What to Do if You Suspect Your Child Has a Developmental Delay or Learning Disability – Part Two

Finding Help for Your Preschooler (Age 3 and up)

by Erika Goyer, Hand to Hold Family Support Navigator

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Photo credit: Smith Family

Every child has unique developmental needs, but some children’s needs are greater than others. Most children who spend time in the NICU will experience a developmental delay of one kind or another. Some of those delays are immediately apparent and others will take years to emerge. Early childhood interventions (age birth to three) are meant to quickly identify and address delays so that young children can reach their potential.  (In previous articles, we talked about early childhood development and what to do if you suspect your child is experiencing delays.) But at what point can you tell if a short-term delay is actual the first sign of a long-term problem? And how do you get help?

The first thing to know is that it is perfectly normal to need special educational support.  When a child is born early and has special medical needs it is natural that they will have unique educational needs as well. The next thing to remember is that you are not alone. According to LD Online, The National Institutes of Health estimate that one in seven Americans has a learning disability and more than 2.7 million students in our public schools receive special help and instruction in school because of their learning disabilities. Finally, remind yourself that this is a good thing! We are fortunate to be at the point where families and educators can recognize and address what were once “invisible disabilities” and get kids the help and educational supports they need to be successful learners.

Read more about the state of what we know in this article: “Neuroscience and Special Education” published by U.S. Department of Education’s IDEAs that Work: The U.S. Office of Special Education 

 

The Transition from ECI to PPCD

Most children who have spent time in the NICU are at risk of having developmental delays. Because of this they will most likely be referred to receive services from your state’s Early Childhood Intervention program (ECI). ECI serves families with children who have a developmental delay, atypical development or a diagnosed medical condition.

Under IDEA (the Individuals with Disabilities Education Act) Early Childhood Intervention is offered to families with children age birth to three. After age three families are eligible for the Preschool Program for Children with Disabilities, otherwise known as PPCD. If your little one has been receiving services through ECI they will almost always be referred for PPCD. But you need to understand key differences between the two programs to know whether or not you child will be eligible.

With ECI…

  • Programs are developed for children birth to age three.
  • Programs are provided by local community agencies (e.g. Any Baby Can, Easter Seals).
  • Services are offered in the child’s “natural environment.” 
  • Families pay for services on a sliding scale.
  • Families work with their coordinator to develop an Individual Family Service Plan (IFSP).
  • The goal is to support the family and minimize the impact of the child’s developmental delays.

In PPCD…

  • Services are for children between the ages of three and five.
  • Preschool services are offered by your child’s home school district.
  • Your child will go to school for all or part of the day. (Transportation is provided.)
  • Services are free.
  • Families work with their educational team to develop an Individualized Education Plan (IEP).
  • The mandate is to educate “children with disabilities.”

So to be eligible for ECI a child must be younger than three and have a significant delay in development in at least one of the following domains: cognition, communication, physical (including vision and hearing), social or emotional development and adaptive behavior. Or they can have a condition associated with significant delays in development. But to be eligible for PPCD a child must have a disability.

The key consideration is whether your child meets the qualifying condition of being a “child with a disability.” According to IDEA a child with a disability is defined as a child who has one of the listed diagnosed conditions and “who, by reason thereof, needs special education and related services.”

Making Sure Your Child Gets Referred for Services

There are three ways your child can be referred for services: directly from ECI, through the Child Find program, and at the request of someone who works closely with the preschooler (e.g. parent, therapist, pediatrician, teacher).

From ECI

If your child is enrolled in ECI you with work with your coordinator on a transition plan for preschool. Unless you ask them not to, ECI will share your child’s information with your local school district. The school district will be given this information at least 90 days before your child’s third birthday. ECI must notify you ten days before they plan to contact the district. This gives you the opportunity to decide whether or not you want that information passed along. Because you have options. You may decide your child is not ready for school yet or that you want to look at private preschools. If this is the case your coordinator will help you prepare for these options.

 To find out more about this process and your child’s transition from ECI read this excellent resource:

Beyond ECI. A Spanish version is also available.

 

From Child Find and Individual Referrals

What do you do if your child was not eligible for ECI services but they have special educational needs? There are other ways to get connected with services. These options exist because some children are not identified as having a disability or needing support until later on. In fact, most specific learning disabilities are not identified until a child is much older and is facing the challenges of reading, writing, and math. Remember: A child can be referred for services at any time between the ages of birth and 21.

One way is to make the referral yourself. If you suspect you child needs help you can contact your school and request an evaluation. It’s best to do this in writing. Once they receive your request your school district has 60 days to evaluate your child and determine if they are eligible for services.

 Call Child Find at 512-919-5206 for Austin and surrounding areas.

Or contact your local school district.

Child Find’s mandate to make sure

all eligible students are located, identified, and referred.

Remember: Whether you refer your child or someone else does, everything must be done with your consent.

 

Screening and Evaluation

Once your child has been referred they will receive a free comprehensive educational evaluation from the specialists in your district.  This means that the child will be evaluated “in all areas related to the suspected disability, including, if appropriate, health, vision, hearing, social and emotional status, general intelligence, academic performance, communicative status, and motor abilities.” (34 CFR Sec. 300.532)  For example, if a child is having problems with following directions or socializing with peers it makes sense to rule out a hearing loss before you start screening for auditory processing disorders, ADHD, or an Autism Spectrum Disorder . Likewise, if a child has ADHD you want to address their social development as well as their instructional needs. And you would want to be aware that 1/2 to 1/3 of children with ADHD also have a diagnosable learning disability.

Evaluations should not only be timely and comprehensive, they should also be collaborative. You should expect to participate fully in the process and do things like fill out parent questionnaires, offer developmental histories, and to always share your unique perspective. Any information you can share with the evaluation team is helpful, including the circumstances around you child’s NICU stay and their specific health care needs. You should also know that you are allowed to share the results of previous developmental screenings, the opinions of your health care team and the results of independent evaluations. You can even invite your doctors and therapists to attend meeting where you discuss your child’s Individualized Education Plan with the school.

Finally, your child should be observed in all environments, not just the classroom. Students  may need support at recess, during lunch, on the bus, and at home. Good evaluators with take the time to find out how your child is doing all school day long.

What is Special Education?

Special Education has come a long way in recent decades. Many people don’t stop to think that before 1975 school districts were not required to educate students with disabilities. Many children were denied the opportunity to go to school based solely on their disability. Our children are fortunate to be educated at a time when all students are expected to have equal access and opportunity to learn. Old perceptions and stigma have fallen away. Families and educators now realize that Special Education is not a label or a place, it is a wealth of services and resources that all children can enjoy as they enter the classroom together each morning!

 Read more about the Transition from Early Intervention to Preschool

 

 

 

Erika Goyer is the mother of three boys and a family support navigator with Hand to Hold. Her oldest son Carrick Michael was born at 27 weeks gestation and weighed 1 pound, 14 ounces. Carrick died soon after his birth due to complications of prematurity. Erika went on to have two more high-risk pregnancies and two healthy sons, one of whom has developmental delays.

Comments

  1. I’m having a hard time getting assistance for my son. He’s been tested by special education, but was denied services. He is really struggling in fourth grade, failing almost all subjects. HELP!

  2. Jennifer Beatty says:

    I am so sorry to hear that your son is having such a difficult time. Often the school’s special education services may not find the issue while having him tested with an outside specialist might. I would recommend talking with your son’s doctor about getting a referral to a specialist, either school psychologist or neurologist who can help identify if he has any learning disabilities and if there are any steps you can take to help with the difficulties he is having. While services may not get approved through school, you may be approved for many different services through your insurance company such as occupational, speech or physical therapy or depending on what they find he may find counseling or medication helpful. Best of luck. Jennifer

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