NURSING HOMES RESIDENTS’ RIGHTS: DIGNITY, PRIVACY, FREEDOM
Enforcing a resident’s rights in a nursing home or other facility is critical to health and finances alike.
70% of us will need long-term care. Outside of the northern tier stretching west from Wisconsin, the vast majority of that care is provided in “facilities.” 20% of us will spend more than 5 years in a nursing home. 51.6% of us will die in one. Today, “nursing home” is a misnomer: CMS only requires that an R.N. be on site 8 hours per day.
This makes it even more important to think through our approaches to common problems before they arise, to choose a “facility” or “community” and read the license and contract carefully and to have someone not dependent on the care of employees ready, willing and able to stand up for us.
Nursing homes often seem to honor the 1990 Federal Nursing Home Reform Law in the breach. Assisted living facilities are not even licensed in all states. Continuing care retirement communities have a private regulatory organization.
All are caught by the rising cost of providing care and the different amounts they receive from private pay, Medicare and Medicaid. 2-3% of Texas nursing homes attempt to solve this by only accepting private pay. Others, which accept a mix, are required by law to provide care “to attain or maintain the highest practicable physical, mental, and psychosocial well-being” “practicable” without regard to source of payment. Those in Texas are so challenged that the outgoing New Mexico Attorney General has sued a Plano-based nursing home operator, asserting that the standard ratio of certified nurse’s assistants to patients (1:12) by itself makes this impossible.
A Baker’s Dozen
1. Before You Visit
Before visiting a nursing home or any other long term care facility, discuss your current and likely future needs with your physician. Think about what you need and what you want. Consider hiring a licensed, experienced geriatric care manager familiar with facilities in your area. Check the facility’s license at http://www.dads.state.tx.us for the bed and building you would enter now and those you might move to later. Check its rating at www.medicare.gov/nursinghomecompare and at https://www.propublica.org. Licensing information and these ratings can be helpful but the Medicare ratings are based on the facility’s own reports. A September 2015 article in The New York Times revealed that 80% of nursing homes report more nursing hours than are shown in their financial statements.
2. Who Pays?
In Texas only you are responsible for payment: not your spouse; not your children.
It is questionable whether the facility can legitimately ask your agent under a Power of Attorney to apply your funds, to submit claim reimbursement forms to a long term care insurer, and to apply for Medicaid. You are responsible. It is illegal for a nursing home to require someone other than you to pay or to guaranty payment, whether the paperwork reads “personal representative” or something else.
3. Your Plan of Care
It is also illegal for the nursing home to exclude you or your family, a geriatric care manager or other person you want to help you in developing or modifying a plan of care whether by contract, by inconvenient scheduling, by abbreviated meetings or by conducting meetings as though you would just rubber stamp what the “experts” decide. You are the expert on you. The plan of care must be individualized. The first care plan must be made within 48 hours or your admission. The first assessment must be done within 14 days after you enter the nursing home and implemented within the next 7. Plans of care must be changed as your needs change and reviewed at least annually. Many nursing homes review them with you quarterly. It’s your plan. It’s your care. Speak up. Have people attend to back you up. Ask them to help you follow up as well. A plan is only as good as its implementation.
4. Billing Medicare and Medicaid
Nursing homes receive more from you (private pay) than from either Medicare or Medicaid. Whatever you are told, you have the right to demand that they bill Medicare.
While waiting for a Medicare or Medicaid response, the nursing home cannot charge you for anything which Medicare or Medicaid would pay. It must wait to be reimbursed by Medicare or Medicaid or, if coverage is denied, bill you then.
But it can refuse to accept you if you or your family do not pay up front. If your status is “Medicaid pending” it can charge you at the higher “private pay” rate until you are financially eligible for and receive Medicaid. An AARP study found that 96% of Texans run out of money within 6 months of entering a nursing home and must rely on Medicaid.
If you are denied Medicare coverage, you can require a fast appeal (within 72 hours) if you can show that your health would be damaged by waiting the standard 30-day appeal period. The nursing home should support you in this. It should make sure that you or your agent under a Power of Attorney receive notice in time to appeal and that you have access to means to communicate with your agent under a Power of Attorney, your lawyer and the Medicare case worker and her supervisor.
If you are denied Medicaid coverage, you must receive two days’ notice before coverage ends. You must appeal to the Medicaid Quality Improvement Organization by noon of the day following the day on which you receive the notice. You should receive the decision the day after you appeal. Note that your doctor and therapist should be involved.
Again, the nursing home should make sure that you or your agent under a Power of Attorney receive notice in time to appeal and that you have a way to communicate with your agent under a Power of Attorney, your lawyer and the Medicare or Medicaid case worker and her supervisor. A nursing home typically receives about four times as much per day from Medicare (for a limited number of days) as from Medicaid. This means that it has less financial incentive to help you appeal a Medicaid denial than to see you leave and be replaced by a private pay or Medicare patient.
The therapy you receive should be no different whether you are paying for it privately or it is paid for by Medicare or Medicaid. It should continue regardless of whether you are “making progress.” Therapy should continue in order to help you maintain your current state of functioning and not decline.
Although this has been the law for years, there are still many nursing homes which do not follow the law. Nursing home residents rarely have the energy or money to sue. They may fear retaliation in the form of poorer care while the suit is pending. But some forms of litigation, such as seeking a Summary Judgment or a Motion for a Temporary Restraining Order with an Order to Show Cause can be quick and affordable. Long term care facilities prefer secret arbitration with no opportunity for you to get records, question people or appeal. In November 2016 the Center for Medicare and Medicaid Services, which sets the rules, tried to outlaw pre-dispute arbitration clauses in residents’ contracts. Nursing home associations filed a lawsuit which will take years to resolve.
You can refuse transfer within the facility if the proposed transfer is to move you to or from a Medicare-certified bed. As noted above, the nursing home gets more from Medicare than from Medicaid. Some nursing homes churn patients or move them around to increase their income.
7. Restraints and Proper Treatment
You have the right to be free from any physical or chemical restraint not necessary to treat your medical symptoms and administered pursuant to a doctor’s written order and with your informed consent. Wandering and “Sundowner’s Syndrome” are better addressed by alarmed doors and ankle bracelets than by tying people down or drugging them into bed-bound zombies.
It is absolutely critical to have a family member or someone else who holds your Medical Power of Attorney involved. A geriatric care manager is highly desirable. Texas nursing home ombudsmen, while they may do their best and do confirm 98% of complaints, are volunteers. They do not have set schedules. They are asked to visit as many people as they can. But they are not always available.
1 in 5 nursing home residents with dementia are administered psychotropic drugs to keep them more tractable — even though the FDA has ruled that these drugs should not be administered to seniors with dementia. They kill.
8. Your Needs and Preferences
The nursing home may try to put you on a schedule which minimizes the number of people it must hire and increases its profits.
But you have the right to reside and receive services with reasonable accommodation to your individual needs and preferences. You have the right to choose activities, schedules, and health care.
It’s your life.
9. What is Necessary
The nursing home must assist you in maintaining your ability to eat. A feeding tube can be used only if it is absolutely necessary. “Necessary” means necessary for you to receive medically appropriate and adequate food and hydration. It has nothing to do with the facility’s current staffing and scheduling. Those can be changed. Your needs cannot.
Your family and, with your consent, other people can visit 24 hours a day. The nursing home has become your home. It cannot impose visiting hours.
11. Returning after Hospitalization
If you are receiving Medicaid and have to go to the hospital, the nursing home must readmit you to the next available Medicaid-certified bed, no matter how long you were in the hospital. You will probably require more care immediately after a hospitalization. The nursing home may claim that it does not have a bed. Stick to your guns. Have an attorney call and, if necessary, file a Motion for an Order to Show Cause why the nursing home is violating the law. This quick and relatively low cost approach is useful in many areas.
12. Reasons for Discharge
There are only six legitimate reasons for discharge:
1. you don’t pay (and neither do Medicare or Medicaid);
2. you no longer need nursing home care;
3. the nursing home is going out of business;
4. your needs cannot be met in a nursing home (which is supposed to care for people with difficult and complex medical conditions and people with dementia); you require hospitalization or a specialized rehabilitation facility instead;
5. your presence endangers others; or
6. your presence endangers you.
13. Discharge Procedures
When a nursing home gives you a notice of discharge, it must state to where you are being discharged – and that must be an appropriate place. “Daughter’s home” is an appropriate place only if you and your family that think that it is an appropriate place. You must be given the notice 30 days in advance. You have a right to appeal.
A resident is a customer. Get your team involved: your doctors, nurses and therapists; your friends and family; your geriatric case manager or social worker; and, when needed, an elder law attorney.
You are a person, not an entry on a balance sheet.