Resources

Federal Laws
42 CFR Subpart B - Subpart B—Requirements for Long Term Care Facilities

These sections are of particular note - though based on what I have seen, it is not enforced at all.

§ 483.10 Resident rights.
§ 483.24 Quality of life.

Quality of life is a fundamental principle that applies to all care and services provided to facility residents. Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being, consistent with the resident's comprehensive assessment and plan of care.

State Laws

Florida Chapter 400 Part II

For other state you will have to search for these yourselves. Most, if not all, parallel the federal laws, with some minor, but sometimes important (beneficial to residents) differences.  For example, nine states allow cameras in a resident's room.

Unfortunately, these are solely regulated by states.  You will have to do research for your state.

https://bkbooks.com/

For very helpful information about end-of-life care, I recommend the wisdom and experience of Barbara Karnes.   Check out her blog for topics. If you find the information valuable, consider buying her pamphlets, books, and other materials.  

https://www.alzstore.com/

Here are some I've used or I intend to get.  But there are tons of items.

• Simple Music Player

• Relish Music Player w/ Radio 

• HUG Sensory Doll by Laugh 

• Easy 35 Piece Tray Puzzles 

• Call to Mind Conversation Game for Dementia 

 Website:  https://theconsumervoice.org/

This organization makes a good effort at policy improvements and lobbying.

While I find them worthy of supporting, do not expect anything personal from this group. In addition, while they have conferences, they are clearly meant for people more affluent that the average Jack or Jill.

Over the years I have encountered and explored various organizations allegedly aimed at helping people in long-term-care facilities.  I have been less than impressed with the following organizations, but evaluate them yourself.  

• The Florida Long-Term-Care-Ombudsman Office.  

While I appreciated the support of two former staffers, they were apparently fired for actually doing their jobs of advocating for people in long-term care.  In any case: (1) This agency has no teeth, no enforcement ability, and (2) the volunteers I encountered were former LTC industry employees and one even said to me that she didn't know or care about the law. Yikes.

• Florida Pioneer Network

The steering committee includes industry folks, one who oversees a facility that was reported to have required a resident to engage 24/7 private care above and beyond the facility's "care."  When I raised this, the only answer received was that the records were private.  In other words, that steering committee member did not deny the allegation.  

Per 42 CFR 483.24: "Each resident must receive and the facility must provide the necessary care and services to attain or maintain the highest practicable physical, mental, and psychosocial well-being, consistent with the resident's comprehensive assessment and plan of care."  

IF a nursing home (skilled nursing facility) is abiding by that, then it would seem to be illegal to require a resident to have private of any amount.  Thus, why is someone who appears to be engaging in an unethical, if not illegal, practice allowed to be on the steering committee of this organization.