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Tips for Parents of Children with Special Needs

Depending on where you live and other variables, children with special needs make up a significant percentage of your neighborhood, as anywhere from 10 – 20% of the population of children in the US are classified as special needs of one kind or another.

If your child needs:

  • Help keeping up with his/her school work
  • Help making  up work due to absenteeism
  • Time to rest during the day because of medical reasons
  • To have a modified (shortened) school day
  • To take medication during school hours
  • To see the nurse during the day for any reason
  • Special accommodations such as: using graphic organizers, extended time taking all tests, a special location to take a test, enlarged print, a second set of books to keep at home
  • Large print text books
  • An assistive technology assessment to determine what he/she needs to learn to his/her fullest potential
  • A scribe, note taker, outlines handed out of lesson prior to class, a calculator etc.
  • Special transportation (a lift bus, a matron on the bus, air-conditioning)
  • A barrier-free school
  • A special class
  • Related services such as: physical therapy, occupational therapy, language/speech therapy, counseling, assistive technology, social work services, *special education services such as resource room services, a consultant teacher or special education teacher support services
  • A Behavioral Assessment Evaluation to determine if behavioral interventions are needed
  • A hearing device
  • A paraprofessional 1:1 during the day – also called an aide
  • Any other special request such as adaptive physical education, snacks during the day etc. because of his/her health impairment

Your child may need Special Education through the Individuals with Disabilities Act (IDEA) or special accommodations in school through Section 504 of the Rehabilitation Act of 1973 (504 plan).

There are LAWS to protect children who are have learning disabilities, health or physical impairments that prevent them from being involved in regular education programs. The  federal laws require all public schools provide a ‘Free, appropriate, public education’ (FAPE) in the least restrictive environment (LRE) to every student with special needs. The three main laws that you should know about are:

Individuals with Disabilities Act (IDEA) (passed in 1975 and re-authorized every several years – the most recent reauthorization in 2004), Section 504 of the Rehabilitation Act of 1973 (Section 504), and the American with Disabilities Act (ADA) passed in 1990.

Special Education is a five-step process:

Step 1:
Referral – You, the parent, can refer your child for an evaluation up until the age of 21 or a professional that has concerns about your child can also make a referral for an evaluation.  You must make sure to send a letter requesting a Committee on Special Education meeting (CSE) by certified mail with a return receipt requested. Save the proof of receipt with a copy of the letter. This is very important.

(Making a referral for an evaluation does NOT mean you have to agree to an evaluation.)  Begin a notebook for your child and attach all important documents starting with the receipt for the request of a CSE meeting.

Step 2:
The school needs to obtain a parent’s informed consent before starting any evaluations for a new referral.
Your Child’s Evaluation- A child must be avaluated in all areas of suspected disability. You should as for as comprehensive an evaluation as possible. If you go through the Department of Education, evaluations are free of charge to you. You can also provide the committee with independent evaluations that you have had done on your child. When the evaluations are completed, request to see all evaluation reports prior to these CSE meetings. You have every legal right to see any paper reporting information about your child.

Step 3:
Eligibility – To receive special education, your child must be classified into one of thirteen different classifications listed in the federal law. Most children with a chronic illness are classified ‘Other Health Impaired’ others are classified ‘Traumatic Brain Injury’.

Sometimes a child is given two or more classifications – This is not common. Your child’s services are driven by your child’s needs, not by the classification. This is why the document is called an Individual Education Plan (IEP) – This plan must meet the needs of your child.

Step 4:
IEP Development – Your child’s IEP is a legal working document and is very important. You should be an important member of the Committee and be present at the meeting.
An IEP can be difficult and you should be prepared for it.

Ways to be prepared:

  1. Have copies of all the evaluations, observations and reports.
  2. Highlight important points to discuss. If there is something that is unclear to you, try to find a professional to explain the reports to you prior to the meeting.
  3. Try to learn and become familiar with the language.
  4. Bring a teacher, an advocate or someone who knows about your child to the meeting.
  5. Listen to their recommendation. You can always tell the committee you want to think about what they have said and review it with another person who knows your child.

Step 5:
Placement/Sites – The federal law states that where a child is placed is decided by what his/her IEP states. Placements must be as close to home as possible. You must be given some choices. Parents can request a class profile (which describes the academic, management, behavioral, and social needs of the children in a class that is recommended). Parents should (and are allowed) to visit the class before agreeing to placement. The Department of Education offers a school and/or class where the student can attend (Placement). Parents should visit the placement before accepting or signing anything. Sometimes children are deferred to ‘non-public approved’ private special education schools because public schools found they couldn’t meet all the needs of the child.

Categories:

•    Autism
•    Deaf-blindness
•    Deafness
•    Developmental delay
•    Emotional disturbance
•    Hearing impairment
•    Intellectual disability
•    Multiple disabilities
•    Orthopedic impairment
•    Other health impairment
•    Specific learning disability
•    Speech or language impairment
•    Traumatic brain injury
•    Visual impairment, including blindness

Tips for Parents:

  • Know your rights.
  • Become informed about how your child’s condition impacts his/her education.
  • Your child’s education consists of academic, physical, psycho-social (socialization) and behavioral development.
  • Socialization is part of a child’s education.
  • Be an active participant in your child’s educational planning.
  • If you are not sure about the services that are offered the CSE meeting OR  a 504 meeting, tell them you are not in agreement and want to try to resolve your differences in opinion.
  • Call one of the resources listed in this guide and ask to speak to someone on their staff that can help you.

Resources:
•    A Parent’s Guide to Section 504  schwablearning.org
•    Individual Education Plan (IEP) schwablearning.org
•    National Center for Learning Disabilities
•    Resources for Children with Special Needs
•    New Alternatives for Children  www.nac-inc.org
•    Wright’s Law  wrightslaw.com/
•    Council for Exceptional Children  exceptionalchildren.org/
•    Advocates for Children  advocatesforchildren.org/
•    New York State Education Department  www.nysed.gov
•    The Council for Parent Attorneys and Advocates, Inc.  www.copaa.org
•    The Making Headway Foundation  www.makingheadway.org

Good luck and ask lots of questions!

Patricia Weiner, MS is presently an educational consultant and advocate for Children with Special Health Care Needs (CSHCN) and academic challenges. She works for The Making Headway Foundation, is a private consultant and faculty mentor for graduate students at Bank Street College of Education in New York. Over the past 35 years, she has worked as a special educator, child life specialist, health-education specialist and has been the administrator of several programs. She has presented nationally on education and child life, published articles and chapters in child life text books, and has received several awards for child advocacy for this population of children.
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The views and opinions expressed on this blog are purely the blog contributor’s. Any product claim, statistic, quote or other representation about a product or service should be verified with the manufacturer or provider. Writers may have conflicts of interest, and their opinions are their own.


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Patty Weiner: Patty Weiner is a mother and grandmother whose career spans over thirty-five years as a child life specialist, an educator, a child and family advocate and a health education specialist. She served as the Director of Child Life and Education Services at North Shore- Long Island Jewish Medical Center and was the founding Director of the Master’s Degree program in Child Life at Bank Street College of Education in New York. Patty is presently an educational and child life consultant practicing in Manhattan; an educational consultant for The Making Headway Foundation, a not-for -profit organization dedicated to children with brain and spinal cord tumors and their families; and a graduate school mentor in the Child Life program at Bank Street College. Patty’s work has been presented in a variety of professional forums and publications. She wrote a book, Taking Your Child To The Doctor or Hospital: Helpful Suggestions and Practical Tips to Make Your Child’s Visit More Comfortable.
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