Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.

We love hearing from everyone!!!!

Friday, January 30, 2009

Bye Bye Infant Tub!

Peek-a-boo - I see you mommy!!!

It's official, Nathan is pulling himself up to stand in his infant tube - so, it's out-of-here!

Some milestones are not always about the "firsts" some are about the "lasts." This picture was the last time Nathan will sit or stand in his infant/toddler tub. I went to Walmart and bought a tub mat because Nathan's as slippery as a fish when he's in water (I've tried it - I can't hold him up!). I'm still toying with purchasing a tub seat - they're very cute but look like they'll limit his ability to play and what fun is that! He's a kid - it's all about having fun! In and out of the tub. I'm going to give the bath mat a whirl first and go from there.

Monday, January 26, 2009

New York State's Early Intervention Budget Blues

I heard about this. Checked it out. And, yes it's true. The Governor of New York has indeed introduced parental and therapist fees to the Early Intervention Program (EI).

What is the EI program? It's a program that was mandated by the federal government in the early 90's that requires states and localities to provide services to infants and toddlers, up to three years of age, who have special needs. Those services include speech therapy, physical therapy, social work, occupational therapy, special education, and possibly others I'm unaware of. These services are provided to children whom have been determined to have cognitive and/or developmental delays or could have because of diagnosis (like Nathan's Down syndrome). There is a litany of research that proves the first five years of a child's life is the most critical and so the aim of this program is to bring services to the children when it can do the most good.

When Nathan was born the hospital social worker explained the Early Intervention program to us and just how critically important it would be for his development. She brought us charts and showed us the actual developmental progress results of children participating in the program compared to those that opted out. The reason she was trying to be so convincing was that the EI program is voluntary - you're not required to enroll your child and as I've come to learn many parents either don't want the therapists in their home (for one reason or another) or they don't really believe that such therapies at this age are useful. I can tell you definitively that the EI program has been indispensable to our family and Nathan. Now, to the changes on the horizon.

Governor David Paterson has proposed three changes that will impact Nathan and his therapists - monthly parental fees, provider fees, and provider billing changes.

In all fairness to the Governor, he is having to contend with a $15 billion dollar budget deficit and the EI program is expensive. Currently, the program serves approximately 72,000 children costing the State about $160 million. The Governor has to make tough choices. I just don't agree that this is the right one. Let's not forget the Governor is himself a person with a disability so he knows the struggles many families face.

After reading the exciting budget language here is what I've been able to ascertain:

1- Each provider (therapist) will have to apply to the state for a certificate costing $270 for the initial application and $270 for each reapplication mandated every five years (generating $1.7 million in revenue for the State).

2- Each provider (therapist) will now have to do their own billing - directly to the insurance providers (saving the state $500,000). Even though I'm not a provider, I take issue with this administrative change because the state doesn't really bill insurance companies - Counties do. So, the savings that may be realized would be for Counties - I know my county employs one person who handles this billing. This is also problematic because of the way the EI program is billed. I could go into the details but they're too complicated and way to dry for this blog.

3- impose monthly fees per child per family - the fees will vary from $15 to $150 per month - per child. The law stipulates that the fees will be billed monthly and payment is required for participation in the program. The law also states that in order for the sliding scale to work all parents will be required to submit financial documents to determine income. If the parent refuses to provide such documents they will be considered at the highest income level and charged accordingly. If a parent doesn't pay the fee, the budget bill clearly states that therapists will be notified to discontinue services. However, the budget bill does provide exceptions for extraordinary financial circumstances, loss of employment, and/or any change in financial status. The lovely kicker to this is that if parents find themselves in this unfortunate situation they'll be required to provide an insane amount of documentation to prove their hardship.

I really have big problems with this Governor's EI changes. First of all, any parent caring for a child with special needs has enough to deal with. I have a healthy child with a disability (thank God) and I'm still forced to battle with insurance companies to pay for bills for hearing tests and developmental specialists. I can't imagine adding more to the already overloaded parent who endures endless hours of doctors and hospital visits.

My other grave concern is the actual legality of the change. The EI program was established under Part C of the Individuals with Disabilities Act (IDEA - 20 U.S.C.A. Sect 1431-1445; Public Health Law 2540) and it was required to be at no cost to parents - i.e. FREE. I need to investigate this mandate further and I will. I'm not going to assume that the counsel staff or the budget staff at the Department of Health or the Division of the Budget actually made sure before drafting the language. It's common sense - when you add fees the program is no longer offered to parents at no cost. I'll look into this and report back in the next week.

I'm going to monitor what happens and may even pay a visit to the Capital to lobby against these changes. You can help too - email, call and write letters to the following people - these are the decision makers. If you partner with me we may be able to change this bill before it becomes law. Even if your child is no longer in the EI program - write, call and email. Let them know the impact it had and why they shouldn't change it. Help the ones that will really suffer - the children.

If Early Intervention is changed, we will be taking a major step backwards in this State and country. Parents that are already strapped for cash won't be able to pay these fees and those that are already on the fence about the program will have another reason to keep their child out. Together we can make a difference. Together we can stop the Governor and State leaders from enacting this provision of budget but time is of the essence. We need to do this now. All of us.

To Write To The Governor:
David A. Paterson
State Capitol
Albany, NY 12224
Click here to email the Governor.

NYS Senator Thomas Duane
Chairman of the Health Committee
Click here to get information on contacting Duane, Thomas K.

NYS Assemblyman Gottfried
Chairman of the Assembly Health Committee
Click here for information on contacting Richard N. Gottfried

Write to them all. Use the same letter - just get your message out.
Let your voice be heard.

Sunday, January 25, 2009

BYE BYE - Mama!

Nathan has begun to wave bye bye all on his own!

We were told by his speech therapist two weeks ago that we needed to really work on this. Nathan had been waving but we had to hold his arm up but not anymore!

Saturday morning Danny brought him down for breakfast and he was waving and then just seconds later he said "Mama!"

We were shocked! It was 6:00am and he'd been awake for minutes and he just started performing! So, he now says dada and mama. I'm thrilled!