FAMILYSTORY

BY Jean W. Yeager

TAKEN FROM New York State Department of Health Incident Report obtained under the New York Freedom of Information Law (FOIL) request and confirmed by interview.

BACKGROUND: MEET “THE SMITHS”

In the spring of 2012, shortly after Camphill Ghent started receiving its new residents, a couple – we’ll call them the “Smiths” for confidentiality- came from California to visit the Elder Care facility in New York. Why come so far? They had several concrete reasons: they had family ties to Camphill; secondly, like many others, the Smiths thought highly of the Camphill work with the developmentally disabled. Third, they believed the sales material which suggested the “community” care approach which Camphill used with the developmentally disabled would be transferrable to working with the elderly. Fourth, Mr. Smith had been diagnosed as having early stages of dementia which would be progressive and the Smiths were shown the unique set-up of Camphill Ghent and were shown features which might make it possible for them to “age together” – he in the Adult Home when he needed greater care, up the hill; and she in a town home, more independent, down the hill.

Mrs. Smith said that what sold her was the tour of the facility conducted by the Director of Nursing. She was shown what she was told would become a special “memory” unit with specially designed doors to secure patients. Mrs. Smith said she was told that when there were more Alzheimer’s patients the unit would be secured so the patients couldn’t wander.

There was even an outside, fenced in, “secure wander garden”, fenced off, where patients could walk around when the weather was nice.

(NOTE: In the January DOH Interview, the Investigator noted that Mrs. Smith had nothing in writing documenting these conversations. This is an important note for readers visiting retirement communities – make notes of your conversations, what you discussed, and have them signed or initialed by the staff members who gave you the tour. After all, this is a business conversation and part of a negotiation process.)

Various materials collected subsequent to the Smith’s interview support Mrs. Smith’s assertion of "memory care" and are published on this site - CLICK HERE - including a site drawing of the campus showing “Adult Home #1” up the hill from the townhomes which was printed as part of the “Welcome Packet”. The illustration shows the special secure “wander garden” just outside a small, cluster of apartments which came to be called “Zephyr”. The December 2011 newsletter from Camphill Ghent notes that the first two “of Zephyr’s first seven residents” had just moved in and the newsletter also announced the speaker that month was Beth Smith Boivin, CEO of the Northeast Alzheimer ‘s Association.

After the tour, and in discussing their possible future at Camphill Ghent, Mrs. Smith and her son made it clear that the senior Mr. Smith might start out residing with his wife in the independent living town house but his needs would probably escalate. They said they made sure that Camphill Ghent Adult Home was willing and able to accept Mr. Smith if and when those needs changed and dementia or Alzheimer’s symptoms manifested.

Mrs. Smith said: Camphill Ghent had complicated leases and agreements, but, other than the occupancy document she was given when he eventually did move into the Adult Home Camphill Ghent did not give her anything in writing like an agreement that they would care for her husband if his dementia worsened.

The Smiths moved cross-country at great expense to re-locate at Camphill Ghent in July/August 2012 They lived together initially in a town home about a quarter of a mile from the Adult Home.

In August 2012, there was an all community meeting of the Independent Residents which discussed Admission Requirements for the Adult Home. Mrs. Smith wasn’t at that specific meeting she said she went to other community meetings where residents were told ‘we’ll take care of you’, ‘you get first priority’, ‘residents can stay in the Adult Home until they die’, and so forth. She said it was all very comforting and re-assuring. Minutes from a comparable community admissions meeting CLICK HERE.

MR. SMITH’S NEEDS INCREASE

By September 2012, Mr. Smith’s needs changed and he was admitted to the Adult Care home at the top of the hill about a quarter of a mile from Mrs. Smith’s townhome. His admission was based on a specific diagnosis from a physician and Camphill Ghent provided him a room in the Adult Home #1 (described in detail elsewhere.) Once in the autumn of 2012, Mr. Smith began wandering down the hill to his wife’s townhome and showing up unannounced. The DOH interview indicates that this caused Mrs. Smith some concern and she called this to the administrator’s attention.

The pattern of Mr. Smith eloping undetected by Camphill Ghent staff continued. When Mrs. Smith complained, she said she was told that Camphill had an open door policy. Mrs. Smith said the staff told her that they would not stop him if he wanted to come to the townhome. She said she told them that it might be all right if they called her to make sure she was home.

In other Camphill Villages, developmentally disabled residents wander in relatively protected village neighborhoods. At Camphill Ghent residents of the Adult Home sometimes wander the community without supervision. As the administration says, we watch out for each other. Despite that, there have been reported instances of residents walking to the nearby Agway almost to the village of Chatham.

CAMPHILL GHENT SERVICES DECREASE

By January 2013, Camphill Ghent was scrambling financially. The Executive Director had stepped down November 2012. Rents were increased in February by 6% and more than 20% of the independent residents departed. According to the Camphill Ghent’s 2^nd Annual Report on the HEAL Grant, the organization made significant staff cuts in May 2013 which cut more than $100,000 in staff salaries from its budget. (To read that report CLICK HERE.)

The cuts included many of the initial management team including the facilities maintenance director, marketing sales director, administrative staff and finance as these functions were, in some cases, being handled by Camphill Ghent’s parent organization, Camphill Village USA. Former employees who were contacted by WelcomeToCamphillGhent.com in order to answer questions about whether or not special electronic door locks were already in place in Adult Home #1 to separate the small cluster of rooms in the“Zephyr” area from the rest of the facility, or whether or not “memory care” was a feature mentioned at all in the sales

May 2013 was also the time when Camphill Ghent was cited by the New York Department of Health LHSA for being “deficient” in seven key areas of quality. The report said that these deficiencies put patients at risk. That full report is included on this website as the 2013 LHCSA report. CLICK HERE

According to the Jan 2014 DOH Investigation, in August 2013, in a meeting with management about Mr. Smith’s changing behavior, Mrs. Smith and her son asked when the secure section of the Adult Home would be implemented. Mrs. Smith says she was told that things had changed - that Camphill Ghent could not afford the licensing, that the planned special unit had been filled with other sorts of patients, and there were no plans to open a special unit. Mrs. Smith reminded staff of the 2012 tour and what she was told and the staff denied that the conversation had ever happened, or if it had, she had misunderstood.

(The existence of the special “memory care” unit at Camphill Ghent – even as late as April 2013 - is documented in a separate section of this web site based on photographs and materials from Camphill Ghent.) TO SEE THOSE MATERIALS - CLICK HERE.

Mrs. Smith then asked if Mr. Smith could have a wander alarm – an electronic necklace or wrist device which would alert the staff if Mr. Smith left the building. Mrs. Smith said she was told by the administrator that she would look into it. Several months later, in early winter 2013, Mrs. Smith asked again and the administrator said that she had forgotten about it but would look into it.

JANUARY 2014 – SHORT STAFF – BIG RISKS

Mr. and Mrs. Smith’s life at Camphill Ghent started to come unraveled on January 24, 2014. The doors of the Adult Home were unlocked at 2 a.m. when Mr. Smith who couldn’t sleep, decided to visit his wife just down the hill – alone and un-accompanied, reportedly dressed in pajamas, a down vest, a hat and rubber boots.

This was very dangerous decision as it was a bitterly cold, only 11-degrees F. No one saw him slip out the unlocked doors. There was only a 2-person night staff – and no one was assigned to monitor Mr. Smith.

The lights around the Adult Home quickly fell away as he went down the hill. Deep snow covered the grounds and the road was dimly lit. It is not known how long Mr. Smith wandered until he found his wife’s townhouse.

According to the DOH interview, none of the aides noticed that Mr. Smith was missing. When Mr. Smith arrived at the town house and banged on the door he woke his wife. Mrs. Smith said she brought him in, made sure he wasn’t injured, warmed him up, put more clothes on him. A staff member called to say he was missing. His physician had been called as well. Mrs. Smith drove him to the Adult Home. She took him in and started complaining to the night staff. She said her anger rose as she considered the potential tragedy. She said that more than once she was informed by staff that they were not staffed to handle residents with this type of diagnosis and wandering residents. She reportedly asked why they didn’t get the tracking device she asked for last year. And she said the more she thought, about how dangerous the situation was and how the staff responded, the madder she got. When she returned to the town house she called the State of New York’s Adult Care complaint line (1-866-893-6772) and explained what had happened.

Little did she know that Adult Home operators do not take complaints to the state lightly.

NY DEPARTMENT OF HEALTH INVESTIGATION

Early the next morning, January 24, a NY State Adult Care Investigator was on-site at Camphill Ghent, informed the administrator of the very serious complaint and started her investigation. The Investigator began interviewing staff and administration. Mrs. Smith was called and asked to come to the Adult Home facility to be interviewed. Mrs. Smith asked her son to join her for the interview. The investigation lasted most of the day.

GHENT’S IMMEDIATE RESPONSE – “GO AWAY”

THE SMITH’S DELIVERED AN INVOLUNTARY TERMINATION NOTICE

A co-worker gave an unmarked envelope to Mrs. Smith and said that they were asked to deliver this to her. When she opened it she discover what is called an Involuntary Termination Notice which is a legal document informing Mrs. Smith that as of that day, January 24, 2014, the patient Mr. Smith’s occupancy at Camphill Ghent was being terminated and that the Smiths had until 2/24/14 to find him a new care facility.

This document outlines Mrs. Smith’s rights under the law including the right to a hearing. A link to the relevant laws is at the end of this article. Read the TERMINATION NOTICE by CLICKING HERE.

Mrs. Smith said she was stunned and shocked beyond anything she had ever experienced. She said that the termination notice came out of the blue and was totally unexpected. Mrs. Smith went immediately to the administration office where it was explained to her that Mr. Smith’s care needs had changed, that he was a risk to himself - and the orderly conduct of the facility - and that she would have to move him somewhere else. They offered to give her a list of local nursing homes.

Mrs. Smith said that she asked, “you mean you’re evicting us?’ ‘Can you do that?’ Or something like that, she said she was so shocked she didn’t exactly know what she said. Mrs. Smith showed the Involuntary Termination notice to the DOH Investigator who looked at it and handed the document back to her and simply said, “You won’t have to worry about this.”

But it was clear to her that the Smith’s relationship with Camphill Ghent had come to an abrupt conclusion and that she was going to have to manage an entire exit move, house search, finding another Adult Home placement for Mr. Smith – and all of this ALONE! The enormity of having to start over to find a place for Mr. Smith within 30 days was staggering.

CAMPHILL GHENT DOH VIOLATION - “ENDANGERMENT”

By February 24 the NY Department of Health delivered an Inspection report to Camphill Ghent which reflected that the Investigation had determined that the complaint of Endangerment could be substantiated and began a process of instituting penalties and corrective actions. That report is found elsewhere on this site - TO READ THE STATE OF NEW YORK INVESTIGATION REPORT AND ENDANGERMENT NOTICE - CLICK HERE

The notification specified that:

1) One Endangerment violation that demonstrated non compliance with regulations regarding Supervision and that the operator failed to provide supervision of residents at all times.

2) A plan of corrective action was required.

There are two levels of “endangerment” violations – the first level receives the above two requirements. The second, more serious level of endangerment - adds the following two penalties – an they were added in this case:

3) Penalties for failure to correct the situation could include civil penalties of up to $1,000 per day.

4) In addition, Camphill Ghent could be liable for civil monetary penalties for other violations of the Social Services Law.

NOT THE FIRST TIME FOR GHENT - RULES FAVOR OPERATORS – NOT RESIDENTS

Six months prior Camphill Ghent was cited being not in compliance and for providing care with “potential health risks”. They responded with a written plan for addressing the violations in a timely fashion – that takes the “pressure” off of Camphill Ghent. The DOH will not check to see if those violations are corrected or not until Camphill Ghent’s next annual inspection. According to advocacy organizations, at any given time between 60 to 80% of all Adult Care providers are “not in compliance” with Department of Health regulations. There is no requirement that an Adult Care provider like Camphill Ghent inform their residents that they are in violation of regulations other than to post a copy of the notification in a “public place”. Most put these in a 3-ring binder in a library.

Under current law, many facilities correct violations and go out of compliance again and again. The Long Term Care Community Coalition’s (LTCCC) study on assisted living in New York revealed that many facilities were in fact repeating resident care deficiencies year after year.

IS A PATTERN EMERGING?

Now this new, and more serious violation for Camphill Ghent - “Endangerment.” Endangerment is an event which can result in injury or death.

Endangerment is rare. Only 86 facilities in the State of New York were cited for endangerment between the years of 2002-2010. And, despite the severity of the actions to the residents, New York law impedes sanctions including civil penalties or fines if corrective actions are taken within 30 days.

According to the LTCCC of New York: “The fines for violations committed by assisted living facilities have not increased in over 35 years. As a result, their ability to serve as a deterrent to poor care has become negligible. Moreover, current law mandates that assisted living facilities that commit violations be permitted 30 days to correct before incurring any fines, unless the violation is "endangering a resident" (which is narrowly defined). Thus, not only are fines virtually meaningless, a facility can avoid almost any fine, even when they have caused harm to a resident.

CAMPHILL GHENT’S CORRECTIVE ACTION: “SMITHS MUST GO”

– "IMMEDIATE TERMINATION OF OCCUPANCY" IS THE “INDUSTRY STANDARD”

When you read the state documents and get down to the plan for corrective action which Camphill Ghent presented to the state in a timely fashion, you find that the first two “corrective actions” were: Involuntary Termination of Mr. Smith’s occupancy at Camphill Ghent, and informing Mrs. Smith that Mr. Smith’s occupancy had been terminated and they had 30 days to get out.

‘ This action makes perfect economic sense for a cash-strapped organization as many Adult Care providers are. The thinking goes like this: “Mr. Smith will require more staff time and therefore will cost more. His “needs” have exceeded our ability to care for him, therefore he must go. In addition, this is ‘disruptive’ for our community.”

Consumer advocates in the LTCCC’s report cite retaliation and inappropriate discharge as two common means by which institutions react when patients or their advocates complain to the state.

The second corrective action taken by Camphill Ghent was a quick response in writing to the State. Just by responding, adult care operators like Camphill Ghent who have been found in violation of the law, to continue operating without ever paying any penalties whatsoever.

Consumer advocates say that the rule that allows institutions to avoid fines if they make corrections within 30 days is “a slap in the face.”

ADULT CARE COMPANIES “PROMISE” AND

THEN DON’T DELIVER ON DEMENTIA CARE

What has happened to the Smiths at Camphill Ghent is not unusual in New York State. Many companies are getting into the care for the elderly business to take advantage of the rising tide of “baby boomers” – and Camphill is no different. The family members of the developmentally disabled for whom they have cared for so long offer an attractive market segment to which they will actively market as soon as their proposed next town house development phase is begun.

According to the LTCCC of New York it is so common for long term care or Adult Care facilities to promise significant dementia care and then not deliver, that as of June 2014, there is a new bill in the NY legislature to add real teeth to the enforcement provisions which are woefully outdated and let companies that have caused real harm to avoid enforcement.

ANOTHER STRATEGY TO GET RID OF

“PROBLEM” RESIDENTS - “DUMPING”

Geriatric and mental health professionals have reported that it is not at all unusual for an “elder care” facility to have a resident who, for one reason or another, is too costly or troublesome for the facility to manage. What happens to that resident in many cases is that a medical reason is “discovered” which allows the Adult Care facility to transfer an older resident to the hospital. Then, when the resident has recovered, there is no bed available for them in their original “elder care” facility. In the trade, this is called “dumping” and it is a way for Adult Care companies to balance their staff and resident needs so that profits are not endangered due to “high maintenance” patients.

DOH RULES MAY BE USED TO QUASH “EVICTION” THREATS

The State of New York has some very “narrow” and punitive rules on its books to handle situations where an operator takes what may be considered to be “unconscionable” action against a patient.

The New York code 18 NY ADC 486.5 says that if an Adult Care operator conducts certain specific attempts to intimidate a resident during or subsequent to an investigation then the $1,000 per day penalty may be implemented immediately upon the determination of the Department. These practices include:

- taking reprisal against residents or their families

- unreasonable threats of eviction or hospitalization

- failure of the operator to seek or provide care equal to the need of the patient

- inappropriate discharge

It may not be true that the delivery of the Involuntary Termination notice on the same day as an Endangerment Investigation was being conducted was a planned act of intimidation on the part of the operator, however, such actions by less scrupulous adult home administrations are not unknown in this industry.

CONCLUSIONS FOR THE SMITHS

In the case of the Smiths, one sees that despite the fact that the Involuntary Termination stating that Mr. Smith must be out by 2/24/14, the final correction plan filed by Camphill Ghent gave until the end of March for Mrs. Smith to find a placement for her husband. And, if by that time Mrs. Smith had not found a placement for him, then Camphill Ghent was to make persistent efforts to find placement for him in New York.

At the time of this writing, Mrs. Smith was planning to relocate with her husband and return to California.

TIMELINE (FROM DOCUMENTS)

January 24 – 2 a.m. - Mr. Smith wanders. Mrs. Smith takes him to the Adult Home and complains to staff. Based on response, Mrs. Smith is not satisfied.

- Mrs. Smith calls State of New York to complain

January 25 - 10 a.m. – DOH investigators arrive on site and begin inspection and staff interviews.

January 25 – Mr. & Mrs. Smith delivered “involuntary termination” of Mr. Smith. This form demands he be out in 30 days. DOH investigator block Camphill Ghent from enforcing this demand. Family determines they can move by the end of March. This is written into the March “correction plan”.

February 24 – Inspection report issued which substantiates complaint. This letter outlines penalties and required actions.

February 27 – Resident supervision “in-service” activities reported. The reports are dated in hand writing at the bottom: “December 2012 – Revised January 2014”

March 5 – Camphill Ghent attorney FAX letter dated March 5 and materials saying that the corrections have been implemented.

March 21 – Cover letter to DOH saying “correction plan enclosed”.

The plan details the following “corrections”:

Needs of patient have been evaluated and one-on-one provided

1/24/14 – Involuntary termination of patient (see document which demands patient be out by 2/24/14.

1/24/14 – Family notified patient #1 to be relocated (by 2/24/14).

1/29/14 – Caregiver patterns have been changed – increase night staff by 1

2/27/14 - Resident supervision inservice training conducted

3/19/14 – Waiver to install monitors in doors sent to DOH.

At the end of this packet of materials is a hand-written waiver dated 2/13/14 saying that door monitors will be installed

March 25 – Letter from DOH saying “correction plan received – plan found acceptable. Follow up visits may be conducted to confirm cited violations have been corrected.”

April – FOIL request submitted.

May – FOIL materials delivered