Supporting the Disabled
Personal Support and Daily Living
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Assistance with Daily Tasks: Providing hands-on help with essential activities like bathing, dressing, meal preparation, and light housekeeping.
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Mobility Support: Assisting with movement, using mobility aids (like wheelchairs or walking sticks), and ensuring a safe, accessible home environment.
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Medication Management: Offering reminders for medication schedules and helping to ensure instructions from doctors are understood (as medication leaflets can be complex).
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Transportation: Helping with travel to medical appointments, social outings, or for errands.
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Companionship and Emotional Support: Providing a "warm" line for routine check-ins, social interaction, and emotional support to combat isolation.
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Respite Care: Giving primary caregivers a temporary break, which is a crucial form of indirect support.
Healthcare Advocacy and Navigation
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Serving as a Support Person: Attending medical appointments with the individual to help keep track of medical information, ensure concerns are heard, and provide backup.
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Ensuring Accessible Information: Advocating for medical information (e.g., prescriptions, instructions) to be provided in accessible formats, such as easy-read documents, large print, or Braille.
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Connecting with Resources: Helping the disabled person and their family navigate complex systems to find local, state, and national resources, support groups, and financial assistance programs.
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Empowering Independence: Fostering the individual's ownership of their health by listening to their concerns and encouraging active participation in health decisions.
RESOURCES | Critically Ill and Disabled
Patient Advocate Foundation (PAF)
Provides professional case management services, educational resources, and financial aid to patients facing obstacles in accessing quality healthcare, including insurance appeals and complex billing issues.
Visit the Patient Advocate Foundation website for direct patient services.
PAN Foundation & Good Days
Nonprofit organizations that offer copay and premium financial assistance for more than 80 chronic and critical illnesses to help patients afford out-of-pocket costs for life-saving and life-extending treatments.
Check their websites (PAN Foundation, Good Days) to see if the specific disease/ medication is covered by a current fund.
Americans with Disabilities Act (ADA)
Federal law that prohibits discrimination against individuals with disabilities in all areas of public life, including employment, state and local government services, and public accommodations.
Contact the U.S. Department of Justice Civil Rights Division or the EEOC for discrimination complaints and legal resources
Chronic Disease Coalition
Works to protect the rights of patients with chronic diseases, fighting against unfair, illegal, and harmful practices by insurance companies and others at the state level.
Visit the Chronic Disease Coalition website to get educated on patient rights and get involved in local advocacy efforts.
NAMI (National Alliance on Mental Illness)
The nation's largest grassroots mental health organization providing support, education, and advocacy for individuals and families affected by mental illness, which often co-occurs with chronic and critical illness.
Call the NAMI HelpLine at 1-800-950-6264 or Text "NAMI" to 62640.
USAGov Disability Benefit Finder
An official tool to help individuals quickly identify potential federal benefits they may be eligible for based on their disability or qualifying illness.