Thursday, August 13, 2009

Boiling Blood

Been awake for quite a bit last night thinking about the budget cuts and new eligibility criteria for early intervention services in the state of california. Yes I know california is spelled with a capital C, governor with a G and sacramento with an S, just not deserving it right now! ..... makes me sick, sad, angry and certainly makes me want to swear so loud they can hear me in sacramento. Seeing my beloved early intervention field go down the drain is not anything I had ever imagined!!!! The fact that Loki no longer qualifies for feeding therapy is frustrating and ridiculous. He does not eat by mouth yet this is not considered a delay in adaptive skills…..?. However, thinking about thousands and thousands of kids who will end up in the school system with delays because they do not qualify for infant development services due to absurd new eligibility criteria makes me profoundly angry.

WHAT ARE THEY THINKING? How are all those micro preemies going to catch up without help? How are those little ones 0-2 with yet to identify syndromes/disorders (and believe me, there are quite a few) going to be helped if the child has a delay in all domains just not quite at 33%? How are prenatally drug exposed children with their often a-typical development going to be supported? At 24 months children need to show a 50% delay in any or more of the developmental domains (i.e. social-emotional, self help/adaptive, language and speech, gross motor, fine motor or cognitive development) in order to qualify. Seriously? Can you imagine hearing this “sorry your son does not qualify for services, his language and cognitive development only show a delay of 40%, that’s not enough.”

I can guarantee you behavioral issues will rise and thus we’ll see more child abuse. Ever put 1 and 1 together? School districts are going to be overloaded, as if they were not already! I do not know what to say, or how to say it to even come close to addressing how angry I am about those budget cuts………….

Maybe a more eloquent and intelligent post later. For now my blood is boiling!!


marieke said...

Wat kun je je daar kwaad over maken he, het is zo'n korte termijn actie die op de lange termijn alleen maar meer kosten oplevert. En die kosten dat is toch waar t Arnie om gaat. Daarnaast is t natuurlijk jouw kind, (en by the way ook mijn neefje) jouw werkveld en passie. Dus, gewoon van je af schrijven en boos zijn. ZUl je vast al aan gedacht hebben maar schrijf een brief aan Arnie over hoe jij als early interventionist én moeder van een micro-preemie deze acties ziet. Wie weet helpt t als er een rekensom bij zit die aangeeft wat het kost als er early ingegrepen wordt en wat als dat niet gebeurt. Kan mij zo goed voorstellen dat de stoom uit je oren komt! Veel liefs, XXX Marieke

Cheryl said...

See my Facebook response. Short version: This is outrageous! The state will pay for special ed, when it's less effective, for institutions like mental health hospitalizations, health care crises, and yes, even prisons, when early needs are not responded to (perfect example is sensory seekers from drug exposure--don't provide appropriate input for the babes, and you get the teens exploding with needs). The state will pay to institutionalize the severely disabled, once their brain "sets" and intervention is no longer possible, but not to prevent that tragedy. Nuts, inefficient, ineffective, and SO very costly.

Anonymous said...

What the holy hell?!!! Utter madness! You know I couldn't agree with you more! Loki is even MORE lucky to have you, if that is even possible. If were both still at Ella we would be bitchin' up a storm, for sure! Miss you! Jennifer

Kyra said...

Dear Mom/interventionist mom (I wrote mob accidentily, is it Freudian?), and also dad,

Of course here we are debating about what a bankrupt state should or should not invest in which area. I hate this discussion, for of course we want all the best for Lokipoki and his makkertjes-preemies. It is so easy to think short term and without respect of quality of life if you can get a better bank balance/ more voters next time that way! I was wondering if this care will all go into volunteer care now, for a lot of workers will also loose their jobs. But they will have other troubles on their minds. Anyhow, I suppose a lot of knowledge goes down the drain and I was wondering what you could do with it (apart from protesting of course) to save all the knowledge and experience in de network of early interventionists, doctors, physical therapists and - not to forget - the most important therapists, the moms and dads. For I think this is a valuable knowledge and mindset you have here, so please try to spread at least this information about early intervening and what people could do themselves to make it a little bit better for their child before they enter the 50% zone. Write a book or so. Or a website. I don't know. I'm just a nitwit from the Netherlands. We just got a subscription for physical therapy for our kids when they were born with Plexus Brachialis Damage, it is covered by regular health insurance. Aren't there any insurance companies that see the benefit of this all and can support you in writing your book??

Well, cool down, breathe, fight for yourselves first, then take care of everybody else. Love you.


About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

Read about his first name.
Read & hear about his middle name.
See photos.
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