Downloadable “Overview of the Service System for Children with Blindness or Low Vision” Toolkit
In a hurry? Want to share FamilyConnect’s information with a friend or family member who doesn’t have easy access to the Internet? These printable toolkits, available in both English and Spanish, offer the crucial information that families need to know about the service system for children with blindness or low vision.
Overview of the Service System for Children Who Are Blind or Low Vision
Services for children with blindness or low vision are offered by a wide range of agencies and organizations at the community, state, and national levels. Services and the agencies that provide them may vary from state to state. This is especially true with regard to services for infants and toddlers.
Early Intervention Services
The Program for Infants and Toddlers with Disabilities (Part C of Individualized with Disabilities Education Act (IDEA) is a federal grant program that financially assists states in operating special education services for children under the age of three.
State early intervention agencies, also known as Part C early intervention agencies, may be housed in state departments of education, health, human services, or rehabilitation, although some are in agencies outside the state system.
These agencies usually provide referrals to local programs, the local school district, agencies and organizations for people who are blind or low vision (either national or local), or special schools for blind students. The services provided typically include assessment of the child’s condition and needs, developmental enrichment, coordination of health and social services, and an Individualized Family Service Plan (IFSP) for both the child and the family outlining the services to be provided.
Services to infants and toddlers are provided mainly in the home by itinerant (traveling) professionals, although some are offered in organizations or centers, where a variety of special education and related services are available in the same place.
Early intervention services, including services from a teacher of students with visual impairments (TVIs) and an orientation and mobility specialist (O&Ms), are in effort to support parents or caregivers, providing information needed to best meet their children’s needs. These services are only delivered with voluntary consent from parents or guardians.
The Individuals with Disabilities Education Act (IDEA) Part B establishes the right to a “free, appropriate, public education” that is, an education appropriate to the needs of the individual child for all children from three to the 22nd birthday, regardless of disability. In addition, this education must be provided in the “least-restrictive environment” appropriate for the child—that is, to the extent possible in the same settings as children who do not have disabilities—and families must be involved in the planning and implementation of services for their children. Educational services are also provided under Section 504 of the Rehabilitation Act of 1973; these include classroom accommodations or adaptations such as the provision of materials in large print or other accessible formats.
The vast majority of students who are blind or low vision attend their local community public schools. Most attend regular classes and receive separate instruction from a TVIs and an O&M in order to receive the additional skills unique to blindness or low vision that they need to learn. These skills are known as the expanded core curriculum and may include reading and writing in braille, travel skills (known as orientation and mobility techniques or O&M), and optimal use of low vision.
Children may be taught by an itinerant teacher who travels to different students at different schools within the school district or neighboring districts, or a TVI may be assigned to a resource room at a given school where he or she meets with several students who are blind or low vision during different periods of the day. Some children may attend a special school for children who are blind or low vision, either as day students or residential students. Some programs are geared toward students with single or mild multiple disabilities and emphasize academic programs and an expanded curriculum. Others may focus on functional lifelong learning programs for children with severe multiple disabilities, while still others provide a full spectrum of educational opportunities.
In addition to the legal requirements of IDEA already noted, this legislation requires that an Individualized Education Program (IEP) be written for all students with disabilities in the educational system. This plan is developed by an educational team, including teachers, special educators, a TVI, an O&M specialist, and other professionals as appropriate, parents or family members, and sometimes the student. This team assesses the student’s abilities, strengths, and needs; determines the most appropriate educational placement; sets educational goals and objectives for the student; and specifies the special educational and related services that he or she will receive.
Among the services to be included in the IEP are supplementary aids and services that enable the student to make the best use of his or her education. For example, a student may need to have books transcribed into braille, or a student with low vision may need a low vision device such as a magnifier or a closed-circuit television (CCTV) to complete his or her schoolwork. Generally speaking, the TVI will make arrangements for these services and alert the family to what is needed.
IDEA requires that, beginning no later than age 14, students receive transition services to prepare them for life after high school. The student’s IEP will incorporate goals and activities to begin preparing the student for this transition and the services that will be needed, including preparation for independent living, enrollment in a vocational program or college, career and vocational planning, and the like. Connections also need to be made to services that students may be eligible for after school and as adults. For example, rehabilitation services, such as vocational rehabilitation, may provide financial and other assistance while a young person attends college or trade school, looks for work, and gets established in a new job.
Low Vision Services
Low vision services assist individuals, regardless of age, to make the best use of their vision, with or without the assistance of special optical devices. Individuals are said to have low vision when they are severely low vision, even with conventional eyeglasses or contact lenses, but are able to use vision at least some of the time for some everyday activities. These services include a low vision evaluation, a specialized examination to assess the abilities and needs of an individual with low vision; prescription of low vision devices, such as magnifiers or telescopes, and training in their use; and training in adaptive techniques to make optimal use of vision.
Low vision services may be located in agencies of and for people who are blind or low vision, hospitals, private rehabilitation agencies, university settings, and private ophthalmological and optometric clinics or practices. In addition, referrals may be obtained from national blindness organizations, state rehabilitation services, agencies or professionals that provide other visual impairment services, state or national ophthalmological and optometric associations, and nearby universities that train professionals in the field of blindness and low vision.
There are agencies that provide social and recreational opportunities for children with blindness or low vision and their families. It is important to recognize the need to locate both peers and mentors who can provide support, information as well as a fun time. Schools for the blind may offer summer programs that provide children with an excellent opportunity to have fun and be with their peer group. Many groups offer camps located throughout the country. To find out about upcoming activities offered in your community or nationally, check out the calendar of events or register to receive email alerts about them.
Services for Families
It is also important to recognize the needs of other family members. There are some programs available for siblings, grandparents, and other family members to provide for the specific needs. Families may come together through the use of the message boards, and other parent-focused groups. In addition, each state will have a parent training and information center that will have parent-to-parent groups that provide information and support for parents. These groups are often run by and for parents of children with disabilities and can be helpful in assisting you in understanding your rights and how to work with your providers to obtain the services you need.
Agencies that provide services for young children who are blind or low vision also provide assistance to families. For example, they may have counseling or support groups and social work services in addition to providing information about adapted communication techniques and developmental stimulation.
Who Is On Your Team?
The most important members of the team will be professionals who specialize in working with children who are blind or low vision and those who work directly with them in the classroom:
Teacher of students with visual impairment (TVI): The teacher of students with visual impairment (TVI) is a professional with training in how an eye condition affects a child’s development and learning and in the strategies and tools that can assist your child in learning about the world, performing everyday activities, and participating in the regular curriculum in school. Regardless of your child’s age, the TVI will be a central member of your team (see “The Central Role of the Teacher of Students with Visual Impairments” for more information).
- Orientation and mobility (O&M) specialist: The O&M specialist helps children learn to travel safely and independently in their environments. They also teach concepts about the body, space and direction, movement, and the physical environment to children of all ages. Even before a baby is crawling or walking, the O&M specialist can give you ideas on how to help him learn about his own body and the world around him. Orientation and mobility is considered a related service under IDEA. (See “Working with the Orientation and Mobility Specialist.”)
- Early interventionist: If your child is younger than three years old, your team may include an early interventionist, a professional who is trained to support families of young children with disabilities. Many early interventionists have a strong background in child development. However, the early interventionist on your team may or may not have experience and expertise related to working with a child with a blindness or low vision. Therefore, if your early interventionist is not a trained TVI, it’s important for the early interventionist to collaborate with a TVI.
- Classroom teacher: Most students with blindness or low vision today attend a public school and are taught in general education classrooms with their sighted peers. If your child is in a regular classroom, the general education classroom teacher will be a key member of the educational team. This teacher will work closely with the TVI to get information about the best ways to teach your child and get his class materials (see “The Central Role of the Teacher of Students with Visual Impairments”). However, the classroom teacher has the responsibility for teaching him the school’s core curriculum.
- Paraeducator: Paraeducators (who are also called teachers’ aides, paraprofessionals, school aides, or teaching assistants) are sometimes assigned to work with students who are blind or low vision under the supervision of the classroom teacher and the TVI (see “Teaching Assistant Responsibilities” for more information). They may be assigned to the classroom or to the individual student who is blind or low vision.
- Other members of your child’s educational team may be specialists in other areas, depending on their individual needs. These team members may or may not have experience with children who are blind or low vision. Some professionals who are related service personnel commonly found on educational teams include:
- Occupational therapist: An occupational therapist focuses on the development of your child’s fine motor skills. These are the skills he uses for eating, dressing, keyboarding at a computer or electronic notetaker, and other tasks mostly using his hands.
- Physical therapist: The physical therapist’s specialty is your child’s gross motor skills—those used for activities such as crawling, sitting, walking, and running.
- Speech therapist: Speech therapists—also known as speech and language pathologists—focus on helping young children learn to communicate, improving speech and communication, and developing alternative methods of communication for children with multiple disabilities. Many speech therapists also have expertise in helping young children learn eating skills.
The educational team might also include any of the following professionals, and if your child has multiple disabilities, there may be others as well:
- special education teacher
- principal or other school administrator
- social worker
- pediatrician or medical doctor
- specialist in low vision
- assistive technology specialist
Essential Elements of the IEP
When you meet with your child’s educational team to write her IEP, you will find that the plan has a number of different sections. The following elements all need to be explained or identified in the plan. You may find the terminology—which comes from the law that created the IEP—confusing at first, but it will be helpful to become familiar with it ahead of time.
- Your child’s present levels of educational performance: This section describes your child’s current status, what she can do, and what she knows at the time the IEP is written. This includes a description of how your child’s blindness or low vision affects involvement and progress in the general curriculum.
- Measurable annual goals: Measurable goals include what the IEP team considers to be the priorities that need to be addressed so that your child can progress in the general curriculum and to help your child learn as independently as possible. These include other educational needs that result from her disability (often termed the expanded core curriculum). Annual goals describe what your child should learn in one year and must be measurable so that you can tell when your child has attained them.
- Special education, related services, and supplementary aids and services, program modifications, and supports for school personnel: This section describes the supports and services your child needs to attain her annual goals so that she can progress in the general curriculum and the expanded core curriculum and participate with other children without disabilities in school activities.
- Related services are additional services required to help your child benefit from her special education, such as transportation, hearing services, physical therapy, counseling, and the like.
- Supplementary aids and services would include assistive technology, adapted materials such as braille or large-print textbooks, or help from a paraeducator.
- Program modifications include accommodations and modifications that may need to be made in teaching or testing your child.
- Supports for school personnel includes training for your child’s classroom teacher and other school personnel that will, in turn, benefit your child’s learning.
- Beginning of the services and the anticipated frequency, location, and duration of those services and modifications: This statement includes the projected date for the beginning of services as well as for how long and where your child will receive each of the special education and related services, accommodations and modifications, support, and supplementary aids and services that she needs.
- Extent, if any, to which your child will not participate with nondisabled children in the general education class and other school activities described: Because IDEA requires that students with disabilities be educated with other children who do not have disabilities in the regular class environment to the greatest extent possible, any proposed deviation from that principle needs to be documented.
- Testing accommodations: This statement addresses any accommodations your child will need in taking state- or district-wide tests of students. If the IEP team decides that your child will not participate in a particular test, the abatement must include the reason why and how she will be alternatively assessed.
- How progress will be measured and how the child’s parents will be regularly informed: The IEP must indicate how your child’s annual goals will be measured and when periodic reports will be sent to inform you of your child’s progress toward the goals. You must receive this information at least as often as report cards or other periodic reports are sent out for children without disabilities, although you may want to encourage the school to send this information to you on a more frequent basis.
Your child’s IEP is the key document that will govern all the special services he or she receives during the school year. Your presence as a member of the team that writes this document enables you to share your special knowledge of your child and her abilities and needs. Understanding the IEP process and its components will help you work closely and productively with the school system to obtain the educational services that will be important to your child.
When You Have Concerns
You may not always agree with other members of your child’s educational team about the most appropriate plan of action for your child. The TVI is usually the team member who is most knowledgeable about blindness or low vision and is a good person with whom to discuss your concerns.
Before meeting with this teacher, ask for any written reports or data he or she has that can help you understand your child’s situation.
- Ask for copies of current assessment reports, including the functional vision assessment and learning media assessment, if you do not already have them. These reports should include recommendations, not just a list of information gathered through the assessment process. Ask the teacher to review these reports with you.
- If a functional vision assessment and learning media assessment have not been conducted with your child, ask to have these assessments completed.
- Also, ask to see the data that the teacher has on the progress your child has been making toward the Individualized Educational Program (IEP) goals. Use this data to prepare ahead of time so that you are ready to explain your concerns and have information to back up any requests for changes. When you sit down to talk with the TVI, focus on the changes in services that you believe your child needs, not the performance of any particular team member.
- State your specific concerns about your child’s current education. For example, if you are concerned that your child is struggling in reading class and that large print does not seem effective, share this observation and ask about the opportunity for your child to learn braille.
- Take notes or ask to record the meeting so that you’ll have a copy of what was discussed. You might want to ask someone to come with you to take notes.
- Send a follow-up letter or email summarizing what was discussed so that everyone has a written record.
If the TVI does not have information to share with you about what he or she has been working on with your child and how they have been progressing, you have reason to be concerned. Ask for a meeting with the teacher and his or her immediate supervisor to discuss this and your other concerns.
In many instances, clear communication and negotiation will produce positive results. Ultimately, though, if you have tried these strategies and still have disagreements about the way your child’s education is being handled, you may need to rely on the rights and safeguards for you as a parent that are built into the Individuals with Disabilities Education Act (IDEA). It’s important to be familiar with the law and with the procedures for making complaints in your school district so that you will know what your options are before such a need arises. If you find yourself in these circumstances, it may be helpful to contact national parents’ groups and organizations providing services to blind or low vision children and adults who can provide guidance, advice, and support.
FamilyConnect is an online, multimedia community created by the American Foundation for the Blind (AFB) and the National Association for Parents of Children with Visual Impairments (NAPVI). This site gives parents of children with blindness or low vision a place to support each other, share stories and concerns, and link to local resources. The site also features a mom-authored blog, inspiring video testimonials from families, and articles authored by parents and experts in the field of blindness on multiple disabilities, technology, education, and more. From the personal to the professional, families will find all the resources they need to raise their children from birth to adulthood.
The American Foundation for the Blind and the National Association for Parents of Children with Visual Impairments would like to thank the Lavelle Fund for the Blind, Inc. and the Conrad N. Hilton Foundation for their generous support as charter sponsors of FamilyConnect. We are also grateful to the Annie E. Casey Foundation and Morgan Stanley for their support.
Copyright © 2009 American Foundation for the Blind. All rights reserved. Material provided on FamilyConnect.org is intended for informational use only and is not a substitute for professional medical or legal advice. If you have any concerns about your child’s health or legal rights, please contact your family health provider or attorney.