Partial vision loss that cannot be corrected causes a vision impairment known as low vision.¹ “Low vision” is a general term for people with visual impairments that interfere with their activities of daily living (ADLs) and quality of life. Low vision care is not a cure. It is about rehabilitation, finding new ways to accomplish the tasks of daily life (e.g., helping children in school and play).

Pediatric cataract surgery in childhood is often complicated by preexisting amblyopia, sensory nystagmus, strabismus, and abnormal binocularity. In infancy, the eye may be microphthalmic with maldevelopment of both the anterior and posterior structures in the eye. Low vision of at least a moderate degree is very common in this population. Even when the resulting postsurgical visual acuity is normal, these eyes often have residual refractive error and are all rendered presbyopic by the surgery. There is a high potential for interference with ADLs in every child operated for cataracts. A customized rehabilitation plan can be developed for each aphakic or pseudophakic child. Surgery often produces dramatic improvements in best-corrected visual acuity. However, the loss of accommodation that accompanies removal of the crystalline lens and the changing refractive error that accompanies eye growth can challenge even the child with a 20/20 outcome. In addition, many children have moderate or even severe low vision after surgery as a result of delays in presentation for surgery or anatomic abnormalities that cannot be normalized with surgery. The low vision occupational therapist and the low vision optometrist or ophthalmologist can assist the pediatric ophthalmic team in many ways. Vision rehabilitation services are underutilized for aphakic and pseudophakic children. Children presenting with impaired visual function after corrective surgery will benefit from low vision rehabilitation services that help optimize visual functioning with regard to the execution of ADLs. Many, if not most, of these children qualify and would benefit from visual rehabilitation. In addition, legislation designed for all forms of childhood visual impairment apply to this special group of patients.

Landmark federal mandates have had a significant influence with regard to early intervention services in the United States. In nearly every instance, children with visually significant congenital cataracts qualify for these early intervention services. Children may present for surgery at any age, and the law now provides for services beginning even in infancy. The pediatric ophthalmic team should enroll these children into the early intervention system based on the high risk for visual developmental delay and permanent visual impairment.

In 1990, the Education for All Handicapped Children Act, which had mandated free and appropriate public education to all children with disabilities 3 to 21 years of age, was reauthorized in P.L. 101-476² and renamed the Individuals with Disabilities Education Act (IDEA). In 1997, IDEA amendments under P.L. 105-17³ specified that services were to be delivered to infants from birth to 36 months under Part C, which became law in 1998. With the implementation of these laws, the federal law requires that eligible infants receive comprehensive, multidisciplinary evaluations and that an Individualized Family Service Plan
(IFSP) be developed for the infants in conjunction with their family. The primary intent of the law was to enhance the development of handicapped infants and toddlers and to minimize their potential for developmental delays; to enhance the capacity of families to meet the special needs of their infants and toddlers with handicaps; to provide assistance to states to develop and implement a statewide, comprehensive, coordinated, multidisciplinary, interagency program of early intervention services for infants, toddlers, and their families; and to expand and improve existing early intervention services being provided to handicapped infants, toddlers, and their families.²

Eligibility for IDEA identifies three criteria:

The IDEA identifies a variety of services that may be provided through early intervention when indicated. To meet the infant’s needs as specified on the IFSP, services specific to the visually impaired and/or multiple handicapped may include the following: medical services for diagnosis and evaluation, nursing services, nutritional services, occupational services, physical therapy services, audiology services, speech and language services, social work service, special education services, vision services, assistive technology devices, family training, counseling and home visits, and coordination of services. The IDEA mandates a multidisciplinary service system and multidisciplinary assessments for eligible infants, which has been interpreted as three models for teaming that include multidisciplinary, interdisciplinary, and transdisciplinary.

The medical model for the visually impaired would be considered to be a multidisciplinary approach in that each professional conducts his or her specific assessments and develops and implements resulting interventions. This information is shared mainly through written reports. The medical model would include an ophthalmologist (MD) to diagnose and treat the medical needs as related to the eye and vision. A referral would then be made to the low vision optometrist (OD) or ophthalmologist for a functional visual assessment and to determine appropriate magnification and select any devices (optical, nonoptical, and electronic) or techniques that may be indicated to enhance optimal vision performance. The MD or OD would then make a referral to the low-vision occupational therapist who would address the child’s functional skills as they relate to all aspects of life including the academic requirements. Depending on the child’s diagnoses and identified needs, the combined findings of the ophthalmologist, the low vision optometrist/ophthalmologist, and the low vision occupational therapist may include recommendations for other key service providers for the visually impaired.

The combined efforts of the medical and educational representatives would represent the desired interdisciplinary model. This service delivery model is used to determine appropriate interventions in a coordinated approach to low vision services. It requires a concerted effort to share key providers’ assessment results in order to collaboratively determine the optimal action. Once the detailed plan of actions is determined, frequent communication among key providers (Table 54.1) is needed to modify the actions in response to changes in the child’s growth and development, and his or her academic and social environment. A completely new action plan may be needed if there are significant improvements or deteriorations in visual functioning.

Educational and medical services providing for infants/toddlers/children/adolescents with low vision are charged with caring for the sight and vision of this visually impaired population. This includes the health of the eye, medical treatments, prescription of lenses, assessments for functional use of vision, and work toward improvement of functional vision with and without prescribed low vision devices (optical, nonoptical, and electronic).⁴ These professionals are trained to extend the functional vision for the visually impaired child to become as visually independent as possible and to gain better control over their environment. The low vision rehabilitation specialists assist in the appropriate selection and integration of accommodations, adaptations, and assistance. The framework of treatment intervention addresses compensatory skills, orientation and mobility, ADLs (developmentally age appropriate level), sensory efficiency, academic/career education, recreation and leisure skills, social interaction, and self-esteem and determination. It is important to understand that these services are needed if the child is a print reader, a dual media reader (Braille and print), or a Braille reader. With the proper assembly of services, the visually challenged child and his/her family will be able to make good choices, based on functionality, whether to use vision and/or to choose nonvisual approaches.

It is important for the key providers of low vision services to coordinate services and resources and to make referrals to appropriate state and federal agencies, special schools, and local educational schools districts. This coordination implies that the medical model providers refer to educational providers and vice versa. It is imperative that the educators of the visually impaired advocate for medical-clinical low vision evaluations of the ophthalmologist, low vision optometrist, and occupational therapist. It is also imperative that the medical providers advocate and refer for the appropriate services for the visually impaired in the educational system. To better ensure comprehensive low vision care for children, consideration should address the following areas⁴: sociology, public policy, medicine, education, economics, and research.