Home Health Agencies and Medicaid

I have been on Medicaid long term care in Florida for 3 years. It has been a consistent struggle to get the home help I was approved for, which is an aide to provide personal care and homemaking. I have MS for 31 yrs. The last several I have lost my ability to go from sit to stand without someone lifting me. Once I am up I can stand holding onto the grab bars on either side of my toilet long enough to dress. This alone has been a nightmare, pure hell. I weigh 117lbs. 5’5″Tall. I am clear-minded and well trained by a therapist in how to best transfer me safely so I am not injured and the aide is not injured.

A frustrating cycle of ill-equipped aides

The agencies that are contracted with the Medicaid provider treat me like I was a piece of furniture. They do not do an assessment of my needs, they do not send someone out to see me or my home. They want to just “send someone" (an aide) out, sight unseen. To just arrive with no meeting, no orientation, unknown skill level. Poor English comprehension, and not informed of the care required. This, of course, creates immediate conflict when the aide arrives and now I have to explain my diagnosis, spasticity, spasms, transferring, etc. Over 90% immediately say no I am not going to lift you. And then call the agency to send “someone else”.

No required to ensure appropriate care

This is been going on now every week for 6 months. I have contacted the director of my LTC plan, AHCA, every resource, and no help. They all just say it is a “Medicaid” contract and they are not required to ensure you get “appropriate care” for your level of care required which in my case is “full assist”. I have been in this fight to get my needs met, that has impacted my decline with my symptoms from the daily stress. I do not want to live in a facility. I have no faith that once there I will receive any better care.

Medicaid long term care = long term suffering

For me, this Medicaid long term care has turned into long term suffering. At the hands of agencies lowered standards of care for Medicaid patients. I don’t know how much longer I can live like this. I have to say I have lived with ms for 31yrs. Alone. Single, with a full life. Never let MS get me down. As the disease progressed, I adapted. I got hand controls to drive, mobility scooter to get around. I remained active in my life, community. I volunteered for 5 yrs at a museum. I never felt despair. Along the way I had several falls, resulting in broken bones and long rehab hospitalizations. And still kept going. But since I have had to turn to Medicaid to provide the home care assistance, I have lost all my life. I am consumed with daily problems with aides, agencies, and fighting for my life.

This will kill me. Not the MS.