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Old 06-08-2009, 10:23 AM   #1
kadiera
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why is it so hard to get therapy?

DS was a preemie. The hospital wanted him to get OT/PT/ST at discharge (2 1/2 months ago), but couldn't find anyone to do it at home, and DS is on a ventilator, which makes things complicated.

We went ahead and signed him up for therapy through the hospital's outpatient office, who did one appointment and then said they thought he'd be better off at home, and oh, by the way, they can't do that, but this other department in the hospital can.

That was 5 weeks ago. We're tentatively scheduled for the PT to come out Sunday morning (her only opening)...which is 8 days past the required date on his referral. OT can't come until PT comes.

We also have DS's IFSP scheduled for the school this week, but there's some question as to whether they can do therapy in the summer. I've threatened them with a lawyer, because our state statute says they're required to if not doing therapy would harm the child. Not that he isn't improving with a lot of work from us and his nurses, but he'll be a year old this week and is mostly at 6 month milestones due to his medical issues, and it's not going to get any better without help.

I just feel like I spend more time making phone calls to keep this all moving than I do keeping track of all his actual doctor's appointments....

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Old 06-08-2009, 11:34 AM   #2
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Re: why is it so hard to get therapy?

wow talk about annoying, we are trying to get my son in OT and ST and it is taking forever. We keep getting a run around with his diagnosis of SPD.

Early intervention says on average his skills are only 5 months delayed he has to be at least 6 overall.

Some of his skills are down by 2 month old and other up at 15 months. It averages against us.
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Old 07-08-2009, 10:39 AM   #3
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Re: why is it so hard to get therapy?

Sorry about the hospital services.

IFSP services should not be limited to the "school" year. We had IFSP services in 3 counties in 2 states and it just sucks how the services can vary.

If you want to call someone, I would recommend Calvin & Tricia. Calvin is an attorney and Tricia is an advocate. They are actually friends of ours and helped with a school mediation hearing we had a few years ago. Tricia had a dev disabled daughter, which Calvin helped raise.
http://www.respectabilitylawcenter.com/index.htm
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Old 07-08-2009, 10:58 AM   #4
kadiera
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Re: why is it so hard to get therapy?

Quote:
Originally Posted by britsuz90 View Post
If you want to call someone, I would recommend Calvin & Tricia. Calvin is an attorney and Tricia is an advocate. They are actually friends of ours and helped with a school mediation hearing we had a few years ago. Tricia had a dev disabled daughter, which Calvin helped raise.
http://www.respectabilitylawcenter.com/index.htm
Oh....that's excellent. I'll file that away for the future, because I'm sure we'll need it.

We got summer services, but only OT and PT - no speech because he's only a year old (which seems silly to me) and no "educational" stuff until the fall - the "teacher" supposedly will work on expressive language things, but has no plans to use sign language with him, which we're already seeing great progress with. Needless to say....I think at the end of the summer we need a re-eval, and they're going to fight it the whole way.
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Old 07-10-2009, 07:38 AM   #5
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Re: why is it so hard to get therapy?

Keep on them Mama. It sucks that the parents who are the busiest with caring for their little ones get put through the most hoops, but that's the way the system works.
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Old 07-12-2009, 01:17 AM   #6
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Re: why is it so hard to get therapy?

We get our IFSP services through the summer, no questions or problems.

Our daughter was cognitively delayed by a little over a year at 18 months old and they gave us an infant development specialist (she calls herself a preschool teacher) but would not give us a speech therapist even though speech delay was why we had her evaluated... well when she caught up cognitively and speech still hadn't come along they finally gave us a speech therapist! They told us they have to work on basic cognitive skills before they can tackle speech...
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Old 07-12-2009, 07:22 AM   #7
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Re: why is it so hard to get therapy?

My son is almost 2 and has gotten OT since he was 2 months old. then PT and ST. All 3 therapist use signs with him. we do some at home but not much he knows proli 10 signs. It's so hard to get in even with Eian having Down syndrome he had to fit in the what they were looking for. Best thing to do is watch them and delevolpe your our therapy at home with him in everyday things bath play eating. i think everything we do in our house equals to some form of therapy even my boys fighting each other. It's PT.
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