comes out to our house since it is DS's "natural environment." So basically, it is like continuing EI with a new batch of therapists and they are paid by the schools.  It has been working out great.  School doesn't bill insurance either, so we would have the option of using our insurance and having double therapy if we wanted. 

We did do a referral and testing process with the school district. They found him ineligible for special education because his language and cognitive skills are too high. In the evaluation meeting it was mentioned that my son became too tired to progress with testing after 45 minutes and I said I thought it was worth discussing how that fatigue would impact his ability to access the curriculum. The EI PT said he would probably outgrow the tendency to fatigue quickly by the time he was three so he would likely be fine in school. It was then that I began to think our differences were irreconcilable and we needed to part ways. Shame about having to change SLP's and OTs though. 

(I realize the school is a whole other can of worms, I'm leaving it there with them for now for various reasons and feel comfortable with this.)