Education

Children and young adults with CACNA1A variants require educational supports that address their individual differences.

Individuals with Disabilities Education Improvement Act of 2004 (IDEA 2004):

The Individuals with Disabilities Education Act (IDEA) is a federal law that mandates that all states must provide children, including those with disabilities, with a free and appropriate public education (FAPE). Students with disabilities are to be educated in the least restrictive environment (LRE).

Early Intervention:

Part C of IDEA provides Early Intervention Services (EI) for children from birth through age 3 that have a confirmed disability or a developmental delay.

Early intervention consists of education, services and a variety of supports that are designed to decrease the effects of disabilities for those presumed to be at risk. If your child is diagnosed with CACNA1A or has developmental delays, he/she is eligible. Caregivers, the pediatrician or a qualified professional may refer a child to a state’s early intervention program.

Early Intervention Services can help you learn the best way to care for your child, support your child’s development and help to include your child in community activities. Services, which are to be provided in the most natural environment (usually the home), are detailed for each child and his/her family in an Individualized Family Service Plan (IFSP). Supports include:

  • Special Education

  • Family Education and Counseling

  • Speech and Language Therapy

  • Physical Therapy

  • Occupational Therapy

  • Assistive Technology

  • Hearing and Vision Therapy

  • Psychological Services

  • Nutrition Services

  • Social Work Services

  • Medical and Nursing Services

Ages 3-5:

The Preschool section of IDEA 2004 (Part B, Section 619) applies to children ages 3 through 5 if they meet the definition of a child with a disability or show a developmental delay.  Under this program preschool-aged children are entitled to Special Education and Related Services in the Least Restrictive Environment (LRE), which is typically an inclusive preschool classroom.

Kindergarten - High School:

Under IDEA, schools must collaborate with parents and students with disabilities in the design and implementation of special education services. Parent (and student) input and wishes must be considered in designing and implementing an Individualized Education Plan (IEP).

There is a process in order to determine whether or not a child has a disability and requires an Individualized Education Plan (IEP) (https://www2.ed.gov/parents/needs/speced/iepguide/index.html#introduction). The most important piece of information we can provide you is to remember that as parents, you are, by law, the most vital member of the IEP team, as you know your child best. Beginning at age 14, your child must be invited to attend the IEP meeting and should be encouraged to participate.

For a child with a diagnosis of CACNA1A, the IEP should include special education and related services. Related services include:

  • Physical Therapy - To address impairments in strength, balance, coordination, and mobility that affect a student’s functional task performance in the classroom, gym class, on the playground, and navigating the building. PT is necessary due to the ataxia and developmental delays that accompany a CACNA1A diagnosis.

  • Occupational Therapy - In the school setting, the occupational therapist’s main concern is the child’s ability to engage in school-related activities including classroom activities, lunchtime, and recess (American Occupational Therapy Association, 2013). OT addresses: Fine motor skills and self-care (handwriting, typing and mouse control, turning pages in a book, buttoning and zipping, shoe tying, feeding oneself, opening lunch containers); motor planning (catching and throwing); bilateral coordination (holding a paper in one hand and cutting with the other); organization (organizing a backpack); postural control, balance, visual motor (hand-eye coordination) and visual perceptual skills (writing within margins, standing in line without bumping into peers.) Ataxia, vision disorders and developmental delays greatly affect one’s abilities in these areas, so occupational therapy should be an integral part of a student’s IEP.

  • Speech and Language Pathology - Speech and language pathologists (SLPs) support students with communication disorders. Expressive language addresses vocabulary, grammar, the formulation and expression of ideas and information and social or pragmatic language. Receptive language is receiving and understanding language. Additionally, SLPs also address voice disorders, swallowing issues, stuttering, fluency and articulation (the ability to produce all of the sounds). Apraxia of speech is a motor speech disorder that affects the way a child plans to produce speech. It requires therapy that focuses on repetition, sound sequencing and learning to coordinate motor movements for sound production. Because slurred speech can be a symptom of ataxia, articulation and expressive language goals should be incorporated into the IEP. Additionally, students with cognitive delays have difficulty understanding abstract language and often need support with the social use of language.

  • Other services are: Psychological services, social work/counseling, medical services, health services, parent counseling/training and transportation (to/from school and in/around the building.) For more information, visit the state resources page.

You will often find that the goals/objectives and/or the number of services your child receives on the IEP are not as comprehensive as you would like. However, school-based services are not intended to meet all the therapy needs of a student. School-based therapists will tell you that the goals/objectives are designed to promote success in the educational environment. As a parent, you are an equal member of the IEP team and have the right to request what you think your child needs to be successful, especially if you feel your child is not making progress. Your child should be making academic and functional progress. If that’s not happening, you must advocate for a more robust program. Due to a Supreme Court ruling in 2017 (Endrew vs. Douglas County School District), goals must be “appropriately ambitious.” Remember, you are the expert on your child as you know your child’s strengths, challenges and interests best. You are his/her best advocate - It is important to build a working relationship with the school-based IEP team, but do not be afraid to ask for what you think is best for your child, even if it conflicts with a professional’s suggestion. The worst thing that will happen is that they will turn you down. And, then, if you feel strongly, there are procedures in place, called due process safeguards, that protect the rights of children with disabilities and their parents.

All in all, trust, collaboration and communication between parents and the school are the keys to student success. Work together with the school-based team to support your children's learning. Be an interested parent. Keep in touch with your child’s teachers and related service providers. Let them know when they are doing a good job and when you feel things are not going well. Listen to the staff’s professional opinions about your child. They spend a great deal of time with your child and often pick up on things before you or a doctor might. When differences arise, look for ways to reach a compromise while keeping your child’s needs first and foremost in your mind. It is not always easy, and the relationship can quickly become strained when parents are ignored or made to feel that their demands are unreasonable. But finding a way to successfully work together with your child’s teachers is a win-win situation for all.

Post-Secondary Planning: The sooner you start to think about transition planning, the better! This free self-paced course will teach you the steps needed to build a transition plan. Presentor is Audrey Vernick, Director of Patient and Family Advocacy at Pediatric Epilepsy Surgery Alliance. Visit: Transition Planning for Young Adults with Neurological Conditions

College: Visit College Planning Guide for more information on supports and resources available for students with learning issues who plan to attend college.