Key Documents & Handy Resources

Practical Knowledge Sharing for Overcoming
the Daily Challenges of Living with ALS

By ALS Caregivers for ALS Caregivers

Overview

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Introduction

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Key Documents & Handy Resources

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THIS BOOK WILL BENEFIT: Anyone who has to navigate the complexities of insurance & health care providers. Those who want to ensure essential legal documents are cared for. Those eager to research available trials & studies. Those who just want to meet up with others living the same daily realities of ALS as you are.

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THIS BOOK INCLUDES:

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● Disability Forms
● Your Health Information
● Caregiver / Helper Log
● Key Contacts
● ALS Clinic Visit Documents
● Equipment Log
● Legal Documents
● Resource: Support Teams
● Resource: Studies & Trials
● Fund Raising For Your Needs

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ALSCaregivers.org

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Who We Are

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We are not experts. We are not vendors.
We are a community of current or previous care givers who have experienced this disease personally and have battled ALS 24 hours a day, 7 days a week. We had to “learn on the job”. We immersed ourselves in all available information resources and in people networks seeking practical solutions to help us manage daily living challenges.

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The Purpose of This Book

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What This Is Not: This is not a therapy or group counseling session. This is not a vendor sales pitch or health care experts providing “book based” advice.

What This Is: Time is not our friend. We don’t have the luxury to learn from our own mistakes and benefit from our own experiences. We must band together and share our learnings (good and bad) creating a collective foundation of real, practical, “life-learned” experiences that exponentially advances everyone. Together, let’s enable everyone facing ALS to more quickly gain tangible and practical ideas to overcome every day challenges. This is a forum to both listen and learn. Until there is a cure, let’s continuously update these materials with our collective experiences providing a springboard of learning to everyone facing down this disease. Last revision 5/11/24.

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Disability Forms

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Veterans Benefits

Work Disability Forms

◼ The primary care physician & ALS clinic can help fill work disability forms out.

Social Security Disability Forms

◼ If a PALS is a veteran, there are significant benefits from the VA. Contact the VA ASAP.

◼ The Paralyzed Veterans of America will help you get forms submitted and pushed through.

◼ The www.ssa.gov.applyfordisabiilty site provides:

● A check list of documentation that must be provided.
● The disability benefit application.
● The Medical Release Form.

◼ The primary care physician & ALS clinic can help fill Medicare disability forms out. Start early as there is a lot of documents that must be provided.
◼ Most people with disability must wait 5 months before receiving SSDI disability benefits. People with ALS do not have to wait. They also want 24 months before qualifying for Medicare disability. People with ALS do not have to wait on disability before applying for Medicare & there is no age criteria.

◼ Go online to check the status of your claim. Also call the local disability office regularly to check on progress reminding the disability office that this should be fast tracked due to the ALS diagnosis.

◼ The ALS Assn. partners with the Patient Advocate Foundation (PAF) on the ALS Medicare Resource Line providing individualized case mgmt. assistance for pALS. This provides free, direct telephone access to Medicare experts who can help pALS navigate eligibility and enrollment in disability benefit.

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ALSCaregivers.org

Veterans Benefits

◼ If a PALS is a veteran, there are significant benefits from the VA. Contact the VA ASAP.

◼ The Paralyzed Veterans of America will help you get forms submitted and pushed through.

Video: Disability Overview

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Video: Veterans Benefits

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Your Health Information

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Current Health Information

◼ An Updated Health Summary should always be kept with you.

◼ Some caregivers have also placed a pocket on the inside of the front door to hold the PALS health information, key contacts, advanced directives, etc. making it quickly & easily accessible to emergency responders and caregivers.

◼ Create a Medicare account and assign your caregiver as an official representative. Set this up with all of the pALS Insurance & healthcare providers.

◼ Medical Information Summary can be obtained from the ALS Portal or an alternate template is below:

Current Health Summary Template.docx

◼ Track your ALS experience with a journal. It doesn’t have to be daily. Take pictures and videos at various stages of the journey, equipment used, and innovations you came up with. It is helpful to your healthcare providers and as a reference for you. It will also be an invaluable reference and you share your journey with others.

Audio - Caregiver Perspective: Health Info Document

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ALSCaregivers.org

Video: ALS iNVOLVE

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Current Health Summary Template.docx

Caregiver / Helper Log

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Coordinating Volunteers

What Is The Log For

◼ Utilize the LotsaHelpingHands app provided by the ALS Association to schedule times when help is needed. Friends and family who have signed up to help will be notified when something is posted, can sign up to volunteer, and will get reminder emails automatically.

Video: PALS Family Experience Using LotsaHelpingHands

◼ Communication is key to get the best possible care outcome. A log allows the person with ALS to consistently share what is needed/expected from someone acting on their behalf as a caregiver / sitter. It also enables the helper to share insights with the primary caregiver about what occurred during the day and when.

◼ Set expectations with all helpers (paid or unpaid) that they must update the log with their comments.

◼ Remind all helpers (volunteer or paid) that whatever they see or hear during their “shift” must be kept private and not spoken about to anyone. Privacy and dignity are incredibly important for someone living with ALS.

◼ Helpers they are to treat the person with ALS as the adults they are and with dignity and modesty. They should not use toddler terms (e.g. do you need to tinkle or poo poo).

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