(p. 165) Intervention Services
■ Many types of intervention are available.
■ State provided early intervention services may not be enough.
■ Services are available through the public school system.
■ Be skeptical of interventions that promise to cure your child.
Should I pursue early intervention services through my state?
Every state has an early intervention program for infants/toddlers who are felt to be at risk. The name of this program tends to vary by state, but it typically provides in-home therapy services from birth through 3 years of age (at which point special needs preschool starts for eligible children). To access these services, you usually need a referral from your pediatrician or another healthcare provider, which is then followed by an intake appointment where a therapist assesses your baby’s eligibility and needs. If your child is showing issues with development in any area, they may qualify for state-funded therapy.
What if my child does not qualify for early intervention?
If your child is found to not qualify for early intervention, it does not mean that everything is developing just fine (although it may mean (p. 166) that), but rather that any areas of concern were not found to be problematic enough to meet whatever cutoff score they have. In this case, your next option is to explore private therapies. Frankly, it is typically worth looking into this even if your child is receiving early intervention therapies through the state as more intense or more specialized intervention may be needed.
What types of therapies are there?
Here are the most common types of therapies for young children and the types of concerns they can address:
■ Speech-language therapy. A speech-language pathologist can work with your child to address concerns with articulation (how clearly your child speaks), expressive language (how easily your child is able to communicate their wants and needs), receptive language (how easily your child can understand what is said to them), and some problems related to feeding.
■ Physical therapy. A physical therapist can work with your child to address concerns with balance, coordination, strength, or other problems with using the large muscles in your child’s body (think issues with movement of the arms, torso, or legs).
■ Occupational therapy. An occupational therapist can work with your child on issues using smaller muscles (especially those in the hands) so that tasks such as writing or dressing are easier. Some occupational therapists also will work with children on being able to regulate their emotions more easily and on addressing sensory concerns.
■ Applied behavior analysis (ABA). A behavioral specialist can work with you and your child on decreasing the frequency of problem behaviors (e.g., meltdowns, aggression, or repetitive movements like hand flapping) and increasing more desired behaviors. This type of therapy is most commonly recommended for children with autism as well as young children with attention deficit hyperactivity disorder (ADHD) or other difficulties with controlling their emotions or behavior.
(p. 167) ■ Hippotherapy. This is also known as therapeutic horseback riding. The goal of hippotherapy is to build your child’s balance, strength, range of motion, and their ability to plan their movements (also known as motor planning). There are a number of small studies (primarily with children with cerebral palsy) that do show improvements in gross motor skills following participation in hippotherapy. Although not yet well studied, hippotherapy may also help children improve thinking-based skills such as listening comprehension and sequencing.1
■ Floortime. This is a type of play based therapy often used for children with autism and involves a therapist guiding you through interactions with your child in which you meet them at their developmental level and then try to strengthen communication skills.
Should I consider a therapeutic preschool program?
If your child is presenting with severe developmental issues or has been diagnosed with a genetic disorder (particularly if associated with a high risk of intellectual disability) or autism, you should research whether a therapeutic preschool program might be an appropriate fit. These types of programs may be covered by your medical insurance and typically involve teaching early academic and self-care skills in the context of intensive sessions of speech-language, occupational, and physical therapies as well as sometimes ABA therapy. Compared to public school programming, these types of programs generally offer more intensive therapy in a smaller group (or sometimes one-on-one) setting from providers who have more specialized training.
If my child does not qualify for school-based therapies, should I consider private therapy?
Absolutely. Schools have a particular threshold used to determine whether services are needed to help your child make appropriate academic progress. If they determine that your child does not qualify for services, all that means is that your child did not meet their criteria. (p. 168) This does not necessarily mean that your child does not need some additional support to make better progress. If you are concerned that a skill is not developing well, then consider private therapy. Additionally, depending on what the private therapist finds during their evaluation, you may be able to appeal the school’s decision to deny your child services.
Does my child need another assessment from a private therapist?
Depending on what type of workup has been done already, a private therapist may want to do some additional testing on your child. This provides them with more information about where your child needs support and also establishes a baseline to help document progress. Make sure to share all private or school-based testing with them beforehand so that they can determine whether additional testing is indeed necessary.
How much therapy is too much?
There is a far greater risk that your child will receive too little therapy rather than too much. This is particularly true during the early childhood years because of the rapid pace of development (and the risk of your child falling further behind if skills are developing more slowly). When your child is experiencing difficulty in an area, I do not think that you can do too much to strengthen your child’s skills in this area. You do, however, need to be cautious about participating in unproven interventions that could cause you to waste time and money. Additionally, it is important to remember that every child needs time to play and time to simply be a child. If, between school and therapies, your child does not have downtime, then you probably do need to think about scaling back a little on the therapy side. If this makes you nervous, remember that time spent playing also is very important for supporting healthy brain development. It is also okay to scale back if you find that you are struggling to manage your child’s therapy schedule along with your other responsibilities.
(p. 169) Will insurance pay for private therapies?
Depending on your health insurance, you may have benefits that cover a certain number of therapy appointments a year. In almost every circumstance, your child will need to have a diagnosis to be eligible to have services paid for by your insurance company. Sometimes a diagnosed medical condition that is known to affect development (such as a seizure disorder or genetic condition) will be sufficient, and other times a diagnosis indicating problems in the development of a specific skill area will be needed (such as an expressive language disorder or a developmental coordination disorder). Certain therapies may only be covered if your child is diagnosed with a very specific condition. For example, applied behavioral analysis is often only covered by insurance if your child has been diagnosed with an autism spectrum disorder.
Does my child need private therapy if they are receiving services through an early intervention or school program?
Even if your child is receiving therapies through an early intervention provider or through their school, I strongly recommend that you supplement those services with private therapy if possible. Even if the quality of your child’s federal/state-funded services is excellent (which, unfortunately, may not always be the case), therapy services may not be as intense or specialized as your child needs. Often these therapies are given for 30 to 60 minutes a week, and your child may make more rapid gains if you can supplement this with additional time in therapy or with more specialized types of therapy. How much additional therapy is ideal depends on a number of factors including the severity of your child’s delays, how many areas they are struggling in, the cost of therapies, and your family schedule.
What about educational tutoring?
If your child is struggling in a particular academic area, then academic tutoring can be very helpful. It is ideal if the tutor you choose has some (p. 170) familiarity with the curriculum being taught at your child’s school so that they can ensure that there is consistency between how they explain concepts to your child and how the teacher is explaining them; otherwise, your child is at risk of becoming more confused.
In some cases, specialized educational intervention will be needed. This is particularly true for children with learning disabilities or intellectual disabilities. For these children, a slower pace of instruction may not be as helpful as using different instructional approaches. This is most common when children are struggling with reading, in which case tutors with certification (or, at the very least, training in) multisensory reading interventions (such as Orton-Gillingham, Wilson Reading System, or Lindamood-Bell) may be best. Be cautious when considering working with a tutoring company that makes lofty promises and charges a lot; sometimes these are no more helpful (and, frankly, sometimes less helpful) than hiring a retired teacher.
Funding to Help You Access Supports
Can I obtain funding to help with the costs of my child’s care?
In the United States, raising a child costs around $240,000 and that cost may quadruple if you have a child with a developmental disorder! If your child will need support into adulthood, the true cost may be even higher. You need to do all that you can to minimize your out-of-pocket costs and make sure that you spend your own money wisely.
There are numerous sources of funding available from agencies at the state and federal level. Unfortunately, these funding sources may be difficult to find out about and annoying to apply for and maintain. Additionally, wait lists are, unfortunately, common. First, do not let wait lists deter you from applying for anything ever. Apply for anything that you think seems appropriate for your child.
One of the best places to start is with the TEFRA waiver (also known as the Medicaid deeming or Katie Beckett waiver as well as probably multiple other names—remember, I said this would not be an easy process!). This waiver provides families with money to cover the cost (p. 171) of medical appointments, therapies, etc. for children with significant needs. This waiver also allows you to waive some income requirements, so families who do not qualify for other Medicaid-based services may still qualify for this waiver. Your state also will have a department that oversees funding and regulations for children and adults with developmental disabilities. Their website should provide information on how to apply for the TEFRA waiver and may also list other funding sources available to children in your state.
Be aware that applying for any state or federal funding can be very tedious. The paperwork is often lengthy, and typically your child’s eligibility will need to be rereviewed every year (even if they have a condition which is known to be lifelong). You also need to maintain thorough documentation of how you use any funding. But, if this allows you to pay for services for your child, it is generally worth the headaches.
Will my insurance cover therapies?
Your health insurance may cover the cost of certain types of therapies including speech-language, occupation, physical, and ABA therapies. How many therapy sessions they will cover as well as the types of therapy they will cover typically depend on the type of plan that you have as well as the condition(s) your child has been diagnosed with. It is sometimes possible for you or your child’s therapists to campaign for your insurance company to cover additional therapy sessions once you have met your annual limit, but this often takes a lot of advocacy.
Are my child’s treatment-related expenses tax deductible?
You will need to consult with an accountant to get the most accurate answer here; however, in many cases treatment-related expenses that are not covered by insurance can be considered as a medical tax deduction. This may include the cost of travel/hotels for medical appointments with specialists, private evaluations sought out with qualified medical professionals, and therapy sessions not covered by insurance. You also may be able to claim tuition for a therapeutic school as a medical tax (p. 172) deduction, although you will typically need a note from a physician documenting the medical necessity of this.
What do I need to know about financial planning?
If you have a child with a significant developmental disorder, who may struggle with managing their own finances in adulthood or who may not be able to live independently, I recommend you consult with an estate planning attorney, who specializes in working with families who have a child with special needs. To maintain government benefits, your adult child may only be able to keep a small amount of money in a personal bank account. An attorney can help you set up a special needs trust, which will allow money to be put aside (with safeguards in place to ensure it is used as allocated) to support your child financially when you are not around. In some cities, you also may be able to identify financial planners who have expertise in working with families who have a child with special needs.
Buyer Beware: Don’t Fall Victim to Pseudoscience
If a therapy sounds too good to be true, should I be skeptical?
Yes! We are increasingly recognizing that more needs to be done to help children with developmental disorders make progress. Unfortunately, there are some companies that prey on parents who want to do anything they can to help their child, and there are other companies who promote therapies that may eventually be shown to be beneficial, but currently do not have a lot of research supporting the benefits. There is a long history of interventions that were once touted as the next big thing, and some were simply found not to be effective, while others ended up doing tremendous harm to children or parents (such as facilitated communication or chelation therapy). Many interventions now have started to weave in information about the brain (which is sometimes, but not always, true) into their advertising pitches. Be aware that even though this may make a “treatment” appear more legitimate or even make it (p. 173) look like it is scientifically proven, it may not be. False advertising about therapies seems to be particularly problematic for autism, with the Food and Drug Administration having made a recent statement on the need for parents to beware of potentially dangerous or ineffective therapies.2 While not a foolproof strategy for identifying therapies that may be a waste of your money, I recommend that you do a lot more homework if you come across one or several of these:
■ A treatment that is provided by technicians who are not listed on the company website and whose training is unclear.
■ A treatment that claims it can “cure” or “treat” a developmental condition or, often more commonly, lots of different developmental conditions.
■ A treatment that says it will cure a developmental condition quickly.
■ A treatment that is not clearly described or talks about secret ingredients or techniques.
Are any therapies controversial?
Some therapies do not have much data to suggest that they work, but they are sometimes widely advertised as being able to “fix” or cure many conditions. No one can say with absolute certainty that the following approaches would not help your child, but there is a possibility that you are wasting both your time and money.
■ Functional neurology. Functional neurology refers to an approach used by some chiropractors aimed at treating brain-based conditions and sometimes also at enhancing performance in the healthy. A recent review of multiple studies exploring the benefits of functional neurology techniques to address conditions such as ADHD, autism, and traumatic brain injury did not find robust evidence of beneficial effects.3
■ Hyperbaric oxygen therapy (HBOT). HBOT involves entering a pressurized container in which you breathe a more concentrated level of oxygen. It is a known treatment for decompression sickness and can also help with some other medical issues (e.g., carbon monoxide poisoning, wound healing). HBOT has recently started to gain traction as an intervention for autism and also for other (p. 174) developmental conditions. The Food and Drug Administration has stated that HBOT is not a clinically proven intervention for developmental disorders nor has it been cleared as safe, and there is little compelling data from research studies.4
■ Vision therapy. This type of therapy is usually provided by an optometrist or chiropractor and involves having your child participate in various eye exercises with the aim of addressing issues with learning (especially reading or writing problems). There is some research that suggests that vision therapy may be beneficial when your child has a specific condition called convergence insufficiency5 (something a pediatric ophthalmologist should diagnose), which occurs when the two eyes do not work well together and this creates difficulties focusing. Orthoptics, which are a specific series of exercises, may be helpful in treating symptomatic convergence insufficiency. If your child does not have convergence insufficiency and instead has a learning disability or developmental disorder, the benefits of vision therapy are scientifically unsupported (a stance taken by the American Association for Pediatric Ophthalmology and Strabismus and the American Academy of Ophthalmology among others).6
■ Brain training. Brain training games and programs have been on the market for a number of years now. These programs are primarily offered by for-profit companies, and many make strong statements about the benefits they offer. To date, much of the research showing that brain training games and programs “work” is paid for by the companies that make the products themselves (which raises issues about conflict of interest).7 In many cases, these research studies are not well designed.
The Federal Trade Commission (which focuses on protecting consumers) has fined some companies that make these games and programs for making claims that were not supported by science.8 In general, research suggests that these brain training programs make you better at completing the “brain training” tasks, but that this does not seem to clearly translate into improvements in real world functioning.9
There are, however, a number of companies actively working to use technology to help people with neurological disorders function better. Many of these companies have been co-founded by medical doctors (p. 175) and psychologists who recognize the need for new tools to help support people who may be struggling to meet academic, vocational, or social demands. You can attempt to differentiate these companies from those motivated solely by profit in a couple of different ways. First, you can typically find details of their staff/board members on their websites, and their training typically makes it very clear that these are people with strong academic and clinical backgrounds. In general, these programs do not make claims about “curing” issues, but instead use very cautious language to indicate that there may be a possible benefit in a certain skill area if you use their product. Finally, many of these companies are actively involved in tightly controlled research studies to show whether or not their product is effective.
We are very much in the early stages of blending the worlds of neuroscience and technology. I think that we will ultimately have a number of excellent technology-based tools that may be able to help with diagnosis, intervention, and monitoring progress. Right now, however, there are very few solid options, and, unfortunately, a number of companies are offering products that cost a lot but do very little.
Reviewing Information on the Internet
Should I believe everything I read online?
There is so much information available on the Internet, but sifting through all the useless or inaccurate information to find what will truly help you can be a challenging task. Whenever you look at information online, be skeptical.
Please do not try to diagnose your child based on what you read online. A diagnosis should only be made by a qualified professional. For many medical conditions, we have medical tests that will tell us if we have a specific condition or not. For many developmental issues, there is no one specific “test” that can determine if your child has a particular condition or not. One of the challenges with trying to diagnose your child yourself is that many symptoms are not specific to one condition. For example, hand flapping is a commonly discussed behavior seen in children with autism, but children who do not have autism also may flap their hands.
(p. 176) More so than at any other time, our understanding of the brain is growing and changing rapidly. The fast pace at which our knowledge grows means that information you find online may not reflect the most current information. This is part of why you need the best people possible to be a part of your child’s treatment team as they are more likely to be up-to-date on the latest research.
What about this intervention I read about on Instagram, Twitter, or Facebook?
Social media offers us a fantastic way to connect with others and share information; however, you must remain skeptical. While online chats and parent groups can be good sources of information, remember that information you hear from other parents about what worked or did not work for their child may not apply to you. Anyone can start a website or blog, so you need to consider both the expertise of the person writing what you read as well as any financial involvement they may have in anything they promote. Similarly, a company telling you their product is amazing and that they have confirmed this through their own research studies really does not mean much. You want to see those claims backed up by independent research.
If a celebrity, friend, or even a stranger shares that a specific intervention helped their child, you need to remain cautious. A parent’s perception that a specific improvement in their child can be linked to a certain intervention may not be accurate. First, children grow and develop all the time, which means that any improvement in functioning might be related to an intervention or it might have been going to happen anyway. Additionally, if a child is participating in multiple interventions at once (perhaps some scientifically proven and some unproven), you have no way of knowing which may have contributed to any improvement. Finally, and perhaps most important, if you spend a lot of money on an intervention, you are more inclined to want to believe that it worked (if you look into the topic of cognitive dissonance in psychology, you’ll develop a clearer understanding of why we do this). Essentially, no one likes to believe that they might have wasted money, so they will look harder for any evidence that an expensive intervention is working. The person providing the expensive, but (p. 177) unproven intervention may further exploit this, by constantly telling you how much better your child is getting without providing you with sound data.
How do I access good quality information on the Internet?
For easy access to material that summarizes recent research, you can look at websites for large organizations such as the following:
■ General parenting and medical information from the American Academy of Pediatrics: https://www.healthychildren.org
■ General parenting information for children through age 3 years: https://www.zerotothree.org/
■ Information on child development from the Centers for Disease Control and Prevention: https://www.cdc.gov/ncbddd/childdevelopment/index.html
■ Information on genetic disorders: https://ghr.nlm.nih.gov/
■ Information on common learning issues in children: https://www.understood.org
How do I search for research articles?
One of the most informative ways to gather research-based information is actually to read research studies themselves. Research studies are not designed to be read by parents, but they can be helpful. The most approachable portion is the abstract, which is a short summary of the key findings and implications for the paper. Abstracts are also free to read while the full journal article may not be.
Research studies are most easily located through one of two databases:
For either database, you will need to enter search terms. Place any phrases or terms that belong together in quotation marks (e.g., “developmental delay” or “seizure medication”). You can include multiple search terms by using the word “and” between them. For example, if (p. 178) you search “seizure medication” and “attention” and “pediatrics,” you are telling the database that you only want to see studies that mention all three of these things. The more specific your search terms are, the more likely you are to come across relevant studies.
How do I know if I have found a quality research article?
When your results come up, you can then skim the titles to see which appear most relevant to your specific question. If using Google Scholar, you can easily see the number of times a study was cited by other research studies, which will give you some idea of how interesting or important other professionals find this study.
In general, articles from journals that are peer-reviewed are likely to be of better quality. A peer review means that the article has been thoroughly reviewed by several professionals (typically at least two or three) to determine that the study has been designed well, the interpretation of the results is accurate, and the study contributes some meaningful information. Only if the reviewers and editors approve the study can it be published, and they often recommend changes to the study before it is approved to help make the paper as strong and meaningful as possible. Without access to an academic library (which you will have if you are a university student or work for a university or healthcare system), it can be challenging to determine if an article is peer-reviewed. The best way to do this (although it is somewhat tedious) is to do a search for the specific journal. Each journal will usually say whether it is peer-reviewed or not.
Once you find a study that seems relevant, you want to see whether the study used what is called a randomized controlled trial. This means that a study has a good comparison group. A comparison group matters because it helps you understand if an intervention really worked. Sometimes the comparison group will be children who did not receive any intervention (such as children who are on the wait list for a treatment) and sometimes the comparison group will be children who received the standard treatment (and the authors want to see if their new treatment works better). The randomized part means that children were randomly assigned to one of the groups so we know that (p. 179) they were not selecting children who are in some way different from each other.
For example, let’s say a study looked at the effectiveness of a reading intervention, but they only gave that intervention to 100 children with very mild reading difficulties (meaning that selection was not random). If these children got better at reading, they might try to claim that their intervention can improve any child’s reading skills, but this would not be accurate based on their study. Maybe this intervention only works for children with very mild reading issues. Maybe the improvements shown in the study were due to something other than the actual intervention, such as the children having someone sitting with them and encouraging them while they were reading, which boosted their self-confidence and their reading skills.
On the other hand, imagine if the authors had taken their reading intervention and randomly assigned 200 children to either their new intervention or the standard intervention. Now, if they show that the 100 children receiving their intervention improved twice as much as the children receiving the standard intervention, we have a result that is much more interesting and much more meaningful. From here, what we would want to see are other studies that can replicate these same findings to help confirm that the effects the first study showed are real.
What do I need to know about receiving services through the school system?
The most important thing is to know your rights so that you can advocate appropriately for your child. School-based supports are available to address issues with cognitive functioning and learning as well as behavioral and emotional difficulties that may impact academic progress. The Child Find mandate requires that schools have a process for identifying and evaluating children who may need special education services. An easily approachable website to help you understand your rights is http://www.wrightslaw.com. I also recommend that you take a look at the Department of Education website for your state.
(p. 180) The public school system is obligated to provide your child with a free and appropriate education in the least restrictive environment. They are not, however, legally obligated to help your child reach their full potential. This does not mean that the public school system does not have your child’s best interests at heart, but rather that it may not be reasonable for you to expect them to provide every service your child may need. So, you need to maximize what supports you can from the public school system and be prepared to supplement that with other supports outside of school.
The public school system may not find your child eligible for services until there is clear evidence of a problem. For example, I might be able to see a looming problem that is mild currently, but I am very concerned that this will become a significant problem unless intervention is started as soon as possible. The school system may, however, wait until a problem reaches a certain threshold of concern before implementing supports.
In my experience, waiting until this point can make a problem harder to correct because you are now trying to close a larger skill gap, because your child may have to unlearn bad habits, or because they may be experiencing mood or behavioral issues as a result of their academic difficulties. Needing a skill deficit to reach a certain threshold of concern also can be problematic if you are doing a lot to help your child outside of school. For example, if you are spending each evening reteaching everything covered in school that day to ensure that your child can keep up, it may be harder to get some supports put in place because school sees that your child is making good progress and they may not factor in all the work that you are putting into making that progress.
Navigating the process of obtaining any supports through the school system can be tricky, thanks to a lot of rules and a myriad of acronyms. Many school staff are highly committed professionals who go above and beyond to help their students; however, many school systems are expected to operate with insufficient budgets and staff. This can sometimes create a situation where access to services is delayed or denied or where your child is provided with a lower level of support than they need. Sometimes, too, a school is not providing the most appropriate services for your child because they do not actually have a good grasp of what your child needs.
(p. 181) When can school-based services start?
When children age out of early intervention services, the school system takes over. If your child has significant developmental issues, you may be able to begin accessing services through the school system when your child turns 3 years old.
How do I access school-based services for my child?
The exact nature of the services available varies by state and county, but typically includes full or part-time preschool, behavioral therapy, and speech-language, physical, and occupational therapies. For your child to access school-based services, they will need to qualify for them. As the process of qualifying for state-based services is often a lengthy one, I would strongly recommend you start learning about the application process and talking with the special education staff at your assigned public elementary school before your child is 2½ years old. Also, be aware that the school system must adhere to federal timelines when responding to your request for additional supports.
■ If your child is already receiving early intervention services through the state, they should help you apply for school-based services. If they have not started talking to you about this transition by the time your child is 2½, go ahead and start a conversation with them about the process.
■ If your child already has a diagnosis from a medical doctor, psychologist, neuropsychologist, or therapist, you can typically start the process yourself by contacting your local elementary school and requesting that your child’s eligibility for an individualized education program (IEP) be considered. Typically, they will provide you with a lengthy application packet that will need to be returned to them, along with any supporting documents you have (e.g., medical records and testing that documents your child’s educational needs and/or areas of difficulty).
■ If your child does not already have a diagnosis or documentation of issues with development, then part of the qualification process through the county school system will involve a developmental assessment to determine whether your child’s needs are significant enough to (p. 182) warrant access to these services. School assessments may not be as comprehensive as private evaluations, and, as such, they may miss areas of delay that may be captured in a more specialized evaluation.
If your child has already had a comprehensive private evaluation, the school system may elect not to do any further testing as they may find that they have enough information from this private evaluation to make their determination about eligibility and the services needed. Sometimes, the school system will choose some additional supplemental testing of their own. It is okay if they want to do this, and it is also okay for you to ask about the qualifications of the person who will be doing the testing and also what information they are hoping to gather from this evaluation. Sometimes, this supplemental testing is simply a formality. If you have not had a private evaluation done recently (typically within the last 12 months), school will almost certainly want to do some testing with your child.
How should I communicate with the school system?
I recommend that you aim to communicate with school staff in writing whenever possible (i.e., email, registered mail, fax) so that you have a written record of what has been communicated. These records can help you keep track of what you said to members of your child’s school team as well as what has been said to you. If members of the school team contact you by phone, I recommend that you write down a summary of the phone call (date, time, length of call, who was on the call, and what was discussed). You may even want to email this summary to the people involved to help ensure that everyone is on the same page regarding the timeline for next steps.
While it is certainly important to advocate for your child and to tackle issues that come up regarding your child’s education, I believe that it is equally as important to provide positive feedback to the team working with your child (and perhaps to share this information with school administrators as well). People love to hear when things are going well, and it can provide them with a lot more momentum as they continue to work with your child. It can also help strengthen your relationship (p. 183) with your child’s school team, where you will likely be seen as a parent who will advocate when needed and also one who is fair and enthusiastic when good progress is being made.
What is response to intervention?
Response to intervention (RTI) is a process used to determine if your child is struggling. As part of this process, your child will be monitored to determine whether they require any intervention. RTI is often provided within a tier-based model with students on Tier III receiving the most individualized intervention. Schools are not required to use RTI to determine if your child qualifies for services through an IEP (see the next section: Do I need an IEP or 504 Plan?), and RTI cannot be used to delay or deny your child a psychoeducational evaluation. If your child has significant issues or a medical condition that is known to significantly affect development, RTI may not be the right level of service for your child. RTI may not be able to provide your child with the more intensive level of services they need or access to staff with more specialized training.
Do I need an IEP or 504 plan?
The primary difference between a 504 plan and an IEP is that an IEP also provides your child with specialized instruction and related services. This means that children with an IEP can receive pull-out academic or therapeutic services (i.e., speech-language, occupational, physical, or behavioral therapy). The process of obtaining an IEP is controlled by the Individuals with Disabilities Education Act (IDEA). An IEP is a more comprehensive plan (a typical IEP is often more than 15 pages, while a 504 plan is typically a page). An IEP includes goals for your child, which means that your child’s development will be closely followed for measurable growth. Your child can receive accommodations (changes to the learning environment such as sitting near the teacher or having the teacher check that assignments are recorded correctly in an agenda) with either an IEP or 504 plan. On the other hand, modifications (changes in what your child is expected to learn or know such as using different (p. 184) teaching methods or shortening the amount of homework or classwork they have) are generally only available when a student has an IEP.
School said my child does not qualify for services, so that means they are fine, right?
Not necessarily. Testing conducted by school systems generally focuses on assessing intellectual ability and academic achievement, with some information gathered about language development and social-emotional functioning. This type of testing is ideal for identifying learning or intellectual disabilities, but if your child presents with more subtle difficulties, these may be missed on this type of evaluation. Additionally, when children present with significant delays, complex medical issues, or challenging behaviors, testing done through the school system may not fully or accurately capture strengths and weaknesses. So, testing through the school system may be sufficient to identify (or rule out) some types of developmental issues, but an all-clear does not mean that there are no concerns at all. It may simply mean that more specialized testing needs to be done, particularly if your child is not making appropriate academic, behavioral, or social progress.
What happens if the results of my private evaluation are different from my school-based evaluation?
I have yet to see a school evaluation that identifies significant problems that were not identified during a private evaluation. I sometimes see, however, school evaluations that identify minimal to no concerns while a private evaluation identifies more substantial concerns. Private evaluations tend to be much broader in the skills that they assess, making them less likely to miss areas of concern.
If the results of a private evaluation and school evaluation differ, first, you need to understand why. Ask questions of both of the professionals who did the testing about why the results differ. Most often families will have a school evaluation first, and this will be followed by a private evaluation. In this case, the person doing the private evaluation should (p. 185) spend time explaining any discrepancies in test results to you and, if they do not, you need to directly ask them to explain these results to you.
Second, you need to be aware of your rights as a parent. You do not have to accept the results of the school’s evaluation. If you are in a school meeting, and they determine your child is not eligible for services, you also do not need to agree to this conclusion. If you do not agree with something during a school meeting, make your concerns known so that they can be documented in the meeting minutes. Also, be very careful about what paperwork you sign at the meeting. It is fine to sign something indicating that you attended the meeting, but if you do not agree with the decision made by the team, you do not want to sign something saying that you do agree with the decision.
When is an independent educational evaluation needed?
If you do not agree with the results of an evaluation conducted by the school system, you have the right to request an independent educational evaluation (IEE). An IEE is essentially your opportunity to get a second opinion from an independent party. In an IEE, you request that a private evaluator conduct an assessment of your child at the school system’s expense. The school system has the right to request a due process hearing if they believe that their evaluation was comprehensive; however, do not let this scare you off as this is quite rare.
If your request for an IEE is approved, you can select the provider; however, this person also needs to be approved by the school system. Typically, this approval is contingent on the provider’s qualifications being equal to, or better than, the qualifications of the person who conducted the school’s evaluation as well as an agreement regarding the timeline for and cost of the evaluation.
In my experience, an IEE is typically as comprehensive as a private evaluation; however, there are a couple of differences. First, the IEE process often moves more slowly, which means that you may end up waiting several months longer for the evaluation than if you paid yourself. Second, the client of an IEE is officially the school, not you the parent. (p. 186) Additionally, with an IEE, the school team has the right to participate in any conversation that you have with the provider.
When is an educational consultant/advocate needed?
Educational consultants and advocates (hereafter known as advocates) specialize in helping families navigate the process of applying for services within the school system. Some advocates also will help you identify a private school that will meet your child’s needs should you choose not to have your child in public school. Many advocates have backgrounds in special education (often as teachers) and know the school system and the IEP process well.
Some families choose to have an advocate involved right from the time of their first meeting with the school system. One of the primary advantages of an advocate is that you have someone on your team who knows what your child is entitled to and can push to get the necessary supports in place. This also takes some of the responsibility off of you because the advocate should have a strong working knowledge of what can reasonably be requested of the school and will make sure everything is documented appropriately.
Some families, especially when their child’s needs are fairly mild or when they are already familiar with the special education process, will choose not to involve an advocate, at least initially. Indeed, if the initial meetings go well, they may not need to use an advocate at all. On the other hand, if the initial meetings do not go as planned, then an advocate can be pulled in at that time.
When is a special education attorney needed?
A special education attorney is a lawyer with expertise in the educational rights of children with special needs. While many school systems work hard to provide the best resources for their students, sometimes a school does not provide the appropriate services for your child. When the school system is not providing your child with appropriate services or an evaluation has not been done 2-3 months after you submitted your written (p. 187) request, then you may want to consult with an attorney to determine next steps. I often encourage families to send one last email or letter to the school system letting them know that you will be contacting a special education attorney if they do not provide you with a plan in writing for when they will be taking steps to address your concerns. If you do this, give them a deadline for getting this information to you. I typically recommend 5 business days from when the message will be received.
If my child attends a private school, can they receive services through the public school?
Private schools are not obligated to provide any special education services to children. Sometimes, even though they are not obligated to do so, they may provide some supports for your child if these supports are not too difficult or time-consuming. Private schools that primarily work with children with developmental disorders will, of course, have a broad array of services available. If your child attends private school where insufficient supports are available, you may still be able to access some services through the public school system. Most commonly, I see families do this as a way to access speech-language, occupational, or physical therapy through the school system.
You will still need to go through the process to determine your child’s eligibility for services. If your child is eligible, the public school will develop an instructional school plan typically in consultation with you and your child’s teachers. The public school will then let you know what, if any, services they can provide. If they agree to provide your child with any services, they can only be provided at the public school (not at your child’s private school) and by public school staff.
What type of classroom will my preschooler be in?
For children under the age of 5, the school system will generally only provide services if your child is already showing delays or if they are at very significant risk of delays. As such, there is typically no general education preschool class per se. Instead, special needs preschool classes are designed to practice early academic skills as well as functional skills (p. 188) (communication, play, socialization, etc.) with children who may need extra time or support to help develop these skills.
What type of classroom will my 5- or 6-year-old be in?
School attendance is compulsory only once your child turns a certain age (ranging from 5 to 7 years depending on the state you live in). Once your child is old enough to be in kindergarten, you may now have the choice about whether to keep your child in a special needs kindergarten classroom or place them in a mainstream or inclusion classroom.
■ Mainstream. This term refers to placement in the general education classroom and is generally designed for children who typically require minimal to no educational supports. In this environment, a child is expected to be able to learn generally the same material as their peers, although some basic supports may be needed.
■ Inclusion. This term is used when your child requires special education supports, but these are provided within the mainstream classroom for some or all of the school day. In other words, they are “included” in the mainstream classroom, but they may not be expected to learn the same material as their classroom peers.
■ Special education/self-contained. This type of classroom placement refers to a separate classroom where children can be provided with more intensive services. Material is often taught at a slower pace, and the class size is smaller. Teachers have often undergone specialized training in how to work with and teach children with special needs. Children who have more significant developmental disorders or behavioral issues may not get much benefit from time in a mainstream classroom and may demonstrate better progress in this more specialized environment. Often, children in self-contained classrooms will have opportunities to interact with their peers in the mainstream class during lunch and specials (e.g., music, gym, etc.).
What if my child is struggling with a particular teacher?
I strongly recommend that you do all that you can to maintain good relationships with the teachers and therapists working with your child. (p. 189) They can be tremendous advocates for you when additional services are needed. When they go out of their way to do something for your child or to share information with you, thank them for taking the time and make sure they know that you appreciate what they are doing. At the same time, also respect that teachers are busy and probably do not want to receive daily or even weekly updates about what is going on with your child at home, nor do they generally have the time to write lengthy updates to you. Share information with them that you believe is critical to helping them work with your child and keep your requests to a minimum.
Sometimes, despite your best efforts, you may not be able to develop a good relationship with a teacher. At this point, you may need to evaluate whether any steps need to be taken. If your child has a good relationship with this teacher and is clearly making progress, you may decide to accept things as they are. If, however, your child is also struggling to connect with this teacher, then the teacher may not be a great fit for your child. You may then want to consider the possibility of having your child moved to a different class. This is not a decision to be made lightly, however, as it can cause substantial disruption to your child (i.e., needing to adjust to a new classroom routine, losing one peer group and having to connect with another). If you are thinking that a change in classroom may be needed, make a list of your concerns and back them up with examples whenever possible. Then, see if you can arrange a meeting with the person coordinating your child’s IEP to raise your concerns with them.
How do I know if my child should be in a self-contained classroom?
For children with more significant developmental disorders (such as moderate to severe intellectual disability), a self-contained classroom may be the best placement to help them make progress using specialized teaching techniques. These types of classrooms focus heavily on what are called “functional skills.” Essentially, these are the skills that your child needs to develop to improve how they function in the world. This includes skills focused on improving communication, social functioning, and daily living skills (such as dressing and toileting and, ultimately, skills (p. 190) such as meal preparation). Functional academic skills include being able to read and understand simple sentences, being able to write or type simple sentences and sign one’s name, and being able to use math skills to pay for purchases or count items. Typically developing children may pick up these skills with minimal teaching. Children with substantial issues with their development will, however, likely require explicit instruction in these areas and may need much more repetition to build these skills as well as support with generalizing these skills to everyday life.
If your child’s developmental issues are not that significant or they are only showing difficulties in one area, this type of classroom may not be an appropriate fit, at least while they are in elementary school. When children are placed in this type of classroom inappropriately (e.g., their developmental issues were not diagnosed appropriately initially), it can be very challenging to move from a self-contained classroom to a mainstream classroom as your child may not have the academic foundation they need to be successful in the mainstream environment. So, before you agree to have your child placed in a self-contained classroom, I strongly recommend that you obtain an outside evaluation (either privately or as an IEE) to confirm the appropriateness of this classroom placement.
Should I have my child repeat a grade?
In general, research suggests that repeating a grade is not typically helpful in supporting children who are struggling at school.10 This seems to be because, if your child did not grasp the material the first time it is taught, simply hearing the same concepts again is not typically that helpful at improving their understanding of this material. Additionally, repeating a year in first grade or later can cause social issues as well as difficulties with self-esteem as your child sees their peers move on without them. In my experience, however, repeating a grade may sometimes be worthwhile if your child will be exposed to more intensive intervention during their repeat year.
There are many ways to get your child the necessary interventions to help them make progress. A variety of services are available through (p. 191) early intervention programs, schools, and through private programs. When services are paid for by others (e.g., by the state or by your health insurance), you may need to advocate for what your child needs. For private pay services, make sure you do your homework. There are many unproven interventions that may offer limited to no benefit for your child, and some even have the potential to do harm. Carefully reviewing research studies and assembling a trusted and well-trained team (who you can consult with about interventions) can help ensure that you have the most effective intervention plan in place.
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