Age-related macular degeneration (AMD) is a leading cause of irreversible blindness and visual impairment worldwide. In this article, Ability Central addresses long-term care and support questions for people with AMD, including the following:

• Where can I find service providers for macular degeneration?
• Does the Americans with Disabilities Act (ADA) cover macular degeneration?
• What medical and financial aid programs assist people with macular degeneration in the US?
• What mental health issues often accompany macular degeneration and other age-related vision loss diagnoses?
• How can I find an appropriate assisted living home?
• What support groups are available for people with macular degeneration and their caregivers?
• Where can I get more information about macular degeneration?

Where can I find service providers for macular degeneration?

Most macular degeneration cases require treatment from an eye doctor, like an optometrist or an ophthalmologist. The doctor who diagnosed macular degeneration or your primary care physician are great places to start when looking for specialist referrals. Also, if you have private insurance through an employer, family member, or marketplace, an insurance agent may be able to help you find an in-network eye specialist near you. 

If you're not sure where to start, Ability Central offers a national database of nonprofit organizations supporting people with age-related vision loss. The Service Locator allows you to search various service types, including residential care, workshops and training, and adaptive sports.

Each provider lists their location, specialties, and target demographic. Find an organization near you that can help connect you to specialists, treatment, and resources.  

Does the Americans with Disabilities Act (ADA) cover macular degeneration?

The Americans with Disabilities Act (ADA) protects people with disabilities from employer discrimination. Rather than protecting a specific list of qualifying diseases and conditions, the ADA protects anyone who has a disability that "substantially limits" their daily life. Some macular degeneration cases qualify for ADA protections, but it's always best to consult an employment lawyer or financial planner to check if you qualify.

The ADA makes it illegal to discriminate against people based on disability. This applies to public services like public transportation, government offices, and public parks, but it also applies to the workplace and education. Under the ADA, people with substantial disabilities have a protected right to fair hiring practices and accommodations or modifications in school and in the workplace.

WebMD offers a helpful overview of what the ADA means for people with macular degeneration, what accommodations may be helpful, and how to talk to your employers.

What medical and financial aid programs assist people with macular degeneration in the United States?

The estimated global cost of age-related macular degeneration (AMD) is $343 billion, including $255 billion in direct healthcare costs.

When looking for medical coverage for someone with AMD, consider the following options: 

• Medicare covers people 65 and older and people with permanent disabilities. 
• Medicaid covers people with disabilities who have lower incomes. Vision coverage varies by state, but necessary surgeries are likely covered under the medical portion of Medicaid.
• The Affordable Care Act (ACA) may also assist those who qualify.
• Medigap insurance supplements a person's Medicare coverage. If Medicare covers the procedure needed, Medigap insurance may help you pay your share of costs.
• Social Security Disability Insurance (SSDI) provides people younger than 65 with Social Security disability payments if they cannot work due to vision loss.
• Supplemental Security Income (SSI) guarantees a minimum monthly income for people 65 and over who are disabled and have minimal financial means. 
• In addition to offering services for veterans with visual impairments, the Department of Veterans Affairs (VA) is a leader in research into treatments for AMD. Learn more about how they can help on their website.

What mental health issues often accompany AMD and other age-related vision loss diagnoses?

When a person begins to experience the central vision changes of macular degeneration, their mental health is often affected. It may start small with worry, concern, and perhaps anxiety. Once a diagnosis is given, the fear or uncertainty can become overwhelming.

The isolation of AMD may lead to anxiety and depression. Vision loss from AMD can be confusing, frustrating, and frightening for people with Alzheimer's disease or dementia. Age-related hearing loss can add additional stress or confusion, particularly if someone qualifies as deafblind. 

A multi-disciplinary approach to treatment may help, including traditional therapy, support groups, and creative outlets. 

How can I find an appropriate assisted living home?

As macular degeneration advances, finding an assisted living facility to help with day-to-day tasks may be necessary. While most facilities don’t advertise their ability to accommodate people with AMD, they do have special considerations for people with low or no vision. Many assisted living facilities already have the needed safety features in place, like emergency procedures for people with low vision, handrails and stair guards in public spaces, and staff training related to caring for people with low vision. 

Ability Central offers a Service Locator tool. This database allows you to search various nonprofit services throughout the United States. Use the Service Locator to find an organization near you offering adult day care, assisted living services, and other resources for people with AMD. 

What support groups are available for people with macular degeneration and their caregivers?

Connecting with a community of people with similar struggles can be helpful for both the person with macular degeneration and their loved ones. A support group is a good first step. Consider the following:

• MD support offers a searchable list of their branches.
• The Macular Society provides support online, by phone, and in person.
• Macular Degeneration Support Group is a private Facebook group for women with AMD.
• Another Facebook option is a group called Living With Macular Degeneration.

In addition, your eye care specialist may have connections with a local support group.

Where can I get more information about macular degeneration?

Ability Central offers a series of articles to further your knowledge about macular degeneration. See:

• Macular Degeneration: Seven Quick Facts You Should Know
• Macular Degeneration: Symptoms and Early Signs
• Macular Degeneration: First Steps After Diagnosis

To learn more about other vision-related conditions and disabilities, see:

• Glaucoma: Seven Quick Facts You Should Know
• What support is available for people with low vision?
• Long-term Care Challenges After a Stroke