Education and the aHUS Patient
By Linda Burke, M.S.Ed.
Each autumn as the school bell rings in the fresh start to a new school year, children and adult learners diagnosed with aHUS may be well prepared in terms of school supplies and a great attitude toward a new year of learning. Consider another route toward helping to optimize their school success. Do school age children have an I.H.P. in place, with an I.E.P and a 504 plan? No, it’s not alphabet soup on the school lunch menu but rather educational jargon asking if the child’s public school staff has met with the parents, determined the child’s needs and abilities through specialized testing and observations, and devised a plan to help the aHUS patient maximize this year’s school experience.
Are you an adult aHUS patient at college or involved with learning opportunities provided by your workplace? Adults with a chronic illness often deal with learning disabilities that can affect workplace issues, so read on to discover education issues and check out how the links here can provide a starting point to explore complexities that affect adult aHUS patients.
The P.E.T. Referral - Collaborating with Public School Staff on an I.E.P.
In an ideal world all school age children would have an I.E.P., or Individualized Education Plan, that not only noted their strengths and weaknesses in various academic areas but also indicated insight into how teachers could maximize the school experience for that child across the board. Imagine the helpful framework available for teachers to begin the school year knowing the best options to ‘get through’ to a particular student and what teaching techniques and methods were less likely to be meaningful for that individual. Invaluable information, really – not only saving time and effort for all parties but serving to bolster a positive learning attitude and lessen risks of frustration, too. Such a pity that the effort , time, and expense involved in creating an I.E.P. means that not every child has such a personalized learning profile to aid their teachers’ endeavors to build the best school program for each child.
What should parents do if their school-age child has been diagnosed with aHUS? Call or visit your child’s public school to request a P.E.T., or Pupil Evaluation Team meeting. The team centers around input from you and your child’s classroom teacher(s), and while aHUS issues mean input from the school nurse is vital, P.E.T. membership often fluctuates to include a need-based range of specialists such as a speech or physical therapist, a special education coordinator, and the school guidance counselor . The P.E.T. referral process begins when a concerned parent, teacher, or specialist notes the child might be having difficulty in the classroom. Generally the classroom teacher fills in the P.E.T. referral form, which requires identification of specific concerns (in general learning issues or academic areas, but also regarding emotional or social concerns) and that outline issues that impact your child’s school experience. Gathering data regarding the student’s progress or academic problems may entail interviews (with parents or student), forms or surveys (completed by parents, teachers, or primary physician or specialist), observation of the student, and analysis of the student’s performance ( tests, classwork, work completion, behavior, homework samples, etc.).
Parents are often given a form to fill in, which allows them to note specifics with general learning issues or particular academic areas, as well as emotional or social concerns that might impact your child’s school experience. Perhaps it’s as simple as difficulties in a certain subject area, but often it’s much more complex such as short term memory issues or difficulties completing assignments/curriculum set for their grade level. If school is in session, it’s likely that the child’s teacher would welcome a call or email to alert them to parental concern about your child’s past learning history. If your child’s public school has a guidance counselor and a school nurse, those staff people can be wonderful contact points for you. Use the biggest tool in any aHUS parent’s repertoire – be proactive!
Parents are a vital part of your child’s educational team, and the P.E.T process recognizes the valuable input they have about the child’s learning styles, needs, and abilities. Once the P.E.T. referral form is completed and returned to the school’s front office (or other designated place), legal timeframes mandate that the school explore these concerns. Parents will be invited to attend a formal P.E.T. meeting with their child’s teacher(s), school counselor, special services coordinators, school nurse and other appropriate school staff to discuss comments on the P.E.T. form.
This pool of varied information helps school personnel determine the next step. Ideally, strategies specific to the student have already be utilized to help the child become more successful in school so the P.E.T., collaborating among school staff and parents, meets to discuss the data. This P.E.T. meeting might call for specialized testing in particular areas of concern that remain a bit unclear, since factual information often drives access to programs and services in the public school system. At that point, the parent participant in the P.E.T. meeting is requested to approve any testing deemed necessary to complete the child’s learning profile, and the child would be tested for a specific learning disability or other impairment to help determine if any educational modifications are necessary or if the child qualifies for special services (such as OT, speech therapy, etc.). Note that even if the P.E.T.’s review indicates the presence of a disability, this doesn't automatically guarantee that a child will receive services. To be eligible, the disability must affect functioning at school.
Together, as indicated by the name’s designation of ‘Team’, parents and school staff will ponder the child’s issues and decide what further testing might be needed to clarify matters with measurable, factual tests of abilities (such as a comprehensive academic overview, a Test of Written Language, reading surveys, speech or PT evaluations, etc.). Parents will be asked to formally sign a document noting their agreement to have their child tested in the specific, agreed-upon areas. After a specialist privately meets with your child to conduct these particular tests (during the student’s school day, with no cost to families), parents will be notified of another P.E.T. to review the findings.
At this second meeting of the P.E.T. team, expect that specialists will review any testing and how the information was gathered. School staff will explain the the data to parents and to their P.E.T. associates, indicating how these findings may impact the child’s school experience. Within a collaborative environment that should encourage questions, school staff should offer their opinions about how the data suggests specific courses of action that that teachers and parents can utilize to help maximize the learning environment and structure learning for that child. Sometimes the P.E.T. merely suggests alternative teaching strategies within the classroom but more often discussion centers on changes in programming likely to benefit the student. As a full participant in the P.E.T process for their child, parents should remember that aHUS health issues (usually through an IHP or Individual Health Plan) should be a component of the P.E.T’s discussion process for any aHUS patient and included in the documents parent’s sign noting their agreement for special services or modifications.
Note: *Public schools are bound by this legislation, but private schools fall under a different regulatory set of expectations. Contact your particular private school directly to ascertain what federal and/or state regulations apply to them.
*Federal regulations offer educational opportunities for a wider age range than you might expect – ages 3 to 21, in most cases. Adult aHUS patients should check the Individuals with Disabilities Education Act (http://nichcy.org/laws/idea ) and other links below regarding IDEA, since regulatory issues can impact aHUS concerns in the workplace and in post-secondary educational opportunities
Why the learning disability info? Aren't we discussing atypical HUS issues?
Patients with atypical HUS can have a varied and complex set of symptoms with disease involvement that are not merely limited to the kidneys. Multisystem complications surrounding aHUS activity can involve neurological issues (FMI on multi-organ involvement, see http://ahussource.com/hcp/clinical-complications). Learning disabilities (LD) are neurological disorders that can make it difficult to acquire certain academic and social skills, not just differences or difficulties with learning. . Not just differences or difficulties with learning, learning disabilities affect the brain's ability to receive, process, store, and respond to information. Learning about LD issues may help parents maximize learning opportunities for their child, but also holds potential for adult rare disease patients to improve their own success in learning and life. (FMI see http://www.ncld.org/ld-basics/ld-explained)
Adults with learning disabilities can experience personal, social, and emotional difficulties that may affect their ability to be successful throughout their lifespan. After high school graduation, choices abound in areas of college or other educational opportunities, the workplace, and options such as the military. Since learning disabilities are neurological disorders that can impact a person's ability to function in the workplace or at school, aHUS patients with LD issues can face stumbling blocks to successfully acquire certain academic, work, and social skills due to the brain's ability to receive, process, store, and respond to information
For Additional Information about Learning Disabilities, visit these Resources:
Interactive LD Checklist: From Preschool Age (to be filled in by adult) to High School and Adult Surveys (Note: If you or your loved one displays these signs, seek additional information or help. http://www.ncld.org/checklists-a-more/checklists-worksheets-a-forms/ld-checklist-of-signs-and-symptoms
Learning Disabilities in Adulthood: See http://www.ncld.org/ld-basics/ld-explained/ld-across-the-lifespan/learning-disabilities-in-adulthood-the-struggle-continues
Learning Disabilites in the Workplace: See http://www.ncld.org/college-aamp-work
Post-High School Options and LD Issues: Seehttp://www.ncld.org:80/college-aamp-work/post-high-school-options
Who is an “individual with a disability”, and how might aHUS be an “impairment” considered under the Section 504 definition?
As defined by federal law: “An individual with a disability means any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” [34 C.F.R. §104.3(j)(1)]. Certainly the diagnosis of a life-threatening and chronic rare disease such a aHUS falls within that legal definition!
An impairment as used in Section 504 may include any disability, long-term illness, or various disorder that “substantially” reduces or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. For aHUS patients obvious limitations may be an access point for pheresis or dialysis, but recognize that many aHUS patients are subjected daily to other substantial limitations such as the need to reduce viral/bacteria exposure, the need to monitor hydration, adherence to medication protocols, and other aspects particular to that patient (dietary or fluid restrictions, vision or balance issues, fine or gross motor difficulties, seizure activity, cardiac concerns, transplant issues, etc.). Many aHUS patients have issues that fall within the parameters of the legal definition; therefore, they or their parents can request a review of educational options through the P.E.T. process as an individual with a disability who has a physical impairment that substantially limits one or more major life activities. [“It should be emphasized that a physical or mental impairment does not constitute a disability for purposes of Section 504 unless its severity is such that it results in a substantial limitation of one or more major life activities” (Appendix A to Part 104, #3)].
Many students in public schools have conditions or disorders that are not readily apparent to others (such as aHUS children) while other students have conditions with more obvious and easily identified issues such as specific learning disabilities or medical conditions such as diabetes, epilepsy and allergies. A diagnosis of atypical HUS may yield conditions that are not visibly apparent but can be medical complications of this chronic illness, such as heart disease, fine motor difficulties, or vision issues. However, if they substantially limit the child’s ability to receive an appropriate education as defined by Section 504, the aHUS patient may be considered to have an “impairment” under Section 504 standards. As a result these students, regardless of their intelligence, will be unable to fully demonstrate their ability or attain educational benefits equal to that of non-disabled students (The Civil Rights of Students with Hidden Disabilities under Section 504 of the Rehabilitation Act of 1973—Pamphlet).
What’s a 504 plan?
The 504 plan seeks to remove any barriers that exist for children with disabilities to safely persue and freely participate in the same opportunities as their peers. Meant to ensure academic success and full access throughout the learning environment, a 504 plan makes the most effective accommodations for the child’s specific circumstances (with compliance monitored through Civil Rights laws). Through the P.E.T. process, the '504 plan' can be implemented for any student with a physical or emotional disability, or recovering from chemical dependency problems, or who has an impairment that restricts one or more major life activities. In the case of an aHUS patient, medical issues affecting "major life activities" can range from easily identifiable concerns such as central lines and dialysis fistulas to less obvious concerns such as developmental delays and impaired immune responses.
The aHUS patient may experience a combination of minor or severe impairments that affect major life activities to include difficulties with walking, seeing, hearing, speaking, breathing, working, caring for personal needs, performing daily tasks and - of course - learning. The process for a student to be identified for a '504 Plan' is quite basic: a referral by school staff or the parent (or other interested adult), a 504 plan meeting is held, information is gathered, a plan for the student is discussed and developed, and a review date is set. (See http://www.theparentaladvocate.com/what-is-a-504-plan.htm )
Expect to collaborate as part of the team to determine needs and the plan to accommodate those identified, specific needs. While participants in the 504 process may include the student, and must involve the parent or guardian as well as the classroom teacher, expect the inclusion of a range of professionals. Potential participants to help form a successful 504 plan may include the school counselor, a special services coordinator, the school principal, and pertinent support staff (perhaps speech, OT, or PT staff). Since aHUS is an ultra-rare disease that is chronic and prone to complex underlying health issues, make certain that the school or district nurse is present at any meeting where plans or programs are discussed or considered. (The National Association of School Nurses online network is a wonderful interactive source of general information for school nurses, viewable at http://www.nasn.org/MemberCenter/DiscussionLists/SCHLRNL .)
For a great article that spells out an overview of the 504 plan and I.E.P. in clear but brief terms, check out this link by the Executive Director of Kentucky Education Rights, Dennie Baldwin http://www.edrights.com/iep_504.htm
FMI about 504 plans: http://www.ncld.org/at-school/your-childs-rights/iep-aamp-504-plan
IDEA-the Individuals with Disabilities Education Act
IDEA was originally enacted by Congress in 1975 to ensure that children with disabilities have the opportunity to receive a free appropriate public education, just like other children. Recognizing that, in many cases, supports must be provided to a child with a disability to enable him or her to be educated in the general education environment, including participating in extracurricular and nonacademic activities and settings, IDEA mandates what the law calls 'supplementary aids and services'.
These aids and services often play in a vital role in supporting the education of individual children with disabilities in the regular educational environment, providing accommodations and modifications to studies, teaching methods, or how the child’s progress is measured. While important "supplementary aids and services' include direct services and supports to the child, don't forget other aspects such as support and training for staff who work with that child. (The I.E.P. falls under IDEA and is more concerned with providing educational services, supported by required documentation of measurable growth, as opposed to the 504 plan).
Since its history, IDEA has included a strong preference for children with disabilities to be educated alongside their peers without disabilities, to the maximum extent appropriate. That’s why a student’s placement in the general education classroom is the first option the Pupil Evaluation Team (P.E.T.) will consider (71 Fed. Reg. 46588). Expect these and similar questions to be the focus of any placement discussions at a P.E.T. meeting. Can the child be educated satisfactorily in the general education classroom? What aids, services, and supports does the child need to make this possible? Naturally, the P.E.T. will consider what information is already available for that child (schoolwide achievement tests, class tests for reading/writing/etc. and any state testing normally done by grade levels) and what further testing should be done to ensure that the P.E.T. has specific, factual data that gives a clear view of the child's abilities and needs.
IDEA requires that public schools review the child’s placement annually, use IEP recommendations to implement educational programs and services, and meet several requirements. Additional requirements in the law include such stipulations as:
FMI about IDEA see http://nichcy.org/laws/idea
FMI about placement, see http://nichcy.org/schoolage/placement/overview
Note: For infants and toddlers, Part C of the Individuals with Disabilities Act (IDEA) ensures services to small children with developmental delays or who have been diagnosed with a physical conditions such as aHUS that might be impacted with a probability of developmental delays. (FMI see Part C of IDEA at http://idea.ed.gov/ )
Of particular interest to parents of young aHUS patients, these Early intervention services (EIS), are concerned with meeting the needs of infants and toddlers in the skill areas that babies typically develop during the first three years of life: physical (reaching, rolling, crawling, and walking); cognitive (thinking, learning, solving problems); communication (talking, listening, understanding); social/emotional (playing, feeling secure and happy); or, self-help (eating, dressing). Early intervention services will be essential in helping the child grow and develop, since aHUS children sometimes experience developmental delays due to their illness, surgury, or complications of their rare disease. (For more information on EIS, see http://nichcy.org/babies/overview )
FAPE in the LRE: (Free Appropriate Public Education ) in the (Least Restrictive Environment)
Under IDEA, schools are required to educate all children with disabilities When you encounter the term FAPE in edu-speak, a "Free Appropriate Public Education" refers to special education and related services that are provided at public expense, under public supervision and direction, and without charge. This mandate is part of IDEA and requires that school districts provide access to general education and specialized educational services. Available to individuals from a aged 3 to 22, FAPE includes an appropriate preschool, elementary school, or secondary school education that meets state and federal regulatory requirements in compliance with an Individual Education Plan (I.E.P.)
The Least Restrictive Environment (LRE) For more details on this topic, see http://nichcy.org/schoolage/placement/placement-lre
All students in special education must be educated with their peers to the greatest extent possible, while still providing FAPE, since students with disabilities tend to have more success in an educational setting where they have interaction or contact with the children in their typical peer group.. The LRE requirement was intended to prevent unnecessary segregation of students with disabilities but if their behavior is not appropriate within that LRE, restrictions Behavior Intervention Plan (BIP) would address concerns surrounding the child's placement. In some cases a BSP (Behavior Support Plan) would be used to maintain appropriate behavior within a least restrictive environment, but. this plan would have to be merged with the IEP and implemented by trained staff to ensure a successful learning environment
Think of the least restrictive environment (LRE) as ranging on a spectrum from from full inclusion with children of similar age ( where inclusion is education's 'gold standard', considered current best practice) to home instruction mandated by the child's circumstances. The goal is to provide a free and appropriate public education (FAPE) within the least restrictive environment (or LRE) in which the child can make progress, meant to ensure that children are not unnecessarily removed from the regular classroom or isolated from other non-disabled children of their age.
(IDEA) requires that all children with disabilities must be educated in the least restrictive environment (LRE) that is appropriate for them. The spirit of this requirement is to ensure that children are not unnecessarily removed from the regular classroom or isolated from other non-disabled children of their age. LRE decisions are made based on children's learning needs and vary from child to child. IDEA also requires that schools provide a full continuum of services ranging from regular classrooms with support to special classes, and special school placements as needed.
For more details on FAPE, see http://www.ncld.org/at-school/your-childs-rights/laws-protecting-students/what-is-fape-and-what-can-it-mean-to-my-child
For more details on LRE, see http://nichcy.org/schoolage/placement/placement-lre
Additional Links: About Atypical Hemolytic Uremic Syndrome
An excellent overview of aHUS: http://ghr.nlm.nih.gov/condition/atypical-hemolytic-uremic-syndrome
Another suggested summary: http://www.nlm.nih.gov/medlineplus/ency/article/000510.htm
Details regarding aHUS, see 'aHUS Bootcamp': http://atypicalhus.ning.com/page/a-parents-perspective-ahus
Complications of aHUS Activity - Potential Neurological Involvement
Limited to my role as a parent of children diagnosed with aHUS, I can merely point out what medical professionals and researchers indicate for new information about disease activity in aHUS patients. The diagram regarding multi-organ complications of aHUS, available at www.ahussource.com, indicates that 48% of aHUS patients experience neurological symptoms. In a blog noting the potential for aHUS activity to impact multiple organs, I reported on a collection of data compiled by Alexion (makers of Soliris) and viewable at http://atypicalhus.ning.com/profiles/blogs/ahus-complications-potential-impact-for-multiple-organs.
Cited were 12 renowned atypical HUS researchers from across the globe (Dr. Noris, Dr. Loirat, and Dr. Goodship among other noted aHUS researchers)
http://ahussource.com/hcp/clinical-complications. 3 of the 12 references were specific to neurological involvement, and the graphic outlines symptoms such as confusion, stroke, seizures, and encephalopathy (global brain disfunction that may be caused by a variety of different illnesses).
The Office of Special Education Programs (OSEP) is dedicated to improving results for infants, toddlers, children and youth with disabilities ages birth through 21 by providing leadership and financial support to assist states and local districts. http://www2.ed.gov/about/offices/list/osers/osep/index.html?src=mr
Serving the nation as a central source for information on disabilities, the National Dissemination Center for Children with Disabilities provides a wealth of information and resources for early intervention of babies and toddlers as well as children from ages 3 to 22 years old. Check the 'State Resource Sheets' that connect parents with the disability agencies and organizations for their particular state.
U.S. Department of Education (Office of Special Education Programs) – IDEA: Individuals with Disabilities Education Act This site was created to provide a "one-stop shop" for resources related to IDEA and its implementing regulations, with access to cross-referenced content from other laws (e.g., the No Child Left Behind Act (NCLB) and the Family Education Rights and Privacy Act (FERPA), etc.). Among a variety of other information sources, you’ll find video clips on selected topics, links to OSEP's Technical Assistance and Dissemination (TA&D) Network and a Q&A Corner where you can submit questions.
The National Center for Learning Disabilities' (NCLD) focuses fostering success for all individuals with learning disabilities in school, at work, and in life. Below are some excellent resources regarding the impact of learning disabilities on all ages.
Learning Disability Concerns, at school (or in the workplace)? The Interactive LD Checklist can be utilized for preschool age through high school and with specialized adult surveys
Learning Disabilities in Adulthood:
Learning Disabilities in the Workplace:
Post-High School Options and Learning Disability Issues:
Information regarding the Americans with Disabilities Act, with links to associated topics of interest (such as Employment, Education, and Healthcare) as well as an overview of rights/laws.
Child Development – A Developmental Milestone Chart. This developmental milestones chart is includes normal expectations of developmental milestones for children at birth through adolescence, in terms of physical, cognitive, and social development. Developed by The Institute for Human Services for the Ohio Child Welfare Training Program, its content was adapted from “The Field Guide to Child Welfare Volume III: Child Development and Child Welfare” by Judith S. Rycus, Ph.D., and Ronald C. Hughes, Ph.D. (Child Welfare League of America Press 1998). Download the pdf at http://uppua.org/pdfs/CW%20II%20Handouts/Effects%20of%20Abuse%20and%20Neglect%20on%20Child%20Development/Development_Chart_for_Booklet.pdf
Sensory Processing Disorder Checklist. Many children with special health needs may have sensory issues (muscle coordination or overly/under-sensitive to certain sounds, smells, tastes, visual input) that affect functioning in both home and school environments. This simple checklist for parents is a good starting point to begin discussion with physicians, therapists, and school personnel. From the Book: The Out-of-Sync Child by Carol S. Kranowitz (1995)
Grahamtastics Connection: A non-profit program that provides laptops and Internet access to connect chronically ill children to their world, particularly vital for those missing school due to hospitalization or treatment schedules. http://www.grahamtastic.org
The National Association of School Nurses (NASN) Parents of children diagnosed with a rare disease often rely on the school nurse as a vital member of their child's care team. Enlist the aid of the school nurse for assistance with such areas as creating an IHP (individualized Heath Plan) or 504 plan (for children with special health care needs). School nurses are positioned to offer valuable insight into how chronic illness might impact the P.E.T. (Pupil Evaluation Team) process. The National Association of School Nurses offers SCHLRN-L, an online discussion group that promotes networking among school nurses to share information, insights, and resources http://www.nasn.org/MemberCenter/DiscussionLists/SCHLRNL .
Members of the National Association of School Nurses (NASN) recognize that there are students whose healthcare needs affect or have the potential to affect safe and optimal school attendance and academic performance. The professional school nurse can create an Individualized Healthcare Plan (IHP), in collaboration with the student, family, educators, and healthcare care providers. For more about the role of an IHP, visit http://nasnupgrade.winxweb.com/PolicyAdvocacy/PositionPapersandReports/NASNPositionStatementsFullView/tabid/462/ArticleId/32/Individualized-Healthcare-Plans-IHP-Revised-2008
Education and the aHUS Patient
Author: Linda Burke, MS Ed
Parent of Two Children diagnosed with Atypical HUS
Background: K-8 Classroom Teacher (Grades 7 & 8, Math and Science)
Licensed in Maine: “K-8 Classroom Teacher” and also “School Administration”
Questions or Comments? Email: Linda@atypicalhus.org