My wife is disabled and I have been on our lease as a caregiver for 11 years. A month ago she was hospitalized for pneumonia and only needs to regain her strength to be able to go home. While the EMTs were transporting her the fire chief confronted me in our house saying we must move her sleeping quarters from the back bedroom to the front of the apartment to make it easier for them in the future, threatening to report us to protective services. A social worker showed up in my wife's hospital room when I wasn't present and threatened to drop her from the CAP program of Medicaid that pays for her home health care, rent and bills. They made a conference call with our housing manager and the agency that provides our nurses (which are separate private companies) to eighty-six us into changing our living space or the agency would drop her as a client. As I understand it a company that manages privately-owned HUD properties and lease agreements with the tenants can't be forced to do this. Making the front of the house into a medical bedroom we can't share and the back of the house a repository for all our things takes away the life of a young couple; there would be no more thanksgivings or neighborhood kids coming over, only excuses, pity and rumors. But since I work two jobs we couldn't live if her CNAs were taken away. As a husband I'm forced with two impossible choices; we could put my name first on the lease in which case our expenses would be ten times what they are and they might drop us anyway (unless I pay for the CNAs as well which I can't). Or I can accept the "caregiver" role I've been slated which means I have no spousal responsibilities and there is nothing keeping me here. The dignity of living like everyone else is something a person can go without for only so long before they are unable to have friends or keep a job. The remodeling would take a month during which my bedroom would be permanently removed, but they can't give us a wheelchair door so the apartment will still not be handicap-accessible. Any ideas on what to do about this? We are in NC.
Do you have to stay in the current apartment? Is finding an apartment meeting the fire chief's concerns/requirements a possibility? There's a lot of newer (built in last 30-40 years) apartments with the exterior door opening into a open common room and a short 4-5' hallway leading to 2 BRs.
Would a mobile home be acceptable for the CAP program? Mobile homes are now built to the same standard building code as site built homes and a lot of mobile homes have larger bedrooms and baths. Many split bedroom double wide floor plans have a door to the master bedroom directly off a main open common room; the master bath often includes both a tub and walk in shower. Mobile homes often provide more living space than apartments of similar pricing and are available for renting.
Almost every government program involving SWs and support for the aging or disabled has an appeal process. I suggest asking the SW how to appeal his/her directive. You might be able to find more information about their standards/requirements here: https://medicaid.ncdhhs.gov/providers/programs-services/long-term-care/community-alternatives-program-for-disabled-adults
The only time I saw a slight difference in approach was when the local fire department EMS apparently wasn't available and called in an EMS team from some other unit, possibly another locale.
The team was good, but they didn't even bother bringing in a stretcher; the team just picked up Dad and carried him out. Fortunately, there was no snow or ice on the ground.
I really don't have any suggestions; I'm not sure how to effectively deal with this, but wanted to offer my support for the challenges you face.
I agree that having the common front room turned into a hospital room is quite depressing. I know several people with our floor plan and that's exactly what they had to do--for the reason you state. And, yes, in both cases the wife (the CG's) felt that they had no space to have people over to visit. Also, all the medical equipment that was on display for all and sundry to see is off putting for a lot of people. (I know my mom's urine cath bag is gross to see when she opts to hang it off her walker, rather than strap it to her leg. I have grandkids who have seen that and they are terrified of her.)
Good Luck to you. Let us know how it goes.
I don't know if they can 'force' you into making this change. Sounds like you are being bullied and that's not helpful. I hope you can find an advocate in this mess to help you deal with complying, but also keeping a space that is neutral, so you can have a social life.
BTW, is your wife bedbound? Wheelchair? What kind of care does she require? I think the authorities are coming down pretty hard on you.
I hope this can be all worked out so you and wife can continue to live in home the way you want.