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The Power of Self-Advocacy

Sue Bowes, MSW, LCSW, Care Services Coordinator – Social Worker, ALS United Greater Chicago

 ALS United is here to help you advocate for yourself or a loved one. We can help guide you through the process and the Clinic can help anticipate your needs. Ultimately, you are your own best advocate.

Get educated about ALS.

The first step to self-advocacy is becoming intimately familiar with your disease. Understand how it may progress, and begin thinking about what quality of life means to you. Become familiar with terms and language used to evaluate and describe the needs associated with ALS. Don’t overwhelm yourself by trying to read everything but use the internet for some research. Join a support group and ask questions. Talk with your professionals at ALS United and ALS Clinics. They are experts who are ready and willing to help.

Get organized and prepared.

You and your support system will be in charge of making appointments and advocating with insurance. Stay current with your insurance and what they will cover, if preferred providers have changed, and know your deductibles for medication, medical equipment, and specialists. Insurance companies are notorious for changing preferred providers when you think you have everything settled. Stay in the know!

If you have multiple people who support you, make some decisions regarding who will be doing which tasks, such as keeping up to date with doctor appointments, arranging logistics for care, keeping up-to-date on equipment, organizing home modifications, and anticipating equipment.

Don’t assume anything.

Don’t assume others know what you need or how you’re feeling. Reach out for assistance from ALS United or your doctor’s office. If you are struggling or confused, don’t hesitate to solicit input from a care service coordinator or ALS Clinic.

Become comfortable telling your story and expressing your needs. 

Often, local hospitals and physician offices do not know how to respond to ALS and possibly your care needs properly. You are the expert in knowing your needs. Refrain from assuming other medical professionals will know how to manage your needs when they are unfamiliar with ALS. Educate others on what your needs are and how to meet them. For example, if there is a particular way you transfer from a wheelchair to a stretcher, explain that to other professionals so that you are more comfortable with the care you are receiving.

Get the most out of your appointments.

When attending an appointment, take a notebook.  Before your appointment, write down the questions you have, so you can have your questions answered. This is your appointment and it is just as much for you as it is for a doctor to evaluate you. 

Take notes or, if preferred, ask the provider if they mind that you record the appointment. It is natural for individuals to become overwhelmed and question what they remember from appointments. Taking notes will help you be able to go back and review what was said so that providers can be held accountable for what they said they would do and you know what’s expected of you.

Investigate and ask questions about benefits.

If and when you stop working, you will want to apply for Social Security Disability and Medicare benefits. Understand the qualifying factors for Medicare and Medicaid. Understand,  Medicare is a federal government program and Medicaid is a state program for insurance. If you are a veteran, you may apply for service-connected benefits. If you’re not sure how to proceed, contact the social worker at your ALS Clinic or ALS United

Be proactive about equipment.

The right equipment at the right time will greatly improve quality of life. Equipment can help you stay safe, maintain your Independence, conserve your energy, sleep better, breathe better, and better communicate with others.

Much of this equipment is covered by insurance, although co-pays will vary. If you cannot afford ]these expenses, talk to your care service coordinator, DME provider, or Clinic social worker for financial assistance.

Make sure you are aware of the financial obligations before ordering any equipment or medication. You have the right to understand how much you may have to pay before services are received.

Anticipate care needs and resources.

ALS often results in individuals requiring personal care assistance. Depending upon age, finances, resources, and abilities, some outside resources may be available from State services through the Department of Rehabilitation Services or the Department on Aging. More frequently, families take on the responsibility of care if they can. Caring for a person living with ALS can be challenging, especially as the disease progresses. Skilled nursing care and Therapy Services are usually covered by insurance, but generally, assistance with daily living care like bathing and dressing is not. It can be hard for the person living with ALS and the family to request help, but it is an important part of creating a more sustainable long-term plan.

Take the time to have the hard and critical conversations.

Share with your loved ones what quality of life means to you. Openly discuss possibilities and decisions regarding healthcare power of attorney, living wills, and Last Wishes. Discuss and inform family and providers about decisions regarding tracheostomies, ventilators, tube feeding, and speech. Advanced directives can be hard conversations, but many people feel better knowing their wishes have been expressed.

Above all, remember you are in charge of your care and you have the right to speak up and advocate for how best to serve you!

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