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.

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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.


Mairead Elizabeth Hickok said...

Wow, those are some serious changes with serious ramifications. In Massachusetts, we have to pay a one time annual fee (about $175), but that is nowhere near the potential $150 a month some parents might pay in NY! I hope that parents' voices are heard!

Shari said...

Very serious changes here! I know I dont' live in NY, but do you think it would help if I wrote a letter? I wouldn't know what to do had we not had services for Curtis when he was tiny.

datri said...

Boy, I'm glad we're out of EI, although the cuts to the school districts probably aren't much better. The parental fee is a killer. I know that a lot of the families that my former EI team saw wouldn't bother with EI if there was a fee or a bunch of bureaucracy to waive it. So what's going to happen? The school districts are going to have to deal with a heck of a problem when these kids hit Kindy.

I was also told by Kayla ABA teacher (who also does EI) that they are supposed to emphasize "parent training" as opposed to doing therapy with the kids. That way they would only need to come out once a month or as little as they can get away with.

Of course, if the State is going to make it even harder to be a provider than it is already (have you heard about the pointless audits?) I would think that many therapists will be dropping out of EI and looking for other employment. So they may need to just come once month since there won't be enough therapists to go around otherwise.

Could be worse, though. They could force center based therapy, like they do in many states. We're in rural Sullivan County, so some families would have to drive pretty far, even if they did it in a central location.

Shari said...

Kandi: his name is Turbo. That was his name when we got him. He answers to it and is very fast if a door is open. I will start obedience school with him because that is a big no no since we live right off of a main street.

Anonymous said...

Thanks for looking into this Kandi!!

Conrad, Megan and Our Precious Keaton said...

A warm hello from South Africa, I found your blog through Malakai's blog (his mom is one of my greatest friends) and I just think your little Nathan is just the cutest! He is absolutely adorable and I just loved reading through your blogs! I also loved his baby einstein party - you did such a great job!My little son also turned one in January! Just wanted to say hi and tell you all that you are in my prayers daily! Could I also write a letter/email from South Africa? God bless, Megan du Plessis

Carol said...

Thanks for sending this. I'll definitely write a letter.

Crystal said...

My son has PDD-NOS -- in plain English, he's on the autism spectrum. We've been receiving EI services for him for almost a year now, including speech therapy, special instruction / play therapy, physical therapy and occupational therapy. These intensive EI services have literally brought our son back to us.

Everyone I talk about EI cannot believe the quality services we get for him in NYC.

I'm also extremely concerned about Patterson's budget. Thank you for your post that spells out the changes so clearly. I'm writing my letters today!

Anonymous said...

I have provided Early Intervention Physical Therapy in NYS from 1993-February 2009. Working only part-time to be available to my own 3 children I was still able to use my skills and see amazing results working with teams of other professionals. Even though children on waiting lists grew and my skills and efficiency grew, I had to help less and less children and families to keep up with the paperwork changes and bizarrely managed audit program. I love working with the children and families. Many days I felt a sense of miracle in what we were accomplishing. Other days I had sleepless nights worrying over the challenging situations the children, families and I were facing. The decision to stop working created even more sleepless nights, knowing many of my colleagues were making similar choices, knowing families and children may have their services delayed during this critical period. Unfortunately, despite an amazingly talented supportive staff in the counties I worked, I can no longer work in this valuable program. Thank you for your excellent website and articulate presentation of the concerns. I will continue to pray for the families and children facing these difficult challenges and support effective intervention programs. Hopefully, when the beaurocrats get a little better organized I can return to what I love, working with children and families.

Anonymous said...

you're not gonna like this, but I believe the time has come for some changes in EI budget for NYC area. I have been an OT provider since EI was not even officially EI, and lived in Fla from 95 to 9 so i do have another state to compare services with. Not other state allots so much money toward EI and Medicaid than in NY.. I also see so much abuse of the services by parents and by therapists, in false documentation. i see famillies who feel that as long as they are receiving the services on paper, they can get all sorts of other benefits from the state(SSI, foodstamps,etc) And the billing issue, well I believe it will be alot easier to bill directly compared to reviewing so many errors from some of these agencies I get cases from and paying for their mistakes!

Anonymous said...

The Governor's plan also includes a 10% rate cut for homebased services (which if the agencies pass on the entire rate cut to the providers would be more like a 20% pay cut for homebased therapists). This may force many wonderful therapists to consider leaving homebased services, due to the financial hardship that such a pay cut can cause.