Macular Degeneration: Planning for Long-term Care
Macular degeneration requires a long-term plan. Learn about government assistance options, mental health resources, and support groups.
By Ability Central
9 October, 2023
Age-related macular degeneration (AMD) is a leading cause of irreversible blindness and visual impairment worldwide. In this article, Ability Central will address 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 the person with macular degeneration and their caregivers?
- Where can I get more information about macular degeneration?
Where can I find service providers for macular degeneration?
Ability Central offers a Service Locator. This database allows you to search various non-profit services throughout the United States. It’s a powerful first step to get you connected with the help you need.
Does the Americans with Disabilities Act (ADA) cover macular degeneration?
The Americans with Disabilities Act (ADA) protects people with disabilities from employer discrimination.
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. A multi-disciplinary approach to treatment may help.
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, many already have the needed safety features in place.
Ability Central offers a Service Locator tool. This database allows you to search various non-profit services throughout the United States.
What support groups are available for the person 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.
- Facebook has a private Macular Degeneration Support Group for women.
- 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: