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Lobbying Efforts for State and Federal CCRC Guidel...
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Joanne, I was sent a formal letter signed by the group of upper management saying they would not fix my residence, if I wanted to move I had to promise to not complain, or meet with them to leave. I was missing an air vent in the main living area meaning that about half the apartment did not get heat or cooling from the heat pump. I even pointed out to them that other apts of the same style have a vent in every room. And there is constant construction around me, everywhere, to renovate apts for new residents.


Buyer beware. There is no help from the state or legally.

Ann - But no help or protection for the majority of residents who live in independent living. Who are at the CCRC for the promised (not guaranteed) life care. At most, some states have financial oversight.

There are no regulations for the many thousands living in independent living at retirement communities. In PA, the assisted living and nursing home residents are protected by different state departments, but not the majority who are in independent living. PA has something for financials, that is it.


I have residence problems, and the CCRC management will do nothing (so much for marketing). They put that in a letter saying they would fix nothing, if I move I have to promise to not complain, or I can leave. No good option. I went around them/the letter, and first line managers agreed that the missing air vent in the living area needed to be replaced. An inner wall had been removed by the prior resident, and it was replaced without the vent. All other residences of this style have the vent. This meant no air flow from the heat pump with heat and cooling to about half the apartment, no fresh air, a stale musty smell. It was a year after I moved in that I finally had the vent added, after so long with my complaints being ignored. So painful. Just as bad was that my fellow residents did not want to hear about my problems. But I still have the smell and no fresh air. Complaints fall on unresponsive deaf ears as management's style is to not respond. I am just told they will fix nothing, then a visit by head of maintenance, bullying me in my home, put a final hard stop to any more action. So I had an air quality monitoring done for a few months this year that proved what I was saying. Nice color graphs show my residence has hazardous levels of co2 (cause of smells like I have is one issue), and high radon (the state is known for that and now I see it in my home putting me at increased risk of lung cancer). I sent it to the CCRC's board of directors and so far there is no reply.


The resident council is only for basic concerns like putting paper towels in restrooms. During the pandemic, it raised more issues like opening up topics, vaccinated versus unvaccinated residents and team members. But the council has really only one vote - the community manager. The resident board presents resident concerns, discusses and writes the minutes. But has no power.


A resident bringing a problem to management, if they don't like it they simply do not respond. And there is no protection for residents by the state. Note that Assisted Living has protection at the state level including a bill of rights - such as no retaliation if a resident complains, residents can gather without management, etc.


The newest problem is high radon in some CCRC residences. Again, there is no state law protecting anyone - no requirement to test or to mitigate radon (if testing has a high radon result). This is true in most all states - a handful are stepping up to schools and day care, the EPA is looking to require testing for those with federal ties like mortgages and HUD. While this issue is not specific to CCRCs, it is just another thing that my community is so far ignoring. Owners of homes are free to make the low cost changes to their homes for their safety from lung cancer (by simply adding a pipe with fan). Those in apartments and other buildings are dependent on the building owner to fix things, and have no protection if they don't. The difference with everyone else is that those in CCRCs have paid an up-front entrance fee of many thousands of dollars that they lose if they leave, along with losing life care. We are simply hosed. The state DEP has been trying for years to enact law, and has had no success with state legislators. If they can't get action, it would take a miracle for me alone to get action from CCRC management.


Several states do have laws regulating CCRCs including Maryland, Washington, Florida, and California to name a few. The skilled nursing section is going be regulated by the Center for Medicare and Medicaid Services if it accepts Medicare and or Medicaid patients. The state health department will regulate the nursing section if the facility is not certified for Medicare. Many states also have assisted living regulations.


Ann MacKay

Maryland

Mary, unfortunately not much. See my replies to Alan and Joanne.


Jim Haynes

Message text removed by forum moderator

Alan,

Good points. Unfortunately this is not an unusual situation.. I note your membership has expired and you have been dropped. Please renew. There is no penalty. You will find much on website that may answer some of your questions. Does you state have a state organization that is an affiliate of NaCCRA?


Jim Haynes

I am very interested in knowing what has transpired in the area of lobbying efforts since these posts. I agree with the content of both posts.

That is so needed. I live in a CCRC that is in serious financial problems, but our resident representatives signed secrecy agreements and told the residents that everything was fine. The residents who asked questions were labeled as "troublemakers."
I have read many articles stating how CCRCs should work with residents to provide financial transparency and how CCRCs should be willing to provide a "seat at the table" for voting members of a resident council.  It is also apparent that there is very little state or federal regulation regarding the operating requirements CCRC boards.  Residents moving to a CCRC will sleep better at night if we know that the governing boards are being held accountable for their actions by state/fed statute.  I feel that laws governing CCRCs need to be implemented.  I'd like to suggest that organizations such as NaCCRA partner with other senior organizations (AARP, etc) to lobby for CCRC resident rights.
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