BabiesHealthSpecial Needs

Starting Early: the IDEA Act and Young Children

Several times a week, adults come to my house and play with my 16 month old twins. It’s pretty goofy. The adults balance blocks on their heads, smack their lips, and encourage the boys to grasp at toys beyond their reach.

It looks like play, but it’s really therapy provided by the state because of the boys’ young gestational age at birth and low birth weight. A care coordinator, physical therapist, occupational therapist, and early childhood educator work together to help the boys overcome the physical challenges from their prematurity while they’re still young.

Having strangers in my house all the time is a little weird. I gave up trying to clean up ahead of their visits around day four, and I still feel weird when they ask me if they can use the restroom because hey, we’re all adults. But, at the same time, it’s nice to have professionals who know about special needs babies around because I don’t, and no book could have prepared me for parenting these guys. Therapists work with them and teach me to help them learn to do the things healthy kids often learn with little guidance: closing their lips around soft food, for example, or reaching out to grasp an object.

the "goalpost" position caused tight shoulder muscles PT's worked hard to overcome

the “goalpost” position b/c they were too weak to fight gravity caused tight shoulder muscles PT’s worked hard to overcome

Right now, the boys’  diagnosis is the oh-so-unspecific “complications due to prematurity” and “gross and fine motor delays.” But, their micro-preemie status and extended NICU stay means that other problems may pop up as they age. There have been hints of some issues for which they’re too young for a diagnosis that therapists work on with them, and also many issues we checked off the list of potential concerns with a sigh of relief.

The federal government funds these nomadic therapists with a block grant to the states from Part C of the Individuals with Disabilities Education Act (IDEA), and as a result state intervention programs are often referred to as “Part C” for short despite the fact each state program has its own name and abbreviation. Programs must use a multi disciplinary approach, create a plan (an IFSP) that outlines the services each child will get, provide safeguards for the families’ rights, and provide free screening. Other than that, states have leeway in how they implement the program: who gets in, whether they charge on a sliding scale, where services are provided, and even the maximum age of children in the program.

One of the purposes of Part C is minimizing the population of children requiring the IDEA Act’s typically underfunded Part B (which is for school-aged children). That’s what we’ve been told the government is banking on: investing money from infancy to preschool age will result in long term savings because these children will need fewer expensive interventions and special education services at ages 4-21 and may even avoid long-term support.

Tummy Time with the Therapist

“reading” during therapy (pic by Deek)

There are several variables in whether or not a child getting early interventions will improve: family environment, the severity of the child’s condition, access to stimulating activities, and access to therapeutic care. Because of this, it’s hard to measure whether or not Part C works. In our case, the boys are catching up with their peers. Therapy retrains their brains to perform certain tasks correctly—for example, reaching for an object in front of them by moving an arm directly forward rather than reaching up and then down.

Therapy also helps them get around problems that have a domino effect. For example, M could not roll or sit, so he didn’t get to experience stimuli the way his peers did, which would delay his learning. The therapists worked to help him develop core strength a different way so that he could sit up despite not meeting the milestones that usually occur before sitting.

But, that’s just my kid. Is early intervention for infants with disabilities and delays cost-effective for state and federal governments at a widespread level? The answer seems to be “probably.” Most articles regarding the effectiveness of Part C rely on extremely small studies of similar situations involving specific disabilities. The most comprehensive research about early intervention programs comes from the NEILS study in 2007, which wasn’t designed to determine the effectiveness of early intervention programs (NEILS, p 15-16).

Because NEILS did not compare the accomplishments of children in the program with those who did not receive services, it’s hard to say that early intervention is effective. NEILS concluded that some children who received services would require lifelong care even after intervention, but “a sizable percentage. . .were doing as well as their same-age peers by kindergarten” (NEILS, p 15-16).

Parent interviews showed that “families who participated in EI reported many positive outcomes, including being able to care for their children and advocate for them with professionals, both when the children were in EI and later when they were in kindergarten” (NEILS, p 15-16). I have no clue how I would have met my sons’ bewildering needs without the  guidance that has made me a more confident advocate and ensured that my expectations of them are developmentally appropriate.

Grasping and eating are two complex skills learned through intervention

Grasping and eating are two complex skills learned through intervention with the OT (pic by Deek

One problem with these programs is a lack of continuity in eligibility and treatment from state to state which makes life hard for families that move. For example, a baby in Massachusetts qualifies after 5 days in the NICU, but Connecticut requires a minimum of 28 days (MA Guidelines p 13).  Some programs take a home-centered teaching approach, while others have a center-based therapy approach.

The program’s promotion can also be hit or miss. For example, I met a mother whose son had cranial surgery so he couldn’t do tummy time and had fallen behind. The hospital had not effectively explained that her son may be eligible for Part C. She didn’t know that in our state therapists come to your house or day care center, or that it is free for most families. I wonder if this was due to a language barrier because she spoke mostly Spanish (though the hospital has translators and uses them regularly) or if no one had explained it since at the time of his hospitalization he was not delayed. Either way, this child may have been a candidate for early intervention, but had not been screened.

Despite some problems, Part C has been beneficial for us. Enrollment provides access to other services, and I appreciate the support because parenting children with even mild special needs can be stressful.

 

GP writer Katiea lays out other things to do if you suspect your infant may be special needs infants in a previous post, and you can find the phone number and addresses of all the state coordinators here, and a list below of each state’s site (and the program’s abbreviated name) just in case this sounds like someone you know:

Alabama (EIS), Alaska (ILP), American Samoa (HH-IE), Arizona (AZEIP), Arkansas (FC), California (ES), Colorado (EIC),  Connecticut (B23), Delaware (CDW), Florida (ESS), Georgia, Hawaii (EIS), Idaho (ITP), Illinois (EIC), Indiana (INFS), Iowa (EA), Kansas (KSITS), Kentucky (FS), Louisiana (ES), Maine (EI, site bare bones, so maybe call or e-mail), Maryland (MLL), Massachusetts (EI), Michigan (EO), Minnesota (HMG), Mississippi (FS), Missouri (FS), Montana (EIS), Nebraska (EDN), Nevada (PA), New Hampshire, New Jersey (EIS), New Mexico (FIT), New York (EIP), North Carolina (NC-ITP), North Dakota (NDEI), Ohio (HMG), Oklahoma (SS), Oregon (EI/ECSE, not user friendly) Pennsylvania (EI), Puerto Rico (PIT-AJ), Rhode Island (EI), South Carolina (SCFS), South Dakota (BTT), Tennessee (TEIS), Texas (ECI), United States Virgin Islands (ITP), Utah (BW), Vermont (BTT), Virginia (ITC), Washington (ESIT), Washington DC (DC EIP), West Virginia (BTT), Wisconsin (BTT), Wyoming (EIEP)

All pictures belong to Deek. Please don’t duplicate or download. . .thanks.

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Deek

Deek

Deek lives with her husband, twin sons and two cats in the northwest. She teaches and writes about parenting in the NICU, her experiences as a parent of micro-preemies and skeptical parenting.

2 Comments

  1. April 9, 2014 at 6:35 pm —

    Thank you for writing this, it is such a great resource for other parents in your situation. I love seeing your little ones grow up too! They are precious.

    • April 9, 2014 at 8:54 pm —

      Thank you! It’s been an interesting experience–and my boys have grown very perseverant as a result of all the repetition (“Yayyyyy! Good job! now let’s do it again!”). I think my biggest concern with Birth to Three (as it’s called in our state) is that families who don’t see a pediatrician regularly can fall through the cracks.

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