I have been working with a man who lives in North Florida and is a quadriplegic. Before his injury, he was a painter and made a good living. Now that he is injured, he is on Long Term Care Medicaid and lives with his brothers’ family as he is dependent on them for all his needs.
Although not the best, long-term Medicaid has covered many of his needs. The trouble is that NO homecare providers in his network take Medicaid for payment. As a result, he is missing out on essential services. His brothers’ wife is his sole caregiver who provides total care, cooks, feeds him, baths him, does his bowel program, and cleans his ureterostomy tube. Since he has been home after being in a hospital in another state, she has healed a stage 4 decubitus ulcer and done everything she can to prevent complications. He has not been admitted to the hospital in over a year.
It has been a disappointing experience, but the hard truth is that if you live in a rural area – you do not get the same services that others do just because of your zip code and the type of insurance you have.
They are not asking for a lot – they would like a physical therapist to come to the home to do range of motion exercises to prevent contractures and help him regain movement if possible. He feels sensations in his limbs and has hope that he will do some things for himself one day. But without a plan of care and a routine exercise program, his dreams are dimming day by day.
You might ask, why doesn’t he go to outpatient therapy. He has tried, but the public transportation in his area is challenging. Like with most public transportation systems, he has to schedule at least a week in advance for an appointment. Also, to be ‘efficient,’ the transport van picks up several people who are going to their doctor/therapy appointments at various stops. In my patient’s case for an 11:00 appointment, he has to leave his house around 8:30 am due to the number of stops the driver has to make. To be ready, his sister gets him up at 7 am!
Once he gets to the outpatient facility, he usually waits to be seen by the therapist. By the time they get in back in the room, he receives therapy for about 30 minutes and then must wait for the bus to pick him up and take him home. The return trip has several stops to pick off and drop off people. The round trip time is about 5 hours for a 30-minute PT visit. So having a therapist come to his home would be much more efficient for him, his sister, and even the therapist. Keep in mind that this man is a quadriplegic, so he is in his chair for 5 hours straight without weight shifting or having anything to eat or drink. He is nervous the whole time because no one goes with him to the appointment.
Despite all the challenges my patient faces – he has a great sense of humor and continues to look ahead – with goals of being a productive person. I think the hardest thing for him is the loss of control. He has to wait for everything and everyone to do anything as he cannot help himself.
I know the system is challenging, and with COVID, it is even more so, but it Is a sad situation for those who live in rural areas, especially on Medicaid.
Working with this man has reinforced that the healthcare system is set up for the healthcare system – not the people who use it – especially those who don’t have money and must depend on ‘the system’ for everything.
Stay well, so you don’t have to use the healthcare system. Being a patient with a chronic illness, a catastrophic injury or a permanent disability is degrading, lonely, and downright frustrating.
If you have any suggestions on how to help this man, please email me at [email protected]