February 23, 2010

Early Intervention Concerns

A fellow mom of multiples recently brought an alarming development to my attention. According to an email she received from Easter Seals, President Obama has sent a budget to Congress for review which would freeze funding for Early Intervention. For those of you not familiar with Early Intervention (EI), it is a program for infants and toddlers with disabilities. The definition of "disability" is quite, vague, though and you may be surprised to know who is using or has benefited from these services.
My daughters were born at 28 weeks and 2 days. Clearly they had their work cut out for them the moment they arrived in this world. As their discharge from the NICU approached, our assigned hospital social worker (all NICU families at our hospital were assigned a social worker to help with a multitude of issues that arise during the stay) asked us if we had contacted the local EI team. Um... no. What? Huh? I had no idea what she was talking about. So she explained EI to me and it made sense. The team (typically made up of a physical therapist and an occupational therapist... although speech therapists can also be involved for older children) evaluate your child(ren) to determine if there are any developmental concerns. It could be something as simple as teaching a baby how to hold her head up, or it could be more complex than that. The team came to our house and evaluated the girls. Turns out Roo had torticollis (basically tight muscles in her neck). The therapist showed us some things to do and she was fine within a matter of weeks. Sue Sue had low muscle tone in her core. We were taught various techniques and exercises to help her build her strength. By their first birthday, only Sue Sue needed to continue her services. By age two, I had concerns about their speech (basically they had developed their own "multiples language" that only they understood). Sue Sue continued to receive EI therapy until her third birthday. The four of them received speech therapy from age two to three. After that, they qualified for our school district's preschool program, where various therapies are offered.
We were fortunate during all of this to also have health insurance through Hubby's work. At any time had EI services not been available we could have simply switched to a private therapist covered by our insurance, which is what we currently do to supplement the sporadic therapy Sue Sue receives at school. Let's face it, not all families have this option.
In my experience, EI is a great program. It gives our youngest citizens the building blocks they need to be successful later in life. Sue Sue's current physical therapist is contemplating ending her therapy at the end of the summer because of the strides she has made. I truly don't know if she would be this far along if we hadn't hit the ground running with her therapy at such an early age.
So, now you may be thinking, "Well, you said the President wants to freeze the funding, not cut it." OK, then let's consider this. My family is one of the lucky ones. We needed services, but we needed simplified services. We will not need lifelong services. The agencies providing EI are sorely underfunded and typically need more funding, not the status quo. About a year ago, I called the agency that provides our EI services. We needed help funding some of Sue Sue's therapy and I was at my wit's end. Sue Sue qualified for our state's child health insurance program, but because Hubby had insurance through his employer, she was rejected from the program (long story involving too much red tape to discuss here). Our income isn't low enough to qualify for Medicaid or SSI and her needs aren't severe enough to qualify for a Medicaid medical waiver. Anyway, I contacted the EI agency, distressed over the mounting medical costs associated with private physical therapy... Therapy to make her a productive, non-therapy needing member of society by age 5. After a lengthy process, involving zillions of questions, the agency informed me Sue Sue would be put on a waiting list for a program designed to help offset certain medical costs (not a free ride, mind you, but assistance with what we pay). The woman estimated it would be three to four months for Sue Sue to reach the top of the list. Throw in a poor economy and budget cutbacks and here I am a year later without making any progress. Imagine a family with a child with much more severe needs, who may only be able to receive help from Early Intervention.
I'm starting to drift away from my point. Early Intervention. It is the first steps to helping our children succeed. It is not just for multiples. It is not just for preemies. It is not just for infants and toddlers with severe disabilities. It can be teaching an infant a simple task, such as rolling over. Helping a child with a speech impediment. Any parent can contact their EI agency with questions and concerns and ask for an evaluation. So, what can you do, if you're as concerned as I am? My first step was to write my Congressman. I received a generic email back from him, but I'm hoping his staff will at least take the time to read what I had to say. My second step is to start spreading the word. My third step is to encourage you to take action if you've benefited from Early Intervention as well.


MaryAnne said...

Thanks for blogging about this. I think Early Intervention is extremely important - I've seen it benefit so many families, and I also think it has done a lot to reduce the social stigma of developmental delays.

Quadmama said...

The thing I love about Early Intervention is that is such a great "teaching tool," if you will. It's not just "oh, we'll give your child therapy." Instead, there is so much parents are taught to do as well, which can help decrease the amount of therapy needed.

LauraC said...

this is crazy they are freezing EI! SO SAD!

reanbean said...

Both of my kids have received services through EI. Tiny's lasted just 6 months, and Buba is still getting some services at this point. The work they've done with my kids has helped tremendously, but even better is all the things I've learned by watching what they do. I now know how to help my kids during all the hours of the week that EI service providers are not here. It's a fantastic program and one that desperately needs more funding. I've already written one letter and will probably write a few more. It will most likely mean the end of our services if the proposed changes (related to fees and eligibility) go through. :o(

JennaPalmtree said...

I've worked with Family Voices in DC to access services for children that health insurances companies would otherwise deny or not fully fund. Family Voices has a Colorado chapter: http://www.familyvoices.org/states.php?state=CO and I would encourage any parent who is being denied services (or not able to afford services), such as Early Intervention, to contact them. Great post!

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