United Brachial Plexus Network, Inc.

I have a meeting with our PT from Birth to Three tomorrow about Mariella's services. Her reassessment is tomorrow also and my PT/OT do not think that Ella will qualify for services from Birth to Three anymore. She is 13 months old and in my understanding I believe they are saying this b/c as of right now Ella can do the things that she should be doing by this age. They also said that what Ella needs, birth to three has nothing to offer. Not sure what that means, I will hear more tomorrow I guess. So the advice I need is...
Are there any questions I should ask? Is there anything else I can do to try to keep up her services? In your opinions, does Ella still need PT/OT? For those of you who do not remember, Ella does have movement, didnt need nerve surgery, but will need muscle surgery most likely down the road. She has a slight elbow contracture that Birth to Three made a splint for. She doesnt have full range of motion, obviously huh? =) And she currently has PT 1X monthly and OT 1X weekly.
So, should I be okay with the decision Birth to Three makes if they will no longer take Ella?
Any advice is appreciated! Thanks!
Krista

Krista,

I think the main thing that you must stress to 'them' is that this injury is ongoing in nature, that with every growth spurt there is potential for movement & range lose. If therapy is not continued, there could be problems affecting performance in school. Ella hasnt even begun to potty train yet (I assume) -- I'm sorry that I can't give you specifics, but I know that Kerrie McDerrmott successfully extended Kyle's BtoT services-- so maybe you could email her ( I think see took reports from TCH showing the need of therapy til at least 5 I think)

& if they say that they have nothing to offer--stress that anything that premotes movement helps & that they are better equiped to foster Ella's continued progress.

L
Good Luck, Monika & Jessica

Maia was/is very delayed so I never had to fight for this - so I'm not experienced at this myself.

do you have therapy other than this birth to three?
ifyou do - when does the insurance stop paying for it?
if you don't- then there are plenty of articles that you can bring that show that therapy is necessary for bpi kids. Monika mentioned some of the points that are good. I emailed Rich to answer this post but I won't know for sure if he'll check his email tonight or if you will check again also- but he has some excellent links/ and articles that will help you fight your case. Well- if nothing works, you can always appeal it I am sure.

I wish you the best of luck. If there's anything I can say is to fight for your sweetypie - you are her best advocate!
-francine

Krista- I just emailed you an article Rich sent me (forgot I had it)... it's a fantastic article about the importance of therapy. I hope it will help.
If it didn't come through email me..I have chat so I will be up late.
francine@injurednewborn.com

btw- if anyone else wants this article just email me - francine@injurednewborn.com

Rehabilitation Program for Children with Brachial Plexus & Peripheral Nerve Injuries by Lorna Ramos& Joan Zell

Krista,
I just went through this myself in June. Matthew had his yearly eval and they wanted to cut out PT. To keep me happy they kept her coming once a week. That didn't do it for me. I've been fighting since June and PT is now being reinstated every week and OT may come twice a week.
To keep PT coming focus if you can on balance issues.
Matthew cannot walk over objects (pillows etc) he walks around them. Weight baring is another big one. See if Ella favors one side over another. Take her uninjured arm away and see if she can get from a sitting position to a standing.
Come up with a goal list and name everything your child cannot do. If you can get a letter from your BPI doc stating the necessity of PT and why. Tell them she is at a high risk of falling backwards functionally (compare it to a CP injury if you have to)
If you feel your child needs services don't give up!!!!

I just found my goal list: TO BE THOUROUGHLY BILATERAL
walk backwards, pick up toys from floor without falling, seat himself in a chair, walk up and down stairs, put rings on a stick with affected arm, turn pages of a book with affected arm, color, turn a door knob, throw a ball, paint with whole arm movement, crawl with an open hand, not favor right side while crawling, bare equal amount of all fours, not over reach for items with his right arm, play airplane, give hugs with arms open, get into a standing position unassisted, feed himself, palm up to rinse off soap or for a treat, zip a zipper, play peek a boo, do "so big", reach behing himself
If the outcome is not what you think it should be appeal!!
GOOD LUCK
Cindy

Hi, Krista. Doesn't it stink that we have to fight so hard for our children. Want me to come over? (hehe) I'll tell them why Ella needs svcs. Sorry, it just gets me so frustrated. I've had to fight for a lot of what we've gotten for Nicole too. A big part of the problem IMO is with the testing that they do. They used the "Batelle Developmental Inventory (BDI)" for Nicole's 1 yr and 2 yr evaluations. Then, when did her final discharge evaluation, they not only used the Batelle, but they also used the Peabody Developmental Motor Scales (PDMS). The reason they added the Peabody test is b/c the Batelle, while it includes various areas (such as gross/fine motor, personal-social, adaptive, communication, and cognitive), it is very limited in the gross and fine motor area. The Peabody test is only gross and fine motor skills (it doesn't inlcude any non-motor skills). So, they couldn't do just the Peabody, they still had to include the Batelle too. The final results indicated larger developmental delays based on the Peabody test. Another thing about the testing that bothers me is that there are some motor skills listed that can be done one-handed, so even if a child cannot complete the task AT ALL w/one hand, they can score a perfect 2 (out of 0-1-2) if they can do it with the other hand. To me, that's not accurate. The Peabody includes more 2-handed tasks than the Batelle test. The only thing is that I don't know what age range the Peabody is geared to and if it's something they can even do on Ella at this age.

I don't know what you mean when you say that what she needs, B23 has nothing to offer. What exactly do they think she needs?

I don't know at what point Ella is and how much PT/OT she still needs, but I would certianly not go for totally dropping svcs if you're presently getting PT monthly and OT weekly. Perhaps she could do okay with OT 1-2x/month, but I don't know. How do you feel? I know that evaluation time is always an emotional time b/c while you'd love for your baby to score well and not need svcs, you want her to get the svcs if you think that she still needs them. I can't remember, what kind of therapy does she get outside of B23?

I'll be honest with you, it's not a good sign if the present PT/OT both think that she will not qualify for svcs. I say that b/c to some extent it's up to them. You see, the determination for svcs is primarily based on the "#s" of the evaluation, but not completely.

I'm going to quote something Nicole's PT wrote in her evaluation (which I think was quoted word for word from a document that she had): "Children, birth to three, who are diagnosed by a physician or an audiologist as having a physical or mental condition that has a high probability of resulting in developmental delay are automatically eligible for early intervention services." Do you have a dr. who would write a note indicating that Ella has a high prob. of resulting in dev. delay? Obviously not in time for tomorrow's meeting, but for an appeal if necessary? Basically, this means that even if she doesn't qualify for svcs based on the eval, she can't be denied svcs baesd on the risk of likelihood of developmental delay.

Another thing they can emphasize is the "quality" of tasks. Perhaps she might be able to complete some of the age appropriate tasks, but what compensatory moves does it take her to accomplish those tasks? How long does it take her to perform the tasks? To me, length of time is very important, esp. when looking long-term, such as to school. How would a child feel if all of her classmates are 2 steps ahead of her when doing a project? Also, are there balance and safety issues in the way Ella moves? How is she moving around now? Does she walk yet? Is she crawling? How does she crawl? Does she weight bear on both arms? Also, you said that she can do the things that she should be doing by this age, but remember she has accomplished that with the help of PT and OT. What will happen to her progress if that's discontinued completely?

You're also entitled to a copy of all the detailed ?s that they do on the evaluation (I've always gotten Nicole's).

BTW, have you read the great article that Rich wrote in the Awareness Outreach? That has some very helpful info. too.

Well, I've written a novel. I hope it helps. Call me or email me if you want. Take care.

-Tina

You need to read or get a copy of your rights as a parent. If they do not provide you a copy of these at your meeting request one. If you do not agree with what they suggest just state that. Then state you need time to go over their suggestions and you will respond to them as soon as you can. Unless you sign something nothing is allowed to change. And you should NOT Sign Anything unless you are completely in agreement. Good Luck