Thursday, March 18, 2010

Speech Therapy and Feeding Issues

A lot of people have asked me why, at 20 months old, Finn doesn't qualify for speech therapy.

I know, it's crazy, huh?

It seems like pretty much everywhere else in the country (from what I've gathered reading other blogs), babies with Ds typically receive ST from birth, addressing oral-motor issues and development before speech begins to emerge. This make complete sense; a SLP is trained and educated to address oral-motor issues and development which, it would seem indisputable, impact both feeding and speech development.

Here in California, though - or at least in my part of California (as I understand it, EI varies widely even from county to county - why, oh, why isn't there a universal standard?), feeding issues are addressed by occupational therapy. And Finn's OT actually is working with us to address Finn's feeding issues (he is still on purees only; he doesn't seem to know how to chew; he has pretty serious texture aversions and a highly active gag reflex). She's good, and very patient, and seems to have all kinds of tricks up her sleeve. However, it's not really her area of expertise. She's a trained OT, originally from Chicago, where feeding issues are addressed by SLPs. It was only when she moved to California a handful of years ago that she began addressing feeding issues, because that's one of the things OTs here are expected to address.

What I was told by our service coordinator a long time ago was that Finn wouldn't even be evaluated for ST until he was 18 months old. So when we had his last IFSP meeting and eval last month when he was 19 months, he was deemed not ready for ST because he's apparently "not cognitively ready to benefit" from ST. Despite the fact that all over the IFSP paperwork that came out of that meeting, it says, "Mom's main concerns are speech and feeding."

Even Emily, our OT, wants to see him receive ST . . . now. And if I put up a big fight, I might be able to get it for him. Maybe. But part of my problem currently, too, is that there are no SLPs available to do in-home therapy right now in my area, and with the chaotic and very full schedule I already have with all of the kids, it's not feasible for me to travel across town for center-based therapy. When my other kids are out of school this summer and our schedule opens up, it might be more feasible, although I'd really rather receive in-home therapy. But anyway, I do plan on going after ST for Finn more aggressively this summer.


Lisa said...

I know we will chat more about this at another time offline, but just wanted to post a couple quick things here (especially if others from CA are reading this and dealing with the same issues):

1. If you request a speech evaluation, the regional center is required by law to provide one by a licensed speech language pathologist within 45 days (that is the OUTER limit)

2. It is true that if you push you will get ST for Finn. Our children, with a Ds diagnosis, do not technically have to "qualify" for services. The Ds diagnosis automatically makes Finn eligible for all services. Put another way, he does not need to show a delay. His speech and language development could be age appropriate and he would still qualify for ST.

3. It's very true that feeding issues are a bit of a dance between OT and ST. Most often, both therapists want to know what the other is doing - it's sometimes about stepping on each other's toes; other times it's about skill. Sheridan's OTs have always felt very skilled to help on how Sheridan get's his food to his mouth, but what he does with the food once it's in there is the ST's domain. In fact, I've seen that as a trend with the few OTs and STs we've worked with. It will definitely vary based on skills. BUT, you can always ask for a feeding evaluation (most often it is with an ST who has much more experience with the feeding stuff) and see a feeding specialist that is neither your OT or ST if the feeding eval recommends it.

4. I know I said this would be quick so I'll shut my trap after this one :) You do have a unique situation in that you truly don't have the option for clinic-based therapy - it simply doesn't work for your family. Which means that without an in-home therapist through your regional center, they've put your back against the wall. Technically, the law says that interventions should be in the most naturalistic environment, including the home. You could appeal that they are only offering you clinic-based services, but the center could argue it's not possible to provide in-home (given the lack of therapists)... just be sure that your service coordinator adds you to the wait list so that as soon as in-home opens up it can go to Finn. This is a tricky one that sometimes just means we're screwed - but at the same time they have to provide services that meet Finn's needs.

As I mentioned before, I'm happy to chat more when/if you are ready. Just wanted to throw a few things out for others who are reading :)

stephanie said...

That's unbelievable! Finn should automatically qualify from birth.
He was born with a delay... Ds, and how can they make OT's do the job of an ST. Apples and oranges! Crazy!
Things like this make me so stinkin' upset. Finn is entitled to all these services, if they are what you want.

Lisa said...

Lisa, I'd definitely push for getting ST for Finn. And if you have to wait until the summer where you can actually travel for it since there aren't any by you to come to your house- then you need to do it. I'd start the process NOW so you have things in place in two months. The only reason that he's not 'cognitively ready' is because they are not helping him in that area. Please push for this. Speech is so important. My son will be 3 in May and he already has over 70 words that he says cognitively correct. That's huge. He also signs over 35 words.. .but now that he is talking more, I've kind of stopped with the signing.

Let me know if you need encouragement or any help.

Lisa from Chicagoland

Sweet Pea's Mommy said...

There are so many of in Southern California that are trying to fight this battle. Most of the local moms in our group have kids under the "magical CA 18mth mark" and we all are trying to find ways to get it covered. One possibility is that your insurance might cover it. Since everything has to go through insurance first now for us, that is the route we are going to try. Sweet Pea is almost a year and I have wanted her to be getting speech since birth, but was always told they won't even think about it until 18 mths for us. Why do we live in such a backwards state when CA is so progressive in so many other ways?

I'd also try to find speech pathologists yourself to 1) see if they have openings and get on their waiting list if not and 2) if they aren't currently vendored with your RC then they can fill out the paperwork and become one if they are willing.

It's always been a long process to get anything approved for us so I would definitely start now. I wish you luck and if you have any success in this arena, please share as I know we are all fighting the same battle in many ways.

Be strong!

Sweet Pea's Mommy (lala land)

Larry said...

It is so odd to hear they are pushing back so hard - Matt was evaluated for speech at age 27 months and since he was "behind" by 30% (whatever that meant) he was deemed eligible for county services and since I had a preschooler and worked part time they sent the therapist to our house twice a week just like that - no fuss no muss. I guess budget cuts are impacting it at this point???

And the other thing I think is weird is that if Finn did not qualify for any other services, county services typically cut off at 36 months and switch to school district at that point - which is what happened to Matt.

So what are they telling you, that when he is nearly 3 they will evaluate him and then make him transition again at age 3 after only a few months service? That is ridiculous and certainly not ideal since the therapist takes awhile to establish a relationship with the kid - I think you have a sucky coordinator!! Fight the fight! Lisa

Sharon said...

Hi Lisa! I took Brennan to a speech therapist who was a "feeding specialist" through our EI program starting at 8 months when we started feeding him solids. We went for one hour per week and had actually stopped working on feeding and were working more on speech since the ST thought he was where he needed to be with feeding (eating most table foods). When Brennan was 16 months old, we went to the NDSC convention and went to a presentation by Sara Rosenfeld-Johnson where I realized that our feeding specialist hadn't done ANY of the things SRJ suggest for oral motor strength and feeding. I asked SRJ if she would take a quick look at Brennan to see if he was chewing (b/c she said that often times kids with Ds have not worked on oral motor strength and as a result, don't actually chew). She watched him eat and told us he was not, in fact chewing. Just moving food around his mouth and swallowing. I was so mad at our ST and basically met with her once more where she agreed that he wasn't chewing but said she didn't think that was a big deal since he was growing and getting the nutrition he needs. Ugh! Needless to say, that was our last visit with her. Luckily, SRJ was on the east coast within a couple hours drive last summer and we were able to meet with her for a 2 hour consult. My insurance didn't cover it, so we had to pay out of pocket - but it was money well spent. She gave us a plan that I've worked on at home with him and he's made great progress. Then I can e-mail or call SRJ as Brennan meets his goals and she's revises our plan. You can check her website and see if she'll be in your area or if there are any therapists trained in her methods in your area. Some insurance companies will cover the consultation. Either way, she gave us great advice and I was able to implement it at home - which was perfect for us. Hope this helps!

Kristin said...

We live in Utah, and I feel the same way reading out of state nlogs. At 11+ months we have yet to even see a PT. We get a once a month 'general' therapist that comes by and says "he's doing great" every time. Max won't even put his feet on the ground, let alone bear weight on them!

I'm Tara. said...

This makes me so sad. I'm an SLP who provides in-home EI services in Colorado. I wish *I* could come see Finn for you!! I know that on SRJ's website ( she has a parent oral-motor kit you can purchase. I don't have any experience with it, but I think it contains all of the same things that I'm using to work with my kiddos on. Feel free to email me if you think I can help you or answer any questions for you. Hugs from one mom to another -- it seems as though you are doing a fantastic job for that sweet little boy.