Resources for Parents

Not necessarily. Many children have acuity (visual clarity) issues that can be successfully corrected by wearing glasses or contact lenses. The Individuals with Disabilities Education Act (IDEA) officially defines a visual impairment as “an impairment in vision that, even with correction, adversely affects a child’s educational performance. The term includes both partial sight and blindness.”  Low visual acuity (partial sight) means vision between 20/70 and 20/400 with the best possible correction, or a visual field of 20 degrees or less. Legal blindness in the US means visual acuity of 20/200 or worse with the best possible correction, or a visual field of 20 degrees or less. Blindness is defined as a visual acuity worse than 20/400 with the best possible correction, or a visual field of 10 degrees or less. Total blindness means the lack of any light perception.

The traditional view of a visual impairment above does not adequately account for visual impairment caused by limitations in the brain’s ability to process visual information. The broadest definition is Neurological Visual Impairment (NVI), but is often referred to as Cortical or Cerebral Visual Impairment (CVI). In some cases, a person’s eyes may be completely normal and function perfectly, but the brain has difficulty seeing and interpreting the information coming from the eyes. NVI may be caused by a brain malformation before birth (congenital brain defects due to genetic or environmental causes at conception and during pregnancy), oxygen deprivation at or after birth, or traumatic brain injury. NVI is often, though not always, associated with other disabilities, and may range in severity from mild to severe.

A concussion often results in temporary difficulty with headaches and vision. With proper care most ill effects from a concussion will disappear completely. Notable possible exceptions include repeated concussions, shaken baby syndrome (babies’ brains can be permanently damaged when a person shakes a baby vigorously, often out of anger or frustration), or traumatic brain injury. The occipital lobe of the brain, located at the back of the head, is principally responsible for processing visual input, but a full 40% of the brain is involved in transmitting or coordinating visual information for other functions of the body.

Your vision specialist should provide you with a good preliminary understanding. For more information, the American Foundation for the Blind maintains an extensive glossary of eye conditions. www.afb.org/blindness-and-low-vision/eye-conditions

For more information about Neurological or Cortical Visual Impairment (NVI or CVI), the following websites are helpful.

CVI Scotland: www.cviscotland.org

Understanding What Children with CVI See (webinar): www.perkinselearning.org/videos/webinar/understanding-what-children-cvi-see

The first step is to visit a vision specialist, such as an optometrist or an ophthalmologist. An optometrist is licensed to perform eye exams and vision tests, and to prescribe corrective lenses. An ophthalmologist is a medical doctor who specializes in vision and care of the eyes, including medical and surgical eye care, and the diagnosis and treatment of visual conditions related to other diseases or conditions.

Not all vision specialists are equally well versed in neurological causes of visual impairment. If you suspect NVI/CVI, consider asking them some questions about their level of knowledge of neurological (brain-based) visual impairment.

The traditional view of a visual impairment above does not adequately account for visual impairment caused by limitations in the brain’s ability to process visual information. The broadest definition is Neurological Visual Impairment (NVI), but is often referred to as Cortical or Cerebral Visual Impairment (CVI). In some cases, a person’s eyes may be completely normal and function perfectly, but the brain has difficulty seeing and interpreting the information coming from the eyes. NVI may be caused by a brain malformation before birth (congenital brain defects due to genetic or environmental causes at conception and during pregnancy), oxygen deprivation at or after birth, or traumatic brain injury. NVI is often, though not always, associated with other disabilities, and may range in severity from mild to severe.

If a visual impairment is suspected or diagnosed by a vision specialist, ask your early supports and services provider or your child’s school for a Functional Vision Evaluation (FVE). This comprehensive process – conducted by a Teacher of Students with Visual Impairment (TVI) –  includes interviews with parents, caregivers, and other teachers; observations of the child in different environments; and formal and informal visual testing to help answer the question of how the child uses their existing vision and visual processing to learn. The FVE helps to translate the clinical visual diagnosis  into an understanding of the needs of the child in school and everyday settings, including what should be considered to help the child learn and function best.

Ideally, a Learning Media Assessment (LMA) should be done at the same time as the FVE. The LMA helps to determine the extent to which the child can learn best using their residual sight (vision), their hearing (auditory) and their sense of touch (tactile), and for what kinds of tasks. Understanding the relative strength of these sensory learning channels is critical for parents and teachers to understand how to help children with visual impairment understand and explore their world and content in school.

An Orientation and Mobility Evaluation (OME) can assess the extent to which the child can perceive where they are and how to move safely from one place to another. This evaluation is conducted by an Orientation and Mobility (O&M) specialist (more info about O&Ms below). For infants and toddlers, the principal location for such an evaluation is in the home and/or day care. For elementary school children, the focus is on school environments, including the classroom, common spaces, gym class, and during recess. Beginning in late elementary school through high school, the focus begins to include safety in community travel, including safety in parking lots, crossing streets and navigating through both familiar and unfamiliar communities.

A significant visual impairment will affect the whole child, including physical, emotional, psycho-social and aspirational elements of their development. Care is needed to ensure the full range of needs and suspected needs are being addressed. Talk to your child’s teachers and vision specialists with any concerns that you have.

A TVI is a certified Teacher of Students with Visual Impairment, a specialty professional within special education who focuses exclusively on the needs of children who are blind or visually impaired, with or without other disabilities. TVIs have seven main responsibilities working with children with a visual impairment, their families, and educators:

• Conducting assessment and evaluation
• Developing strategies for the learning environment
• Recommendations and instruction for accessing the general education curriculum
• Collaboration to ensure that the needs of the whole child are met
• Guidance, counseling and consult for students, parents and educators
• Administrative and data/record keeping
• School-student-family communication and referrals

An O&M specialist is a certified Orientation and Mobility professional who teaches individuals with visual impairments to move and travel safely, confidently, and as independently as possible in their environments. They work with infants, children, and adults usually on a one-to-one basis in a home, school, or in the community.

O&M Specialists have seven main responsibilities working with children with a visual impairment, their families and educators:

• Conducting assessment and evaluation
• Recommending strategies for safe movement in home, school, and community environments
• Direct instruction in functional skills
• Collaboration to ensure that the needs and suspected needs of the whole child are met
• Consultation and training in human guide, cane skills, or other appropriate methods of safe travel for parents and educators
• Administrative and data/record keeping
• School/student/family communication and referrals

Future In Sight (formerly New Hampshire Association for the Blind)) is the largest single provider of vision education services in New Hampshire, contracting with early intervention providers and school districts across the state. Future In Sight is a non-profit with an itinerant (travelling) staff of TVIs, O&Ms, and other specialists who provide services and supports for people with visual impairments throughout their lifespan, including children 0-21. If Future In Sight does not have the capacity to provide vision services with its own staff, they can provide referrals to independent providers and smaller programs who can help. Future In Sight maintains a robust website of information and offers activities for children, youth, and adults with vision loss.

www.futureinsight.org

A child with a visual impairment between birth and up to their third birthday should be connected with a Family Centered Early Supports and Services (FC ESS) provider. There are 15 family support programs in New Hampshire, many connected to the 10 Area Agencies in the state. These programs develop an Individualized Family Service Plan (IFSP) to support both the child and the parent(s). Because so much of a typical child’s learning and socialization occurs through vision, a visual impairment may put an infant or /toddler at risk for developmental delay. Early supports and services are critical during this developmental stage.

www.dhhs.nh.gov/dcbcs/bds/earlysupport/index.htm

To understand special education in New Hampshire and the parent’s role and rights in advocating for their child in that process, the following websites and resources are helpful.

Parent Information Center of New Hampshire: www.picnh.org

New Hampshire Family Voices: www.nhfv.org

Your child likely already has an IEP that will be forwarded to the child’s new school. Over the summer, try to find out who the case manager and the classroom teacher for your child will be. If you can, meet with them or with the Student Services or Special Education Director. Find out the names of the TVI and O&M specialist who will be working with your child and the IEP team this year. It may or may not be the same people as the previous year.

Transition to a new school can be daunting. Consider asking for an O&M Specialist to take your child through the school building(s)  before the school year starts, so they know a bit more about the layout of the classroom and common spaces and can practice getting from place to place. The ideal time is usually late August, after the school’s summer maintenance is finished and the hallways are clear, but before the first day of school. Be sure there is a plan for emergencies, such as fire drills or evacuations. Who will assist your child, and do they know what to do?

What will the teacher and/or paraprofessional need to know to best support the child and promote their independence?  Seating position in the classroom?  Best lighting conditions?  Need for enlarged print?  Does the curriculum need to be presented in an auditory or tactile format?  What is the plan for that, so your child receives the appropriate material in an alternate format at the same time as his/her peers?

The first few weeks of a new school can be overwhelming for everyone. Be patient but persistent in asking questions and receiving answers from school staff, and be proactive with helpful communication as much as you can. Don’t assume that everyone else is the expert on your child!

The more information you can share about your child’s vision, the better!  Recent eye exams, assessments, and planning ahead will all be helpful, as well as what you are noticing at home. Is your child’s vision expected to deteriorate further? If so, ask the school team what needs to be happening now so that your child will be prepared then.

As a parent, you have the right to request an IEP team meeting to address concerns at any time – you do not need to wait for the date of the annual meeting to review your child’s IEP and the plan to address their needs.

Visual impairments are not all that common in children. This may well be the first time that your child’s school or teacher is working with a child who has limited vision or is blind. While the incidence of neurological visual impairment (NVI) is growing rapidly, many educators are not yet familiar with its signs, symptoms, and needed modifications. In these cases, working with a Teacher of Students with Visual Impairments (TVI) and an Orientation and Mobility (O&M) specialist is essential in guiding both you and the school team on what needs to be understood, considered and undertaken to best support your child’s learning, movement and independence.

This depends largely on your child’s age, type of visual impairment and any co-occurring disabilities. In general, try to expose your child to as many experiences as possible, knowing that the use of other sensory channels – such as hearing and touch – may as important, or more important, than vision for your child. Talk with your TVI or O&M specialist about the full range of needs that your child may have at home, in school and in the community and how you can support their development.

Specific recommendations will depend on the needs of your child, but consider such things as seating position in the classroom; lighting conditions and glare; enlarged print or magnification; an iPad or similar tablet with some of the many apps available for children with a visual impairment; a refreshable braille display; a laptop with the accessibility features turned on, etc. In almost all cases, the TVI’s direct instruction for the student in how to access content should be supplemented with consultation and training for the school staff and parents.

An Assistive Technology Evaluation (ATE) builds on a Functional Vision Evaluation (FVE) and a Learning Media Assessment (LMA) to match the best technologies with the student’s needs and learning channels. An ATE considers what tasks the student needs to be able to complete, what they can do, and the features of technology solutions that best meet student needs and capabilities.

An ATE usually involves trialing of different types of equipment, and consult with the school team and parent can support everyone’s understanding of the technology and how best to support the student’s use of it.

The equipment and technology necessary for the student to access the curriculum should be included in the student’s IEP, and the school should provide such equipment. If the equipment is portable and necessary for the student to complete homework, then the student should be allowed to bring it home and back to school each day as needed. If the child has been included in the state’s APH (American Printing House for the Blind) annual count, parents have full access to the materials and equipment available through New Hampshire’s Accessible Educational Materials and Accessible Instructional Materials libraries.

www.education.nh.gov/instruction/special_ed/nhaim.htm

In addition, the Assistive Technology in NH program (ATinNH) offers different types of equipment for loan or demonstration at no cost.

www.atinnh.at4all.com

With very few exceptions, children with a visual impairment should have an IEP rather than a 504. An IEP (Individualized Education Program) is a comprehensive education plan that serves as a detailed roadmap for a child with special education needs. It’s formal and legally binding, and is the result of a required comprehensive evaluation. An IEP includes comprehensive information about a child’s diagnoses, specific needs, established goals, recommended services, and accommodations, and pretty much anything else pertaining to the child’s unique educational needs.

A 504 plan is also a plan, but it’s more of a general accommodation that acknowledges how a child will be learning within the school in general, and does not equate to a diagnosis or formal special education services. The name of the document arises from Section 504 of the Rehabilitation Act of 1973 which prohibits discrimination against people with disabilities who are in need of accommodations. This is issued to students who are able to participate in a general education classroom, but still need accommodations that the school must provide.

Differences between the two:

• An IEP is an in-depth document for all students who require special education services. A 504 plan can accommodate students who can learn within a general education environment with stated modifications.
• A 504 plan does not necessarily mean a child qualifies for special education services as per the child study team or districts’ respective equivalent.
• 504 plans can be utilized on an as-needed basis – for instance, physical accommodations for a student with a temporary injury. IEPs constitute a fully active special education plan for students and are renewed annually.
• Everything included in a 504 can be included in an IEP, but not everything in an IEP is included in a 504.
• An IEP can provide services and supports that a 504 plan can’t, such as specialized instruction.
• A more detailed side-by-side comparison of the two is available at: (weblink)

IDEA (Individuals with Disabilities Education Act) guarantees the rights of parents in the IEP process while developing the necessary educational programs and decisions that will benefit their child. It is, therefore, important for parents to exercise those rights fully and responsibly. The best IEP processes are those where there is good communication, mutual respect, and collaboration among school personnel, specialists, and parents as equal partners.

Right To Participate

Every parent has the right to participate in all decision-making meetings in order to develop, monitor, update, and renew an IEP for their child. Topics include eligibility for special education, evaluations, educational placements, and any matter pertaining to their education.

Right To Written Notice

In the case of any changes in eligibility, evaluation, and educational placement initiated by the school district, the parent must receive prior written notice.

Right To Consent

Parents have the right to provide an informed, written consent for the special education IEP before the assessment process or the provision of special education and related services. This consent is also necessary before any changes are made to the IEP already in place. Parents should only sign their consent once they have a clear understanding of the IEP document. Parents must also be provided with an interpreter if their native language is different from English or in case they are deaf. Parents have the right to refuse the evaluation or educational placement of their child.

Right To Access Educational Records

Any parent who has a child enrolled in special education and possesses an IEP has the right to request, inspect, and evaluate copies of educational records.

Right To Request A Hearing

In the case of any complaints concerning the provision of Free and Appropriate Public Education (FAPE) to the child, parents have the right to a hearing. During the hearing, the parent can request that an advocate, attorney, or if appropriate, their child be present. Furthermore, parents have the choice to make the hearing public.

Right To Keep Child In Current Placement

Parents have the right to disagree with any proposals presented to change their child’s placement. When a disagreement surfaces, the child should remain in their current program until resolved.

Right To Mediation

When a disagreement arises, parents are free to seek voluntary and impartial mediation to help find a mutually agreed-upon solution regarding the child’s special education IEP.

Right To Information On Disciplinary Action

Children enrolled in special education have specific rules regarding their suspension or expulsion. If these instances extend for more than ten days, an IEP team meeting should be called to assess how their disability could be contributing to the child’s misconduct. Additionally, the participants should discuss the potential for an alternative placement as an alternative.

The IEP must be reviewed at least once per year by the team, including parents, to review progress toward identified goals. These meetings can happen more frequently if necessary.  A triennial review occurs once every three years and is designed to gather new evaluations to determine if the child is still eligible for special education services and, if so, how the educational plan should change.

The Parent Center Hub has a very good explanation of each part of the IEP. IEP documents may be quite lengthy, so it is good to have an understanding of the purpose and importance of each section.

www.parentcenterhub.org/iepcontents/

In New Hampshire, three organizations (below) are available to help you understand and navigate the IEP process. They can also help you understand your rights and advocate for your child. They are:

Parent Information Center of New Hampshire: www.picnh.org

New Hampshire Family Voices: www.nhfv.org

Disability Rights Center of New Hampshire: www.drcnh.org

Each IEP is customized and will be different, but a helpful checklist of considerations can help you evaluate your child’s IEP.

An explanation of federal law is here:

www.familyconnect.org/info/education/know-your-rights/idea-what-parents-need-to-know/135

One piece of the law that many people do not know is the requirement that children with a visual impairment must receive instruction in braille unless the IEP team determines there is not a need for the child to learn and use braille.  In other words, the need for braille must be disproven; otherwise, a child who is blind or visually impaired must be offered the opportunity to learn braille as an essential piece of literacy.  The evaluations that can guide the IEP team in this determination are the Functional Vision Evaluation (FVE) and the Learning Media Assessment (LMA).  Both evaluations can be conducted by a Teacher of Students with a Visual Impairment (TVI).

NH state law is consistent with federal law.

Start first with a candid conversation with your child’s case manager, teacher and IEP team, if necessary.  Don’t assume that teachers understand everything about your child; they often don’t see your child in the same context that you do. You are an essential partner with the school in your child’s education.  Mutual respect, timely communication, and a balance of candor and active listening will most often lead to positive results.

If you feel you are not being heard, consider asking for an advocate who can attend meetings with you and support your efforts on behalf of your child.  Organizations that provide advocacy services are listed in FAQ 19, and a Google search for “special education advocate in NH” will also show several independent advocates who may be helpful.

A last resort, and a legal option available to parents, is to request a hearing and seek representation by a lawyer.  The Disability Rights Center of New Hampshire (https://drcnh.org/) can help a parent decide if this is an appropriate course of action.

The National Association of Parents of Children with a Visual Impairment (NAPVI) works to provide information and support for parents wherever they are in the country. Since visual impairment is a low-incidence condition (it is relatively uncommon), having a national group of parents with whom to interact may be helpful.  (http://www.familyconnect.org/directory/profile/national-association-of-parents-of-children-with-visual-impairments-national-headquarters/12) 

The Lighthouse Guild offers a parent Tele-Support Group.  This may be particularly helpful if your child has a rare visual condition.  Often, you may be the only parent of a child with a visual impairment in a school or district; if the visual condition is rare, it can be even more difficult to connect with other parents in a similar situation.  (https://www.lighthouseguild.org/patients-families/tele-support-services/support-for-parents/)

Some organizations exist to support families with a specific visual impairment.  NOAH, for instance, is the National Organization for Albinism and Hypopigmentation (https://www.albinism.org/).  People born without a normal amount of pigmentation or color in their skin often have a related visual impairment.

Ask your vision education specialist.  Many TVIs and O&M Specialists work with children and families across multiple school districts and geographic regions.  They may be able to connect you with a parent whose child has a similar condition.

Future In Sight is launching NH Parent Connect and offers regular events and activities for children, youth and adults who have a visual impairment.  This is often a way to connect with others in a fun, supportive and safe environment.  Events range from sewing to kayaking to hiking to holiday activities and more.  (https://futureinsight.org/events)

Because there are relatively few children with a visual impairment, weekly activities after school and on weekends designed just for them are nearly non-existent.  Parents should consider ways that their child might participate in the same activities as their sighted peers.  A TVI or O&M Specialist might suggest ways that a child could participate safely in activities such as choir or music, sports or modified sports, debate, math or science club, and outdoor experiences for instance.  Introducing your child to a broad range of sensory and learning experiences helps them (and you) discover what they are capable of doing.  Never underestimate the power of sheer joy!

Several organizations make opportunities available for children and students with a visual impairment.

Camp Inter-Actions (NH): summer (http://inter-actions.org/) 

Living On Your Own (LOYO program in Maine): summer, teens only (https://www.ccmaine.org/news/post/loyo-program-empowers-teens-with-visual-impairments)

LEAP program (VT): summer, ages 14-24 (https://resourcevt.org/training-programs/leap/)

The Association of Blind Citizens offers periodic programming and experiences for blind and visually impaired youth in New Hampshire. (https://blindcitizens.org/)