Educating the Child with Velo-Cardio-Facial Syndrome:
A Handbook for Parents and Professionals
Donna Landsman, M.S.
Accessing Services-Referring a Child for Special Education
Most children with VCFS will require some type of special education service as they progress from kindergarten through college age. Many children with this syndrome are served in the public schools through the IDEA Act (Individuals With Disabilities Education Act) in the categories of Speech and Language, Learning Disabilities and Other Health Impairment. Parents may refer their child for special education testing by contacting their local school district. This initial contact can be made as early as age three.
Once a referral has been made, the school district must convene a special education team to evaluate the suspected area(s) of need. School districts have 90 days in which to do this evaluation, develop an education plan and, if required, offer placement. Parents must give their permission for their child to be tested. Parents are a part of this team and can make suggestions regarding which areas to test. They can also provide information to the team that they have gathered through outside testing, medical reports, articles, studies, etc.
Once a child has been evaluated, the team will meet to determine if the child meets the criteria for needing special education services. This determination should be made based on norm based test scores, classroom performance indicators, medical records, and interviews with teachers and parents. No single test (such as an IQ test) can be used as the sole determining factor as to whether a child should qualify for special education services. The team must consider several assessments to make this determination.
Children with VCFS often have many deficits which should be explored when considering special education placement. Many VCFS children do not function well in a large group setting without reteaching / small group opportunities for learning. Although the type of program needed will vary from individual to individual, there are areas of need that seem to be shared by a great many children with this syndrome. Professionals should take a close look at these target areas when a child is referred for evaluation.
The team should consider some or all of the following areas:
- Speech and Language Needs–articulation problems, expressive language delays, auditory processing deficits, problem solving difficulties, reasoning difficulties, word finding problems, difficulty understanding idioms or words with multiple meanings, problems following multiple directions.
- Learning Disability/Other Health Impairment Issues–Memory difficulties, math reasoning impairments, problems with written language elaboration, reading comprehension delays (decoding skills may be at a normal level), difficulty understanding cause and effect relationships, reasoning difficulties in social studies and science, lack of ability to apply learned knowledge to novel situations, attention and organization problems, hypotonia (children are tired and lack stamina), fine motor co-ordination delays (writing, cutting, keyboarding, coloring), hearing deficits (many children have frequent ear infections or a hearing loss), physical therapy needs, lowered immune system causing frequent illnesses, vision/tracking problems and behavioral difficulties (easily frustrated, low self esteem, poor coping skills, difficulty getting along with peers, teased, etc.)
Writing the Individualized Education Plan (IEP)
Once a child is determined to have a special educational need, the team will convene and draft an IEP (Individual Education Plan) to address the child�s deficits. The IEP is a very important document as it spells out the school district�s commitment to provide services to the child. The IEP should consist of easily measurable goals, assessment methods to determine progress, the time the child will receive special education services and who will deliver these services. Parents should familiarize themselves with IEP�s so that they come to this meeting prepared to offer suggestions regarding accommodations they feel will benefit their child.
Some accommodations that might be considered are:
- Specialized instruction in the academic areas emphasizing direct instruction and multiple practice opportunities
- modified tests and assignments
- 1-1 or small group instruction/reteaching
- additional time for tests
- note taking services, study guides
- preferential seating
- specialized behavioral plans
- provisions to allow note cards, calculators, and formulas
- enlarged print
- books on tape
- assignment notebook checks
- extended time for assignments
- test retakes
Resolution of Disputes
If parents disagree with either the evaluation results, the IEP contents, or the implementation of the IEP there are provisions in the IDEA Law for mediation and/or a due process hearing. Parents are strongly encouraged, however, to work with their child�s school to address their concerns without progressing to a more adversarial arena. An IEP meeting can be called at anytime if there is evidence that progress is not being made or if there are concerns that promised services are not being provided. Usually these problems can be resolved in a friendly manner. If this approach fails, consideration should be made to a totally different placement, a new set of teachers, involving a VCFS expert to better explain the syndrome, or perhaps a new environment within a district. Mediation and due process hearings should be used as a last resort.
A Hopeful Future
Many children with VCFS can progress in school at a reasonable pace if they are given special assistance and accommodations. Some can function in a regular classroom environment with added individual help, tutoring at home, and perhaps a modified curriculum. Others will need a more intensive program in a small group setting. Teachers most likely do not know a great deal about this syndrome and will need to be educated as to a child�s needs.
Parents must become informed and learn to advocate for their child, since many VCFS children have a very difficult time expressing their needs themselves. Above all, parents and professionals must be flexible, supportive and encouraging to children with this syndrome.
Parents must understand that schools have limited resources and can only do so much. Parents will need to oversee homework completion and work with teachers to ensure a positive outcome for their child. Schools must understand that many VCFS children have undergone multiple surgeries, have frequent illnesses and need many years of therapy to address all of their needs.
Deficits in problem solving skills and “common sense” will put these children at risk for school failure. Learning for these children is not easy and, faced with rigid teachers and unbending rules, it can be insurmountable. VCFS children may need multiple opportunities to attempt a skill, since most will not progress at the same rate as their peers.
With structure, realistic expectations, and praise, however, VCFS children can be very successful. Many graduate high school, complete training programs, become employed, married and live productive lives. With advances in medication and a better understanding of the chemistry of the brain, it is not unrealistic to expect that things will become easier for VCFS children in the future. Current research worldwide on this syndrome is progressing rapidly and is offering new hope. In the meantime, both parents and professionals will need to work together to make school a positive experience for children affected by Velo-Cardio-Facial Syndrome.