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]
My heart goes out to this wonderful man . He is so brave and it sounds as if he worked hard , got injured and now the system is failing him, and his family. That is a disgrace. I pray he gets the help he needs and deserves. Unfortunately, you have beautifully expressed the ugly reality of our healthcare system. It is designed for profit and this is often at the expense of the patient. Healthcare should not be a business. People are not widgets, they’re individuals with needs unique to their situation. That’s why we are taught to make individual care plans in nursing school. The care plans come from a template of sorts but we input each person’s needs and symptoms to make a plan of care that fits the patient’s needs as an individual. The hospital setting uses this plan of care (although we do seem to be getting away from this concept more and more) but once a patient leaves the tightly controlled hospital setting it all seems to fall apart as our system is fractured with little oversight. I grew up hearing the United States had the best healthcare system in the world. That is not true, we’re not even close! Our outcomes and rankings in years of healthy living and every other indicator are abysmal, they’re a disgrace and don’t even look at our infant mortality or maternal death rate unless you want a heartbreaking shock …the system is broken and until our millionaire politicians crawl out of the pockets of the insurance and pharmaceutical industries, we don’t have a chance. The healthcare system needs change. We need to let Congress and the White House know how we feel and vote accordingly.
You are on the money with this one! If it wasn’t a car accident or WC you have troubles. Did you try https://www.spinalcord.org/ they have a florida chapter. Good luck
Can his family reach out to a Physical Therapist organization/s that might have programs geared to doing ” pro bono” — a term that the legal profession uses where many attorneys offer their legal services for free. It may be a long shot but you never know unless you ask.. Will remember this gentleman in my prayers.
So, so true,, Anne. You hit the nail on the head with this. Tragic. I also live in North Florida, and if I find any ground breaking changes in the news, I will let you know.
This is indeed a “hard” and heartbreaking read!
Michelle Knaub makes the point very well and it is sad that this is a reflection of the future of healthcare in America.
I applaud this gentleman’s spirit and his family’s commitment in supporting him.
I hope that there is a professional organization such as APTA in FLorida that might have suggestions related to pro bono interventions for this gentleman. It is not clear if he is eligible for social security disability or even Medicare. I am thinking along the lines of respite so that his sister can get a well-deserved break from time to time.
Can a one time contract be made to provide those services. One Medicaid providing agency had very few providers and they would tell the case managers if we found a company that would provide care they would do a one time contract. It is worth perhaps some help. I would press them and say that this is there insured patient and how was the insurance company going to assist their patient with needs. Usually there was minimal offerings.