Advocating for Yourself |
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ALS clinics and organizations can support you, but ultimately, you are the one who will be in charge of your own care.
You and/or your caregiver will need to schedule your appointments, apply for benefits, seek out resources, communicate your needs, and ask questions when you don’t understand something. |
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You are the only one who knows your situation, so it’s important to communicate important details with your medical team and everyone else.
All of this responsibility can feel overwhelming, but being proactive and advocating for yourself can help you get the best care possible, save money, and have a better quality of life.
All of this responsibility can feel overwhelming, but being proactive and advocating for yourself can help you get the best care possible, save money, and have a better quality of life.
Educate Yourself
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The first step to empowering yourself is educating yourself about ALS and all the logistics that come with it. If you don’t understand things ahead of time, you won’t know what to expect or which questions you need to ask. Don’t overwhelm yourself by trying to read everything you can find online.
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Pick a few good sources and talk with professionals at your ALS clinic and local ALS organization. You can also learn a lot from other families affected by ALS through ALS support groups and online groups and forums.
Get Organized
Developing an organizational system will help you feel less overwhelmed, less scattered, and more in control. We recommend having one place where you keep all of your lists, notes, records, and information. This may be on a phone or computer, or you may prefer a physical notebook or binder.
Communicate with your caregiver and loved ones about who will take on which tasks. Delegating and establishing clear roles will help you work more efficiently as a team.
Communicate with your caregiver and loved ones about who will take on which tasks. Delegating and establishing clear roles will help you work more efficiently as a team.
Reach Out and Ask Questions
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Three months between clinic visits can feel like a very long time. If your symptoms change or any questions or concerns arise between visits, don’t hesitate to contact your ALS clinic coordinator. Your clinic may also have an online patient portal where you or your caregiver can send messages to members of your team between visits. You may also want to ask your doctor about participating in research and clinical trials.
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Whereas your ALS clinic will be more focused on monitoring your health and making medical and equipment recommendations, your local ALS organization can connect you with local resources and guide you on a wide variety of logistical and other matters. Do not hesitate to contact your organization when you need answers, resources, guidance, or support. The purpose of these organizations is to help families affected by ALS.
Take Notes
Remember to take notes during your appointments and meetings. It is often helpful to have someone accompany you and be in charge of taking notes. After your visits, you may want to share updates with anyone else involved in your planning and care. Designate a place where you can write down all of your questions between visits.
Apply for Benefits
If and when you stop working, you will want to apply for Social Security Disability and Medicare benefits right away. It is best to understand your health insurance options, including Medicaid and private insurance, ahead of time. If you are not sure how to proceed, contact the social worker at your ALS clinic or local ALS organization. If you are a military veteran, you will apply for service-connected benefits through the VA.
Once you have insurance, be sure to ask what will be covered when scheduling an appointment or ordering equipment. Ask how much you will have to pay out of pocket. You may not get an exact number, but you should get a general sense of what you will need to pay.
Once you have insurance, be sure to ask what will be covered when scheduling an appointment or ordering equipment. Ask how much you will have to pay out of pocket. You may not get an exact number, but you should get a general sense of what you will need to pay.
Be Smart about Equipment
Getting the right equipment at the right time can improve your quality of life—and even extend your life. Equipment for ALS can help you stay safe, maintain your independence, conserve your energy, sleep better, breathe better, and better communicate with others.
Most of your equipment costs should be covered by Medicare, Medicaid, and private insurance, though you may still need to pay for some expenses out of pocket. If you cannot afford any expenses for equipment that you need, talk with your durable medical equipment provider and/or local ALS organization about financial assistance options. Team Gleason is a nonprofit organization that provides financial assistance for assistive technology devices.
Before purchasing any piece of equipment, always ask your local ALS organization if you can borrow it at no cost from their loan closet.
For your biggest pieces of equipment, you will want to make sure you get the right device for you. When you are getting evaluated for a power wheelchair, ask to try out different chairs to make sure you find one that is right for you and will work well in your home. Most insurances will only pay for one chair every five years, so you want to make sure you get the right one. And if you get evaluated for a speech-generating device, tell the speech language pathologist that you want to personally try out the different devices before choosing one.
Most of your equipment costs should be covered by Medicare, Medicaid, and private insurance, though you may still need to pay for some expenses out of pocket. If you cannot afford any expenses for equipment that you need, talk with your durable medical equipment provider and/or local ALS organization about financial assistance options. Team Gleason is a nonprofit organization that provides financial assistance for assistive technology devices.
Before purchasing any piece of equipment, always ask your local ALS organization if you can borrow it at no cost from their loan closet.
For your biggest pieces of equipment, you will want to make sure you get the right device for you. When you are getting evaluated for a power wheelchair, ask to try out different chairs to make sure you find one that is right for you and will work well in your home. Most insurances will only pay for one chair every five years, so you want to make sure you get the right one. And if you get evaluated for a speech-generating device, tell the speech language pathologist that you want to personally try out the different devices before choosing one.
Plan Your Care and Logistical Support
Caring for a person living with ALS can be challenging, especially as the disease progresses. Family caregivers often struggle to care for their loved one while juggling the demands of daily life. Finding additional help can allow the relationship between you and your spouse/partner to be more than just patient and caregiver.
Skilled nursing care and therapy services are usually covered by insurance, but general assistance with daily living care like bathing and toileting is not.
If you cannot afford to pay for professional caregiving services out of pocket, you can reach out to your family, friends, and community to help with care and logistical support. Sometimes this help may be as simple as sitting down to watch a game or a show so the caregiver can have some downtime.
It can be hard to ask for and accept help, but it is an important part of creating a more balanced and sustainable long-term plan. Learn about your care options and how you can ask for help.
Skilled nursing care and therapy services are usually covered by insurance, but general assistance with daily living care like bathing and toileting is not.
If you cannot afford to pay for professional caregiving services out of pocket, you can reach out to your family, friends, and community to help with care and logistical support. Sometimes this help may be as simple as sitting down to watch a game or a show so the caregiver can have some downtime.
It can be hard to ask for and accept help, but it is an important part of creating a more balanced and sustainable long-term plan. Learn about your care options and how you can ask for help.
Make Important Decisions Ahead of Time
When living with ALS, there are some very important medical decisions you will need to make, such as whether you want a feeding tube and whether you want a tracheotomy. These are tough topics to think about, but many people actually feel peace of mind when they make these important medical decisions ahead of time and fill out their advance directives.
