Dear Snowbird & others..help!

[Debby]

;)Hello!
I hope you don't mind me bending your ear today. I am a new mom of Keeran. He is 10 months old. I have been fighting for services for him for sometime now. I am trying to get some speech and it seems our EI doesn't want to give it to him until he is 3 years old and in a group setting. They say that the OT can do pre-speech kind of things until then and that is all he needs.
I feel very frustrated since I have heard from many of you all the kinds of ST you got for your children even at 1 month. I spoke to our case manager about it and now he has scheduled another IFSP for next week.
Laura and others, can you help me out here. I am really growing weary.
Do I just quit this fight? Can you help me know how to get this? Please advise!
Also, if there is some other source or means to get some more help for Keeran I would appreciate it.
Can I go through some other non profit or something?
Right now he only has therapy 1x a week for 45 minutes. I know he needs me and our family and all we do with him...which is plenty, but I know he needs what I can't give him, unless I become a therapist and I have a fulltime mommy and teacher job already.

Thanks for any info you can give on this.

Pebbles in OREGON

[MaggiesMom]

Dear Pebbles,

Don't quit! It's so hard getting services and then trying to do all the things that your child needs from you too. Plus working? You do have your hands full!

But, we've all been there and it does get easier. Not that everyone just starts cooperating, but you get used to the system and learn how to deal with it.

In my case, I got a RX from our pediatrician for speech and the EI was more inclined to honor it. It sometimes takes some pushing, but it can be done.

Even if you don't get the answers you need the first time they send someone out to evaluate your child, you can request an outside evalutation. Sometimes you have to pay for it, sometimes not. Ask for a copy of your "rights" which they, by law, (in VA anyway) have to give to you each time you get paper work to sign. Then ask them to explain to you what your options are.

You can ask your health insurance if they cover speech therapy. Ours does if the pediatrician recommends it. We have a co-pay, etc. But, we had to go that route when school system didn't have anyone trained in the therapy Maggie needed.

If your child gets medical assistance, I'd think they would cover it as well. It would be worth asking.

I've gone through 5 different speech therapists working on Maggie's hearing issues and feeding issues. We haven't even started worrying about speech yet. I'm sure it will come soon.

But there is tons a speech therapist can do now to get your child ready to eat, talk etc. If they don't know what to do, we'll educate them!

Hang in there. We're with you!

Robin M - Maggie's mom

[Debi]

I will let Ms. Snowbird chime in here too as she is very VERY knowledgeable about all things birth to three but.. Peebles here is my imput:
First of all I DO think your EI is just trying to save some money by giving you the rationale that it offers w/ OT. I am quite sure you are doing lots and lots with speech at home but, really we ALL need to have those therapists guide us too.. they are the ones who went to school for 5/6 years just for this and also I think it's good to have another person who has a "cooler eye" work with your child. We have to be the mom first ..and the therapists can pick up on things the child needs and teach us how to work with our kiddos . So, I don't think you are at all unreasonable
Yes, you can fight the schools but I think you also want to be very aware of time. l0 mos and ongoing is a critical time for speech. You might want to check with your Ped. and get hiim to write a scrip for ST (check with your insurance to make sure it will pay). THAT way you can begin ST and also take something to the school so they can approve the service.
My experience is that schools do not move that quickly unless they know they have to.. and personally I would check on alternative routes for now. Also.. YOU should NOT have to fight these battles alone. Check with your local ed. agency.. ARC. Advocacy and Protection agency...anybody who has some practice in advocacy. Get a partner to help you learn the laws and strategies you will need to get the schools to provide services.
Now I'll let Laura take over

[meghans_mom]

Hi - well, I'm not Laura (well, I am - but not that Laura, LOL)
but I'm gonna stick my 2 cents in here too as well.
Don't give up! As I think I said earlier my daughter was denied ST originally because they said she had no issues...the real reason was they had no STs to give me - the department was and still is short of therapists, but that's another story.
We finally were able to justify speech - and got it from 8 or 9 months on, I think - 2x/week.
See if you can find an advocate group and a parent-DS support group. These people are your best allies...meet with them, talk to them. See what they are getting and if it's more...how they are getting it and justifying it.
It most likely is your county skimps on services - they're not being biased against Keeran. But that doesn't make it right...
anyways...you've already gotten some great advice - but I'd look for a group to help you out too.
Good luck again! laurie

[christie]

Just my opinion here but NOOOOOO do not quit the fight. Speech is the MOST important area and our kids deserve help with this from the get go. It has been proven over and over that EI helps our kids and an OT is just that an OT, NOT a speech therapist. Sooo the suggestion of the OT working on pre speech is just silly in my mind I would tell them you disagree with their reccomendation and request an indpendent evaluation. In the mean time, look into weather your insurance company will pick up private speech thereapy. Ours covered Chris till he was 5 years old, for private speech.

Just incase you haven't read this, thought you might find it of some interest...

www.ds-health.com/speech.htm

BEST of LUCK to you

CC

[alisonzmom]

HI,

I very recently (as in last week!!!) was finally able to get Early Intervention to agree to at least do a speach evaluation on Alison who is now 14 months old. ;D ;D ;D Up until our most recent IFSP meeting, I was getting the "she is age appropriate, we really don't do speach until kids are at least 24 months old" line of BS. In chat one night, Laura referred me to the section of IDEA that applies to our little ones. Here is a link I found:

www.ideapractices.org/law/regulations/indexPartC.php


If you go to section 303.16 it describes who is eligible for services.

I know that when I referred to the copy of IDEA that I had printed of this site (it took FOREVER to print... lots of ink & paper chewed up but well worth it! ) the woman who was there from the county very quickly started singing a very different tune!!! Later that same afternoon, Alison's service coordinator called to say that she had just received a fax from the county that they had approved an eval and any therapies recommended.

So obviously I would say DON"T GIVE UP!!!! It just takes some work and finding those key phrases - you know, the ones the pay!

And I'm sure when Laura sees your post she'll have lots more tips to share with you!

Good luck!
Barb

[Chris]

I had to fight to get speech for Sarah, too. I still don't get it through our school district but do get it through community mental health. I had to file a recipient rights complaint before I was offered services. We still only get speech once a week. I found a summer speech program that we are going to put Sarah in but we have to pay for it. Our insurance will not cover speech on an ongoing basis. They will only cover three visits.

BTW, our school district offered a "speech class" that met five times this semester so they say Sarah did receive speech services. I felt the class was a waste of time. It was really just a playgroup.

Chris

[momofrussell]

Now, I would agree that fighting and getting speech is not a bad thing...

But..

Since Russell is 6 and is VERY delayed in speech and other areas.. I see an OT very differently. (I also hate to say it, but I disagree with you a bit CC... LOL on the OT thing)

The OT DOES have an important job for pre speech skills with our kids... please don't discount that. The OT works on lots of "motor mouth skills" if you will, that need to come prior to speech. So, even though ST is not a bad thing and could be implemented at 10 months, don't discount that the OT might know a thing or two about pre speech and where your child is at level wise.

Russell didn't have ST until after he was 3 yrs old or so. Although he might of benefited from some of it, he was so delayed (and still is) in the mouth movements and oral stim stuff, that We actually needed (and still do) a REALLY GOOD OT instead of an ST.

Now that he is TRYING to make some sounds, they have upped his ST in his IEP for the next school year when he starts elementary school. But we still emphasize OT stuff too.

Please don't think I am saying your child doesn't need ST, all our kids need ST... but JUST having OT at 10 months is ok too to me... IF you have a good OT LOL! We had a WONDERFUL PT for the first 3 yrs, in home, 2 days a week. She also worked on OT stuff with us because she was that good. In order for me to get a global program, (I was in CA at the time) Regional Center requested I go to a facility for it, they wouldn't give me ST, OT and PT at home... but I already knew our PT prior to me even HAVING Russell and knew how good she was, and was lucky I got her, that I was comfortable NOT having the ST and OT... she helped me with that!

Good luck, and do what YOU think is best for your child. Don't stop asking questions... that is a good thing. Some of these "specialists" think we don't know ANYTHING.. and all I have learned in my 6 yrs of DS I learned from Uno, the internent, other bonds with mothers, other groups, a GREAT PT for the 1st 3 rys AND... the biggest thing... OBSERVING WHAT MY SON NEEDED!

Hugs!

A.

p.s. These may or may not help you...

www.ode.state.or.us/sped/spedareas/eiesce/

darkwing.uoregon.edu/~eip/

[christie]

WOW A. when did you sneak back in here and I didn't know Soooooo GLAD to see you posting again girl, WELCOME BACK, you have been missed tons.

Hey girl don't worry bout disagreeing with me, most do lots I think, LOLOL

Just to clarify what I meant bout the OT is YES OT is important just as PT is for our kids, but a good ST would be much more trained in not only speech but the oral motor that goes along, least thats my thinking

Chris gets both Speech and Oral Motor sessions and both are done by a ST not an OT but hey I could be wrong, as I tell Colin it does happen once a year

CC

[momofrussell]

Well, CC.. now I DO agree with you on this post though Actually, you must have a great ST to do OT stuff too, which is what I got with Russell in E.I. with our PT!

Russell has an OT AND and ST

I think ST's do have knowledge and training on oral motor but an I think and OT gets more extensive. Like they work on feeding, blowing, ect.. things like that.

Does your ST works on things like that too? If so, you got a great ST! I am sure some of their skills with overlap, the ST and OT I would think.

A.

[laurasnowbird]

Hi Pebbles!

Sorry to be so long in answering, but I've been AWOL for a few days. Everybody has had great information, so I'll add what little I can.

Okay, first off, if you don't have a copy of IDEA '97, you need to get one and keep it handy. Barb supplied the link to Part C below. At this age, you need to be most concerned with Part C and your state special education regulations. It gets a little confusing, because you have to know both the federal and state regs, but the BOTTOM LINE IS THIS: While you state has the authority to set the guidelines for services, their guidelines must NOT BE LESS than what is provided for by the federal law. In other words, if the federal guidelines list physical therapy as a related service, the state cannot refuse to provide it as a related service.

The key difference between Part C (which is what governs services for kids birth to three) and Part B (which is special education, and we graduate into that on our child's third birthday) is that Part C has a special emphasis on the needs of the family as well as the child. That emphasis on the family is your strongest ammunition for gaining services.

Section 303.12 says:

(a) General. As used in this part, early intervention services means services that--

(1) Are designed to meet the developmental needs of each child eligible under this part and the needs of the family related to enhancing the child's development;

(2) Are selected in collaboration with the parents

Here are my thoughts as it relates to getting services though. First of all when it comes to your IFSP, take a copy of IDEA 97 (at least Part C) and highlight the applicable things. If you don't have time, put some bright yellow sticky notes out of it (LOL!)

Take a list of your concerns (remember, this is about the family too!) and make certain to include your concerns about speech. Again, this is just my tactic, but I NEVER ask for services. For instance, I don't go to an IFSP and say "I think Ethan needs speech twice a week". I would go down in flames. Instead I make a list of goals that would REQUIRE the district to provide services to meet the goals. Make sure your goals are concise, measurable and time-limited. My district likes to write really wiggly goals like "Ethan will improve his fine motor skills". NO THANK YOU! I go in with specific, measurable goals like "Ethan will string five one-inch blocks on a shoe-string", or "Ethan will place 10 beans in a container with a 1-inch opening". Make certain the goals you set are ones that are measurable, and not subjective. With one of those wiggly goals, at the next IFSP, they would say "Oh yeah, his fine motor skills have improved". With a specific goal, he has to be able to DEMONSTRATE that he has attained it, and they can't wiggle out of it.

It would be best if your school showed up with a blank form, and you actually crafted an IFSP together, but that would be rare. If your district shows up with a pre-written IFSP, that's fine, but make sure that you say up front, "I have a list of the goals that are important to our family. Would you like to discuss them BEFORE of AFTER we review the goals you have set?". Make sure they know that you realize this is not just about what they feel is important, and if they have a problem with that, refer to the section of IDEA quoted above. Trust me, it gets their attention.

Never sign anything that you don't understand, and be aware that no matter what your district tells you verbally, unless it is in writing on your IFSP, it is unenforceable. Don't sign the IFSP until everything you have discussed is in writing. Insist upon it, or don't sign.

At ten months old, even a typical baby is not doing a lot as it relates to speech. Proving a need can be a little tricky, because the districts have a tendency to do evaluations and then tell you the child is not delayed enough. I honestly believe that many speech therapists actually do this out of fear. They simply don't know what to do with a child that young. Many of them don't know how to do much beyond traditional articulation therapy, and that obviously doesn't work with a 10 month old.

Keep in mind when you are establishing goals that your IFSP will generally cover a year. Remind the team of that when they say that a particular skill you would like to work toward is a 15 month skill, and your child is only 10 months. By the time this IFSP "expires" your child will be 22 months old. (Keep in mind though, that you have the right to call a new IFSP any time you want if you feel that things have changed or that your current IFSP is not fitting your child’s needs. Put your request for a new IFSP in writing)

In my state, the "medical world" and the "education world" work differently. In Ethan's private ST, it is the speech therapist who does oral-motor work in preparation for feeding and speaking. At school, the same therapy is done by an OT. The speech therapist is completely untrained in those skills. Those things often vary from state to state, and even district to district, depending on who has the necessary expertise. The advantage to making your IFSP goal-oriented (rather than asking for services) is that the district knows who is qualified to provide the service to meet the goals you have established. It is easy for them to deny services, but they have no recourse when you set a goal that is age-appropriate. Never let your school district presume a delay. Mine has tried that - "Well, he has Down Syndrome, so of course he will be delayed in ___". Nice try.

However, your child more than likely has low tone (hypotonia) and that low tone will almost certainly impact both feeding and speech. Those should be primary concerns. Set goals specific to feeding, ability to use a cup, self-feeding with a spoon, etc. Speech is super-imposed on the same muscle that we use to eat. The basics of speech actually come before actual words, learning to imitate, take turns, having balanced interactions.

I am a SERIOUS fan of Dr. James Mac Donald, whose website is jamesdmacdonald.org. Dr. MacDonald believes that parents are their children’s best therapists. He spent many years working with children with communication delays, and his work is known around the world. He has a book that I highly recommend called “Communicate with Your Child” in which he explains his strategies. Ethan is beginning to bloom in his speech, and I feel it is due to two things, the oral-motor work we’ve done, and the strategies by Dr. MacDonald that we have used. Dr. MacDonald’s methods emphasize the role of the parent in helping their child develop speech. If anyone is interested, I could go into detail in another post.

I have something called the Hawaii Early Learning Profile that I use to set goals. It breaks skills down into five areas, and gives the age ranges that they typically appear. For instance, “Babbles consonant chaines “baba-baba” is listed as 4 - 6 1/2 months. “Says “dada” or “mama”, nonspecifically” is listed as emerging at 6 ½ to 11 ½ months. Again, when I walk in with a goal that I can substantiate as age-appropriate, they have difficulty saying no.

Sorry, I feel like I am all over the board on this, but too many things are coming to mind at once. There are probably a dozen things I should have said but didn’t, so I’ll look at this again in the morning. If you want to talk in person, e-mail me and I’ll send ya my number!

[Debby]

Hi Laura,
Thanks for your email. I recently found that my insurance will cover nothing for therapy unless it is due to an accident, or deemed "medically necessary". My ped is working with me on this one. She referred us to a major hospital in the area who are the best of the best for an eval. ...problem is even if they see it as "medically necessary..maybe because of feeding?, my insurance still only pays for the first 60 days of therapy. In this hospital, all the services are mucco bucks!! So... I feel like I am back to the fight for state services with EI.
After our last IFSP I sent an email to the case manager and stated that we were not happy with the IFSP that was proposed and so he scheduled ANOTHER IFSP and of course he scheduled it on our therapy day and time.
Anyway, we directly suggested we want another case manager who will be working for the services Keeran needs, namely speech. We also stated that the agreement we made for 45 min every other week for OT and 45 minutes every other week for PT was our bare minimum. With all the vacation times, and sick days, it is not enough...so now another meeing is coming up soon...this next Thursday June 3rd.
I will look at all your suggestions and would really appreicate anything you think of that will help us get more services for Keeran since now we know private help is not going to be an option because our insurance is so bad.
If you can email me directly, that would be great, as you have time.
Thanks so much,
Pebbles.

[rickismom]

A REALLY good OT can work on pre-speech skills.

Maybe you can ask, in addition, that you be given a once-in 6 weeks session with a speech therapist for her to give YOU advice on how to work with your child at home in everyday situations...