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Candace Cortiella

Candace Cortiella is the Director of the Advocacy Institute, a non-profit organization that focuses on improving the lives of people with learning disabilities through public policy and other initiatives. She serves on the Professional Advisory Board of the National Center for Learning Disabilities and writes regular policy-related articles for SchwabLearning.org. The mother of a young adult with learning disabilities, she lives in the Washington, D.C., area. She spoke with us in June, 2003.

• Don't all people have some form of learning difficulty? Aren't learning disabilities simply a matter of degree?
• Are there early signs of learning disabilities?
• How can a parent determine if a child has a learning disability?
• What can parents do once their child is diagnosed? Where can they go for help?
• What kinds of medical, behavioral, and holistic treatments are available? What are the pros and cons of each type?
• What kinds of financial costs might parents face as they seek help for a child?
• What if parents live far away from the care their child needs? What can they do?
• What is an IEP, and what can parents expect from the IEP process?
• What can parents do if they feel a school system is not following their child's IEP?
• What can parents do when they believe their child is struggling in school but have been told the child does not qualify for special education?
• What are the pros and cons of having children repeat grades? Who is responsible for the decision to hold a child back?
• What should parents keep in mind when talking with a child about his or her learning disability?
• How might a parent's own learning disability impact how he or she responds to their child?
• What kinds of assistive technologies are available?

Don't all people have some form of learning difficulty? Aren't learning disabilities simply a matter of degree?

Candace Cortiella: Certainly everyone has strengths and weaknesses and, to a certain extent, every individual may have one or more of the characteristics associated with learning disabilities. The number of characteristics and, more importantly, the degree to which these characteristics interfere with life and learning is the determining factor. When one's assets (strengths) can't compensate for one's deficits (weaknesses) in most or all aspects of life, then a diagnosis of "learning disabilities" is in order.

Equally, if not more, important, is the issue of an individual's need for specialized instruction (especially in K-12) as well as accommodations (in post-secondary education and the workplace) in order to learn and perform life skills at the same rate and to the same level of proficiency as those without learning disabilities.

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Are there early signs of learning disabilities?

Candace Cortiella: Most definitely, and parents should be encouraged to heed these early warning signs and investigate quickly. While the development of each and every child takes a slightly different route, observation of some or all of the following signs in the preschool years could indicate that a child is at high risk for later learning disabilities:

• Late speech, pronunciation problems, difficulty with rhyming
• Trouble learning numbers, letters, days of the week, colors and shapes
• Difficulty learning and understanding left-right, up-down, before-after, first-last, yesterday-tomorrow
• Extreme restlessness, lack of ability to concentrate, impulsive behavior
• Difficulty following directions or learning routines
• Awkwardness when running, jumping, skipping; may bump into objects, fall frequently
• Difficulty with buttoning, zipping, using scissors, catching or hitting a ball

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How can a parent determine if a child has a learning disability?

Candace Cortiella: The process of determination varies depending on the age of the child. In the preschool years, when formal instruction in areas such as reading has not yet begun, evaluation would focus on the development of skills such as those mentioned above. The child's language development would be an important area of investigation. Since young children will have not yet begun to show significant deficits in their acquisition of learning through formal instruction, identification will be more along the lines of "at risk" for learning disabilities than a diagnosis of the presence of learning disabilities and identification of specific types of learning disabilities (reading, written language, math, etc.).

Lack of a formal assessment and diagnostic process in an instructional setting for young children should not prevent the delivery of early intervention services. If a child shows many early warning signs and other contributing factors can be ruled out (such as mental retardation, hearing impairment, etc.), then many valuable services can be started. Speech therapy, physical therapy, and occupational therapy are some of the early services that can provide lasting results. In addition, since reading difficulty is the most prevalent of all learning disabilities, early activities to build the skills that have been identified as critical to reading acquisition should also be undertaken. Such activities include building vocabulary and phonological awareness (the ability to recognize phonemes, the basic sounds that make up words).

Parents should explore the assessment services available to them through the "Child Find" provisions of the Individuals with Disabilities Education Act (IDEA). Information can be obtained by contacting the local school district's department of special education. In addition, a child's pediatrician can offer resources and referrals for assessments of young children. Psychologists are generally the best professionals to assess young children.

Once formal education begins, the process of identification often becomes a collaborative effort between the public school and the parent(s). Often, teachers are the first to notice when a child is struggling to learn. A suspicion on the part of a teacher of the presence of learning disabilities should prompt both a conversation with the child's parents as well as the recommendation for an evaluation. Such a recommendation is usually taken before a school's multi-disciplinary team which often includes the child's teacher(s), principal, school psychologist, social worker, and others as appropriate. Frequently, the team will suggest a process of interventions to see if the child's rate of learning can be improved. Parents should be aware of such decisions and the time that will be given to strategies used in pre-referral intervention plan. Should indicators point to a disabling condition, the school should proceed with a formal evaluation and consideration of eligibility for special education services. Parents are entitled to participate in the decisions regarding the types of assessments to be used, and they are also entitled to receive a copy of all evaluation results as well as an explanation of the findings.

Currently, for school-aged children, the process of diagnosis of learning disabilities is coupled with the determination of the need for special education -- specially designed instruction, at no cost to parents, to meet the unique needs of a child. That determination is made using several factors, one of which is a finding of a severe discrepancy between the child's ability and achievement. If it is determined that the child has the ability to learn at a normal rate yet is consistently failing to learn, then the child can be found eligible for special education services within the category of specific learning disability under the IDEA. Unfortunately, the gap between ability and achievement must be severe, and it is this severity requirement that has been accused of making children wait to be identified until they have failed for a consideration length of time. Fortunately, work in the areas of both research and public policy is underway that could improve this system of identification, particularly for children in the early grades.

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What can parents do once their child is diagnosed? Where can they go for help?

Candace Cortiella: The first stop when looking for help should be the local school district. Since schools have an obligation under the Individuals with Disabilities Education Act (IDEA) to provide a free, appropriate public education to children with disabilities, parents should work with their local school to determine the services needed by their child in order to progress and benefit from education. This might mean the formulation of an Individualized Education Program (IEP) that outlines the services that will be provided as well as annual goals that set forth the amount of progress to be made within a specified period of time.

In addition to working with their local school on specific services, parents should learn as much as possible about their child's learning disability so they can advocate successfully. There are several organizations devoted to providing information on learning disabilities as well as support at the state and local level. These include the Learning Disabilities Association, the International Dyslexia Association, and the National Center for Learning Disabilities. All have Web sites that offer information and resources, and many have local and state chapters that hold conferences, and training classes and offer support to parents. Getting to know other parents of children with learning disabilities is an effective way to discover resources, share ideas, and learn from the experiences of others who have traveled the same road.

If the child is eligible for special education services, parents will be able to maximize these services if they understand the federal law, federal regulations, and any state laws or regulations that mandate these services. For information on special education laws, parents should contact the Parent Training and Information Center in their state. These "PTI" Centers are funded through the IDEA and are responsible for providing training and information to parents on special education law. Many hold training classes that will help parents understand both their role and responsibilities in special education as well as those of the school. Only by understanding the rather complex special education laws and regulations will parents be prepared to successfully navigate the special education process. Books on the topic are another good source of information, but parents should remember that each state has its own set of regulations, so it's important to be knowledgeable about state level policies in addition to federal requirements.

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What kinds of medical, behavioral, and holistic treatments are available? What are the pros and cons of each type?

Candace Cortiella: Parents should be cautious about treatments that are promoted as a cure for learning disabilities. While some medical interventions -- such as medication if a child has also been properly diagnosed with a coexisting disorder such as ADHD -- can be most helpful, many treatments are unproven and ineffective. Many of the treatments that we see promoted through advertising are extremely costly and have no independent research showing that they are effective and that the effects are sustained over time.

Should parents find a treatment that looks promising, a substantial amount of homework should be done before proceeding. Parents can be quick to act on a promising treatment, wanting to help their child if at all possible. Keeping in mind that a learning disability is a life-long condition that can't be "cured" will help parents make wise decisions. Ask for contact information from other parents whose children have undergone the treatment program and ask for independent research that shows that the program or treatment achieves the results promised. Then, post messages in some of the online discussion areas and seek feedback from other parents. Ask teachers and other professionals if they know of the treatment and its efficacy.

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What kinds of financial costs might parents face as they seek help for a child?

Candace Cortiella: In many situations, the local public school can provide adequate help for a child with learning disabilities through special education services. Because of the Individuals with Disabilities Education Act (IDEA), these services must be delivered at no cost to the parents. Should these services be inadequate, parents also have the right to request that the public school pay for the services needed to help the child benefit from education. Such situations are not without potential legal complications, and parents should be well-informed about their rights under IDEA with regard to services.

Parents will often seek tutoring for a child with learning disabilities in order to supplement the school's special education services. Such private tutorial services can be costly, and parents should explore the opportunity for any kind of tax deductions that might be available for the purchase of such services. Private evaluations can sometimes be covered by health insurance plans or by requesting payment from the local school district.

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What if parents live far away from the care their child needs? What can they do?

Candace Cortiella: Some parents opt to send their child to private residential schools that are dedicated to serving students with learning disabilities. In such cases, parents need to examine the schools closely, talk to other parents who have used the school, and be sure that such a placement is right for their child. Sometimes, certain short-term therapies or treatments can be arranged during summer months when a child is out of school. Parent and child can stay at a hotel or possibly with a friend or relative during the treatment period.

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What is an IEP, and what can parents expect from the IEP process?

Candace Cortiella: An Individualized Education Program, or IEP, is an agreement between school and parent that outlines the special education and related services to be delivered to a child who has been found eligible for services under the Individuals with Disabilities Education Act (IDEA). The document provides several important statements about the progress to be accomplished and the specific amounts of special education and related services to be delivered in order to achieve the desired progress. In addition, an IEP outlines accommodations to be furnished both in daily instructional settings and in state- and district-wide testing. It also details how progress will be determined and a method by which parents will be regularly advised of that progress.

Parents should expect to be full partners in the development of their child's IEP. They provide critical information about their child and should be a respected member of the IEP team. IEP development is a collaborative process between school personnel and parents. To make the most of the process and to ensure that their child will benefit adequately from special education services, parents should learn about the requirements of the IEP and how to work effectively with school personnel. Such knowledge is gained by reading books, taking training classes, and attending informational meetings on the topic.

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What can parents do if they feel a school system is not following their child's IEP?

Candace Cortiella: An IEP is an agreement between parent and school and a formal commitment of resources by the school district. Failure to adhere to the IEP is a serious breach of that agreement and can have significant consequences for schools. More importantly, given that it has been agreed that the student needs the services and supports contained in the IEP to make progress, failure to deliver those services is robbing the student of his or her opportunity to learn — an opportunity that comes only once.

If parents feel that the school is not following their child's IEP, they should quickly communicate that concern to the school in writing. Sometimes, simply pointing out the situation can lead to quick action and get the child's program on track. If formal communication doesn't correct the problem, then the parents should request an IEP meeting, during which time there can be a discussion of the specific services not being delivered and what actions will be undertaken to ensure IEP compliance. If a significant amount of service has been lost, parents can request compensatory services. Details on the types of compensatory services and how to obtain them should be requested from the Parent Training and Information Center.

Above all, parents are encouraged to be cooperative and courteous while maintaining diligence with regard to the faithful delivery of services outlined in their child's IEP. It is also important for parents to monitor not only the delivery of the services that have been provided but also the effectiveness of those services. It doesn't matter that a child is getting the correct number of hours of special education instruction in reading, for example, if the instruction doesn't provide substantial results. Parents should pay careful attention to the benefit of the services being delivered. If inadequate progress is being made, regardless of whether the amount of services agreed upon is being delivered, parents need to investigate the integrity of the instruction and seek changes through the IEP process that will lead to student progress. Adequate teacher training is critical to the success of instruction, and the issue of teacher training can and should be discussed when formulating an IEP.

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What can parents do when they believe their child is struggling in school but have been told the child does not qualify for special education?

Candace Cortiella: If parents have been told that their child does not qualify for special education services under the Individuals with Disabilities Education Act (IDEA), that decision should have been made following an evaluation of the student. Such an evaluation will contain valuable information about the particular strengths and weaknesses of the student, and this information can and should be used to develop an intervention plan that will promote better student learning.

Sometimes, students who don't qualify for special education can be found eligible for assistance under Section 504 of the Rehabilitation Act. Frequently, accommodations provided to a student under a "504 Plan" can provide the support necessary to be successful. An overview of Section 504 is available on the Schwab Learning Web site.

Should parents be unable to obtain any kind of specialized services or accommodations under either IDEA or Section 504 or any intervention plan within general education, efforts should be made to supplement the child's school instruction with private tutoring. Sometimes such services are tax-deductible or, depending on the status of the public school the student is attending, funding for supplemental services could be available under the No Child Left Behind Act of 2001.

Parents should investigate all options. Calling the state Parent Training and Information Center can help parents locate information and understand their options when eligibility for special education services has been denied.

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What are the pros and cons of having children repeat grades? Who is responsible for the decision to hold a child back?

Candace Cortiella: Some research has shown that there is little to no benefit to grade retention and that the practice may even increase risks of other problems such as dropout. The decision to retain a student should be made jointly by parents and schools, although there certainly is evidence to suggest that parents are sometimes not engaged in, but simply "informed" of, a school's decision to retain their child. Parents should resist such unilateral decision-making and seek to engage in a dialogue with the school regarding such decisions and the benefits that the school expects to achieve through retention. In addition, schools should not have policies that require failing students to enter special education in order to be promoted.

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What should parents keep in mind when talking with a child about his or her learning disability?

Candace Cortiella: First, and most important, parents should keep in mind that a learning disability is only one part of a child. It's sometimes easy to begin to think that every aspect of a child -- behavior, social skills, motivation, attitude -- is driven by the learning disability. This couldn't be further from the truth.

So, bearing that in mind, parents should talk candidly about the struggles that come with having a learning disability. Parents should attempt to demystify the condition by talking more about the particular effects of a learning disability than talking in terms of complex nomenclature that has no relevance for a child. Parents should keep the learning disability in perspective and try to find, praise, and build upon the child's areas of strength. Resilience has been found to be a powerful characteristic among children with learning disabilities, and the manner in which parents deal with their child's learning disability will help to either build or diminish that resiliency.

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How might a parent's own learning disability impact how he or she responds to their child?

Candace Cortiella: We suspect that there is some degree of hereditability for some learning disabilities. Frequently, a parent discovers his or her own learning disability only when their child is diagnosed. This can be an enlightening experience, allowing for an explanation of a lifetime of struggle that was never understood or identified. Most parents with learning disabilities will be even more passionate about getting proper help for their child than those parents who can only empathize with their child's struggles yet have never known the struggle first-hand.

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What kinds of assistive technologies are available?

Candace Cortiella: Lots! And this is an area where most schools (and teachers) are doing poorly by students with learning disabilities. Individualized Education Program (IEP) teams are required under the Individuals with Disabilities Education Act (IDEA) to consider the assistive technology (AT) needs of all students as part of their IEP development. Parents of students with learning disabilities should make sure this requirement isn't overlooked for their student, as schools will often consider this a requirement more targeted to students with physical disabilities. Yet students with learning disabilities can benefit enormously from both low- and high_tech supports and services. Discovering just the right assistive technologies for a particular student is usually done via an AT evaluation performed by a technology specialist. If one isn't available within a local school, most state departments of education can provide a specialist or a resource. A helpful "AT Quick Wheel" has just been produced by the Council for Exceptional Children that helps IEP teams determine what technologies might be useful.

Some of the most helpful technologies for students with learning disabilities are books-on-tape, screen readers, portable word processors such as the AlphaSmart device, word-processing programs that provide supports such as word prediction, and programs such as the WYNN program that read, underline, and define words. A simple tape recorder can be used to tape a lecture and then be played back for review, better understanding, and to produce notes. Low-tech supports can be as simple as pencil grips, raised line paper, and slant boards. There are lots of resources on assistive technology available to both teachers and parents. One of the best is "Closing the Gap."

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