My son, C-Bear, requires a lot of supplies each month. From enteral feeding and incontinent supplies to tracheostomy supplies and oxygen. All of those supplies come from different Durable Medical Equipment (DME) companies. Plus we have an additional DME that handles all C-Bear’s equipment such as wheelchair, walker, stander, and bath system.
Navigating monthly orders is a nightmare. One company has an app, one uses a web portal, and the rest I have to call to place our orders. On the ones I have to call, I have to be sure to put a reminder in my phone so that I remember to place our order on time. All of this to say, I need to be paid to be C-Bear’s personal assistant!
The nightmare begins…
Handling all of this is a nightmare for me, the parent of a person that experiences disabilities. I can’t imagine what it is like for a person with disabilities! The hoops that have to be jumped, the requests, the denials, and then the endless appeals. All of this is from a system that is made to deny people vital equipment and supplies rather than to try to support them in living their best life.
People who need DME all have disabilities of some kind. The nature and severity of those disabilities cause an enormous amount of stress to that individual and family; dealing with doctors and specialists, constant contact with the insurance company, and trying to do Activities of Daily Living that are harder than it is for most people.
We need equipment!
DMEs are supposed to support our loved ones, whether it’s with life-sustaining supplies or equipment that allows a person to access or participate in their community. DME companies are not supposed to be the gatekeepers of those supplies and equipment. They are not there to decide if and when we will get the supplies and equipment that we have been begging to receive. They should be there to help make our lives easier, not add stress and frustration to a life that is already overflowing with that.
Hoping for change
Recently, I joined a group of professionals and families, and self-advocates that are trying to make a difference in the lives of everyone that uses DMEs. Right now, we are gathering stories, statistics, and evidence and we are hoping to translate them into a path forward that addresses the problems of people not getting equipment and supplies, the correct equipment and supplies, a person needs within a reasonable time, not 6 months to 3 years from now.
Be the change!
Do you see a problem in your community? Reach out to other individuals/families or organizations. Reach out to your local Heath Authority or OMBUDSMAN. See if anyone is addressing the issue. If no one is, find like-minded people and start your own workgroup and brainstorm solutions.
The solution might be to talk to the DME(s), and Health Authority or it might involve legislative action. Whatever is it, I wish you the best of luck!
Power to the people!
~ Momma Bear
Information about the OMBUDSMAN program
Long-Term Care OMBUDSMAN Program