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Special Ed Info: Early Intervention and Preschool

NateAndTimsMom
2 Recommendations

I have noticed several posts with people asking about early intervention, preschool, special ed, etc. I am a special ed teacher and thought I would try to put out some info that may help people understand the system.

Under IDEA 2004 (Individuals with Disabilities Education Act) there are services for children ages birth to two (birth until the third birthday) and three to 21. The birth to two program is referred to as Early Intervention (states call it different things such as First Steps, Infant Toddler Program, etc) and is Part C of IDEA. Ages three to 21 are usually just called special education and is Part B of IDEA. IDEA is a federal mandate and each state carries it out interpreting the mandate and setting up programs themselves. Thus, each state is different.

All states and territories follow both Part B and Part C of IDEA. States have much more room to define the Early Intervention Program that the 3-21 program. There are federal guidelines for both programs and each state also makes its' own guidelines. Eligibility criteria is set by each individual state for both programs (thus, a child may be eligible in one state but not in a another). The Early Intervention Program is overseen by an agency chosen by each state. The 3-21 program is a part of each local school district. (Note: Some states extend Early Intervention to age five, but most stop at age three and the child moves on to the school district.)

Because I taught elementary special ed I do not have extensive knowledge of Early Intervention. I know it varies greatly from one state to another. Some states allow children who are "at risk" for disabilities to receive services and some states do not. There is criteria in each state for a child to qualify for services. I would suggest locating your state's Early Intervention Manual on the internet if you want to know eligibility requirements, services, etc. Keep in mind that Early Intervention, for the most part, only coordinates services. (For me I see little benefit. We have Medicaid which pays for the boys' speech and OT. There is a "teacher" who comes to our home once a week to "provide extra stimulation," but as a special ed teacher, that teacher admits I know more than she does. She gives ideas on what to work on with the boys and kind of acts as a sounding board for me, but it is not a necessary service for us. I currently receive mileage reimbursement for taking my boys to therapy which is a "related service" no one told me about and I found by looking in the state manual. Not all states do this.) The person with whom you will meet with Early Intervention is NOT a special ed teacher. It is a service coordinator. I do not know what training they have, but I know knowledge is quite limited. Their job is to set up testing (the person who did my boys' testing was not qualified to do it), set up therapy, and set up other services. Early Intervention is a "payer of last resort" for services. What this means is that if there is another public or private source to pay for services, that source must pay. If there is not, then Early Intervention pays. My understanding is that a family does not pay anything out of pocket. If a person is told they have to pay insurance co-pays, I would certainly question that (possibly seeking advice from an attorney). Early Intervention services end the day a child turns three (in most states). Before this a transition meeting is held with Early Intervention, the school district, and the parents.

According to IDEA Part B (3-21) every child is entitled to FAPE (Free Appropriate Public Education). This is where a child receives services once they turn three until they graduate from high school. A disability or medical diagnosis does not, by itself, mean that a child is eligible under IDEA. To be eligible for services a child must have a disability that meets the state criteria. This means a child's disability 1. meets the state disability criteria, 2. adversely affects education performance, and 3. results in the need for special education (specially designed instruction). A child must meet all three of those criteria to be eligible. (Side note: if a child has a medical diagnosis or disability and is not eligible for special ed, the student may very well be eligible for a 504 Plan under the Rehabilitation Act of 1973; this would not give a child services, but would provide accommodations at school and in the classroom.) Some children may have qualified for Early Intervention but not qualify for services once the child turns three. The eligibility criteria is often different. Services are also different with the school district. For example, right now my boys go to a rehab facility for their therapy. With the school district they would go to the school. At age three a child may also qualify for preschool. This may be all day every day, two days a week half day, or whatever set-up is determined to meet your child's needs. A child may be eligible for preschool, but no OT, speech, or PT. On the other hand, a child may be eligible for speech, but not preschool. It depends on the child's eligibility category and state guidelines. Things such as OT, speech, PT, bussing, etc are called related services. Speech can be a service all alone if a child has a speech-language delay, but a child cannot receive just OT, just PT, just bussing, etc. A child must have a core service such as preschool (or academic services once in kindergarten) or speech. At times services are given in the home, but this is a rare exception. There are special considerations for children who are home schooled, go to private schools, and go to charter schools. Services continue as long as the child is eligible (eligibility is determined at least every three years) and until the child turns 21 or graduates from high school (which ever comes first).

One thing that really bothers me is that I hear people say, "I was told my son only qualifies for speech two days a week, not three." Or, "my daughter doesn't qualify for assistance in the classroom." The only eligibility criteria is to actually be eligible for services period. To get speech, OT, and PT as related services there are guidelines, but also discretion. The amount of services a child receives is not determined by any qualification. The services a child receives are determined by the child's individual needs. Don't let anyone tell you your child isn't low enough to get another day of speech or is too low to work in the classroom with assistance or anything. What the team needs to decide is what is best for that individual child regardless of what every other child in the nation receives. If you believe your child would benefit from another day of OT or whatever, make that known. Tell why you believe that. If the school tells you no, make them tell you why the child would not benefit (not why the child doesn't "qualify," but why the child would not benefit) from the service. A lot of decisions come down to money. The teacher may know a child would benefit from a one-on-one assistant, but there is no money. Thus, the teacher tells you that the child doesn't need or doesn't qualify for that assistance. A child may benefit from more PT, but the PT may not have an extra minute due to so many students needing services and the district not having money to hire another PT. Parents need to keep in mind that often the teacher's or therapist's hands are tied even if they agree with your request for something (they would likely only disagree with you in this case because they can't tell it all comes down to money).

Another thing that bothers me is that way too many children do not receive services in their LRE (least restrictive environment). This means services are received in the most natural setting possible for the child to learn. For Early Intervention this is the home. If for some reason this is not possible (the set-up of the home doesn't allow it), then the next place is the community. Gradually you move to more restricted settings such as a setting with kids who do not have disabilities, then a place where all the kids have disabilities, etc. A rehab facility is very often not the LRE. Sometimes it is necessary, though, due to the need for equipment for OT or PT. At school the first choice for the LRE is the regular ed classroom with non-disabled peers. After this you move to a little bit of pull-out. Then you move to more and more pull-out and finally exclusion (or self-contained). Many school districts (far too many) still have most kids in special ed in environments that are not remotely their LRE. For example, let's say that there is a child who has severe disabilities, is confined to a wheel chair, cannot talk, etc. Can this child receive services in the regular classroom? Probably so! I had a student like this and he was in the regular classroom 90% of the day. He only left for PT because he needed more space. In the classroom his assistant worked on all his skills. One of his goals was to show that he was listening when a story was read to him. So, we had students read to him every day (excellent for both students). Many students with very mild learning disabilities are often thrown into "resource." In actuality the LRE would first be in the regular class with the regular work adapted. Then you would have the regular class with different work. (An assistant can be there. A small group or one-on-one instruction can occur in the back of the room.) Gradually you more out of the class more and more. We had many, many students who learned in the classroom. They may not have done any of the work the rest of the class did, but they had small groups in the back of the room for instruction and then sat at their desk for independent work. Another part of the LRE is that a child's math instruction occurs at math time and reading at reading time. This would mean that the child who is getting different instruction in the classroom would do their reading when the class is doing reading. The same thing for a child who is pulled out. A child who is pulled out does not have to be out for the entire instructional period. Let's say it's math time and a child leaves the room for instruction that takes 30 minutes and the class does math for 50 minutes. The student can return to the class and work on math assignments related to what that child is learning. Some students cannot receive all or any services in a classroom. Perhaps a student, regardless of what is done, can't focus in the classroom. Then pull-out would be necessary. I once worked with a child with severe autism who could not handle being in the regular classroom. He was there very little of the day, but we did work with him to increase the time he was in the classroom. Many times children are not in the LRE due to money issues. It costs more to provide assistants that may be needed in the classroom. However, it is very often better for the student. Keep in mind that your child's LRE has nothing to do with the other kids. It is all about what is best for YOUR child! Some people may say a small group can't occur in the back of the class because it will distract the other students. That is not a consideration when determining LRE (and that is a very poor excuse as students learn to work with it and things can be done to make it not distracting to others).

Keep in mind, know your rights and fight for what your child needs. You may be asking for something that really is not provided under IDEA, you may be asking for something everyone knows your child needs but there is no money, you may be fighting for something which the school truly feels you child doesn't need. That all has to be worked out to determine what the child truly needs!

I know this is long, but I hope it has helped some understand the system a little better.

For more info visit: http://idea.ed.gov/

Explore topics in this discussion:

Asthma Cancer Surgery Occupational therapy Physical therapy Albuterol Autism Child development Epilepsy Cerebral palsy Stress

32 replies

Henrysmom

Thanks for posting this information! It's nice to hear it from someone inside the system! We have been asked to pay copays... looks like there's some sort of sliding scale based on income for our state. We are also trying to get feeding therapy twice/wk versus once/wk. We've heard our state's EI doesn't have much money and its hurting lots of people. We've tried to apply for the CAP/C program since Henry has a g-tube so that Medicaid will cover his care. We were denied the first time, but turns out we have a bad coordinator who didn't provide all the info (like the fact that he's diagnosed FTT!). We're trying again. Sometimes I'm not sure the point of using EI... seems more of a hassle to me than if I just went out and got these services on my own.

NateAndTimsMom

Henrysmom,
I would agree that EI seems like just a hassle--to some of us. To some that is the only way their kids will get services. My boys' pediatrician had not referred them with the first indication of a delay (not rolling over) because he said, "All they'll tell you is to put them on their tummies more." We don't see him anymore due to, among other things, his incorrect views on development, but he was right on this. Thus, I was not happy after the boys' speech therapists made the referrals for EI for the boys and then found out it was just going to be a hassle. I was quite upset at the poor communication between the service coordinator and service providers. That is, there is no communication! I talked to the head person for the region and got nowhere. I am also upset that my boys are not getting their services in their least restrictive enviornment as they get them at a rehab facility a half hour away. I put up a stink about this but was told that there are waiting lists and we'd be put on one (I've asked twice to be put on and I don't think we have). Because I love the boys' therapists (especially their SLP), I want them to stay where they are regardless of it not being at home. At this age I see consistency as more important than getting services at home or a rehab center. Only in my research did I find that EI here will pay for transportation. I was told by one person "they don't do that anymore" and that if I got anything it would be bus passes. Are you telling me you want me to walk several miles (a five minute drive) to a bus stop with twins and make several bus changes? That really adds to the negative impact of not having my boys in their LRE! But, I spoke to the right person and I get mileage reimbursement. However, when the boys have their annual review in August I was told we won't get mileage anymore. Apparently they will no longer give it to families on Medicaid because Medicaid will pay for transportation. (Can you see my lugging around two car seats, two-two year olds, diaper bag, lunches, etc and then having to wait for hours after therapy to get picked up--if we make it there on time at all? Needless to say, if my boys don't both have SSI by then, I will be putting up a big stink! Unable to work I don't have the money for gas and I do have e-mail documentation of asking to be put on waiting lists for therapy at home in case I needed to switch when they won't pay mileage anymore.) Yes, it all comes down to money! It is sad but true. It was always hard for me to have to tell parents things that weren't completely honest (a distortion of the truth) because there was no money to get their child what was needed. Our school only had so many instructional assistants and the district only had so much money for one-on-ones. So, if you have 20 kids who need one-on-ones but only 15 assistants, you have to go with "most need most service." Then you may put two kids together with one assistant. You may end up moving several kids to a special ed classroom with one assistant. Or one child may have to flounder. Thankfully we always got pretty creative and didn't have to do anything that I wouldn't want done with my own kids (all kids remained in the right environment with the help they needed), but that isn't saying money didn't keep us back from the ideal.

I don't know what CAP/C is, but if it is anything like applying for SSI, good luck! Both my boys clearly qualified and one went through no problem. Timothy's was finally denied after six months! I requested a copy of all his records which includes how they made their decision. They didn't even look at the medical! His asthma alone qualifies him, but all they looked at was the developmental. They even decided to throw out the test scores from the testing they sent him to because they felt the scores too low to be accurate! I also found they only had a fraction of the records they needed. They sent the records request to Early Intervention at the wrong address. They lost records I sent including several asthma attacks and a hospitalization he had while all of this was pending. I just mailed his appeal last Friday. I sent about 1,200 pages of medical records, new testing, questionnaires I made and hade people fill out about Timothy's development, a medical/medication log starting when Timothy got home from the NICU, a calendar of all dr and therapy appointments, etc. Too much of the time it is an absolute must for a person to do this work themselves! To others it is a job. Others also don't know enough to know what info may be missing. So I spent over 200 hours researching SSI and putting together appeals for my boys (my other son't appeal is regarding the amount of benefits as they are counting a loan to pay my housing expenses as income when federal law is very clear that it is not).

Through all of this what I have learned is that without us our kids have nothing. It's hard to keep it all up at times, but our kids need us so much!

katek

In our state, the insurance companies won't pay for the basic therapies unless the early intervention program is unable to do so. The expectation is the EIP will cover OT, PT, and ST until the child is 3 years old.

For whatever reason, the therapists are required to submit billing forms to the insurance company, the insurance company denies them, and then the EIP will pay the therapists. It is a very bureaucratic, screwed up system, that involves lots of wasted time spent on pointless administration.

At one point, our son did receive PT from a therapist that we found b/c the EIP couldn't find a PT available in our area. After getting a referral from the neonatalogist at the developmental follow-up clinic, we received several PT sessions via the insurance...until the EIP found a PT. Unfortunately, the PT through our insurance didn't bill the insurance company until well over a year after services were provided. So now the insurance company is saying that we are responsible b/c the bill is "outside their billing window." I'm trying to sort it out with the PT's services dept but they won't return my calls. Five therapy sessions cost over $900! I'm really irked b/c this wouldn't have been an issue if the PT had done the paper work on time. We are going to fight it of course.

When our son came home, he was on oxygen. He was a little smaller than he should have been (having had many rounds of feeding problems in the NICU). Long story short, the woman from the Blake Foundation felt he was a hard luck case and assigned him to DDD rather than the state's general EIP program. She said that DDD had more money to pay for the services that he'd probably need. DDD contracts their services through various private agencies.

Our son's first developmental coordinator was excellent. Although she was a social worker and not a therapist per se, she certainly took an avid interesting in learning about the therapies. She was hands on with our son. It was a learning experience for her; she hadn't worked with micropreemies before, but she diligently helped navigate the system for us and even got two sessions of massage therapy covered for us, which really had some amazing physical benefits for our son (e.g., helped get him on a regular sleeping schedule, stimulated appetite, etc.). Unfortunately, that coordinator came down with cancer in her mouth. She had radiation treatment, which meant she couldn't be around kids. Our second developmental coordinator is very nice, but doesn't take an active interest in attending therapy sessions, rarely comes to the house, doesn't always keep appointments, and is generally MIA. She sent us a hard copy letter claiming that she tried calling our phone several times but we didn't answer. Very odd b/c (a) we have an answering machine like 95% of America, and (b) my husband works from home and I frequently work from home, so we are surprised that we haven't heard the phone ringer for her calls. Sigh. I guess that's a long way of saying that some developmental coordinators can be very, very good...others are not so great.

All of our son's PT has been done in our home. The OT sessions were in our home until our son was down to just evaluations, which are done at their clinic. Massage therapy and a session with a pediatric nutritionist was done in our home. Very helpful during RSV season. We appreciated the in-home services.

Avagrandma

I am also a special education teacher, and in NY we are licensed for K-12. I have worked, before Early Intervention, in a pre-school for children with special needs. All of the information is a lot to "digest" and so that is what the "service coordinator" is for, to explain what they think you need and what is available to you. First of all the child has to be "tested". In NY a licensed special education teacher does the simple "testing". In our case, Ava, did not have enough "words" (which I already knew) and she was referred for additional testing by a licensed speech and language pre-K person. After testing, we in NY have a choice of agencies and after picking one there is a "meeting" to discuss what they believe would help the child. They ask for your insurance but, the services are free. Ava, also had her hearing tested. Ava's receptive (what she understands) seems to be fine. She can follow directions but, her expressive (speaking her thoughts or wishes) language is very poor, she has fewer that 10 words. Also, she has a lot of tantrums because she cannot express what she wants. So, we also have to work on her behavior. Ava teacher is helpful, gentle and works well with her. Ava is not as receptive (or perhaps we are more lenient) to those in the household.

IanMommy

I know I learned a lot my son only has speech one day a week and they want him to start preschool in nov. We get tested in june to see if he qualifies. I have always said I think he needs speech more then one day a week. He gets ot once a month and we where told he doesn't meet the guidelines for pt. He's very shy and it took a long time for him to get comfy with his speech person

Henrysmom

katek,
What is DDD?

katek

DDD = Division of Developmental Disabilities

I believe that a good chunk of DDD's money comes from the federal government.

In our state, people can be registered with DDD if...
* The child is at risk of having a developmental disability (up to age six); here we are talking about projected risks beyond short-term delays
* For people over the age of six years, has a diagnosis of
- epilepsy,
- cerebral palsy,
- cognitive disability, or
- autism
* The disability occurred prior to the age of 18 and
* Has substantial functional limitations in three of the seven major life areas.

Incidentally, we completed foster care training in March. When one gets certified as a foster parent, one chooses to be licenced in one of two areas: ACYF (Administration on Children, Youth and Families) or DDH (Developmental Disability Home). ACYF is considered "normal" foster care. If DDH, the families work closely with DDD to get the children services. Typically, medically fragile preemies and drug addicted babies start off classified as ACYF b/c it is presumed that they could end up w/o long-term problems. If problems like CP, autism, or permanent cognitive delays appear, then they are recategorized into the DDH category. My point is that being a preemie doesn't guarantee being classified for DDD services.

If it appears that a child is going to have long-term issues, it would be worth it to check out DDD in their state. I'd actually probably start off with the federal website to see what the rights the children have via DDD under the law. Then, contact the state's DDD office or look at their website. You know how local offices are. Sometimes they try to weasel out of services and not inform parents of what their children have rights to, so knowing what children are guarantee under the law is a good place to start.

lijn

In addition to being the mother of a tiny former micro preemie, I have worked as an Infant Development Specialist (IDS), AKA Early Interventionist (EI), for the past 7 years in the San Francisco Bay Area. I also set up an early intervention program.

Our clients were referred to us by local Regional Centers. Regional Centers, at least in our area, coordinate services for at risk children ages 0-3 and children and adults with developmental delays 0-100. The services provided can be quite elaborate here until the child turns 3. After that the local public schools are legally responsible for any services needed. However, Regional Centers can still help coordinating the services and communicating with the school districts.

Based on their specific needs many of the children in our program received early intervention (which could be explained as early childhood special education here), speech and language services, occupational therapy and physical therapy. The regional centers pay for the services we provide if a child is found eligible. Most service providers go to the clients' homes. Twice a year an elaborate assessment is performed by all the providers who are put in place by the Regional Center. The results are discussed in an IFSP (Individual Family Service Plan) meeting. The IDS' in this area are actually trained to perform these assessments. Most Infant Development Specialists (IDS) (or Early Interventionists) have Masters Degrees in early childhood special education, early intervention, clinical child development, child life, child development or social work. When an IDS has a BA degree in the two programs I have worked at, I (as the manager) or other staff with an MA or MS would provide intensive training and supervision of the assessment, treatment plan and actual weekly services.

Although the IDS can be involved in coordinating services, this is actually the job of the case manager or service coordinator at the Regional Centers.

I would suggest people contact their local regional center, if one exists, to see if any services like those here exist in their area.

My baby is 2.5 months adjusted and is developing just fine for his adjusted age. Because he is at risk for developmental delays, he does qualify for IDS/EI services once a week, paid for by the Regional Center.

Feel free to email me if you live in the San Francisco Bay Area and have specific questions about who to contact here.

NateAndTimsMom

The early intervention services described by lijn are services in all states. It is IDEA Part C. The IFSP (Individual Family Service Plan) is a part of IDEA Part C. The IFSP is a document that has goals and services for the individual child. All states havespeech/language therapy, occupational therapy, and physical therapy as potential components of the IFSP. There is most likely also a compnent where someone works with the child on general skills (Early Interventionist or whatever your state calls them). You may also find other programs such as preschool depending on the area where you live. Evaluations are done at least yearly but some states do them more often than that. All states have these services provided by an agency chosen by the governor--and are overseen regionally. Depending on the state's guidelines, the people who provide various services may have a great deal of education or very little. Even those with lots of education may not have a degree in anything that has to do with the development of children 0-3. The service coordinator from the state coordinates the services chosen at the IFSP meeting. This person may or may not have a degree. So everyone has some sort of regional agency. If you need help locating it you can ALWAYS call the special ed department at your local school district and ask how to contact them. Referrals for an evaluation can be made by anyone: parent, doctor, daycare, neighbor, speech therapist, etc.

lijn

Unfortunately NateandTimsMom is right, not everybody with higher education working as an IDS/EI is specialized in the age group we talk about here. In fact, of the 14 people I hired for an IDS position, only three were actually trained by education to be an IDS. Everybody else had the work experience, or something related, but was not trained through education to work with the little ones.

Although much improvement is needed in this area, coming from the Netherlands I am pretty impressed with Early Intervention even existing the way it does.

I am very curious how I will experience our Early Intervention services, coming from that background. I have not met our IDS yet, but I know she has a very good name in the EI community here!

elizagracesmom

My experience with EI has been nothing but positive. Prior to discharge from the NICU we were assigned to YAI/ Lifestart as our EI service agency. Eliza's service coordinator has about 35 years experience with YAI and has a dual masters in Special Ed and Early Childhood Development. She calls at least once a month (more when Eliza was younger) and she has been a great advocate for Eliza.

Our annual IFSP meetings and semi-annual evaluations have all been meaningful meetings and assessments of Eliza's current needs. Eliza is globally delayed and receives 20 hours of services in speech, OT, PT and feeding and has a special instructor.

Recently Eliza transitioned to CPSE, since she turned 3 in March and in anticipation of attending preschool in the fall. Our new CPSE service coordinator is equally skilled and was of great help in preparing for Eliza's IEP.

I think the experiencse with EI and CPSE services vary greatly state by state and then within the locality as well.

Anne, mom to Eliza Grace 3/15/2006 26w4d 575gr
www.eliza-grace-micro-preemie.blogspot.com

BarbaraK2U

Thank you, NateandTimsMom for a truly well-informed and accurate post. My daughter is 6, and we've been through the entire gamut of what you've described. She started in EI, transitioned into coverage under IDEA at age 3, and continues to work within the framework of IDEA as she attends a special charter school for autism. Her current school is in danger of closing at the end of the school year and we've been back in contact with our school district about a possible return to regular public school. In an ideal world she'd be welcomed back with open arms, but in reality we're experiencing pushback on her placement and services. The district is claiming that her IEP has to be "redone" because it's a "charter school IEP", even though the charter school is part of the public school system. They'll attempt to rip apart her OT and speech entitlements, and they're insisting that she initially be placed into an ASD classroom rather than a mainstream classroom because she's currently got an IEP that says she's in a self-contained classroom. Ironic, no? They want to follow one part of her IEP but not the other.

One thing you didn't mention in your overview is that IEP's are strictly public school documents: a private school is not bound by IDEA, and is not required to follow an IEP if one is currently in place. If a student enrolls in a private school and brings their IEP with them (i.e., if the private school agrees to work on the goals in the IEP), the school is not required to ever update the IEP. This is true even if the private school specializes in working with kids with learning difficulties (an option we're looking at for my daughter).

NateAndTimsMom

BarbaraK2U is correct that there are differences with private schools. I have not taught for two years and at that time we were just going through the changes with IDEA being renewed. I know there were changes regarding private schools in that. I do know that private schools are not boung by the IEP at all and do not have to follow it. Where I taught (and I don't know if this was a state interpretation of IDEA or if it is national) students could be dually enrolled in a private school and the public school or home school and public school. I don't recall if they then had an IEP (Individualiz Education Plan) or and IFSP (Individual Family Service Plan). I do know that students in private schools can receive services from the public school when that is set up. I know one if the changes that happened right around when I last taught was that the school district was going to either have to provide transportation for kids in private school (and home school?) to come to a public school to receive services or the school district would have to send someone to the private school. I know our district was going to begin sending an SLP to one private school twice a week to provide services. So there are options for kids in private schools to get help from the public schools, but the private schools are not bound to provide services. I do not know much about charter schools, but since they are essentially special public schools, I believe they would be bound just like any other public school.

IEPs can be very hard when parents and the school district disagree on services. I had only a few parents who gave any input on an IEP. We had one student whose parents had previously sued the school district and so any disagreements with them were discussed with a district representative present. Thankfully the only trouble I had with them was with an instructional assistant who was eventually fired. I do know that at one eligibility meeting I, as the special ed teacher, disagreed with all other team members. The student had low enough scores to be eligible with a learning disability, but she had no need for specially designed instruction, had not been receiving any, and was passing. I had to write a minority opinion, but the director later intervened and agreed with me. Normally I believe differences in opinion are decided by the principal. Where does this put parents? It's not good. I get quite upset when a school wants a child in a more restrictive environment than is best for the child (often for financial reasons). That is also why services may be less than ideal. I never saw a student get speech more than three times a week (typical was two days for 30-40 minutes each session) and OT and PT never more than twice a week (typical one day a week for OT for half an hour). This does not mean that the goals cannot be carried out by others. I had one student who had an awesome instructional assistant (he had the child kindergarten to sixth grade) and several times a day did his PT services. Due to a national shortage of SLPs some districts have to have an SLP supervise and assistants carry out all services. Thinking about all of this, the best I can think is to document, document, document. Try to communicate with the district/school in writing. That may be simply writing a letter or meeting and then writing a letter saying, "At our meeting we discussed. . ." Take notes at all meetings. If you want more (or different or even fewer) services than the school offers or is willing to give, put it in writing: tell what services you want, tell why you want these, and provide evidence that the therapy will help (if you can). Follow-up quickly. You can threaten a lawyer, but some people may not care. I am sure a letter on lawyer letter head would help, though. Also, the socioeconomic status of your district/school may give you an idea of the amount of services your school is able to provide. In low income schools many students are typically served (lots of ADHD and learning disabilities, from my experience) and the available services are spread thin. In more affluent areas there are fewer kids in special ed and so services can be given out a little more liberally.

One problem I have observed is that some families have a very difficult time accepting that their child is at their maximum potential for the time. I had one student whose parents insisted just had a little language disorder, but was quite smart. They had refused an IQ test since kindergarten and had demanded a one on one for years. Finally when I got this guy in 5th grade I got to know his mom well and she was willing to have an IQ test done. It confirmed what we knew: not a 100 IQ, but around 60. The parents had a hard time, but accepted it. A one on one did not benefit their son and soon he was working more in groups. Another example is when you have a child with a 65 IQ and their scores in areas such as speech/language are around 70. That tells you that the child is probably at their maximum potential and more services will not lead to improvements. Many students with cognitive impairments cease to receive speech/language services in 6th-8th grade because they are at highest they will ever be. Therapy will not lead to improvements. However, there is a difference between this and a second grader who is still learning with therapy twice a week, won't learn any quicker with therapy five times a week, and would cease to learn without therapy. Then you know twice a week therapy is needed.

One thing that is hard (and I didn't like it as a teacher, but it's financial) is that courts have ruled that even if a child may benefit from more services, they may not always be eligible. The case I recall was a girl who was deaf. She had an interpreter in class in the morning, but not the afternoon. The parents wanted an interpreter all day. The school district said no. Because the girl had all passing grades with an interpreter only in the morning, the courts ruled that this was appropriate. Could the girl have done even better with an interpreter all day? Probably so, but passing grades on grade level work showed she didn't have a need for additional services to have an appropriate education.

I am worried about when my boys enter school. How much do I push? I pushed some with EI but not all that I could. I do know that, assuming my boys have IEPs in school, I will not allow them to be excluded from their peers (unless truly necessary to meet their needs) as I see all over the place here. I will not raise kids who hate school because they are shoved in a seperate room and excluded from their peers. I also have to figure out what to do when my boys have their annual review in August. Right now I get mileage for taking the boys to therapy. Apparently Tennessee is no longer giving this to kids on Medicaid since Medicaid offers transportation. If Timothy is not getting SSI by then, I won't have money for gas. Taking hours and hours each time we have to go to therapy just to get there an home (waiting hours after therapy to be picked up) is far from their Least Restrictive Environment--especially since I asked to be put on a waiting list for services at home. Already my boys won't go to preschool (one that serves kids 18-36 months) even if spots open and I don't feel it too medically risky because I can't afford the gas (EI won't pay for this mileage since a teacher comes to our home--it's not worth fighting).

We all just want to have out kids' needs met!

BarbaraK2U

It is difficult, isn't it? Knowing how much and when to push is a delicate balancing act. My daughter is only in kindergarten: we have many years ahead of us of dealing with our school district, assuming we stay put. That said, I've already been told before any IEP meetings have been held that they don't have any OT's assigned to the school(s) she might attend. They just have one that "stops in once in a while, maybe once a week or so" and they give strategies and tips to the teachers so that the teacher can provide the OT. HUNH??? My daughter's current IEP calls for her to receive one hour per week of OT (one on one). They have no intention of complying with this. It's not that she doesn't need it, they just don't intend to give it to her. Same with speech: her IEP states that she receives 2 hours per week (one on one). My daughter has emerging language skills, but she speaks poorly (indistinct, too soft, hypernasal) and requires a lot of prompting to use her words. She's made terrific strides (from non-verbal to somewhat communicative) but she still has a great need for therapy. How does a parent overcome the "we can't or won't do that" argument?? My girl can b-a-r-e-l-y hold a pencil/crayon to write her name. Her grip is terrible!!! Most of her letters are undecipherable. She's receiving OT and has made only marginal improvement so far. She needs to strengthen in so many areas and needs an expert to work with her. How can a teacher, already overloaded with other teaching tasks, possibly have the time to work with her?? Yet this is what our district says they do to fulfill OT needs. I am considering hiring an attorney to be our advocate if we go back into the public school system in order to make sure her services aren't eviscerated. I don't know of any other way to overcome the obstacles the district intends to put in our way. We do live in a very affluent suburb, but the county as a whole covers a wide range of income levels and the money all comes from the same pool.

IQ is a difficult number to pin down for a child on the spectrum with communication issues. My daughter has excellent receptive language skills. She is hyperlexic, having taught herself to read before the age of 5. But her teachers say they don't think she comprehends what she reads. Why? Because she can't/won't verbalize responses to their questions. It's not that she gets the answers wrong, it's that she (mostly) just doesn't answer. I think she DOES comprehend what she's reading, but the *questions* are difficult for her to process/comprehend. She also doesn't want to work that hard, so she'll refuse to answer. LOL I have a lazy 6 yr. old!! OK...unmotivated. ;-) The district's psychologist tried to determine an IQ for her and came up with "50" because she simply wouldn't answer the questions. Yet this is a kid who can identify a trapezoid, rhombus, etc. and read compound words. I obviously disagree with their IQ assessment.

I'm sorry about your gas situation. I know the mileage is tax deductible. Any chance that this could help make up some of the difference and give you enough in a refund to help pay for gas?

NateAndTimsMom

It sounds like your school district may need a good kick in the butt. As a special ed teacher I hate to say that, but I think they know you have rights. Your daughter is entitled to services from an OT! An hour a week is not exceptional. The district I worked in was small. We only had one OT and one PT. They went around to all the schools where kids needed services. Our SLPs were at more than one school. They are just going to have to do it! With your daughter's language skills I would think at least three 30-40 minute sessions of speech/language would be needed--by an SLP. It's one thing to have assistants (who are specifically trained!) provide some extra services and integrate goals into the rest of the day, but they should never provide all the services. It happens, but it shouldn't. An SLP and OT and PT all go to school for many years. They are the ones who can spot the little things others may miss. They have to see the child to know how to adjust goals and instruction. As soon as you find out the situation with the charter school, I would find an attorney if your daughter is going to have to go back to the public school system. If you haven't tried it yet, you could call, make an appointment with, or walk in to see the special ed director. That makes an impression--if the director finds you credible.

IQs can be very hard to assess. Someone like your daughter could possibly be one who would just be untestable--because the score would be so inaccurate. In such a case the school psychologist in our district would have either just spent some time with the child and written up a narrative with a possible IQ range or would have done the testing and in the report note all the reasons the scores aren't accurate. I had one student whose mother told us she had "high functioning autism." We believed her. We needed to do an IQ test so that she could have assessments other than what the other kids took each year. We just thought her verbal skills were low and that her performance IQ would be fine. Not the case! She just plain had a cognitive impairment with language skills a little below her IQ. I went rounds and rounds with the psychologist on this. She said that before the test even began, as they were just chatting and playing, she knew the score would not be what we had expected. We discussed everything and it made sense. This also put everything with this little girl into place whereas before it really hadn't looked like this "high functioning" girl really had enough to get an autism diagnosis. But, I have had other kids with language disorders who just aren't testable!

My point in comparing IQs and language scores in perspective of services was meant as an example and that would only be an easy way of determining things in a very typical kid. Still, though, kids who have no ability to improve don't need tons of extra services even though they are very low. My very lowest student with CP, cognitive impairment, language impairment, etc who will never talk or walk stopped getting OT and PT after about first grade. There was no chance for any improvement.

Kids with autism can be very hard to plan for. Your daughter may be comprehending all she reads or it may be rote memorization. I have seen kids with autism who can read lots of words but who have no spontaneous speech. They can identify random objects but can't follow a one step direction. If your daughter has good receptive language skills, she very well could be comprehending what she reads. One easy way to just look at some simple things would be to write the word dog. Have her read it. Then have several pictures or a page in a book and ask her to point to "what this says." That is an easy was to show if there is any comprehension. Try this with a very simple word and then go on to more complex. If she is able to do this, tell the school! Kids with autism can hold a lot of information which is meaningless to them. This is kind of stereotypical. If a teacher isn't willing to look beyond what is typical, they won't see what may really be there.

Have you ever heard of PECS? Picture Exchange Communication System. This may be an excellent way for your daughter to communicate. I do not use it with kids who have a good chance of being able to communicate verbally--unless it is a transitional tool. Take a look at www.pecs.com. We had a little guy with severe autism who was completely non-verbal, but was able to communicate and follow a routine with this. It works wonders with lots of kids with autism.

I can't deduct any mileage for taxes. I had to quit working because the boys were sick and missed more days at daycare than they were there. Daycare would have cost more than I made. A nanny charges more than I made. The boys were 31 weekers, did great in the NICU, and no problems were anticipated. I was shocked when they were so sick, in the hospital for respirtory issues, getting ear tubes, using nebulizers at home, etc. They both meet the criteria for SSI for asthma (as well as developmentally). So I'm home with the boys and unemployed. If I was not home with them they would not get any therapy (their therapists and I feel they are as high as they are only because of their home) and I would not be able to buy their medication. So, it is a blessing to be able to be home with them and to have Medicaid meet their medical needs (including Synagis for the third and final year). I am a single mom. Right now we have about $450 of Nathaniel's SSI a month and my mom pays the mortgage and utilities as a loan to me. After bills I usually have about $50 a month. I use cloth diapers and get clothes from whoever will give them to us! I'm appealing Timothy's SSI denial (I sent in over 1,200 pages of evidence to show he qualifies) and am also appealing Nathaniel's amount of benefits (they incorrectly counted my mom's loans to me as income--the federal regulations and previous court cases show it is not income). So, I pay no taxes. I am hoping to go back to school to get a paralegal certificate. Hopefully that will allow me to work from home, but first I have to figure out how to pay for the schooling. I'm actually very interested in doing this paralegal thing (my lawyer friend who helped me with the SSI stuff encouraged me to do this, since law school is out of the question, and I have enjoyed doing research) either as a bridge to when I can go back to work or as a career change. I do look forward to making money and being able to provide for my family again instead of having to rely on others!

Never in a million years did I imagine this would be my life! But, my boys are amazing and I wouldn't trade them for anything!

BarbaraK2U

Yes, Emma uses PECS at school. It did help to spark more spontaneous speech. I think we're regarding it as a transitional tool because Emma can/does speak without it (mostly echolalia). Her expressive language skills have really exploded this year. I credit a wonderful teacher for that!! So she carries her PECS book at school and she does sometimes use the cards inside, but she's more than capable of requesting without it, so I don't think she uses it all the time.

On the comprehension front, she'll answer simple questions about what she's read - when she feels like it - but with more complicated relationships/questions she fails to answer. Emma is stubborn, so getting her to work hard to answer questions is a challenge. So who really knows what she comprehends and what she doesn't? But my little stinker is SMART, she's using more and more appropriate language spontaneously, and the biggest problem she'll have is finding the motivation to learn new things when it requires effort. Her social skills are so-so, but even that is improving. Luckily for her, she's getting great services at an early age (she's received therapy since she was 6 months old), so the window hasn't; closed on her. She's still learning and growing and improving. I'd hate for anyone to think this is the best she can be and deny her continued high levels of therapy. We'll see what happens. Luckily, my state has approved the new insurance law that requires private insurance to cover services for kids on the spectrum, so we can step things up privately as well.

Have you checked with your local March of Dimes to see if they can provide you any assistance? Maybe you could find some volunteers that might be willing to help drive you and the kids back and forth to therapy and/or preschool (if you're interested in it). Sometimes it's easier for people to donate time rather than money, and driving is an easy thing to do. You might be able to reduce your gas expense this way.

I'm sorry things are such a struggle. It's obvious you're very skilled in your field. Kids like mine need teachers like you! :-)

NateAndTimsMom

Wow! At her age Emma is doing awesome! You as a mom have great instincts about her. Keep listening to that! (I don't tell that to every parent.) If Emma can answer any questions about what she reads, obviously it is not just memorization! She could not have a 50 IQ and do that. In fact, based on that ability to read and understand I would think it would be at least 75. It could very well be a very average IQ (or above average), but with such diverse skills and difficulty with expressing, it's impossible to know for sure. For me this would be when I would try lots of different things and see what works and what doesn't. Obviously she is benefiting from the therapy she has, so that works and you keep it! With the kids I have seen having services dropped due to no potential for improvement, not a person questioned the decision. Technically (from a legal standpoint) due to delays the kids qualified for services so parents could sue for services if denied. So this is where the "individual" part would come in. If the IEP team feels these services are not beneficial, why have them even if available? You would know, as a mom who is very aware, if there was ever a point where this happened for your daughter. I hope that you don't have to pursue things privately. The school day is already long and she should be able to get all she needs at school.

I encourage you to find your state's special ed manual. See what you can find in it. That was what helped me after I moved from Idaho (where I taught) to Tennessee (shortly after the boys were born).

I hadn't even thought about checking with the March of Dimes or anything! Great idea! I live just outside Memphis so there SHOULD be things available. (There is far less than I would expect from a large city. The one children's hospital is horrible with ER waits up to 24 hours, months of waiting to see any specialist--including four months for the feeding clinic! I guess Memphis having the highest infant mortality rate in the nation says a lot!) That actually gave me an idea of some other places I could check for assistance. Thanks!

Oh, here's a thought I had. You said her current IEP has her in a self contained classroom. Does it have her in a self-contained CLASSROOM or SCHOOL. If it is a school, then that HAS to be changed. In the regular public school she can't be in a self-contained school. This change (to being in the regular classroom--as it sounds she is more than capable of being) could be made with a simple amendment and not a NEW IEP. If this is changed with an amendment, the other services don't have to be touched. Even if her current IEP does say a self-contained classroom, this can still be changed with an amendment and not a new IEP. Actually, and this is just coming to me, you could address this all before leaving the charter school! In our district you always expected service changes from preschool to kindergarten, kindergarten (half day) to first grade, and sixth grade to jr high. So what we would do sometimes is write a new IEP and list services from the date of the new IEP to the end of the school year (Start Date the current date, Stop Date the last day of the school year) and then another set of services for the next school year (Start Date the day after the previous Stop Date and the Stop Date when the IEP expires). This way there is an IEP in place that you want if she enters the public school and it would not have to be changed! You have a right to ask for an IEP meeting and a new IEP whenever you want. (Yes, a parent could ask the school to write a new IEP every single week even though they can be for up to a year.) So before the end of the school year, ask for a new IEP. This may actually work really well for you if you can get it done.

Keep doing what you are for Emma--and I hope you don't have to fight for anything!

Mom2KnK

Thanks so much for sharing from the special education teacher perspective. I wished I had this information about when my daughter turned 1 (she's now 5). It would have helped my husband and I greatly. We had to read and learn quickly and pray for guidance. She will be graduating kindergarten and have been mainstream for two years. All the early intervention and related services really help her. I do hope more parents keep services for their children in least restrictive settings.

beclyn

In MO, EI is done exclusively in the home or daycare (which is more convienient for some families). The therapists do the traveling to the families. Some months I rack up over 1100 miles, and my farthes kiddo's only 20 miles away and I'm lucky that I can cluster my visits in a few areas. In order to become a therapist, there are strict guidelines for each specific type of therapist, and we all have continuing ed requirements. Unfortunately we don't always know exactly how to work with each different disorder. Some therapists (like me) will spend hours researching and finding out as much info as possible, and sometimes the parents will have more info at first. And sometimes there are therapists who expect the same results from every child, reguardless of ability.

Due to budgeting shortfalls, our ex-governor tried to cut the EI program by giving it a $0 budget, until he was bombarded with irate people. So it was restructured a little and there is a sliding scale fee for families, with a maximum monthly cost of $100, no matter how many hours or services provided. (which is less than 1 1/2 hours of therapy for cost). For an average family without medicaid, the cost is $5-6 a month. Insurance is charged, but the laws are stated so that your insurance cannot hold EI against you by raising rates, using it as part of your lifetime cost, etc. As a DT I don't do anything billing-wise with insurance. I bill the state and they do the billing beyond that.

Ahhh, my daughter is having her 10th nightmare tonight and has only been asleep 3 hours!!!

jaredkate

Thank you for posting this! It is very helpful! We have been working through coordinating EI services and it is VERY frustrating. We are going private because the EI services in our state our ridiculous. I can't possibly believe that my son will benefit from twice monthly 1/2 hour visits, which is the maximum they say our state pays.

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