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.
We are talking with Jeremy Brenn of Sensenig Capital Advisors located outside Philadelphia. In this interview we discuss the beginnings of special needs financial planning. While some people avoid hiring a financial advisor because of procrastination or of the presumed cost, one of your best investments may be finding a trustworthy, qualified advisor. There are life events that a qualified advisor can help develop a plan for so that it can be implemented at the right time. The worst mistake would be to wait too long to do financial planning and then haphazardly put something together. We've broken the interview up into a few parts:
- What does a Financial Advisor do?
- What would the first steps be when sitting down with a Financial Advisor?
- How does a Financial Advisor work with other professionals to put a plan in place and what is the letter of intent?
- What are some considerations families should keep in mind when looking for a Financial Advisor?
As you can see in the interview, Jeremy stresses the importance of interviewing a few different advisors and making sure they have experience working with special needs families. Below is a diagram that illustrates how a Special Needs Financial Plan would be put together and issues that need to be considered.
Make sure you understand how they charge and keep notice of any potential conflicts of interests, as some advisors are incentivized to sell particular investments that earn them commissions. Also remember that some advisors only work with clients above a certain net worth but you may not need an advisor to that extent but an advisor you could pay by the hour or a set fee.
Housing Concerns For Individuals With Disabilities
Among the most important values and goals shared by people with disabilities, their families, and advocates are being part of the community and living as independently as possible. A home of one’s own – either rented or owned – is the foundation of freedom for people with disabilities. As those with disabilities age, several questions about their future care become relevant: Will he or she ever be able to move out of the family home? With whom will they live? Where will they live? Who will take care of them?
Trying to coordinate housing for those with disabilities can often be challenging. Preparing for home living means more than simply finding a place to live. Home living takes into account any supportive services that person might need, for example, healthcare and medication management, financial management, social and recreational needs, mobility issues, legal rights, self-advocacy, and transportation concerns. Also, It may be difficult for a family to imagine their child living on his or her own.
The first step in the process is to talk about visions for the future from the viewpoints of both the family and the disabled person. Even though starting this process at age 14 may seem premature to some families, it is important to begin this process then, however, so the child’s future is centered on what is best suited for him or her. This type of planning for people with disabilities is called “Person-Centered Planning.” It is a way of thinking that focuses on the dreams, outcomes, and visions of the individual. It is a process guided by an individual’s and family’s unique vision, likes, and dislikes. Person-Centered Planning focuses on the people and families rather than programs, and is a way to bring together everyone important to the person: family, friends, neighbors, support workers, and other professionals. Some questions to keep in mind when assessing the individual’s needs and wants for housing include:
- Where does the person want to live?
- What do they need to be happy?
- Can he or she live alone or is support needed?
- How much support does he or she need now?
- Are there any health and safety issues to consider?
- Will they need to live close to family as part of his or her support system?
- Would the individual like to live by him- or herself or with roommates?
- What are the characteristics of those who will best support the person?
- What kinds of housing options are available in the community?
- What is the neighborhood like? Is the residence accessible? Is it affordable? Is it near transportation?
After gathering this information, the results will need to be discussed and a plan developed in order to see how housing might fit into the picture. Keeping in mind the person’s vision, it is important to identify the main considerations for achieving a desirable lifestyle: What are the disabled person’s hopes and dreams? What level of independence does he or she desire and what supports will she or he need to achieve these goals? Some of the essential factors to consider are education, individualized training, successful employment, and an integrated life in the community. If the individual is unable to express their own opinions, those who know the person well, will have to consider their strengths and interests and make decisions for her or him. Because housing becomes an integral part of the vision and lifestyle plan, it is best to begin by asking the individual where he or she wants to live. If they have not had an opportunity to understand the differences in housing options, they may want to visit friends and families who live in different settings in the community.
Initially, the individual may not like the thought of leaving home. As with all children, moving out can be an exciting time, yet it can be a time of concern. Addressing the person’s joys and fears will be a necessary part of the process. Discussing fearful situations they might encounter being on his or her own can help to plan for social, safety, and economic concerns such as the ability to maintain the appropriate supports, separation from the family, vulnerability, social isolation, and the ability to be employed. It is important to examine what is making the individual fearful. Some fears may be realistic and others may not be. By networking with parents and friends, and actively seeking out information, some of these fears may be alleviated.
It is often difficult to find a place to live that is affordable, accessible, available, and where the person wants to live. Also, additional supports for young adults are often complicated and costly. Each individual is unique. There is no model for obtaining housing and support.
Individuals with disabilities now have a greater choice than ever in where they can live. However, eligibility requirements can be strict due to limited funding. The following factors can have an impact on their options:
- The individual’s resources — wages, trusts, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), county services, Medical Assistance, Home and Community-based waivers
- The family’s resources — financial commitment, time, energy, and networks
- Community resource options — availability of suitable housing, community development, accessible housing, low-income or Section 8 housing
- State resources — financial support, state housing agency and planners, state disability resources
Many new changes in the way a person with a disability can access housing and services have emerged and are being developed. See Kokua Network's Residential Options Bootcamp here.
Once parents and their son or daughter with a disability have determined the most desirable and appropriate housing situation, the next step is to explore how much can be spent on housing. Creating a list of expenses is crucial. It is essential to look at possible income, Medicaid, SSI, SSDI, work income, and family contributions. There are no simple answers when it comes to obtaining payment for housing. Eligibility criteria for the individual’s specific disability will become a determining factor for most funding.
Much is involved when planning housing for an individual with disabilities. It is important to plan early and plan ahead so that options don’t become limited and affect the long-term vision. Limited funding, availability of supports, services, and affordable housing will also have an affect on options.
A Parent’s Role in a CSE or IEP Meeting
As a parent, you play a vital role in your child's education. If you are a parent of a child with special needs, then one of the most important roles you play is as a member of the Committee of Special Education (CSE) or the committee that generates an Individualized Education Plan (IEP) each year. Prior to attending your first CSE/IEP meeting, someone from the school should explain to you your participation in the meeting and your rights as a parent. If this wasn't done, or you want a quick review, the following provides an outline of your role in a CSE/IEP meeting.
- Establish a rapport with staff prior to the CSE/IEP meeting. In most cases, the school district has the same desire as you do regarding your child. Everyone wants to see your child in an appropriate program, working towards meaningful goals, receiving any necessary related services (i.e. speech, OT, PT), and having positive interactions with the general population. By making the effort to know your child's teachers, aide and related service providers throughout the school year, it will take away some of the stress when you attend the CSE/IEP meeting. It also helps to take chocolate chip cookies which will boost everyone's mood!
- As a parent, you have the right to participate in the CSE/IEP meeting. Since the CSE/IEP meeting is in regards to your child, you have the right to attend the meeting. In fact, the school should make every effort to have you attend. Many states require that the meeting be held at a time that is mutual for both the parent and the school district. If an effort has been made to change a meeting date or time and it still isn’t possible for you to physically attend, you can request to attend by conference phone. This will enable you to still participate, voice your concerns and contribute to the discussion of setting goals and objectives.
- Mandated members are to be present at the CSE/IEP meeting. There is a list of mandated members that must be present at a CSE/IEP meeting, such as an administrator knowledgeable about special education, school psychologist, special education teacher, and general education teacher. If the chairperson of the CSE/IEP knows in advance that a mandated member cannot attend, you should be notified and given the opportunity to reschedule the meeting. If you are comfortable with having the meeting with partial members, that is your choice.
- Goals and objectives presented at the meeting are not cut in stone. Because there is so much information that needs to be discussed and decided upon at a CSE/IEP meeting, special education teachers and related service providers will often bring suggested goals and objectives with them to the meeting. This sometimes can feel a little intimidating to a parent. However, keep in mind that these are to be discussed, revised and agreed upon. If you feel that a goal isn't appropriate for your child and can explain why, then the committee needs to take your concern in consideration.
- You are entitled to bring an advocate with you. Some states require that the CSE/IEP have a "parent" member, another parent of a special needs child. The role of this team member is to listen to all of the information being presented, ask questions that might help you as the parent, and to give input on your child's program. If this is not mandated for your state, you're still entitled to bring an advocate with you. Your advocate might be another parent, someone who helps care for your child outside of school, or someone knowledgeable in the area of your child's disability. An advocate will ask for clarification regarding the information presented at the meeting and will often go to bat for you if you feel your child has a particular need that the committee isn't addressing.
- Request to visit a program before your child is placed in it. In some cases, the general education setting is not the most appropriate setting for a child with special needs. Ideally, if the CSE/IEP is going to recommend a different program, or possibly a different school, information should be provided to you in advance. You have a right to request to visit the program and meet the staff. If possible this should be done prior to your child's meeting so that a final decision can be made at the meeting.
Although certain components of your role as a member of the CSE/IEP vary from state-to-state, the ones mentioned above are common to most states. Lastly, thank the committee for their investment in your child's education. Just as you pour your heart into being a good parent, your child's teachers and related service providers care a lot about your child. A simple thank you can go a long way. But we'd like to know, how was your experience with your most recent CSE/IEP meeting?