See the Whole Person: AMD & Low Vision Awareness Month and the Planning That Protects Independence

February is Age-Related Macular Degeneration (AMD) and Low Vision Awareness Month, a national observance led by Prevent Blindness — the nation's leading eye health and safety nonprofit — and supported by the National Eye Institute. It is a month dedicated to education, early detection, and the kind of candid conversation that can change outcomes for millions of Americans living with vision loss.

More than 6.6 million Americans have a visual disability. Nearly 20 million Americans aged 40 and older have been diagnosed with some form of macular degeneration, and by age 75, roughly one in three people in the United States will have some form of AMD. Vision loss is not a distant concern for our community. It is present now, and it is growing.

At Shared Horizons, we serve individuals across the full spectrum of disability — including many who experience vision loss as a primary condition or alongside other disabilities. Low vision shapes everything: how a person accesses information, navigates their home, manages their finances, communicates with loved ones, and participates in community life. This month, we honor that reality and explore what smart planning looks like for people living with vision loss and for the families, professionals, and agencies that support them.

What Is AMD and Low Vision?

Age-related macular degeneration is a progressive eye condition affecting the macula — the part of the retina responsible for sharp, central vision. It is the leading cause of vision loss and blindness in Americans age 60 and older. AMD does not cause total blindness in most cases, but it can make everyday tasks — reading, driving, recognizing faces — profoundly difficult or impossible.

Low vision is defined as visual impairment that cannot be fully corrected with glasses, contact lenses, medication, or surgery. It is distinct from total blindness. People with low vision retain some usable vision, but their functional sight is significantly limited. Common causes beyond AMD include:

• Glaucoma — damage to the optic nerve, often associated with increased eye pressure

• Diabetic retinopathy — vision damage caused by diabetes-related changes to blood vessels in the retina

• Cataracts — clouding of the lens, more common with age

• Retinitis pigmentosa — a group of genetic disorders that cause progressive retinal degeneration

• Congenital vision conditions — present from birth or early childhood

Low vision affects people of every age, background, and income level — though aging, diabetes, and certain genetic factors significantly increase risk. Because it is often progressive, early detection and planning are everything.

Vision Loss as a Disability: Legal Protections and Benefit Eligibility

Vision loss is a recognized disability under federal law, triggering a range of protections and potential benefit eligibilities that every member of the Shared Horizons community should understand.

Under the Americans with Disabilities Act (ADA): Visual impairment that substantially limits a major life activity is a qualifying disability. This means employers, state and local governments, places of public accommodation, and transportation providers must provide reasonable accommodations — including accessible formats, magnification software, screen readers, and sighted assistance — for people with low vision.

Under Section 504 of the Rehabilitation Act: Any program receiving federal funding — including public schools, federally assisted housing, Medicaid programs, and Social Security offices — must ensure equal access for people with vision disabilities. This includes accessible communications, accessible websites, and accessible document formats.

For Social Security: Visual impairment may qualify an individual for SSI or SSDI. The SSA has specific listings for statutory blindness (central visual acuity of 20/200 or less in the better eye with correction, or a visual field limitation) and for other vision impairments that do not meet statutory blindness but still significantly limit function. More than 6.6 million Americans have a visual disability — many of whom may be eligible for benefits they are not currently receiving.

For Medicaid and state disability agencies: Medicaid may cover low vision aids, visual rehabilitation services, and home and community-based services (HCBS) for individuals with significant vision loss. Eligibility and coverage vary by state. Visual rehabilitation specialists, orientation and mobility instructors, and assistive technology specialists can be covered under some Medicaid waiver programs.

For educators and IEP teams: Children with visual impairments — including those with low vision who do not qualify as legally blind — have rights under IDEA to specialized instruction, accessible materials, orientation and mobility training, and assistive technology as part of their individualized education programs. Teachers of the Visually Impaired (TVIs) are specialized educators who provide direct services and consultation.

How a Pooled Special Needs Trust Supports People with Vision Loss

Assistive technology and vision rehabilitation are expensive, and public programs rarely cover everything. A Pooled Special Needs Trust administered by Shared Horizons can fill those gaps — funding supplemental needs that improve independence, safety, and quality of life without affecting SSI or Medicaid eligibility.

Examples of trust-fundable supplemental needs for people with low vision include:

• Screen readers, magnification software, and refreshable braille displays

• Smart glasses and wearable low vision devices

• Large-print or braille materials, audiobooks, and accessible media subscriptions

• Orientation and mobility training not covered by Medicaid or insurance

• Transportation to medical appointments, visual rehabilitation, and community activities

• Home modifications for safety, such as improved lighting, contrast markings, and accessible appliance labeling

• Vision rehabilitation therapy beyond what insurance will pay

  
  

For families and guardians: If your loved one receives SSI or Medicaid and is also managing vision loss, ask your trust administrator how distributions can be structured to fund vision-related needs without triggering benefit reductions. Since September 30, 2024, SSI no longer counts food paid by a trust as income — giving trustees more flexibility to support daily living needs across the board.

For trial lawyers and settlement planners: When a personal injury case results in vision loss — whether from a traumatic injury, medical malpractice, or product liability — the lifetime cost of assistive technology, visual rehabilitation, and accommodation must be carefully projected and included in the settlement and trust funding plan. Vision loss is not static; costs change as technology improves and as the individual's needs evolve.

For AARP and elder law practitioners: AMD and vision loss are among the most common reasons older adults lose independence and require increased care. Incorporating a vision loss plan — including assistive technology, transportation, and in-home support — into estate and long-term care planning is not optional for clients over 65. It is essential.

For HUD and housing agencies: Accessible housing for people with low vision includes adequate lighting, high-contrast environmental markings, clutter-free pathways, and accessible appliance controls. Trust funds can pay for home modifications that HUD programs and Medicaid do not cover, preserving independence and reducing the need for institutional placement.

See the Whole Person

Low vision does not define a person. But it does shape their daily experience in profound ways — and planning that ignores it leaves real gaps. This February, Shared Horizons encourages every family, attorney, guardian, educator, and benefits professional in our network to ask: does our plan fully account for what life with low vision actually requires?

If the answer is not a clear yes, we are here to help. Contact us at (202) 448-1460 or info@shared-horizons.org to learn how a Pooled Special Needs Trust can be part of a comprehensive plan for someone living with AMD or low vision.

Learn more from Prevent Blindness at preventblindness.org, and from the American Macular Degeneration Foundation's Access in Sight! Advocacy Week, observed during the last week of February.

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Citations & Resources

1. Prevent Blindness — AMD and Low Vision Awareness Month 2026: preventblindness.org

2. American Macular Degeneration Foundation — AMD Awareness Month: macular.org/amdawarenessmonth

3. SSA — Visual Impairment and Disability Benefits: choosework.ssa.gov

4. SSA Listing of Impairments — Special Senses and Speech (2.00): ssa.gov/disability/professionals/bluebook

5. ADA National Network — Visual Disabilities and the ADA: adata.org

6. National Eye Institute — Low Vision: nei.nih.gov

7. SSA Final Rule — Food and ISM, Effective September 30, 2024: ssa.gov

8. 42 U.S.C. Section 1396p(d)(4)(C) — Pooled Special Needs Trust authority