Financial Hurdles

There are a number of hurdles, and eventual adjustments many of us make when faced with long-term disability or chronic illness. I moved closer to my support system for a long time, put my personal belongings in storage and paid assistants that still come to help me to do what I want to do.

Regardless, the local Red Cross may be able to help with transportation. Your Independent Living Center may also be able to help with advocacy, resources, and ideas to help you restructure your life more comfortably.

Additionally, please learn about your rights and responsibilities under ADA, FMLA, FEHA, and the Rehabilitation Act of 1964 as there is job protection for time off from work for medical treatment, and medical related incidents with your health.

I suggest calling the Job Accommodation Network (a government agency providing commonly considered “reasonable” accomodation information and resources to people with serious medical conditions. Taking this information back as a source from JAN is credible to the employer. You may find new options for your situation that you can negotiate with the employer, while pushing back on your medical provider to come to your home for infusions (as suggested by the previous poster).

The reality is for those of us with rare medical conditions, we must learn to be our own advocates, be resourceful, and to provide sensitivity training to those around us. In doing so, we help others understand how we can continue to fit into the world, and the next person they meet that doesn’t fit the stereotypical mold, we can hope they (and we) have learned how to be more flexible in joining hands to help build a more accessible and tolerant world.

Best Wishes,
Disability Program Navigator