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A PARENT'S GUIDE TO NEUROPSYCHOLOGICAL EVALUATIONS

By Gloria Cunningham,2014-07-05 11:41
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A PARENT'S GUIDE TO NEUROPSYCHOLOGICAL EVALUATIONS. BY LUCY BERRINGTON. WHAT KEY IDEAS AND ISSUES SHOULD PARENTS KEEP IN MIND WHEN CHOOSING A ...

    A Parent’s Guide to Neuropsychological Evaluations

    by Lucy Berrington

    What key ideas and issues should parents keep in mind when choosing a neuropsychologistand how

    should they use the neuropsychological report to get the best possible services for their child or teen?

    The fall 2009 issue of the AANE Journal included the article “Guidelines for Neuropsychological

    Evaluations for Children and Teens: Neuropsychological, Educational, & Legal Perspectives,” based on

    interviews with many trusted professionals in the AANE community, who generously shared their expe-rience. This guide collects, summarizes, and adds to the most important tips for parents that were hig-hlighted in that article.

Selecting a neuropsychologist

    When choosing a neuropsychologist, aim to find someone you can work with over the long term, pre-ferably all the way through your child’s schooling. The better a neuropsychologist knows your child, the more helpful and persuasive the reports will be to parents, educators, and (if your case ever becomes liti-gious) hearing officers.

    Contact AANE for recommendations of neuropsychologists known to work effectively with children and teens who have Asperger Syndrome (AS) and other closely related autism spectrum conditions (High-Functioning Autism, PDD-NOS, or Nonverbal Learning Disorder).

    Note: some clinics and hospitals offer multidisciplinary team evaluations. Their reports are collabora-tive efforts involving a neuropsychologist, a speech and language pathologist, an occupational therapist, a special education teacher and so on. If you go this route, make sure all evaluators are willing to testify in any legal process that may arise. Some legal experts argue it is better to assemble your testing team from different practices. If evaluators are all from one practice, they may be assumed to be more likely to agree with each other; several independent evaluators reaching similar conclusions may carry more weight. Al-so, some neuropsychologists warn that multi-disciplinary reports may be fragmentary and not well-integrated.

    In your initial contact with a neuropsychologist you are considering hiring, ask questions such as the following. (Note that some of the services listed below might entail an additional fee.)

    ; Please tell me about your training and professional qualifications. (Look for a licensed psychologist

    with a full-time post-doctoral fellowship of one to two years in pediatric neuropsychology.) ; What age patients do you serve in your practice? (A practice limited to children and teens offers more

    relevant expertise and wider experience.)

    ; Do you have a special interest or particular experience working with children with Asperger Syn-

    drome and other autism spectrum disorders?

    ; Have you had any prior experience with my school district or current private school (or one the child

    may attend in future)?

    ; Can you guarantee the report will be available by our deadlinefour weeks before our team meeting

    on __________ (fill in the date)? (Some school districts take the position that they are entitled to ten

    school days to consider an independent evaluation report. Parents also need time to review it and re-

    quest changes if there are inaccuracies or areas of disagreement.)

    ; How will you gather information about my child from educators? Will you send out questionnaires?

    Will you interview educators? Will feedback from educators influence what tests you administer or

    what issues you address?

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    ; If requested, can your report incorporate your personal observations of the child in a setting other than

    your office, such as a home, school, or community setting? (This usually entails an additional fee but

    can be very valuable to educators, mediators, and hearing officers.)

    ; Do your reports include educational recommendations? (A report without recommendations is incom-

    plete. Avoid working with a neuropsychologist who would refer you to an educational consultant for

    this purpose.)

    ; Are your recommendations customized to the child’s individual profile, or based more generically on

    the diagnosis? (Look for the former.)

    ; Does your evaluation cover social skills, executive functioning, anxiety and other emotional issues,

    vulnerability to bullying and teasing, and readiness for the transition to independence? ; Do you routinely, or could you, attend a team meeting yourself (as opposed to referring me/us to an

    educational consultant)? If this is impossible, can the evaluator or an associate be available by phone

    (e.g., to explain the educational recommendations to the child’s school team)?

    ; If the educators at my child’s school should question or reject your findings and recommendations,

    would you be willing and able to work with educational advocates or lawyers and/or attend hearings?

    o This is especially important if you think the case might become adversarial. Even if you are not

    expecting legal action, bear in mind that it might become necessary in the future.

    o Before working with a neuropsychologist, you can check the Bureau of Special Education Appeals

    website (http://www.doe.mass.edu/bsea/decisions.html). Search for the name of the neuropsychol-

    ogist, see if he or she has testified before, and read the cases. Did the hearing officer(s) give

    weight to this person’s testimony? If the neuropsychologist has testified several times and hasn’t

    been found credible, look for someone else. Note, however, that many competent neuropsycholo-

    gists have not given evidence at hearings. (This site is also useful for to researching specific issues;

    e.g., eligibility for year round programming that includes summer services.)

At the intake meeting

    ; Prior to administering any tests to your child, the neuropsychologist is likely to ask you to provide in-

    formation about your child through written questionnaires and documents (e.g. past testing, school

    records, or IEPs) and a face-to-face interview. At this meeting, be as specific as you can in articulating

    your concerns. For example, in what ways do your child’s social problems present?

    ; Try to articulate what you see as the goal of this evaluation. For example, you may want the evalua-

    tion to help you and the educators identify and understand your child’s learning style or social strug-

    gles, or to assist with school placement decisions.

    ; Ask the neuropsychologist to consider issues that might not yet be dominant in your child but which

    are associated with his or her functioning and apparent deficits. Services must be put in place even

    though some difficulties (such as anxiety) aren’t yet very obvious, because without support they will

    probably become more obvious, typically from late elementary school years onwards. (If there are no

    current needs in a particular area, the district isn’t legally required to provide services.) Also ask the

    neuropsychologist to articulate in the report how the transition to independence can be built into the

    goals of the IEP from a young age, leading to stronger transition skills through high school and

    beyond.

    ; The intake meeting provides a good opportunity for further discussion regarding the structure and con-

    tent of the forthcoming report, e.g.:

    o Will the neuropsychologist integrate findings from previous evaluations with current findings?

    o Will the report include a summary or concluding statement that ties together all the information

    and paints a clear picture of the child’s functioning?

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    o Will the educational recommendations be collected in one section of the report and delivered in

    teacher-friendly language?

    o Will there be a statement of risk to the student, based on his or her neuropsychological profile, if

    the recommendations are not implemented?

    o Will the neuropsychologist comment on the appropriateness of the current or proposed IEP in the

    recommendations?

    o Will the recommendations specify the nature, frequency, duration and setting of service delivery,

    and the qualifications of the provider?

    o Will the recommendations be presented in terms of what the child requires in order to make effec-

    tive progress (as opposed to what would be nice or ideal for that child, a concept that has no legal

    weight)?

    o Will the report contain recommendations about how parents and caregivers can best support the

    child at home?

    o Will the neuropsychologist refer parents to specific service providers (e.g. a private OT)?

At the feedback meeting

    ; It is good practice for the neuropsychologist to meet with parents to explain his or her findings. As

    you listen, ask yourself whether the report tallies with your understanding of your child. If not, discuss

    these areas of difference with the neuropsychologist, trying to understand what the evaluation shows

    and how the neuropsychologist is interpreting the information.

    ; Do not reject a diagnosis out of hand. Even though you may experience some pain or struggle in ac-

    cepting a label for your child, the diagnosis can facilitate access to services that will help the child

    learn and grow to his or her full potential. If the report contains a diagnosis that is different from oth-

    ers your child has received in the past, ask the neuropsychologist to explain the criteria or reasons for

    it. Consider whether different terms are being applied to the same condition, or whether there is a

    substantive dispute about the nature of the condition.

    ; Make sure you understand the reportespecially its recommendations.

    o Do the recommendations address all your child’s key needs, at their actual level of severity?

    o Ask for concrete examples: e.g. what kind of intervention or support would this recommendation

    translate into in the classroom? How would I present this to my child’s educational team?

    o If fully and well implemented, would these recommendations, taken altogether, really meet your

    child’s individual needs?

    ; Use AANE’s “Frame for Preparing for IEP Meetings”

    (www.aane.org/asperger_resources/parents_toolbox.html). The frame is designed to help families or-

    ganize information, from the meeting with the neuropsychologist to the team meeting at school. It will

    help identify and track the most important issues, ensuring that they are discussed in the team meeting

    and incorporated into the IEP. The use of this frame is taught in the parent workshop “Advocating for

    Your Child with AS in Public Schools” or “Advocating for Your Teen with AS in Public Schools.”

    (See www.aane.org or contact Children’s Services or Teen Services for workshop dates.)

    ; If your school lacks expertise in AS and related autism spectrum conditions, ask whether the neuro-

    psychologist can supply attachments that will help educators understand relevant strategies and expla-

    nations. (Also see the educational articles on the AANE web site, or consult AANE staff.) ; Make sure the tone of the report is not argumentative and does not seem to have an ax to grind. An

    objective neuropsychological report carries more weight.

At the team meeting

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    ; Make sure any independent neuropsychological report is available in advance (preferably about three

    weeks) to the special educator or administrator who will be facilitating the team meeting. ; You do not need to have a team meeting already scheduled in order to have an independent evaluation

    considered. The school is obligated by law to review an independent report and consider its recom-

    mendations at a team meeting within ten school days of receiving it.

    ; If the testing has been done in district, always make a written request that the testing results be availa-

    ble to you at least 48 hours before a meeting, so that you will have time to read and understand it. Do

    this as part of your initial request to evaluate. Without making this request you have no legal grounds

    to receive the report in advance.

    ; If there is no one on the team equipped to translate the report to the teachers, this role falls to the par-

    ents. Parents must understand the recommendations and how they will be put into practice in the

    classroom.

    ; Consider hiring your independent neuropsychologistthe person who did the testing and wrote the

    report—to attend the team meeting. When the neuropsychologist is present to answer educators’ ques-

    tions (and to listen respectfully to their opinions and concerns), educators are less likely to dispute his

    or her findings, or misinterpret the recommendations. The neuropsychologist’s statements and res-

    ponses will almost certainly carry more weight than a parent’s (however articulate and knowledgeable

    the parents are).

Will a school system pay for a neuropsychological evaluation?

    Generally, neuropsychological evaluations, like any other evaluation, must be requested of the district first. Your child will be tested by a professional of the school’s choice. This could be someone on their

    payroll, usually a school psychologist, or with whom they have a contract.

    If you are dissatisfied with the resulting report, or if you are requesting an evaluation in an area not as-sessed by the district, you may request in writing to have an Independent Educational Evaluation (a second opinion). The funding for independent testing is generally limited to “rate-setting rates.” Most

    neuropsychologists in private practice will not take those rates, so the independent evaluation will proba-bly take place at a hospital. If you anticipate being in this situation, make the appointment for the evalua-tion as soon as possible. Hospitals often have long waiting periods. You may need to call months in ad-vance to ensure that the hospital’s report will be available in time for a team meeting. It is far easier to

    make that appointment and cancel if it proves unnecessary than to get an appointment at short notice. A delay in testing will probably mean a delay in getting the services your child needs.

    If your private insurance will fund the evaluation you may have more options. Some families go for an independent evaluation, paid out of pocket or though family health insurance, so that they can choose the neuropsychologist without restriction. Some school systems will agree in advance to accept an inde-pendent neuropsychologist’s report in lieu of the district’s performing its own psychological evaluation. If

    the district will not agree to this, the parents may still proceed with an independent evaluation, but in most cases will also need to consent to the district’s performing its own psychological evaluation.

    School systems are obligated to review and consider independent reports within ten school days of re-ceiving them, but are not legally bound by them as they are to the results of the district’s own testing.

    Some school systems might consider parents’ choice of independent testing as demonstrating a lack of cooperation with the school system and attempt to use it against parents at hearings. In Massachusetts, special education regulations provide, however, that parents “may obtain an independent education evalu-

    ation at private expense at any time.”

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Working with the school over time to get the recommendations implemented

    ; All communications (such as requests for evaluations) should be submitted in writing and dated. ; Be aware of legal timeframes under federal and state law regarding testing and follow-up. See

    http://www.fcsn.org/parentguide/pgintro.html or http://www.wrightslaw.com.

    ; Excellent and frequent communication among educators and parents is key to ensuring implementa-

    tion. Ideally a communication plan includes: a monthly face-to-face team meeting, a weekly check-in

    (by journal, email or phonewhatever will work for the designated educator), and as-

    needed/emergency communication (usually by phone or email) to make educators or parents aware of

    time-sensitive issues. See:

    http://www.aane.org/asperger_resources/articles/education/educational_interventions_asperger.html.

    ; Consider “enriching the team” (as Terri McLaughlin of the Federation for Children with Special

    Needs puts it). That is, bring in people with additional information and fresh viewpoints, e.g.: other

    people in the school who see the child in different settings, outside educational consultants with spe-

    cial expertise (such as AS, executive functioning, or social pragmatics), or an educational advocate. ; If you feel your advocacy is ineffective, contact the Federation for Children with Special Needs for

    expert support by phone, or the names of educational advocates who can assist you in person or at a

    team meeting, at your expense. (The Federation trains advocates who during their internships work

    with families pro bono, but their availability is limited.) Or contact AANE for information and train-

    ing.

    ; At age 14 (in Massachusetts), a transition planning meeting should be held. This is a special meeting

    of the educational team devoted to deciding what services will be delivered during the high school

    years (beginning at age 15) to help the student achieve a realistic level of independence following high

    school graduation (or aging out of eligibility for Department of Education services). A neuropsych re-

    port evaluating a teen’s current transition readiness provides a valuable foundation for this discussion

    and planning.

Beyond high school

    ; Children who are eligible for special education receive support either until they graduate with a state-

    standard high school diploma or turn 22 (whichever comes sooner). In Massachusetts, graduation now

    requires three things: earning credits mandated by the local educational authority, passing MCAS, and

    getting meaningful and substantial transition services in the high school years. See

    http://www.fcsn.org/pti/topics/transition/index.html and

    http://www.massadvocates.org/uploads/Uy/ri/Uyri2nnseo44kHuhX_wRlw/Implementation-Alert-

    Parent--FINAL-12-22-08-_2_.pdf.

    ; In the post-secondary setting, the neuropsych report is used to help define the student’s needs and as-

    sess relevant accommodations in colleges. Colleges are obligated to provide reasonable accommoda-

    tions, but they can define reasonable, so provision varies. The level of support is likely to be much

    lower than in high school. Students in higher education must request accommodations themselves and

    provide documentation of their disability. (The student’s IEP is not relevant in college.)

Other helpful organizations

The Federation for Children with Special Needs, www.fcsn.org

    Mass Advocates for Children, www.massadvocates.org

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    AANE thanks the professionals who generously shared their time and expertise for this guide and the original article. Call AANE staff for referrals to these or other professionals. Joseph Moldover, Psy.D.; Sangeeta Dey, Psy.D.; Ann Helmus, Ph.D.; Lori Hodgins Brazell, M.S. Ed.; Lynne Mitchell, MSW; Natalie Labouchere, M.S., Ed.; Jean Stern, M.Ed.; Robin Lurie-Meyerkopf, M.Ed.; Terri McLaughlin, Federation for Children with Special Needs; Joan Toussaint, Advocate; Atty. Eileen Hagerty, Kotin Crabtree & Strong; Atty. Tim Sindelar, Hilton, Sindelar & Hahn; Atty. Julia Lan-dau, Massachusetts Advocates for Children; Atty. Beth Simon, Massachusetts Advocates for Children and private practice; Atty. Mary Ellen Sowyrda, Murphy, Hesse, Toomey & Lehane.

    Lucy Berrington is a writer from Newton, MA. Her journalism and fiction has been published in many newspapers, magazines and journals, including the Globe, the Herald, the Guardian, the London Times, and the New England Review. You can read her article about the movie Adam at

    http://www.aane.org/upcoming_events/Adam_Article.html.

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