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Every child has the right to an education. Those born with birth defects, such as cleft lip and pal-ate, are no exception. Children born with cleft lip and palate are often in need of additional services due to difficulties with speech and/or hearing. You as a parent will need to participate in the process of championing these opportunities for your child. This article highlights some of the things you need to know. Feel free to use the references for more information.

What is IDEA?

The Individuals with Disabilities Education Act (IDEA) is a U.S. federal law governing how states and public agencies provide special education, early intervention, and related services to children with disabilities. IDEA covers 13 specific catego-ries of disability and addresses the educational needs of children with disabilities from birth to 18 or 21 years of age.

What is the first step to qualifying for disability?

The first step is determining whether or not your child has a disability and if so, what that disability is.

What is considered a disability?

A child must have one of these disabilities to qualify:• mental retardation• hearing impairment• speech or language impairment• visual impairment• serious emotional disturbance• orthopedic impairment• autism• traumatic brain injury• specific learning disabilities• developmental delays (this disability

applies only to children ages 3–9); and• other health problems

Also your child will need to be professionally evaluated.

RESEARCH AND RECENT STUDIES

Special Education Issues IDEA

This information has been gathered by The Cleft Lip & Palate Foundation of Smiles. We are responding to the fact that a number of our members have questions concerning the safety of medications that they had taken during pregnancy, or may take during a future pregnancy.These medications may be the cause of craniofacial differences. Our goal is to ensure that our families have resources and facts about the medications that may be taken during pregnancy, so you can have have informed discussions with the treating doctors.

Online at www.cleftsmile.org

Contact us by email at rachel@cleftsmile.org

The Cleft Lip & Palate Foundation of Smiles provides research on craniofacial causes (genetics, environmental, prescription drugs), treatments (cleft palate teams, medical devices, therapies), and available support for families.

This PDF is about Special Education Issues IDEA . . .

www.cleftsmile.org

© 2011 The Cleft Lip and Palate Foundation of Smiles

Who conducts the evaluation?

The evaluation team consists of you the parent, the child if old enough to participate, a general education teacher and a special education teacher, relevant therapists such as speech and language pathologist, and someone from the school district who has the authority to commit the required resources.

Your child will be assigned special education if his or her needs cannot be met in a regular classroom setting.

If my child qualifies, what’s the next step?

Your child must receive IEP (individual education plans) which determine the directional scope to be taken for his or her education. IEP is mandated by IDEA. The IEP should describe how the student learns, how the student best demonstrates that learning and what teachers and service providers will do to help the student learn more effectively. Considerations in developing an IEP include as-sessing students in all areas related to his or her known disabilities while considering the ability to access the general curriculum, considering how the disability affects the student’s learning, developing objectives that correspond to the stu-dent’s needs, and choosing a placement in the least restrictive environment possible.

Every state has a timeline for when and how IEP is determined.

How much does this cost?

It should cost you nothing. FAPE or free and appropriate education is provided to a child with a disability. Schools must provide students with an education, including specialized instruction and related services, which prepares the child for further education, employment, and independent living.

If a school district is unable to provide free appro-priate public education, they may place a student with a disability into a program other than the one it operates. However, the school district or entity must cover any financial obligations related to that program.

What if the IEP is not working?

The IEP is like a contract—the school only has to give your child what is written in the IEP. Talk to the child’s teacher or other school staff. Ask if the teacher sees the same problems and can suggest any changes in the classroom that might help. Ask to see tests and copies of your child’s work. Ask if the other services in the IEP are being provided? Does the class have more children than state law permits? Are some classes more difficult or are there times of day that seem harder? Are the teaching strategies working? Does your child need a functional behavioral assessment? How can the family help at home?

If you’re not happy with the outcomes, you may have to fill out more forms and take it to another level like resolutions, mediation, or hearings.

It should cost you nothing. FAPE or free and appropriate education is provided to a child with a disability . . .

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© 2011 The Cleft Lip and Palate Foundation of Smiles

At what age does special education start?

From birth to 3 years old.

States are responsible for making early interven-tion services available to eligible children and their families. States also may elect to provide services to infants and toddlers who are at risk of having substantial developmental delays—physi-cal, cognitive, communication, social-emotional, and/or adaptive, if appropriate early intervention services are not provided.

States may apply for grant funds as part of IDEA, part C.

Find early intervention programs in your state.

What disabilities affect cleft palate children?

In babies with cleft lip only, speech development should be no problem. However, as children with cleft palate grow, they often need some speech therapy. Speech problems occur for one or more of the following reasons:

• Incorrect speech patterns learned before the palate was closed

• The palate is open, allowing sounds to escape into the nose and giving the voice a nasal quality

• The repaired soft palate at the back of the mouth isn’t able to close off the nose, so air and sound escape into the nose during speech

• Teeth are improperly aligned or missing, making it hard for the child to produce certain sounds that depend on the action of the tongue against the teeth, for example “s” and “sh”

• Ear problems prevent the child from hearing speech sounds clearly.

Do you have any tips for raising children with oral cleft birth defect disabilities?

• Learn as much as you can about your child’s disability

• Find programs to help your child• Talk to your family about how you’re feeling• Talk to other parents of a child with a

disability• Join the CleftSmile.org online community• Join a support group• Stick to a daily routine• Take it one day at a time• Nurture yourself• Reward yourself by doing something you

enjoy doing like going to a movie, taking a yoga class, or meeting a friend for lunch.

Raising a child with disabilities is an incredibly rewarding experience. It’s also challenging. Children with disabilities are not as rare an occurrence as one might suspect. Millions of parents throughout the United States are raising children with disabilities. You are not alone.

www.cleftsmile.org

© 2011 The Cleft Lip and Palate Foundation of Smiles

Do you have more questions?

For questions and resources about cleft lip and cleft palate, please contact: The Cleft Lip and Palate Foundation of Smiles. Cleft lip or palate is one of the most common birth defects, currently affecting one in 600 children in the United States. The Foundation was formed by a young mother of twins both born with cleft lip and palate. The Foundation offers positive support to parents of children with craniofacial differences by offering news, information on cleft palate teams, state by state resources, birth registry listings, and a sup-

port group where you can meet other families in your local area who are going through the same or similar concerns and where you can share and express useful information.

Do you want more information about IDEA, IEP, and EI? Please refer to our references below or contact Rachel Mancuso for assistance for questions about speech therapy and middle ear infections as disabilities related to oral cleft birth injuries.

ReferencesIDEAOffice of Special Education

IEPIndividualized Education Programs

U.S. Department of Education – FAPEFree Appropriate Public Education for Students of Disabilities: Requirements

under Section 504 of the Rehabilitation Act of 1973

Education Law CenterList of publications for students with disabilities in Pennsylvania but serves as

a guideline for other states

The Right to Public Education in Pa. (PDF)A guide for parents

University of Oklahoma’s Craniofacial ClinicAn Interdisciplinary Team Approach to Cleft Lip, Cleft Palate and Craniofacial

Problems

Cleft TherapyCleft Lip and Palate: A Guide for Speech-Language Pathologists in the Schools

University of North Carolina, Division of Speech & Hearing Services Can Speech Therapy Help When a Child Has a Repaired Cleft Palate?

American Speech Language Hearing AssociationResources to better understand communication and communication disorders

Craniofacial TeamsFind a team near you for support and networking

Early Intervention (EI)Find these programs in your state

Other Research from The Cleft Lip & Palate Foundation of Smiles

Research and Recent Studies:

Causes of Cleft Lip and Palate: Birth Defects Causes of Cleft Lip and Palate: Clomid Causes of Cleft Lip and Palate: Health Insurance Causes of Cleft Lip and Palate: Hydrocodone Causes of Cleft Lip and Palate: SSRIs Causes of Cleft Lip and Palate: Topamax