Care for the old should be a right, not a privilege

  GEORGE TEMPLETON   

        COMMENTARY         

My hope is that our twenty-nine year personal story, presented in two week intervals, about early onset dementia and neurosis will help others to understand the consequences of health care politics.  Part 1 described the influence of the author’s childhood.  Part 2 was about our moral dilemma and finding care facilities.  Part 3 considered secrecy within the industry.  Part 4 describes our experiences with the court.  Part 5 will be about our encounter with lawyers.    

Myths of Arizona Long Term Eldercare, Part 4

By George Templeton
Gazette Columnist

Home Again

It is difficult to distinguish between won’t and can’t.  We were frustrated by Sis’s feeling that she could not change the channel on the TV set without our help.  A person who will not try is certain to fail, but ALTCS considers only can’t.  They don’t understand that personality traits are permanent.  They only adjust in response to the situation. 

We toured all the homes in town in the two days that we had been allotted.  The emotional strain on caretakers far exceeds the physical demands of their jobs.  Our loved one’s anxiety, fear of men, and reclusiveness meant that she could not be expected to join in as a sharing communal member.  If she didn’t fit, we would be asked to take her out.  Most refused to take Sis because of her weight and crippled condition.  The only place in town that would accept Sis was an expensive skilled nursing facility.  But our family member could not tolerate a busy environment lacking privacy.  She would have to be drugged!

We changed our residence to the big city where there were more choices and took the ward into our home for a year.  The problem now was that venue was up to the original court.  If a lawyer had to appear before the judge, travel would cost thousands of dollars that the ward’s estate did not have.  If the judge ordered the venue to be changed to Maricopa County, a ward’s attorney, at added expense, in addition to the family conservator’s lawyer, would be required.  Past history and the fact that we were the only family did not matter.  The law takes priority and authority over blood relationships.  Whenever a loved one is mentally incompetent, they must have an additional independent lawyer because they don’t understand that they don’t need one.  Our ward’s money would remain with the court.  Now we would have to find a lawyer to get her funds released.

It’s the Law

Lawyer number three was afraid of the judge.  He refused to take our case, claiming “I have to appear before that judge”.  When we tried to discuss the medical situation we were told not to go there.  It was not relevant.  When we mentioned that my wife was intimidated by the court proceeding, he lectured us on court decorum, as though my wife had said something that the judge would not like.  He would not give us the name of any other lawyer who might take our case.  He was not on our side.

Lawyer number four agreed to argue our case before the judge, but the conservatorship papers had mentioned the restricted account that we wanted released.  We would have to go through the entire conservatorship process again and pay the price because of two words “restricted account” on the original document.  We had entered the world of official forms that only lawyers have and the cycle of bureaucratic delays resulting from their use.

Added time delays caused us to lose care facility openings that could have been ideal for Sis.  Our home was not designed like a nursing facility.  There were falling risks and we did not know how to care for Sis.  This tied our hands and confounded our attempts to secure an opening for our ward.

Government is here to help you.

The state refused to communicate with us.  We asked how long it took to roll onto ALTCS and their reply was six months.  In skilled nursing, that would add up to more than fifty thousand dollars.  When we asked why it took so long, their reply was that they did not have enough lawyers.  It seemed ironic that a social support network for the poor was so sewed up in costly legal proceedings.  Care for the old, which should be a right instead of a privilege, had become monetized and in the service of those who could play the game.  The problem is:  How can you secure care for your loved one when they have to be broke?  The funding that you need has to be unreachable.  There are two ways of planning to be broke, but both have drawbacks and expenses that somebody has to pay.

Gifting

Mathematics can’t calculate what happens to money given to a lawyer without definition.  It is certainly out of reach.  The amount of a gift may not be sufficient to pay the care center through the ALTCS bureaucratic delay interval.

Web sources caution to beware of a lawyer’s trust that comingles funds, making it difficult to understand their disposition.  ALTCS does not like gifts and imposes a time penalty when one is used to make a ward broke.  The length of the delay equals the amount of the gift divided by the official skilled nursing rate for your locality (roughly $6649 per month).  If something bad happens during the penalty duration, you are on your own.  Your ward has to be broke before ALTCS will talk to you.  The positive thing about the lawyer’s trust is that it shows the assisted living facility that money for them is secure. 

Invoicing Ahead of Time 

Another way to handle the roll onto ALTCS is to prepay two months’ rent thus making the ward broke ahead of time.  That is the time quoted by ALTCS to begin payment following qualification, but it could be and has been much longer.  It avoids the gifting penalty.  However, care facilities are not always willing to do this.  They will not accept the risk of someone pending ALTCS.  Something unforeseen could happen during the early payment period and sometimes ALTCS takes longer to start paying.  They will evict your ward if you do not pay promptly even though ALTCS pays retroactively to the time of qualification.  The assisted living center will accept your personal payment.  They will explain they refund nothing.  It would inconvenience their rigid bureaucracy.

City Life

Our change of residence to the big city gave us more choices.   We were able to locate an assisted living center that was conveniently located.  It targeted a less wealthy cliental and it was customer driven.  Their highly motivated employees were proud of their humanitarian ethic.   They cared about us and their residents.  If we stayed there for one year or more they would accept the negotiated ALTCS rate without requiring us to personally supplement the ALTCS rate.  It was negotiated for each case by the care facility and was confidential.

Each person is different.  Each assisted living facility is different.  ALTCS allegedly would allow the ward to stay in a semi-private room, but that depends on the unique situation involving the confidential living center operating expense, desired profit margin, and conservatee income.  You won’t be part of the negotiation.  There is no way to put it in writing, because the state is absent and the situation is undefined until it happens.  Care centers will not accept any risk.  They often require a residency time of one year or more before they will be willing to accept ALTCS.  That benefit is a marketing perk instead of a reality.

You are at the mercy of a business plan, management changes, government policy, and paying the unknown difference between the private room rate and what ALTCS will subsidize.

A New Owner Again

The center was sold a year later.  The new owners believed in top-down micromanagement instead of bottom up customer service.  They had software that would catalyze their executive competence.  The old crew left.

The new owner implemented a care assessment that measured our resident to 0.01 points out of 2000 and charged accordingly.  The number of categories more than doubled.  They were different from those used by the previous management.  But nothing can be classified without clear definitions of the boxes it will be put in.

Each category on the new assessment had a different time standard, so it was not possible to document the amount of time spent in care.  Furthermore, the people performing the care were not defined and there was no revised resident service plan.  Subjective measures, like “manage and monitor” ruled the assessment.  Prices were raised and services, like laundry, became extra cost options.  The corporation’s lawyers set a time limit on our approval of their care assessment and they indicated that if we did not sign, they would charge for their services anyway.

Our family was not notified of any change in medical status or overt behaviors.  The new assessment portrayed our resident as dramatically different, with more than half of the points score attributed to a problem that did not even appear previously.  My analysis used a pie chart to contrast the assessments.  Because all the categories had changed, it was the only way to make any comparison.  The new assessment did not encompass and explain the old.  The old assessment did not predict the new one.

Precise measurement of a resident also carries with it the notion of unambiguous independent variables.  They should not interact and overlap with each other.  When they do, there is multiple counting that raises points. 

For example, you will pay a fee for management and administering medications that are effectively controlling a problem.  Our resident had been taking them since 1998 and there was no further action required.  Management and monitoring added additional points on top of those charged for overseeing medications.  If you take a pill, there will be additional points and charges even though the pill controls the problem and no one is doing anything special or different.  More points meant that care costs would escalate far beyond the already increased costs that were not part of our original ALTCS strategy.  It was our plan based on our charge’s remaining wealth.  It was never acknowledged by the care facility or by our lawyer.

The new management explained to us that our family member needed to be sicker, and more expensive to care for, if the ALTCS medical qualification was to pass.  They were the opposite of care centers that would help you through the ALTCS process.  They pointed out that a caregiver would not be present when the ALTCS exam was conducted, but by now the caregivers were the only ones with immediate personal knowledge of our dependent’s condition.  Did they really want us to succeed in qualifying Sis for state support? 

Unlike her first care facility, the new one would continue to accept ALTCS residents.  To qualify for ALTCS, your care receiver has to be broke, but the new management would not accept the ALTCS pay rate.  Government has increased regulations, paper work, and reduced its funding in recent years.  Guess where the extra money would have to come from.  How much would it be?  Nobody knows, because that depends on business secrecy, the details of the particular patient, and the case manager.  We would be only an ancillary factor.  Sis would continue to decline in health, posing an ever increasing need for care and a financial risk to us.  It was clear that the new management was not on our side.  It was time to look for another situation.