School employees generally try to do their best for students with disabilities. Most of them came to the field to do some good, but face many barriers in trying to do so. They also make honest mistakes.
The barriers facing school employees begin far beyond the walls of schools. Special education has had funding issues at the federal and state levels for decades. Districts with the greatest overall budget problems often have the largest special education populations. Special education law is complicated and unforgiving, and schools struggle to keep up with it. Timelines test them and force staff to hurry. Special education teachers have more responsibilities than their training usually covers. The act of trying to educate students who struggle to learn is inherently difficult. The job burns people out and they leave, creating an environment in which schools lack experienced staff. These aren’t excuses. These are realities.
Amid these realities, schools make mistakes. Teachers, therapists, and administrators usually don’t deliberately deny services to students with special needs, though this certainly does happen on occasion. More often, school members of IEP teams simply come up short of their intentions. They lack the resources to adequately provide for students, or the individuals charged with providing services are pulled in too many directions to effectively implement IEPs. When team members are awash with competing responsibilities, the potential for mistakes and negligence rises.
Just because a school faces barriers and school employees are strained doesn’t mean they should get a pass on failing to implement IEPs. They have an obligation to collaborate with parents to create appropriate IEPs and to implement these with fidelity. While parents should understand that school employees struggle to provide what the IEP demands, they need not accept negligence.
What follows is a set of common mistakes made by school members of IEP teams. Parents can use this as a rough guide for filtering for possible errors and misgivings on the part of the school team. The list isn’t exhaustive, but it should serve as a place to begin critically examining how the school team is performing.
- IEP goals that aren’t measurable
This mistake might have more to do with a special education teacher’s writing skills or understanding of protocol than with any resource strain the school is experiencing. A teacher might recommend sensible goals, but these might be worded in a way that renders them immeasurable. If the goals aren’t measurable, the team can’t effectively gauge progress. Strong goals should name the student, cite a condition for the goal (under what circumstances it should happen), describe the skill to be performed or the content to be mastered, and give criteria for performance. For example:
Strong goal: Given a list of 25 words from the 2nd grade Dolch sight word list, Jeff will pronounce at least 20 words from the list without error in 5 consecutive trials by (date).
Weak goal: Jeff will improve his sight word vocabulary.
- Vague or generic specially designed instruction
Similar to issues with immeasurable goals, this mistake affects the usability of the IEP. Specially designed instruction should be tailored to the specific student. The IEP should specify where it will take place and how often it will be needed. For example:
Strong specially designed instruction: One additional class period of extended time in a resource room for mathematics tests that include constructed responses.
Weak specially designed instruction: Extended testing time.
- Insufficient transition component for students at either 14 or 16
Schools sometimes struggle to plan adequately for student transition. In some cases, the transition section of an IEP can be left sparse for a student who should be considered for services. At age 14, a discussion of transition must be part of the creation of the IEP. This can happen earlier, but it must be in place for students turning 14 during an IEP term. For students turning 16 during an IEP term, specific transition services must be described. In particular, for students 16 and older, the IEP should include stated transition outcomes, present performance levels in relation to these outcomes (these should include reading and math levels, but also performance on transition assessments and interest inventories; performance in relevant and specific areas such as knowledge of personal information might be needed), goals and objectives in support of outcomes, and detailed services that will support goal progress.
4. Outdated or inaccurate present levels
Present levels of performance should be within 6 months of the IEP meeting date. Exceptions can include students who have been absent for long stretches. Otherwise, IEPs should showcase recent performance data, even if the IEP is written in between evaluation years or if the student isn’t likely to show much growth between testing periods. All assessments used should be appropriate for the student. Recent anecdotal information should accompany the new levels, replacing or supplementing previous information.
Parents must take time to review present levels to be certain these are individualized. Teachers pressed for time might copy and paste text from IEPs of other students. Parents should check to see if names and pronouns are consistent throughout documents.
5. Incorrect dates or outdated documents
Related to the item above, parents should check IEPs for correct dates. An IEP term should be a full year minus a day from the IEP meeting date. Exceptions can be made for students scheduled to graduate within the term or for upcoming evaluations. The date programming is to begin should be agreed upon by all team members and shouldn’t allow for any lapse in service from the previous IEP. Parents should keep track of timelines on their own to ensure schools don’t allow documents to fall out of compliance by overlooking them.
- Unauthorized changes in related services
Related services such as physical therapy shouldn’t change without parental consent. Therapy levels can’t increase without an evaluation, but therapists can decrease them between evaluations. They can’t do this without discussing the matter with parents. A related service can’t be added or deleted at whim. Parents should check the related service section of a new IEP against the previous IEP for any differences the team might not have addressed.
If a statement of need exists in an IEP or evaluation, the IEP should address this through specially designed instruction or a related service. For example, if a need in communication is noted, the IEP should include some provision for speech. Similarly, anecdotal information about problematic behavior should be a trigger for a behavior plan.
- No discussion of ESY
Although extended school year services typically are reserved for the most disabled students, a conversation about the appropriateness of these services must happen for all students. Teams must verify whether or not a need exists. IEP meetings shouldn’t conclude without such a conversation. The IEP must reflect the decision of the team regarding eligibility.
- No discussion of placement options
Placement typically remains stagnant for students who receive special education services. However, the point of scheduled evaluations is to determine if services continue to be necessary and if the level of services continues to suffice. Every IEP meeting should include a conversation about whether or not services need to continue at their current level or at all.
The IEP must contain an explanation of why specialized services are necessary. Progress or participation in the general education curriculum must be noted. The degree to which disabling conditions affect progress or participation must also be noted. The IEP must reflect how much time the student will spend outside of the general education environment. School members of the team should be reviewing all of this with the parents at each meeting.
Placement options are a crucial part of any discussion of discipline involving a student with an IEP. Parents should be mindful of any placement options being considered during disciplinary proceedings.
- Documents not in native language of parents
The school must provide documents in the native language of the parents, which is increasingly easy to do. Interpreters must be available for meetings and phone calls as well. With interpretation services widely available, schools have little excuse for not providing these.
- Team members absent from meetings without parental consent
IEP team members only can be excused from IEP meetings if the parent is notified beforehand of the pending absence and gives approval. If the parent doesn’t approve, the meeting must be rescheduled. Emergencies do happen, but the team can’t move forward without the consent of the parent.
- No procedural safeguards notice
The school must inform parents of procedural safeguards, which are rights outlined by special education law. These rights are described in a document schools must provide to parents (typically around 30 pages). For any parent new to special education, these are vital.
- Insufficient notice for meetings
Schools must formally invite parents to special education meetings. They must offer a range of participation options. Meetings sometimes must be held unexpectedly and immediately, but in most cases, notice should be sufficient for parents to make arrangements for attendance. Parents also should have sufficient opportunity to review documents, in particular, to read evaluation reports prior to IEP meetings.
Just as schools might face time and resource constraints that limit the ability to address special education mandates, parents might face interruptions and distractions that pull attention away from some of the nuances of special education documents and relationships. Some of the mistakes mentioned above might be just that—mistakes. Parents need to be diligent in checking for these and willing to diplomatically bring them to the attention of school officials.
Pros and Cons of Extended School Year
By Jeffrey Hartman - @jhartman1276
Extended School Year (ESY) services are a set of supports designed to prevent students with IEPs from losing established skills during the summer break. While any student with an IEP potentially could be eligible, ESY services are reserved for those who exhibit skill regression or delayed skill recoupment following scheduled breaks from school. Evidence of regression and recoupment issues can include the suspected potential for established skills to diminish. Each IEP team determines student eligibility, but students with the most severe disabilities tend to automatically qualify.
Every IEP team must consider ESY services. Teams use a set of criteria to decide whether or not ESY services are warranted. Meetings for students thought to be eligible are held midway through school year to give parents ample time challenge if the school denies eligibility. In some districts, arrangements for ESY services need to be made early in the spring for logistical reasons, but districts are obliged to ensure that services will be available for any potentially eligible students regardless of when eligibility decisions are made.
ESY services are not the same as summer school or a summer camp. They are not meant as enhancements to existing learning programs. An ESY program is meant to prevent a student from losing a skill. Services are intended to prevent a lapse or reversal of progress. Because of this, ESY services aren’t comprehensive. Rather than resembling an abbreviated version of the regular school day, ESY services focus on just one or two IEP goals. Teams concentrate resources on maintaining progress towards these particular goals.
Even though schools must provide ESY services to eligible students, attendance isn’t mandatory. Parents can send eligible students every day, every other day, or no days. Students need not attend, but school must have everything in place in case students do attend. This includes any related services that might be needed to support goal progress. The IEP must describe everything necessary to make ESY services successful.
Deciding whether or not to send students to an ESY program can be difficult for some parents. Several factors can complicate this decision. The eligibility criteria might make clear the potential need for the services, but it doesn’t tell parents whether or not services will be of benefit. Clearly, this decision must be made case-by-case, but below are some pros and cons of ESY services that might assist in making the decision.
- ESY services are free. They are considered part of a student’s Free Appropriate Public Education (FAPE) and therefore must come at no cost to parents. This shouldn’t be a determining factor when deciding against other potential summer placements, but parents shouldn’t decide not to send out of a fear of costs.
- While not comprehensive, the services will continue the effort to support progress towards one or more goals in a structured and highly individualized manner. ESY services will have a deliberateness and rigor not seen in other types of summer programs.
- The program will provide some measure of stimulation and engagement, even if tailored to a limited area of need. The target area will be of principle concern, but some naturally occurring socialization will take place.
- School-based related services such as speech or occupational therapy will continue, albeit in a limited fashion. These will be meant to support the specific setting of ESY, but progress made during the regular school year has some opportunity to continue.
- The services will take place in the safety of a school with certified teachers rather than in a camp setting that might involve volunteers or undertrained staff.
- The student might have different teachers, therapists, and assistants than during the regular school year. If so, they will need time to get to know the student, which could amount to time lost during an already short program. Additionally, services might be in a different classroom or building with different classmates than the student knows. The changes could be a difficult adjustment for some students.
- ESY services almost always happen during a truncated school day and week. Considering this, progress towards even the limited aims of the program can be strained, especially when feeding, dressing, and toileting needs are included. Essentially, the point of the services can be derailed by the limited time available.
- School buildings undergo renovations during the summer months. While a building might be hosting ESY services, it also might be having work done to the air conditioning or plumbing. Such renovations could inadvertently interrupt services, even though the services are guaranteed.
- Students are grouped as much as possible by relative abilities, but the possibility exists that a student might be mixed into a class with students who have remarkably different needs. This is dictated by space, available staff, and the number of students with particular needs enrolled.
- ESY services aren’t likely to be as enjoyable for a student as other summer placements might be. In the spirit of normalization, ESY services are quite different than what students without disabilities experience during the summer. A student might need a break. Another student might benefit from a general camp experience, or from one focused on developing some other aptitude. Maintaining skills is important, but so is enjoying childhood.
Functional school districts with ample resources should be able to provide a worthwhile ESY experience. Districts that struggle to provide for students might offer ESY experiences that could be outright detrimental. Parents must remember that gains from ESY services are likely to be slight and some loss could occur despite enrollment in the program. Attendance is not mandatory, so sampling a program while reserving the right to withdraw might be worth a try. Each case must be decided with what is best for the student in mind.
The Importance of Psychological Testing for Students with Intellectual Disabilities
By Jeffrey Hartman - @jhartman1276
For students who have intellectual disabilities, any kind of testing can seem like a burden for all involved. The student might struggle with the demands of the test. The psychologist might have difficulty administering the test in a way that accommodates the needs of the student. The parent can feel the test is going to reaffirm disappointing news about the student’s aptitude. However unpopular tests are, students with intellectual disabilities (or those on the cusp of being identified) are likely to need a specific and crucial test score to accompany them into adulthood. Most will need an IQ score.
IQ scores and the tests used to obtain them take heat from the public. Decades of criticism claim they don’t tell enough about a child’s functioning to be used to determine disability (test scores alone don’t determine this in schools). Critics denounce their use and suggest scores burden children with unshakeable labels. From accusations of cultural bias to questions about norm referencing, IQ tests and scores connote their share of negativity.
Whether or not anyone likes them, IQ scores are what county intellectual disabilities offices typically use to determine eligibility for services. These offices have enough cases to process that they don’t have time to work with anything but numbers. A constellation of factors might be used in schools to determine the presence of an intellectual disability and subsequent eligibility for special education services. At the county level, a clear and indisputable number usually is necessary. Using the score, the county will assign a case manager or give the family a choice of supportive agencies from which to choose. The agencies will provide services such as respite care, community integration, and job coaching. Eligibility allows a waiver that can be applied to the costs of recreational services or adult day programming. Without the score, accessing any of this can be anywhere from difficult to impossible.
To get the all-important score and resulting services, an IQ test must be administered, or at least attempted. Some students with serve disabilities might have been found eligible for special education services without undergoing IQ testing. Evaluating teams might have recognized that attempts to obtain a score wouldn’t yield anything of worth. County offices of intellectual disabilities will require some bona fide score. The specific test typically isn’t important, so long as it’s a commercial test from which a score can be obtained. If the student isn’t capable of responding to the test, a statement from the psychologist administering the test should suffice, assuming an attempt was made.
The cutoff for intellectual disability services is typically an IQ at or below seventy. The score should be no more than five years old. Some counties and states will accept older scores, but the more recent, the better. Ideally, the scores should be obtained before the student turns eighteen, because strictly speaking, an intellectual disability by definition must manifest before then. Depending on the county, intellectual disability services won’t be available until student turns twenty-one, but some services in some counties can start at eighteen or even earlier. To get the services at any age, the score has to exist.
Parents are sometimes caught off-guard when their child who has received special education services for years suddenly needs an IQ score to receive services outside of school. This is especially surprising if their child has been receiving life skills-oriented instruction. Yes, sometimes a statement of an intellectual disability in an evaluation might be enough to secure services from the county. Parents who assume this will be the case often assume too much.
For students whose functioning is thought to be on the cusp of an intellectual disability, testing is a judgment call. A student functioning at this level might not need some of the services offered by the county. Furthermore, the student and the family might not want to know the results if these happen to indicate an intellectual disability. A conversation about the need for services should happen with the IEP team.
Before putting a child through an IQ test, determining with certainty whether or not the score will be necessary is wise. Parents can find out from the special education department of their child’s school, from the county intermediate unit, or from the county office of intellectual disabilities. The names of these entities vary from state to state, but locally tailored searches should reveal the appropriate parties. The school might have a recent enough test score on file that new testing won’t be needed. If not and if the county requires an updated score, the school can and will administer the test.
Considering the expense in obtaining a score privately, petitioning the school for the score is wise. Parents can request an updated evaluation that includes an IQ score. Doing so in writing is always best. Motives need not be covert. Having the score is an important component of transition, so schools should be willing to assist. A plan might be in place to conduct the test during the last evaluation cycle prior to the student turning eighteen, but if not, urging the school is recommended.
The test itself will consist of a variety of logic puzzles, many involving pictures or items that are read to the student. For the score to be valid, standardized conditions must be maintained, although some accommodations can be made. Depending on the student’s disability, multiple sessions might be needed. Many schools share psychologists with other buildings, so a multi-session test could take weeks to complete. Parents might have questionnaires to answer, or at least some opportunity for input in the new evaluation. A full evaluation isn’t really needed unless the student is due for one. The evaluation used to obtain services can just include the IQ test and results.
Schools often offer a standalone evaluation that states only the IQ test results. The score will be obvious in this document. Schools cannot furnish this to the county or anyone else without the parent’s permission. Generally, the parent presents the findings to the necessary parties. School officials can help identify these if necessary.
The cruel irony is when a student tests too high to be eligible. Legions of adults exist in a limbo of not being eligible for intellectual disabilities services, but not being capable of many competitive jobs or training options. As with any other evaluation, parents can dispute findings and request an independent evaluation through the school. A second evaluation is no guarantee of a different score, but if services are desired, it’s worth a try.
Parents of students with disabilities sometimes cringe at the thought of their child having to endure testing. What must be understood is that some of these tests can be gateways to important benefits. IQ tests remain integral to special education services as well as to county intellectual disabilities services. Working with schools to make sure a score is on file is critical for transition.
By Jeffrey Hartman - @jhartman1276
Beginning The Paper Trail
Part of the difficulty parents face in navigating special education is coping with the barrage of paperwork. Parents aren’t alone in feeling overwhelmed. Excessive paperwork is a common complaint among teachers in the field. Special education demands layers of documentation. Understanding why along with what the documentation means can help dispel some of the confusion about special education processes.
Why Is There So Much Paperwork In Special Education?
The simple answer to this question is that the law requires it. A more thorough answer includes some explanation as to why the law requires it and why schools have had to respond to the law with such seemingly excessive protocols.
In practice, special education is a set of services meant to grant students with disabilities access to appropriate educational programming. The services are the visible part of special education. They happen to be merely one area covered by special education law. Most of the law deals with protecting the rights of students and parents. Services just happen to be one of those rights.
Special education law in America falls under the auspices of the Individuals with Disabilities Education Act (the IDEA). The law outlines eligibility for special education services. It requires schools to provide appropriate educational opportunities to students regardless of disability and at no cost to parents (Free and Appropriate Public Education, or FAPE). These educational opportunities must happen in the closest setting to the general education environment that is possible (the Least Restrictive Environment, or LRE). Each student must have a set of services tailored to his or her needs (an Individualized Education Program, or IEP).
To assure all of this happens, the IDEA requires schools to document every interaction with parents. The point of the documentation is to prevent schools from inadvertently or even purposely denying educational rights to anyone. Schools have mandates to follow according to the IDEA that parents never see, but most of the paperwork parents do see exists for the sake of holding schools accountable for following protocol, including the provision of services.
Schools face pressure to fulfill the mandates of the IDEA. Districts can lose funding if they fail to adequately provide services or document their efforts. Compliance with the IDEA drives much of what special education teachers and administrators do. Furthermore, mistakes made at any point in the process could result in parents filing for due process and possibly recouping compensatory education settlements. Certainly, most special education teachers and administrators are doing their jobs because they want to help students achieve, but the pressures they face are what create the paperwork parents see.
What Does The Paperwork Mean?
As parents receive document after document, special education can begin to feel like an exercise in redundancy. Parents of students who have received services for several years can become exhausted by having to review the same documents repeatedly. The documents do have purpose. Explaining them individually will help clarify this. The explanations will follow the order parents are likely to encounter the documents.
- Permission to Evaluate (PTE)
The PTE allows the parent to give the school permission to conduct an evaluation designed to determine eligibility for special education services. The school will issue a PTE under a few conditions. A student might be coming to an elementary school following Early Intervention, so the parent might request that the receiving school evaluate for services prior to admission. School staff might recommend an evaluation if a student has shown difficulty accessing the general education curriculum even with interventions. A parent might request an initial evaluation at any point in the student’s educational career. If so, just like with a student coming from Early Intervention, the request should be in writing. Schools do have to honor oral requests, but the written request is verifiable.
The school must respond following the receipt of a request. They may offer a Permission to Evaluate-Evaluation Request form prior to offering a PTE if an oral request is made. This extra form is their way of getting the request in writing. When parents receive the PTE, they can decide whether or not they grant permission and then sign and return the document. They’re essentially giving permission for a battery of assessments to be completed, possibly including psychological testing and even a medical assessment. They’ll often have questions to answer in the document about their child’s performance. They have to give permission for an Initial Evaluation. In subsequent evaluations, schools can evaluate without parental permission. Teams can even waive an evaluation should members agree that one isn’t needed to confirm eligibility.
For students with services in place, schools will issue a Permission to Reevaluate (PTRE) every two to three years (depending on the disability). This will be nearly identical to the PTE. Schools typically issue PTREs in the months prior to the expiration of the existing Evaluation Report.
- Procedural Safeguards Notice
This might be called a Notice of Parent Rights or something similar. The document is a lengthy, detailed description of student and parent rights throughout all special education protocols. Schools must provide this notice at some point during the school year. While there isn’t a specified point in the process to issue it, schools usually do so early in the process, perhaps shortly after an evaluation request.
- Psychological Questionnaires
While not specific to special education, if a student receives psychological testing as part of his or her evaluation, parents will have additional questions to answer on a series of non-district, commercial forms.
- Invitation to Participate
As the evaluation is completed, a meeting will be scheduled to review the draft Evaluation Report (whether an Initial or Reevaluation). The school will invite the parent using an Invitation to Participate form. This same form is used to invite parents to IEP meetings. The Invitation to Participate will list all parties the school intends to invite. Schools must issue an Invitation to Participate to students fourteen and over. The document must include a suggested time and place for the meeting, along with an opportunity for the parents to request any special accommodations.
The Evaluation Report and IEP may be reviewed during the same meeting, but often two separate, successive meetings are held. For the Evaluation Report review, the school will send a draft of the document for the parents to review prior to the meeting. Even if a student isn’t being evaluated in a given year, the school must issue an Invitation to Participate for the IEP meeting.
- Evaluation Report (ER)
The ER is the document that will be used to determine a student’s eligibility for special education services. It is the culmination of findings from the evaluation team, including input from teachers, therapists, parents, and the psychologist. If the findings point towards eligibility, the document will include a recommendation for special education services along with what specific type of services. Should parents disagree with the findings, they can request an Independent Educational Evaluation (IEE).
ERs are written every three years for most students and every two years for students with more severe disabilities. Following the Initial Evaluation, ERs are referred to as Reevaluation Reports (RRs). When psychological testing is completed as part of an evaluation, a stand-alone Psycho-Educational Evaluation Report accompanies the ER or RR. All the same information is included in the ER or RR, but the stand-alone document can be helpful in petitioning for post-secondary services. All parties involved in creating the ER or RR sign it.
- Functional Behavior Assessment (FBA)
If a student has behaviors that need to be addressed through supportive services, the school may conduct an FBA as part of the evaluation. The FBA will use an assortment of evaluations to determine the antecedents of a behavior, the target behavior itself, and the consequences of this behavior. It will then recommend a course of action for supporting the student so that the behavior doesn’t interfere with learning. The FBA can happen separately from an ER, but parents still have to give permission through a PTRE.
- Individualized Education Program (IEP)
The IEP is what most people associate with special education. It is the document that outlines the services recommended in the ER or RR (or FBA, if one exists). The IEP contains a summary of the ER or RR, a description of present levels of student performance, annual goals for performance within the student’s curriculum, specially designed instruction to support performance, and a description of any related services, such as therapies. The IEP will detail how much time the student spends outside of general education environments, along with why. IEPs for students turning fourteen and older must include a transition plan. If an FBA recommends a Positive Behavior Support Plan, that must accompany the IEP. The IEP must be created annually, but IEP review meetings can happen several times per year at team member request.
Importantly, IEPs contain a signature page that shows who participated in the meeting. Signatures do not indicate approval of the plan. After the meeting, the team typically has a few days to implement the document. The parent should have time to review it. The IEP isn’t in place until the next document is signed by the parent to show agreement.
- Notice of Recommended Educational Placement (NOREP)
Until the NOREP is signed to indicate parental agreement, any new services outlined in the IEP can’t happen. The NOREP states what level of special education service the school will provide. It is the actual statement that these services will be provided. The IEP is the description of services, but the NOREP is the authorization. Sometimes a NOREP is written to cover a single new or changed service. A special NOREP can be written for students who are no longer eligible for special education and are exiting. Should a parent wish to refuse any part of an IEP and request mediation or due process, the NOREP is where to do it.
- Medical Assistance Billing Parental Consent Form
For students who receive related services such as school-based occupational therapy or speech therapy, parents have the option to give the school permission to bill these services to the state. Parents can grant or deny this consent. Services will not be declined if a parent denies consent.
- Manifestation Determination (MD)
If a student with an IEP causes in infraction in school that would normally warrant discipline, an MD must be conducted to determine if the student’s disability was the cause of the behavior leading to the infraction. Students aren’t to be disciplined for anything attributable to their disabilities. If the MD finds the student’s behavior was not caused by the disability, typical disciplinary measures can be enacted, so long as the student’s educational program isn’t interrupted beyond predetermined degrees. If the MD finds the student’s behavior was a manifestation of his or her disability, a new FBA typically must be made. The MD review meeting is an IEP meeting for which the parent must be invited. It often leads to the issuance of a new PTRE for the creation of an FBA.
- Progress Reports
Progress towards IEP goals and objectives must be reported at whatever intervals the IEP team determines. They are usually issued with report cards, but they are not the same as report cards. Report cards show grades in courses. Progress reports show progress towards IEP goals, which are in place to support overall curricular progress. The goals are typically skills needed for curricular achievement. The grades on report cards are the curricular achievement. The exception is for students who follow alternate curricula. Their grades might mirror their IEP goals.
- Summary Of Academic Achievement And Functional Performance
This document is created at the end of special education services, typically when a student is leaving school. It lists what academic or functional competencies the student has achieved by the end of services. It also describes steps the student and parent can take for post-secondary living, along with contacts for resources.
Dealing With The Documents
The list above isn’t exhaustive. Some special circumstances demand other less common paperwork. For most students, these are the most frequently appearing documents. Many students won’t need FBAs or MDs, but any eligible student will have ERs, IEPs, and NOREPs. Parents would be wise to maintain a chronological binder of all documents, either organizing strictly by date or by document type. Keeping copies of every document is also recommended. Schools will furnish replacement copies upon request, but preserving records is best.
Special education is awash with paperwork, but an understanding of what each document is along with a good organizational method for dealing with them will benefit all involved. The IDEA is in place to protect rights, which must be remembered when the paperwork seems burdensome.
This is blog post is one in a series by contributing blogger Heather Johnson.
Once you have your waiver, you are eligible to start receiving services. This blog series will explain and explore some of the more popular services, but before we get into specifics, here are some general things to know:
*If your waiver has a cap, you cannot go over that amount of money. This sometimes means making hard choices, such as between summer camp or respite. Also, keep in mind that if you are at the cap, you still might have to make hard choices in July when the new fiscal year begins, because services can increase in price between one year and the next. Always be prepared to have to re-evaluate your services regularly based on cost.
*Putting services in place is not a fast process. Usually it takes three to six weeks to begin services. The first thing that happens is you’ll have a meeting with your supports coordinator (SC) to discuss what the needs are and what options are available. Next, your supports coordinator will send out referral packets to provider agencies, which basically serves to give basic information about the individual to see if the provider has vacancies or a staffing match. After that has been established, you’ll either take a tour of the facility so everyone can meet each other, or have an intake meeting at home. If everyone on the team agrees, a start date will be established. The SC will then do what is called a critical revision to the individual support plan (ISP) to start the service, and submit it to the county. The county Administrative Entity (AE) requires at least ten business days to approve a service; keep that in mind when beginning services. In emergent situations this can be circumvented, but is not recommended.
*You will not get paid money from the county or federal government. Many people have the idea that they will get a lump sum of money to spend as they see fit. The process is this: once you have a service in place, the provider bills the waiver directly. There are some options for more control in terms of hiring staff or becoming an agency-with-choice provider, which are very complicated but work for some incredibly organized individuals with time to invest. For more information on PPL (a company that provides alternative service arrangements) and agency-with-choice (AWC) providers, reach out to your supports coordinator.
*Primary caregivers, in the majority of situations, cannot also be staff. Unfortunately, you can’t be paid to provide care to your child. Sometimes a family member can get hired by a provider to provide services, but rarely ever the primary caregiver.
*There are sometimes qualifications that have to be met before certain services can be provided. For example, if an individual should need nursing, a letter of medical necessity is required from the doctor as well as a denial letter from the insurance company. For job services, the person must have gone through the office of vocational rehabilitation (OVR) and obtain documentation that either the 90 days of services have been used or the person is not a good fit for OVR. The reason for this is the waiver is the payer of last resort-if there are any other possible funding streams for any service we have to attempt to go that route first.
*Consolidated waivers are incredibly scarce. It’s a lovely idea to have your adult child fly out on their own by moving into a community living arrangement (called a CLA or group home) and having a job while you still live at home and are healthy, and ideally, that would happen for everyone. Unfortunately, there just isn’t enough money to go around. Right now, some people in dire situations do not have services because funding is not available. If an individual is safe where they are, they will not be prioritized for community placement. I apologize for the harsh truth; the funding is controlled at the government level. If we as a community really want change for our adult loved ones with disabilities, we all need to get on the phone with our legislators and demand funding for Medical Assistance, it’s the only way to get the money we need.
As always, should you have questions about waiver funding you can contact your Supports Coordinator, your county Administrative Entity, or me.
Heather Johnson is a Supports Coordinator Supervisor at The Arc Alliance, a nonprofit organization supporting families and individuals of all ages with developmental and other disabilities. In addition to her personal experience as a family member of those with special needs, she has been working for 18 years in all areas of the special needs community. Heather is one of the guest bloggers who will periodically post information for Kokua Network members.
Passed by the Federal Government in December of 2014, the "Achieving a Better Life Experience Act," or ABLE Act is a landmark bill that will affect how disabled individuals and their families manage finances. The ABLE accounts have been compared to 529 education savings accounts for disabled individuals. Each state must adopt their own version of the act, and most state legislatures are currently working to make the ABLE Act a reality.
Prior to the adoption of this Act, saving money for a person with special needs could be difficult and required forming a Special Needs Trust. That is because individuals who receive government benefits must keep their assets titled in their name or for their benefit under a certain amount. Those special needs trusts protect the assets from being a countable resource when determining benefits but they have an expense in setting them up and the money in them could only be used for certain purposes. Per the ABLE Act, so long as the ABLE account balance remains under $100,000, the money in the account will not be counted by the government as an asset of a disabled individual in assessing eligibility for resource-based benefits. And the fee in setting up an ABLE Account will likely cost less (although that remains to be seen). If the ABLE account were to exceed $100,000, SSI would be suspended, though not terminated, but medicaid would remain unaffected.
An ABLE account opened for a disabled individual is less restrictive than a Special Needs Trust in how the funds can be used; most notably, the money in an ABLE account can be used for housing whereas money in a Special Needs Trust cannot without having an effect on benefits. Anyone can contribute to an ABLE account, including the disabled individual. If a disabled individual works and earns money or is the recipient of an inheritance, that money can be invested in an ABLE account and their government benefits can be protected. Earnings on an ABLE account will not be taxed, though contributions to the account are not tax deductions.
This form of saving will not completely replace the Special Needs Trust - it is only available to individuals whose disability occurred before age 26 and does have contribution limits which will be determined by State Legislatures. Further, a big disadvantage is that funds in an ABLE account are subject to medicaid payback, whereas funds in a Third Party Special Needs Trust are not.
Used in conjunction with a Special Needs Trust, an ABLE account will provide an excellent way to protect the needs of your loved ones with disabilities. In most situations, investing in both can maximize your loved one's government benefits while minimizing tax exposure and the potential for paying money back to the government. Take our Special Needs Trusts bootcamps to learn more about them and if they are right for your family.
Laurie, a high school girl with Down Syndrome, has presented our biggest transportation problem thus far for our district. Yet, I can say with a smile, that with teamwork and strategizing, Laurie can now endure a twenty minute bus ride without any commotion.
In brief, Laurie needed to be transported to a vocational/special educational school every day. Although we had a one-on-one aide assigned to ride the bus with Laurie, it didn't stop her from removing her shoes and whipping them at the football players in the back of the bus! Laurie would then call them names for the entire bus ride. We tried a variety of techniques and nothing worked. Laurie's mom even offered to ride the bus, but we felt there had to be another way to encourage Laurie to behave appropriately.
Then one day the answer was right before our eyes! While waiting for the bus, one of the football players was listening to country music and asked Laurie if she wanted to hear the song. When he gently placed the ear piece in Laurie's ear, a huge grin came across her face and she began moving to the music. The student let Laurie listen to the music for the entire bus ride and she was in her own happy world. The following day, we had music ready for Laurie and it worked! In addition, we discovered she loves to do word search puzzles.
When the CSE/IEP team determines that a student with special needs will benefit from a program outside of the school district, transportation needs to be addressed. The same is true if the child has to daily ride the bus to and from school. Some students with special needs won't need any special accommodations, and others students like Laurie, will need a plan in place to ensure the student's safety and the safety of the other students.
Here are some considerations when discussing transportation needs of a child with special needs:
- Determine whether or not an aide is needed for the bus. Some buses already have a bus monitor, but is there a need for an adult to sit with or near the special needs student? The need for an aide isn't always due to behavior, it could be for a physical need. If the CSE/IEP deems that an aide is needed, it should be included in the IEP.
- Train the adults on the bus. The bus driver, bus monitor if there is one, and the one-on-one aide all need to be trained on transporting students with special needs. The training should be upbeat and staff should be looking forward to working with all students.
- Utilize a behavior chart. Depending on the child's needs and personality, many students with special needs respond well to a behavior chart. For little kids, it might mean using stickers and for older students using tally marks. After so many stickers or tally marks, the child is given a small reward for good behavior. For a high school student with behavioral issues, a behavior contract could be utilized.
- Find out what the student enjoys doing. If the student has a special bag that contains music, puzzle books, a squishy ball, or whatever he or she enjoys while traveling, it can make all the difference in how the bus ride goes.
- Keep good communication with the parent. A parent needs to know that transportation is going well. Then on the occasion when there is a concern, it can be discussed and a new strategy can be tried if needed. If you only contact a parent when there is a problem, then it might cause the parent to be on the defense or feel hopeless.
- Determine which mode of transportation is most appropriate for the child. Some older students with special needs will travel better if they are with younger students. They don't feel intimidated or that students are staring at them. In some cases, a student just can't handle riding on a large bus and will need to be transported by a small bus or school vehicle.
As we discovered with Laurie, you might need to try a variety of things before you find a strategy that works. Keep your sense of humor and stay positive. Once you discover the right combination, transporting a child with special needs can be very rewarding. What types of things have you tried that have worked for your child?
After receiving a diagnosis that can either affect yourself, your child, your spouse or a parent, it is a life altering experience. What to do next can be overwhelming. A good place to start can be a local support group. A local support group is a community of individuals who meet together from time to time to discuss, listen and to become more familiar with a particular area of need. Local support groups are varied from so many subjects that finding the right one for your need, can be really simple or difficult.
If there are no local area support groups in your area, perhaps you have decided there is a need in your community and you would like to start one. Below, you will find 5 keys to starting a local support group, for the need that you are in search of.
- Is there a need? How many other people in your community do you know, who are going through the same difficulty that you are? Have you heard of others who have suggested they are in need of advice or support? Checking with state agencies, that fit your need can be a wonderful resource. They can help you find out if there are any other local support groups in your area. They also, may have a database of individuals who are in the same need as you are, who can help you with the start up.
- Time- How much time are you able to put into a support group? In the beginning stages of planning it may seem like you are spending a lot of time getting the support group built up. Anywhere from one to five hours a week can be spent on launching a newly local support group. However, once you get things underway, an average of two to three hours a month is typical time spent on a support group.
- Volunteer- You may already have several friends who share your same need for support. Spend time talking with them about the idea of a local support group. Enlist your friends to help in the process. If you choose to name officers, these start up volunteers are those who will more than likely take these positions. Find volunteers who are willing to donate their time in different areas of the support group. The volunteers who share your same interest in a successful group will help you with your goal of achievement.
- Location- A central location in your community is the best place to serve your support group. You want a location that is easily available to all who are interested in coming. There are so many options for a location, but you will need to consider what is best equipped to serve the need you are looking for. If your need is small and intimate you may want to consider your or another volunteer's home. If your support group will be providing amenities, like childcare, than you will need to look for a setting that will be able to provide an additional area to accommodate that need, like a church or a recreational facility.
- Advertising- There are many ways to advertise freely to your community about your support group. Utilizing all of your free resources is a great tool in achieving a successful turnout. Below is a list of free ways to advertise:
- Word of mouth......tell everyone you know!
- Social media......create an event on your Facebook wall of page.
- Local newspaper......most local newspapers will advertise support group information for free.
- Flyer's......create a standout flyer with all of your groups information (time, location, amenities, topic etc) and pass out to schools, churches and other local business. Many of these will see approval first before putting up or sending out.
Once you follow these steps, sit down with your volunteers and discuss what topics would be beneficial for your needs. State and national agencies are a great resource to help you with topics and how to present them. Remember a successful local support group is rewarding in helping others, as well as yourself, to find the goal of what you all are in search of.
Helpful Steps When Transitioning To A New School District
For most any child, having to leave a school district where you’re comfortable with your surroundings and you have great friends, making the switch to a new school can cause some anxiety. For a child with special needs, this change can become even more challenging. Yet, as a parent, there are steps that you can take to help provide a smooth transition.
These steps include…
Step 1. Contact the new district in advance.
When you know for certain that you’ll be moving to a new location and you know which school your child will most likely attend, contact the Director of Special Education. Explain your child’s diagnoses, special needs and the type of program he or she is currently in. Offer to send a copy of your child’s latest IEP (Individualized Educational Plan). Find out how the school district services students with special needs. When a school district is given the heads up on a child with special needs, it allows more time for the district to prepare for the child.
Step 2. Set up an IEP meeting.
If possible, request to have an IEP meeting regarding your child prior to his first day at the new school. Put together a brief video or powerpoint that will help the IEP committee learn about your child’s strengths and weaknesses. In three minutes or less, let everyone present gain a good sense of who your child is. This tool will help immensely as the committee decides on a program and puts an educational plan together. Ask to visit the classroom and to meet some of the teachers.
Step 3. Take your child for a visit.
Before your child starts his first full day of school, make arrangements for him to visit the school. Enter the main door that he will typically be entering and ask to have someone walk the two of you through his daily schedule, showing where his classes are, the cafeteria, the gym, etc. If it’s okay with the principal, have your child sit in on a class so that he can begin to meet his classmates.
Step 4. Put together a picture book.
Depending on the age of your child and his special needs, consider putting together a picture book. The book should include photos of the bus your child will be riding, the school building, his teachers, his locker or cubby hole, the cafeteria, the gym, the classrooms, etc. Go through the picture book with your child a few times before his first day of school to help him become familiar with his new surroundings. During his first week, point at some of the photos and ask your child what he thinks about them. This will help you gauge how well he is adjusting to his new surroundings.
Step 5. Ask to have an older student be a buddy.
Many school districts will gladly line up an older student to be a “buddy” for a child with special needs. A buddy can help your child learn his locker combination, brave the cafeteria, and help him transition from class to class. Some students might only need a buddy for a few weeks, while others might need one for a full semester.
By taking these five steps, you’ll be providing a smooth transition for your child.