Lord, Have Mercy ... have I missed you guys! I am still adjusting to my new home, but I promise to quicken my pace so I can fellowship with my family here again.
Having said that, how y'all been? Smile:)
Guess what ... it's time to help parents with a special needs child get through the maze of IEP season. Here are some quick terms to get to know and maybe you can help ease the stress of a son or daughter, grandchild, step-child, teacher, etc. Remember, WE are advocates now and we got plenty of work cut out in this season.
Alright, basic information, to keep stress down so we can stay mentally healthy. WE MUST pull together for the sake of each and every child. I haven't been here in a minute, but I'm keeping up with the crime, illiteracy rate, and increased depression due to the economy. We gotta hang on and help each other and WE CAN!
Ok, let's begin with basics about the beautiful American Disabilities Act (ADA):
Federal law protecting the constitutional rights of all persons (i.e., children) with a disability. Mandates inclusion and access to all programs receiving federal dollars and especially ALL public schools in the United States. Imagine that the civil rights law is an umbrella with spokes. One of the spokes is ADA. Thus, ADA covers the following as it pertains to educating children with special needs through age 21. ADA applies to each and every public school in the United States of America!:
Individual Education Act (known as "IDEA"), to prevent discrimination of children with special needs (disabilities) and it applies to each and every public school from pre-K through High School in each and every crack and crevice of the United States ... NO exceptions!
Section 504
This federal law was specifically created under IDEA to end discrimination of children with a disability in the public school systems in the USA. This same federal law mandates the "inclusion" of children with a disability in all public school programs and events (i.e., classrooms, hallways, stairways, field trips, assemblies, cafeteria, library, bus transportation, tests/exams, etc.).
Any physical or mental disability that limits a child's ability to learn and perform major life activities is protected by Section 504. Some common disabilities include mental illnesses such as all Development Disabilities or Disorders, Autism, Chronic Depression, Bipolar, Schizophrenia, Attention Deficit Disorder (“ADD”), Attention Deficit Hyperactivity Disorder (“ADHD”), Emotional Disturbances, Behavioral Disorders, Alcohol Syndrome, Juvenile Diabetes, Cerebral Palsey, Epilepsy, Mental Retardation, Deaf, Blind, Traumatic Brain Injuries (“TBI”), Speech Impairments, and hundreds of other qualifying disabilities.
A qualifying disability simply means a certified medical doctor or psychiatrist must diagnose the health condition one time. A child may be entitled to Section 504 even if the physical disability is not permanent, but does impair the child's ability to learn temporarily (I.e., cancer and chemo).
It is difficult when parents learn that their child has a disability. Understand that Jesus said to the disciples, "Let the little children come to me, and do not hinder them..." (Matt. 19:14 NIV). Society has a way of sticking labels on people and unfortunately, there are stigmas attached to labels. For example, discovering that your child is a genius makes parents proud. Discovering that your child is slow, causes shame. Jesus is teaching us in the scripture to allow ALL the children to come to Him and do not hinder.
The deeper meaning is that the word hinder means to block the way or progress of a person. Stigmas block the way or progress of a child. We understand that God knew us before we were born, even down to the number of hairs on our head because He created us. Jesus encourages us that God does not forget the sparrow, and we are worth more than the sparrow. (Luke 12:7 NIV). Thus, no child has been forgotten or foresaked by God despite society's labels.
Having said that, parents sometimes can be hurt or insulted when the school or pediatrician calls and says, "There's something wrong with Johnny." Immediately, parents become defensive/hurt and in the long run, time is lost in providing needed educational services to Johnny. Thus, Johnny is hindered.
Be encouraged that God created Johnny to be different to give Him all the glory. God chose you to parent or watch (as in guardian), or minister or pastor or fellowship or teach Johnny who is uniquely gifted for His glory. God gives every parent/watchman sufficient grace to parent/watch a child. (2 Cor. 12:9 NIV). Understand that resources are God's sufficient grace, too. Section 504 can also be the deliverance you have been praying for because Jesus is our deliverer. Rather than throwing up your hands when that phone call comes and getting depressed, be grateful that somebody with a special needs child prayed before you came along and God led him or her or them to make the path smooth for you. Amen? Amen! Living in darkness is not knowing information and living in light means you know the information. Make the light shine brighter by using the information!
Consider that in Isaiah 42:1 NIV; Isaiah was a servant chosen by the Lord who put His spirit on Isaiah. The deeper meaning is that the Lord poured His mind and will upon and into Isaiah. Through Isaiah, the Lord led the blind (without knowledge) out of darkness and into the Light (knowledge). (Isa. 42:16 NIV). The Lord declared He would make the rough places smooth. (Isa. 42:16 NIV). When the path is smooth, there are no hindrances. A smooth path leads to peace of mind.
Individual Educational Plan
The Individual Educational Plan (“IEP”) is the confidential and legal contract authorized by IDEA that the school is mandated to follow by federal law. This IEP contract is written and signed by all parties at a meeting commonly referred to as the IEP. After the Section 504 evaluation, the parent, doctors, therapists, teachers, principal, and anyone else identified as being needed to educate the child with disabilities, will write down all the recommendations to help the child in school and sometimes in the home after observing, testing, and evaluating the child. This is how the IEP is created. It is in effect for the current school year and extended year schooling. The IEP must be revisited for changes, etc. each and every school year. Just like no two children are alike, no two IEP’s should be alike. The IEP is a legally enforceable contract in a court of law. Everything the school is recommended to do for the individual child by the evaluators and you, the school must perform! It is ultimately the parent’s responsibility to ensure the IEP is being followed! The parent has the right to invite anybody he or she wishes to the IEP meeting each year!
The main people who should be present at each IEP meeting are: school principal or assistant principal, guidance counselor, occupational/physical therapist, speech therapist, school nurse (especially if your child takes medications during the school day), your DDA representative or Service Coordinator, biological parent, foster parent, legal guardian, school psychiatrist, transportation representative, durable medical equipment providers, and the home room teacher.
- There will be times when school personnel may be absent or unavailable. If you agree, you can proceed with the IEP without that person and/or accept their written recommendation at the IEP meeting.
- You also have the right to reschedule the IEP meeting until all personnel can be available. I strongly recommend this if it is the first IEP meeting.
- You have the right to request an IEP meeting or make changes to an existing IEP with another meeting at any time during the school year with advance notice to the school.
- If you do not agree to any part of the recommendations in the IEP, DO NOT sign the IEP.
- You have the right to appeal the IEP.
It is wise, wise, wise never to attend an IEP meeting alone! You can take your friend, an attorney, another parent/advocate, etc., but never attend all by yourself. If it is your first IEP, take an experienced advocate/parent. Inquire at your area parent resource organization.
EVERY person attending your child’s IEP must, must sign the IEP!!
If your local school district cannot accommodate the special needs of your child, then your local school system must pay the closest nearby school district that can. This includes a private school.
Understand that this process becomes very complicated and an attorney specializing in special education is necessary. In most cases, the local school will pay to have those services delivered to your child in his or her local school rather than pay the expenses of a private school or cost to send your child to a nearby school district that can accommodate the child’s special needs.
In any case, explore all options and keep the best interest of the child first and foremost. While a private school may be desirable, private schools are not subject to all the federal mandates that a public school must follow because it is a private school. It could end up that your battles with the private school for basic accommodations are worst without the IEP rights!
Likewise, if your child with special needs attends a private school, you are paying for more specialized services than if your child attended a public school and receives special education services at no cost to you. Beware, the child can be hindered and suffer more at a private school if he or she has special needs, but not in all cases.
Remember ~ if it is not written down and spelled out in the IEP, it never happened!
Extended Year Schooling
Extended Year Schooling (“EYS”) is when some times a child will regress over the summer school vacation through no fault of his or her own, but due to the nature of his or her disability. If your child is at risk to “regress” over the summer school vacation, he or she may be eligible to attend an EYS which typically is an additional few weeks of school during the summer months and includes school bus transportation and lunch if applicable. The EYS does not have to be held at your child’s regular school as long as it provides the services, accommodations, and modifications your child needs. The EYS must be written into the IEP each year!!
Modifications
Modifications are the specific therapies, medical equipment, etc. a child will need to help him or her learn. It could include computer technology, occupational therapy, physical therapy, one-to-one instructional aide, speech therapists, ramp, home tutoring, modified class schedule, special adaptive equipment, etc. tailored to the individual child. Any and all Modifications must be spelled out in writing in the IEP!
Accommodations
Accommodations are also tailored to the individual child and can include, special classroom preferential seating, books, class location, special passes to leave the classroom at special times, school bus transportation with or without wheelchair accommodation, etc. Accommodations must be reasonable and must be written in the IEP each year, too!
Developmental Disabilities Administration
Every state in the USA has a federal Developmental Disability Administration (“DDA”) agency that either provides services to persons with disabilities including children or ensures that the child indeed receives access to disability services and community inclusion. It is federal law. There is no cost to the child or family for DDA services. This includes community services resources, family services resources, and individual services resources, short-term care resources, long-term care resources, medical assistance entitlement resources, child welfare services resources, and IEP services resources. DDA will also case manage the child.
- You can access DDA the moment you learn your child has a developmental disability.
- Either a social worker at the clinic or hospital can help you complete the application; or
- You can contact your DDA in your state directly for an application for services;
- Understand that there is typically a waiting list for services depending on your area. It is wise to complete the application right away no matter the length of time of waiting for services to begin. This is because DDA has access to many, many resources that will benefit your child over the long run. It is critical not to delay filing an application because this will always delay when you actually begin to receive services.
- DDA provides wrap-around case management for the family once the child’s needs are identified and then the family’s special needs because of the disabled child. This affects housing accommodations, home modifications, wheelchair purchases, educational assistance case management, etc. The DDA representative should be at every IEP meeting to understand the services the child will need and assist the family as a case manager.
- While you are waiting for DDA services to begin, you can apply for SSI or SSDI, Food Stamps, and contact the various support organizations in your area.
- Each year after DDA services begin, you must authorize DDA to provide services, access medical records, etc. to best attain needed supports and services for your child.
- It is not wise to terminate DDA services. One year you may need several services and resources, other years you may not. However, you never want to be without tapping into DDA’s resources and starting all over on the waiting list.
- Typically, DDA will provide services to the child throughout his or her life. This means he or she will not have to reapply when he or she becomes an adult and needs adult disability services.
- Each year you will sit down with DDA and write a Plan of Care for your child. This is the list of supports and services your child or family will need for the year.
- Understand that DDA is the regulating agency. DDA may hire service providers to case manage your child/family at no cost to you or your child. In many states, this service is provided by “Service Coordinators.” These individuals are trained to coordinate all the services for your child/family based on the primary needs of the child. He or she should always advocate for the child as well. The Service Coordinator should always respect the parent’s rights as well and not force his or her will for the child.
- You can always ask for a Service Coordinator to be removed from case managing your child and request another Service Coordinator. It is not wise to live without a Service Coordinator in your child’s life. A good Service Coordinator should make things happen for your child in a timely fashion and take that bureaucratic (Goliath) stress off you.
- Your child is eligible for DDA services at any age with a developmental disability. Developmental disabilities cause problems with major life activities such as language, mobility, learning, self-help, and independent living. Developmental disabilities begin anytime during development up to 22 years of age and usually last throughout a person’s lifetime. (i.e. Cerebral Palsey, Autism, Lead Paint Poisoning, Torretts Syndrome, Mental Retardation, Traumatic Brain Injuries stemming from car accidents, etc.).
- It is wise to connect to an advocacy support organization in your area. While we are learning to conquer Goliath in this New Year, we sometimes need the full armor of protection to conquer that giant of red-tape and bureaucracy that causes hindrances for the child with special needs. Having said that, an experienced advocate will know how to cut through the red-tape and get the services and/or resources your child/family needs with little to no stress on you. That advocate will teach you the way so that you are armed with knowledge that leads to success and peace of mind.
- Peer support is crucial to staying patient and peaceful. Be wise and connect with a peer who understands the emotional trials and tribulations of parenting a child with special needs. You are not alone and God has not forsaken you.
- It is wise and comforting for church outreach ministries to include coping and management strategies for the special needs mother, sister, aunt, uncle, grandparent, etc. at woman and men’s ministry functions, etc.
- Be a good listener! Parents are naturally sensitive about their children and especially the special needs child. However, practice listening to the message and check in with the Lord before going to battle …
- Pick and choose the battles very carefully, too. There will be many. How will the battle affect your child’s success in the future. Some trials and tribulations are just that. Exercise wisdom and stay in prayer and guidance for stronger discernment.
o Be realistic in what you are asking the school to provide for your child;
o Avoid being angry with the school when the responsibility to perform a task was yours, but you neglected it. For example, did you forget to call the vendor and check on the adaptations to the wheelchair? Did you skip the regular PTA meeting? God watches over all the earth and He never slumbers.
o Practice being humble more often and trust your mother’s instinct always.
o Never fear when it is time to advocate for the best interest of your special needs child.
Every disease, syndrome, illness, etc. has a support organization and parent resources and chances are, there is at least one online in your area. Take the time to connect with that organization. Make friends with other parents. Doing so can make the difference between a raging storm and peace of mind.
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Visit the National Alliance on Mental Illness at
www.nami.org Visit Children and Adult with Attention Deficit Hyperactivity Disorder at
www.CHADD.org Visit Attention Deficit Disorder at
www.CHADD Visit the National Council on Disability at
www.ncd.gov Visit the National Association of Autism at
www.nationalassociationautism.org Visit the National Association of Retarded Citizens at
www.thearc.org Visit the Parents Place of Maryland at
www.ppmd.org Visit the South Carolina Family Resource Center for Disabilities & Special Needs at
www.frcdsn.org If you live outside Maryland and South Carolina?
Visit the Technical Assistance Alliance of Parent Centers at
www.taalliance.org and link to disability resource organizations in your state including assistance with the IEP mandated by IDEA.
You can always contact your state governor's office or website for contact information for Developmental Disability Administration in your area. You can also always contact your state law school for contact information for attorneys specializing in special education and/or disability law. Each state should have a disability law center that can handle basic IEP issues.
To God be the glory for the light and omnipresence!
Passing the peace,
Posted By: agnes levine
Thursday, September 23rd 2010 at 8:30AM
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