By K.T. Whitehead as presented at the Texas State Bar Elder Law Seminar, Spring 2004, copyright, K.T. Whitehead, 2004
Advocacy Tip Page
Advocacy Tip:
Educate clients about licensing levels in assisted living. Help them develop a set of questions to ask a facility staff about their licensing level and licensing limitations.
Advocacy Tip:
Help clients understand the difference between the medical model in the nursing home and the social model in assisted living.
Advocacy Tip:
Teach clients to ask what is charted in the assisted living facility: vitals, weight, etc. Have them specifically ask how doctor’s orders are charted and implemented. Explain to clients that facilities are not required to keep these records, so they as family members and residents may need to develop a system for keeping their own records.
Advocacy Tip:
Teach clients to ask about medication administration. Have them find out who gives, monitors and observes proper dosing. When is a nurse on duty? Is the nurse available twenty-four hours, seven days a week? How was the person giving medications trained?
Advocacy Tip:
Teach clients to ask about “PRN” medications. Have them specifically ask the facility management about who handles these medications, and how it is determined that the medications should be administered.
Advocacy Tip:
Ask facilities how many people they employ, what education and training staff members have and what the staffing patterns are.
Advocacy Tip:
Teach clients to request and how to read Disclosure Statements. Teach clients to carefully read the facility’s discharge policy.
Advocacy Tip:
Ask for the state required disclosure statements on the first visit. (Do not wait until admission.) This will provide the client with accurate information on costs, services and staffings and allow clients to compare information about various facilities without the marketing trappings.
Advocacy Tip:
Teach clients the difference between a licensed assisted living facility and a retirement home where services may be purchased from an outside agency.
Advocacy Tip:
Teach the client’s family to visit frequently at various times just like in a nursing home setting. Have them ask the client and the assisted living staff about medications, eating habits and staff observations of a client’s daily activities and needs.
Advocacy Tip:
Teach clients and families to report abuse and to question the use of restraints.
Advocacy Tip:
Many times families will come in at the onset of a crisis. At this point, educate your client to recognize when it is appropriate to hire additional care or leave an assisted living facility.
Advocacy Tip:
When advocating for your client’s family member or for your client in a discharge situation, the resident rights in Texas give the advocate strong grounds for delaying or terminating the transfer process.
Advocacy Tip:
As an advocate, examine the discharge notice to insure that it meets all of the administrative requirements. Discuss with your client or their family if “aging in place” is appropriate. Finally, discuss with the client and family if assisted living truly is the appropriate place for residency and care. One of our more difficult jobs is to help clients and families understand when it is appropriate to move, when care needs exceed the facility.
Advocacy Tip:
If a client is asked to participate in a negotiated risk process, attend the meeting and review the contract prior to the client’s or their family’s spokesperson signing the contract. These situations favor the facility and generally are an attempt to exonerate the facility from liability.
Advocacy Tip:
If given the opportunity, as counselor for the assisting living resident, we as attorneys need to examine the contract and the Disclosure Statement to insure that the two match. It is important to be realistic with the clients about what services they need and insure that they are fully aware of the costs for obtaining these services.
ASSISTED LIVING: BUYER BEWARE
Advocating for Your OlderClient
I. INTRODUCTION
“I promised Mom I would never put her in a nursing home.” This common mantra is one of the driving forces behind the assisted living market. There is a dynamic tension in any family who is faced with handling a medical or functional crisis in an older family member’s life. Almost every client’s desire is to live at home. Stabilizing the housing arrangements is often the first step in stabilizing the overall situation. Developing a stable housing arrangement many times will allow the older person to avoid a guardianship, and allow the family members to continue to use informal procedures, such as medical directives, powers of attorney, and surrogate decision making. Together, stable housing and informed decision making about housing can enable independence for an older adult. Too often, the promise and the crisis work against good decisions. As advocates for older clients our job is to assist clients and their families in seeing beyond the promise, so the client and their families can make solid decisions.
Housing can be viewed as a continuum of care: starting with one’s private home or apartment; then moving to more supportive housing like a retirement apartment with meals and housekeeping; to board and care homes or assisted living with personal care; to nursing homes with medical care. The continuum of care recognizes that as people age they may need additional support or care. Not all people will experience or live in all levels. The housing options have blossomed since the late ‘80’s when marketers recognized the age wave. The fastest growing segment of our population is those adults who are over the age of 85; and over one-half of all the people in the world who ever turned sixty-five (65) are alive today. Tim Boyce, Financing Senior Living Facilities, American Bar Association, 1996.
As an advocate for seniors, it is important to be familiar with what each level of care offers, how and if they are regulated and who they serve. By understanding housing options and the strengths and weaknesses of the different levels of care, we can better serve as advocates. “Assisted living” has been like shifting sand, as marketers have tried to identify and meet the public’s desire to avoid a nursing home.
II. ASSISTED LIVING RESIDENT PROFILE
“The typical assisted living resident is a woman who is between 75 and 85 years of age, who is mobile, but needs assistance with two activities of daily living.” Facts About Assisted Living, The National Center for Assisted Living, March 2001, at 2 (Facts About Assisted Living). The activities of daily living are generally defined as bathing, dressing, transferring, toileting, and eating. Facts About Assisted Living, NCAL, March 2001, at 2. In contrast, a nursing home resident generally requires assistance with three to four activities of daily living. Id. Assisted living residents generally require more help with what are called “instrumental activities” or “functional activities” of daily living such as telephoning, shopping, meal preparation, housework, taking medication and managing money. The National Center for Assisting Living found that while eighty-one percent (81%) of the residents need assistance with two activities of daily living, ninety-three (93%) percent of all assisted living residents need assistance with the instrumental/functional activities of daily living. Id.
The profile of need straddles a thin line between medical and non-medical care. The assisted living industry has been quick to capitalize on the public’s desire to avoid nursing homes. Only by examining the specific activities of daily living and instrumental activities through licensing is it possible to begin to evaluate what is appropriate for our clients.
III. DEFINITION
The concept of assisted living is difficult to define and measure. The fluidity of definition makes the exact number of assisted living facilities difficult to measure. However, one thing is clear, the number is growing quickly. Nationally it is estimated that there are approximately 32,886 licensed assisted living residences, with 795,391 units, or beds, nationwide. Id.
The industry definition is more descriptive than definitive. The National Center for Assisted Living, a coalition of industry and senior advocacy organizations, defines assisted living as “a long-term care alternative for seniors who need more assistance than is available in a retirement community, but who do not require heavy medical and nursing care provided in a nursing facility.” Id. They go on to state that assisted living is for “residents [who] live in a congregate residential setting that generally provides personal services, twenty-four-hour supervision and assistance, activities and health-related services designated to: minimize the need to relocate; accommodate individual residents’ changing needs and preferences; maximize residents’ dignity, economy, privacy, independence, choice, safety; and encourage family and community involvement”. Models of Care: The Medical Social Family, The National Center for Assisted Living, 2001. From the definition it is clear that the industry is trying to meet a very broad population base.
There are no federal standards for assisted living. Facts About Assisted Living, The National Center for Assisted Living, March 2001, at 2. Those in the assisted living industry have maintained an active lobby to squelch attempts to regulate assisted living at the federal level. Each state develops its own standards, and the National Center for Assisted Living says that 99% of the facilities are licensed by some licensing agency. Id.
While there is a definite place for the assisted living model, the breadth of services with little or no regulation, makes it very difficult to define what is being offered, what standards should be used to evaluate quality and care and who is an appropriate resident.
The one constant with assisted living is that these facilities are licensed as non-medical facilities with no nurses or other health care professionals required for licensure. White Paper on Assisted Living, The National Academy of Elder Law Attorneys at 2 (White Paper). This is a very startling fact when juxtaposed against the statistic. The primary need of eighty-six percent of all of those who are living in assisted living, of the functional and instrumental activities of daily living, is medication assistance. Facts About Assisted Living at 2. There are generally three types of assisted living facilities: board and care facilities, licensed or certified facilities, and facilities such as retirement communities where services are provided by an outside provider. White Paper at 2.
Texas requires licensing for any facility housing four or more residents. Texas defines four types of facilities: A, B, C, and E. Under the licensing standards, “a person establishing or operating a facility that is not required to be licensed [under the Texas Administrative Code] may not use the term ‘assisted living’ in referring to the facility or the services provided at the facility.” Tex. Admin. Code § 92.10(b). The Texas definitions are based on three primary factors: size, need for assistance during the night and the residents’ ability to evacuate. None of these factors takes into account what assistance is being offered or given on a daily basis nor what assistance the residents need. It is laudable that Texas in contrast with the national trend has implemented some standards.
A. Type A Facility
In a Type A facility, a resident “must be physically and mentally capable of evacuating the facility unassisted. This may include mobile non-ambulatory persons such as those in wheelchairs or electric carts.” Tex. Admin. Code § 92.4.
“Residents in a Type A facility must be physically and mentally capable of evacuating unassisted; not require routine care during sleeping hours and must be capable of following directions under emergency conditions.” Tex. Admin. Code § 92.4(1)(A)(B)(C).
B. Type B Facility
In a Type B facility, the resident “may (A) require staff assistance to evacuate; (B) be capable of following directions under emergency conditions; (C) require attendance during nighttime sleeping hours; or (D) not be permanently bedfast but may require assistance in transferring to and from a wheelchair.” Tex. Admin. Code § 92.4(2)(a)(B)(C)(D).
C. Type C Facility
Type C facilities are four-bed facilities that contract with the state and provide adult foster care. They must meet specific contracting requirements. Tex. Admin. Code § 92.4(3).
D. Type E Facility
Type E facilities are those which are limited to sixteen or fewer residents. Tex. Admin. Code § 92.71. Residents in a Type E facility must be physically and mentally capable of evacuating the facility unassisted. This may include persons who are mobile, although non-ambulatory, such as persons in wheelchairs or electric carts having the capacity to transfer and evacuate themselves in an emergency; (ii) must not require routine attendance during nighttime sleeping hours; (iii) must be capable of following directions under emergency conditions.
Type E facilities are also limited in that they may not have residents who require substantial assistance with activities of daily living such as assistance with meals, dressing, movement, bathing, or other personal needs or maintenance. They may provide only minimum medication supervision. Tex. Admin. Code § 92.4(4)(B). The Texas Administrative Code does not define “routine care” or “minimum medication supervision”.
There are two types of facilities defined under the A, B and E licensing: large, with seventeen or more residents, and small, with fewer than sixteen. Tex. Admin. Code § 92.61. In a large Type A facility, there must be night staff and they must be available and awake. In a small facility there must be night staff who are immediately available, but not necessarily awake. In a Type B facility, regardless of size, the night shift must be immediately available and awake. Tex. Admin. Code § 92.4(1)(i) and (ii).
Additionally, in Texas, there is a certification available for Alzheimer’s facilities. The certified facilities have additional staff and educational requirements. Tex. Admin. Code § on 92.5(1). A facility cannot promote or advertise itself as an Alzheimer’s facility without this special certification. It is extremely important to note that facilities can describe caring for people who are forgetful, without being licensed as an Alzheimer’s facility as long as they do not use the word “Alzheimer’s.” Tex. Admin. Code § 92.51(a).
Advocacy Tip: Educate clients about licensing levels in assisted living. Help them develop a set of questions to ask a facility staff about their licensing level and licensing limitations.
Large facilities, those with seventeen or more residents, must have an on-site manager. In small facilities, such as the Type C facilities, managers may manage up to four facilities for a total of sixteen residents.
To understand assisted living facilities as an advocate, one must think through what it means to monitor medication and the activities of daily living, as opposed to administering medications and assisting with the activities of daily living. Too often, clients are attracted to the eye candy of assisted living facilities, and do not understand their licensure limitations on care and the facility’s inability to provide certain levels of care because of their staffing.
Consumers often avoid the nursing home because they have promised Mother they will never place her in a nursing home. They begin looking at assisted living facilities when Mother has begun to decline but is really not in need of nursing care because she only needs assistance with a couple of activities of daily living, if at all, and with her instrumental activities of daily living like medication. Thus when the consumer begins the placement process into a non-home environment, they are attracted to assisted living facilities because of the home-like and non-medical environment.
IV. MEDICAL VERSUS SOCIAL MODEL
“Assisted living services are driven by a service philosophy that emphasizes personal dignity, autonomy, independence, and privacy. Assisted living services should enhance a person’s ability to age in place in a residential setting while receiving increasing or decreasing levels of services as the person’s needs change.” Tex. Health & Safety Code Ann. § 247.0011(c) (West 2002). The state definition of assisted living focuses on what the assisted living industry strives to create: a facility that has significantly more privacy than a nursing home with the majority of residents living in private rooms. Part of the issue with assisted living is that these are non-medical models. Industry advocates call this a social or residential model. See The National Center for Assisted Living website, www.ncal.org.
In a medical model, like a nursing home, all services are physician driven. A resident can only be admitted or discharged on a physician’s orders. The plans of care start with the physician’s orders and are developed to meet the patient’s physical, social and psychological needs through the lens of the doctor. Jeanoyce Wilson, the Program Director at Texas Department of Human Services, and one of the key people drafting Texas’ assisted living regulations, noted it is very deliberate that there are no required medical personnel in assisted living facilities in Texas. Jeanoyce Wilson, Program Director, Texas Department of Human Services, Interview with author, January 7, 2004.
Despite best efforts to keep residents in assisted living settings, a recent government study found that 59.2% of all assisted living residents moved to a nursing home, 1.3% to a hospital, and 3.4% to a rehabilitation or sub-acute facility. (http://aspe.os.dhhs.gov/daltcp/reports/alresib.htm, page 11). Well over half of the assisted living community moved to a higher level of care. Additionally, the same survey found that 27.8% of the residents moved to another assisted living facility which offered a higher level of services. (http://aspe.os.dhhs.gov/daltcp/reports/alresib.htm, page 11). The survey concluded that 78% of the residents moved to a more “service-rich environment.”
This same survey found that there were three variables which created a significantly greater stability: (1) that the facility was a not-for-profit; (2) there was a full-time Registered Nurse (RN) on staff who provided nursing care; and (3) there was a stable nurses’ aid staff. The result of the survey showed that in a for-profit setting, residents were three times as likely to move to another care setting. In facilities with no RN, the residents were two times as likely to move. Approximately 25% of the entire facility population turned over in a 12-month period. (http://aspe.os.dhhs.gov/daltcp/reports/alresib.htm, page 3). Clearly the nursing care, the RN availability and non-profit philosophy somehow add an element of stability to assisted living. These elements add professional observations, accurate medication administration and a potential for better overall care.
Assisted living facilities do not require doctor’s orders for admission or to create the care plan. In Texas, a resident in assisted living must have a medical history and physical completed thirty days prior to admission or within fourteen days after admission. Tex. Admin. Code § 92.41(h)(2). The requirements for a “service plan” are minimal. Tex. Admin. Code § 92.41(c). here are no further medical requirements in assisted living. In a nursing home, a physician must visit every thirty days for the first ninety days and then every six months to a year depending on the resident’s level of care.
Advocacy Tip:
Help clients understand the difference between the medical model in the nursing home and the social model in assisted living.
The contrast between the details of nursing home requirements in a medical model, and assisted living in a social/residential model are best understood when several key elements like medication delivery and charting are examined.
A. Charting
In a nursing home, nurses must chart “at least monthly. Routine charting for residents must reflect the recipient’s ability as assessed on the way he performs his activities of daily living at least sixty percent of the time; and at the time of any physical complaints, accidents, incidents, change in condition or diagnosis, and progress.” Tex. Admin. Code § 19.1010(3)(1) & (2). Charting includes monitoring the residents’ medications, skin, weight, fluid intake and output, and routine vital signs. Nursing homes must always follow doctor’s orders.
On the other hand, in an assisted living facility in Texas, charting requirements are minimal. Resident records must only include: the admission form, the initial resident assessment, the resident’s service plan which is reviewed on an annual basis, and any physicians’ orders and advance directives. Tex. Admin. Code § 92.41(h)(2). The staff in an assisted living facility has fourteen days to develop a service plan for the resident. The service plan must include general information about the resident such as from where the resident was admitted, the resident’s primary language, sleep cycle, behavior symptoms, psychological issues, Alzheimer or dementia history, activities of daily living patterns, preferred activities, cognitive skills for decision making, communication ability, physical functioning, continence level, nutritional status, dental status, diagnoses, health conditions, special treatment procedures, hospital admissions information and preventative healthcare needs. Tex. Admin. Code § 92.41(c).
While this list may seem comprehensive, it is important to recognize (and educate clients) that in a nursing home setting, these plans are monitored and maintained on a monthly or more frequent basis and that the list of assessed issues is over thirty pages in length. (Minimum Data Set.)
Without detailed information in charts, families and physicians lack early indicators of decline, like weight loss, fluctuating vital signs and fluid loss or retention.
Advocacy Tip:
Teach clients to ask what is charted in the assisted living facility: vitals, weight, etc. Have them specifically ask how doctor’s orders are charted and implemented. Explain to clients that facilities are not required to keep these records, so they as family members and residents may need to develop a system for keeping their own records.
B. Medication Delivery
Although over eighty-three percent of the residents in the assisted living facility need assistance with medications, the charting and monitoring requirements in Texas are minimal. This is one of the major issues that must be discussed with clients. According to the Texas Administrative Code medications must be administered in accordance with physicians’ orders. Tex. Admin. Code § 92.41(j)(1). However, who administers the medications is barely regulated.
1. Routine Medications
While the Texas Administrative Code allows residents to self-medicate, it is clear from the national statistics that one of the major causes for a person moving into an assisted living facility is the need for some sort of medication monitoring and administration. Facts About Assisted Living at 2. The Texas Administrative Code requires that medications be given by someone who holds a license that authorizes them to administer medications, a medication aide, or “an employee of the facility to whom the administration of medications has been delegated by a registered nurse who has trained them to administer the medications or verified their training.” Tex. Admin. Code § 92.42(j)(1). What this means is that the person administering medications does not need to hold any sort of license or have any formal education in medication.
The charting requirements for assisted living require that documentation of medication be charted according to the license of the person dispensing the medication. Theoretically, this means that if the medications are dispensed by a non-licensed professional, there are no charting requirements. The Texas Administrative Code does require that the person delivering medications chart when a resident does not take medications. Tex. Admin. Code § 92.41(j)(4)(B). However, it does not specify whether or not the person delivering medication is to actually witness the patient’s consumption of the medications. If they are administered by a Registered Nurse (RN), Licensed Vocational Nurse (LVN) or medication aide, the dispensing must be properly documented and charted and would include witnessing consumption. For our clients and their families it becomes virtually impossible to monitor proper medication administration.
The Texas Administrative Code does require all the resident’s medications to be listed on that resident’s medication profile record. Tex. Admin. Code § 92.41(j)(1)(D). Supervision of resident medication may consist of reminders to take medications at prescribed times, opening containers or packages and replacing lids, pouring prescribed dosages according to medication profile records, returning medications to their proper areas, obtaining medications from pharmacies and listing them on the medication profile charts. Tex. Admin. Code § 92.41(j)(2). Again, these functions may be done by someone who is not licensed to administer medications.
It is this author’s experience that the delivery of medications by non-licensed staff can be dangerous. In one instance, the “supervision of medication” in an assisted living facility included delivering the medications to the resident’s room. The resident told the person administering the medications that she would “take them later”; the resident set the medications on a counter. When I visited, there were eight days of medications left on the counter. The danger was not only to the resident who was suffering from “forgetfulness” or who could take more than one dose and subsequently overdose, but it was also to other residents with minimum capacity who could wander into the client’s room and self-medicate using another resident’s medications.
A local physician tells the story of prescribing medications, leaving orders with the evening caregiver and returning thirty days later to find the prescription unfilled and still clipped to the resident’s chart.
These examples illustrate the practical concern that without the monitoring of a licensed professional it is possible that no one would observe whether or not the medication is taken, if it is taken properly, at proper times or the reaction of the resident to the medication.
2. PRN Medications
One of the most potentially dangerous issues arises when residents have medications prescribed “as needed” or “PRN”. PRN medications may include mood stabilizers, pain relief, psychotropic drugs, etc. These are all powerful drugs that can be administered when the resident “needs them”. Typically, in a nursing home or hospital setting, a trained professional verifies certain symptoms and administers the medications in accordance with the symptoms per a physician’s orders. The danger in an assisted living facility is that there may not be trained professionals available to administer the medication, nor are there people who understand what symptoms cause the need for the medication’s administration. Thus, PRN medications may go unused or be overused because of the staff’s lack of understanding, knowledge and training, or because of the resident’s inability to communicate.
Advocacy Tip:
Teach clients to ask about medication administration. Have them find out who gives, monitors and observes proper dosing. When is a nurse on duty? Is the nurse available twenty-four hours, seven days a week? How was the person giving medications trained?
Advocacy Tip:
Teach clients to ask about “PRN” medications. Have them specifically ask the facility management about who handles these medications, and how it is determined that the medications should be administered.
C. Staffing
In nursing homes, state and federal regulations are strict as to how many staff and what level of staffing must be in the facility at any given time. In Texas, in a nursing home, there must be a licensed nurse in the home twenty-four-hours a day, seven days a week at specific ratios depending on the number of residents. There are certain levels of requirements for nursing aides, varying from shift to shift. Tex. Admin. Code § 19.1002.
In assisted living, however, the staffing patterns are much more fluid. There are no specific requirements for staffing levels. A facility must have a manager forty hours per week if there are over seventeen residents, and must have sufficient staff to maintain order, safety, and cleanliness; assist with medication; prepare and service meals; assist with laundry; provide supervision and care to meet the basic needs; and insure evacuation in the case of emergency. There are no specific staffing ratios. Tex. Admin. Code § 92.41. Facilities, however, must disclose their staffing ratios in their facility disclosure sheet. Texas Department of Human Services Forms 3647 and 3641.
Alzheimer’s facilities in Texas have a similar requirement where they must provide a manager and staff to provide services for and meet the needs of Alzheimer’s residents. They must also employ enough staff to meet the evacuation plan depending on their residents’ functioning level. Tex. Admin. Code § 92.51.
Alzheimer’s facilities have additional staff training and requirements that general A, B, C and E facilities do not have.
Advocacy Tip:
Ask facilities how many people they employ, what education and training staff members have and what the staffing patterns are.
D. Disclosure Statements
In Texas, each facility is required to complete and have posted a Disclosure Statement. The Disclosure Statement is a Texas Department of Human Services form, Form 3647 for Assisted Living and Form 3641 for Alzheimer’s Facilities. On admission, this statement must be presented to each admitting resident, their family or legal guardian. The Disclosure Statement reveals the services offered; what is included in the rate that the new resident will be paying; what services may be purchased for an additional charge; and what the charge is for each service. Most importantly, the Disclosure Statement reviews the discharge and transfer procedures for the facility.
On the Disclosure Statement the facility must reveal their staff and staffing patterns. They are to reveal to the potential resident in a chart what personnel is on duty, their level of education and licensing and what other workers are in the facility.
In preparing this paper, the author randomly selected ten facilities out of the telephone book and called to request Disclosure Statements. Four facilities’ staff immediately said, “Sure, I’ll fax it right over or put it in the mail.” Three said that they would have another person return a call about the statement. They didn’t return the call. One facility stated that they are only an independent living facility and that they did not have a Disclosure Statement.
In the last case, the independent living facility was a retirement apartment that listed itself in the telephone book as an assisted living facility. In this instance, services were provided by an outside agency in the retirement setting. There are no licensing requirements for this type of facility.
In Texas a facility may not to hold themselves out as an assisted living facility unless they are licensed. This example shows that some facilities do not observe the Code.
Clients must learn to request the Disclosure Statement early in the decision process. While the Texas Administrative Code requires that the statement be given on admission, it is important for clients to begin asking for the Disclosure Statement when they first visit the facilities. This will enable the client to adequately compare facilities with one another and to understand exactly what services are being offered in a facility. The Disclosure Statement is one of the best tools we as advocates may use to evaluate a facility’s care.
Advocacy Tip:
Ask for the state required disclosure statements on the first visit. (Do not wait until admission.) This will provide the client with accurate information on costs, services and staffings and allow clients to compare information about various facilities without the marketing trappings.
Advocacy Tip:
Teach clients the difference between a licensed assisted living facility and a retirement home where services may be purchased from an outside agency.
Advocacy Tip:
Teach clients to request and how to read Disclosure Statements. Teach clients to carefully read the facility’s discharge policy.
E. Inspections
Regarding applications for licensing for assisted living facilities, the Texas Administrative Code has extensive requirements for both fire safety and building safety for assisted living facilities. Tex. Admin. Code § 92.61 and 92.71. They follow routine building codes. The key to Texas licensing is the life safety code. The initial licensing point is the only point at which the state is required to inspect for life safety issues. Jeanoyce Wilson, Texas Department of Human Services, Interview, January 7, 2003.
Assisted living licensing focuses evacuation ability of the resident, Tex. Admin. Code § 92.4, and the building safety standards necessary to meet the evacuation standard, Tex. Admin. Code § 92.61. This was a very deliberate focus to avoid requiring medical staff. Jeanoyce Wilson, TDHS, Interview, January 7, 2003.
Once a facility has met the basis safety code requirements, inspections become minimal. The Tex. Admin. Code § 92.81(a) states “the Texas Department of Human Services (DHS) inspection and survey personnel will perform inspections and surveys, follow-up visits, complaint investigations, investigations of abuse and neglect and other contact visits from time to time as they deem appropriate or as required for carrying out the responsibilities of licensing.”
While there is no frequency of inspection period specified in the administrative regulations, facilities must renew their licenses annually. At the time of renewal, the resident population is reviewed by an inspector. Id.
F. Early Intervention
One key factor for healthy, independent aging is to receive consistent care. In assisted living, the older adult receives care in a very unstructured environment without medical supervision. Theoretically, this allows independence and privacy. Practically, routine health changes are not monitored in assisted living. As described above, medication monitoring is minimal. Charting is by exception. Vital signs and weight may not be taken on a routine or regular basis. There are no charting requirements for medications or vital signs. What this means in practical terms is that residents in assisted living facilities are not monitored for key indicators of health. Thus, a resident may experience significant weight loss or gain without proper medical intervention. They may have fluctuating blood pressure and pulse. Without regular checking of vital signs it is very difficult to monitor when it is appropriate for medical intervention.
While this is exactly what happens when an older adult lives in their own home, many families are under the impression that mom or dad are now being cared for and that the family need not worry. Additionally, the older adult is in an assisted living facility because they do need some supervision or support.
Thus, the family and the client are relying on a resident’s ability to communicate their problems, and the staff’s finesse, professionalism and ability to monitor fluctuations. This makes it difficult for the family and client to recognize problems when they arise and consider moving to a higher level of care or purchasing additional services.
The lack of monitoring may delay the ability for a resident to receive medical or care intervention in a timely fashion. There do not appear to be any studies of the correlation of a resident’s decline in assisted living and proper intervention. It is this author’s experience that assisted living facilities are not always able to be proactive in resident care because they do not have the tools. For example, because they usually do not weigh residents and have constant staff turnover, a dementia client’s weight loss can go unnoticed until the resident must be placed in a nursing home because she is malnourished. Or, the resident could suddenly become “violent” and hit an aide. Only later, could it be discovered she had a urinary tract infection and had not been taking fluids or urinating regularly for days. In that condition, who wouldn’t be “violent”.
G. Who Should Be In Assisted Living
The ideal person for an assisted living facility is someone who has a stable medical condition, who requires no wound or skin care, who simply needs some tender loving care, companionship, regular meals and routine medications. This person would not require any type of care that relies on the caregiver’s judgment to implement medication such as an as-needed, PRN medication. For Alzheimer’s and dementia units, the ideal resident would be a person who needs security but requires little or no medical care, has routine medications and is of a minimal fall risk.
Advocacy Tip:
Teach the client’s family to visit frequently at various times just like in a nursing home setting. Have them ask the client and the assisted living staff about medications, eating habits and staff observations of a client’s daily activities and needs.
H. Restraints
Assisted living facilities are not allowed to use restraints in Texas. Tex. Admin. Code § 92.41(p). “All restraints for purposes of behavioral management, staff convenience or resident discipline are prohibited. Seclusion is prohibited.” Residents who are in need of chemical or physical restraints should not be in an assisted living facility. Restraints require monitoring and management by licensed personnel. Thus, residents who have these requirements must move to a nursing facility.
Advocacy Tip:
Teach clients and families to report abuse and to question the use of restraints
V. DISCHARGE
Discharges from assisted facilities need to be examined on several levels. First, when is it appropriate for a resident to leave? When will a facility ask a resident to leave? What rights does a resident have when deciding whether or not it is time to leave a facility? After someone has moved into an assisted living facility, it is then important to periodically evaluate whether or not they should continue living in the facility when their conditions and needs change. Once in the facility it is extremely important to periodically examine the resident’s need for medication monitoring and whether or not their activities of daily living and their instrumental activity needs have increased. If they have, the family, the resident and the facility must evaluate and discuss whether it is appropriate for the resident to stay in the facility.
A. Aging in Place
In 2002, the legislature outlined procedures to allow a resident to stay in a facility and “age in place”. These standards were integrated into the Texas Administrative Code in 2002 in Section 92.41(e)(2). Aging in place is the term used to allow someone whose needs have changed to remain in their assisted living facility. At the time of admission, the facility and the resident must have an agreement as to what services are provided and the charges for the services. Tex. Admin. Code § 92.41(e). Under the admission policies, the facility cannot admit residents who do not meet the assisted living requirements. Id. In Texas, as discussed above, the primary requirement is the ability to evacuate from the facility.
The Texas regulations specifically state that someone should be allowed to age in place. However, the facility must put into action a specific plan for that person to age in place safely. The unusual part of the Texas regulations is set out in a letter dated August 16, 2002, to all assisted living facilities from Mark S. Gold, the Director of Long-Term Care Policy. Mr. Gold states that aging in place is “the concept that persons aging and requiring more services should be allowed to remain in their environment.” To facilitate this Mr. Gold sets out specific requirements which a facility must follow if a resident is no longer able to evacuate under the licensing requirement (inappropriateness is based on a resident’s ability to evacuate, not on activities of daily living or instrumental activities like medications). Mr. Gold states the facility must seek a waiver. However, the facility does not need to seek a waiver unless the facility is inspected and found to have residents who are not appropriate. Id. Thus, the facility does not have a proactive method or duty to seek a waiver for residents who are inappropriately placed in assisted living.
The practical result of this is that facilities are not inspected on a regular basis and there is no method of finding these residents who are inappropriately placed. Thus, a resident may be in the facility and inappropriately placed without a plan of action for evacuation or care for an extended period of time.
If the facility is cited and the resident is inappropriately placed, the facility must then seek permission from the Department of Human Services for a waiver. Gold’s letter specifically states the facility may not seek a waiver prior to inspection. As part of the waiver the facility puts into place a method for evacuation or delivering services that is over and above that routinely allowed under their licensing status. This alone poses a huge burden on clients and their families to determine when it is appropriate to move.
Advocacy Tip:
Many times families will come in at the onset of a crisis. At this point, educate your client to recognize when it is appropriate to hire additional care or leave an assisted living facility.
Should the facility determine that it is inappropriate for a resident to age in place or for other reasons determine that the resident should leave the facility, under the Texas Residents’ Bill of Rights and Providers’ Bill of Rights for assisted living, Tex. Admin. Code § 92.125(a)(3)(X), a resident may not be transferred or discharged unless
(i) the transfer is for the resident’s welfare and the resident’s needs cannot be met by the facility; (ii) the resident’s health has improved significantly so services are no longer needed; (iii) the resident’s health and safety or health and safety of another resident would endangered if the transfer or discharge was not made; (iv) the provider ceases to operate or participate in the program that reimburses for the resident’s treatment or care; or (v) the resident fails, after reasonable and appropriate notice, to pay for services.
When following these procedures the facility must give the resident thirty days notice unless there is an emergency. Tex. Admin. Code § 91.125(a)(3)(Y). When providing a resident with notice, the facility must state that they intend to transfer the resident, their reason for transfer, the effective date of the transfer, the location where the resident will be transferred and any appeal rights which the resident has. Id.
Advocacy Tip:
When advocating for your client’s family member or for your client in a discharge situation, the resident rights in Texas give the advocate strong grounds for delaying or terminating the transfer process.
Emergencies are the one exception. An “emergency” occurs when a resident is in need of immediate medical attention or when the resident is endangering himself, other residents or staff.
All transfers, including emergency transfers, must be to appropriate facilities.
Advocacy Tip:
As an advocate, examine the discharge notice to insure that it meets all of the administrative requirements. Discuss with your client or their family if “aging in place” is appropriate. Finally, discuss with the client and family if assisted living truly is the appropriate place for residency and care. One of our more difficult jobs is to help clients and families understand when it is appropriate to move, when care needs exceed the facility.
B. Negotiated Risks
“Negotiated risks” occur after the client and the facility sit down and discuss the resident’s needs. It is when the client agrees to accept the risks of staying in the facility when their needs may or may not be able to be met by the facility. This agreement is signed by and both the facility and the resident. Zimmerman et al, Assisted Living (2001), 325-326 (Assisted Living). Clearly, the consumer is at a disadvantage. Often the consumer must make major concessions in order to remain in a facility which has become home.
Practically, many of these meetings take place in a crisis environment where the facility is fearful of liability, the client is unable to understand exactly what is at risk, and the family is desperate. It is important to discuss and review other options with the client and family and determine whether this is, indeed, the best possible outcome for the client. The assisted living facility’s inability to care properly for the resident may mean a quicker death or an eventualy sicker client if the client does not move to a higher level of care.
Advocacy Tip:
If a client is asked to participate in a negotiated risk process, attend the meeting and review the contract prior to the client’s or their family’s spokesperson signing the contract. These situations favor the facility and generally are an attempt to exonerate the facility from liability.
VI. FINANCIAL ISSUES AND ASSISTED LIVING
A. The Business of Assisted Living
The assisted living industry is big business. Sunrise Assisted Living, which has 175 facilities in twenty-five states, including several here in Texas, on their website announced an eleven percent profit in 2002. A national survey found that assisted living facilities had an average of a sixteen percent profit for their beds. Assisted Living at 288. According to the National Center for Assisted Living, there are 32,886 licensed assisted living facilities in the United States with over 795,391 beds. Facts About Assisted Living at 2. Compounding the assisted living growth phenomenon is the aging of the population. It is estimated by 2020, thirteen million older people will be in need of assistance with their activities of daily living. Traditionally, 25% of those over 65 are expected to live in a nursing home at some point in their lives. This proportion increases to 50% for those over the age of 85. Boyce, Financing Senior Living Facilities. The driving force behind this industry is the need for alternatives to nursing home facilities. In the ‘70’s and ‘80’s the trend was to quickly release people from the hospital into nursing homes because they cost less than hospitalization. This meant that those going into the nursing home were much sicker than previous residents. The assisted living facilities seem to have replaced that niche for custodial care that was once filled by nursing homes.
A second driving factor is that most people do not want to live in a nursing home. Finally, assisted living facilities cost less. The Department of Human Services in Texas estimates that the average cost of nursing home care is $2,908. The national cost of assisted living averages $1,873. The median price was $1,800. Facts About Assisted Living at 4.
Most assisted living costs (76.9%) are met by some private pay dollars, 66.7% are paid by the older person, 8.4% are paid by family, 1.8% are paid by long-term care insurance and only 9.1% are paid by Medicaid. Id. at 2.
B. Public Funds for Assisted Living
In Texas, the Department of Human Services in the past had contracts with assisted living facilities to provide community based assistance. These were viewed as less restrictive alternatives to nursing homes. However, these spaces were extremely limited.
In 1999, the United States Supreme Court in Olmstead v. L.C. 199 s. Ct. 1331, held that states must provide services in the most integrated setting appropriate to the needs of qualified individuals with disabilities. “States are required to place persons with mental disabilities in community settings rather than in institutions when the state’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to less restrictive setting is not opposed by the affected individual and the placement can be reasonably accomplished, taking into account the resources available to the state and needs of others with mental disabilities.” Olmstead v. L.C., 119 S. Ct. 1331. The Court directed states to make reasonable modifications for the use of public dollars when funding placement for people with disabilities.
Unfortunately, this decision arrived at a time when state budgets were shrinking making the implementation nationally inconsistent according to the National Conference of State Legislatures report. The National Conference of State Legislatures Report, A Work In Progress: The States’ Response to the Olmstead Decision, December 28, 2003, www.ncsl.org/program/health/forum/olmsreport.htm. The National Conference of State Legislatures found that 42 states and the District of Columbia had task forces for implementation of Olmstead by 2002.
Texas’ response was to initially enact Rider 37 and most recently Rider 38 which will remain in effect through August, 2005. Promising Practices in Home and Community Based Services, update by MedStat, 10/17/2003, www.dhs.state.tx.us.
Rider 37 states “an individual who resides in a Texas nursing facility and is enrolled in Medicaid will be approved for community care services if the individual requests services while residing in a Texas nursing facility and meets all eligibility requirements for community care services.” Under Rider 37, an individual must first enter a nursing home, qualify for Medicaid and then the benefits attach to the person rather than the bed in the facility. This is a major departure from services that attach to a specific certified bed.
There are several down sides to Texas’s implementation. First, a potentially eligible client must be in a Medicaid certified bed in a nursing home. Then, the client must stay in the nursing home until financial eligibility has been determined. Once financial eligibility is determined, the state assessment case worker will evaluate whether or not the person is eligible for home or community-based services. Finally, the client, if approved, may take his or her Medicaid dollars and purchase alternative care in the community. The financial package attaches to the client who may then move to their home or into an assisted living facility. When this program was initiated there was a great hope that many people would be able to live in less restrictive environments like assisted living or small personal care homes by paying for the care with their Medicaid funds. The reality of the program is that in 2001 only 1,900 participants transitioned from nursing home facilities into the community using their nursing facility funding. Promising Practices in Home and Community Based Services, update by MedStat, 10/17/2003, 222.dhs.state.tx.us.
Three factors seem to limit the use of these funds. First, clients must qualify for funds by first being in a Medicaid nursing home bed. Second, Texas has a low reimbursement rate for potentially eligible people. Nursing home residents are evaluated on their level of care by a system called TILE. The TILE assessment determines the nursing home’s reimbursement rate from Medicaid for the client. Those who are most likely to be eligible for reentry to the community or assisted living are those with lower care needs and thus lower reimbursement rates. These TILE reimbursement rates range from 67.78 per day to 146.92 per day. Those most likely to be eligible for a Rider 37 waiver are most likely in the bottom three TILEs which reimburse at 67.28 to 29.78 per day or $2,018 to $2,093 per day. This rate is at the average cost of assisted living. Assisted living homes are generally not willing to accept this reimbursement when significantly higher levels of staffing and paperwork are required.
Finally, when a Medicaid eligible person moves to an assisted living facility through Rider 37, the facility must agree to the provisions, terms and reimbursement of Medicaid. The low reimbursement rate and the terms of agreement have significantly narrowed the number of facilities and homes that will accept Medicaid reimbursement. While it is possible in Texas, it is usually not feasible to use Riders 37/38 to finance assisted living care.
B. Assisted Living Contracts
When a client moves into an assisted living facility, they are generally required to sign a contract. This is one of the major consumer pitfalls. “In a 1995 examination of thirteen assisted living contracts, the ABA Commission on Legal Problems of the Elderly found vague language and stark omissions on issues as important as the type, frequency and cost of services offered by the facility, resident rights and discharge policies and procedures.” White Paper at 2. The lack of specificity in contracts was reinforced by AARP when they found “significant discrepancy between marketing materials and contracts are common; the marketing materials frequently provide more information than contracts; and that many contracts contain a caveat that the contract supersedes any other verbal or written representations made to the consumer.” Both the ABA and AARP studies raise the concern that consumers were marketed one thing and purchased another.
In Texas, the consumer must be given the disclosure statement upon admission. Id. The disclosure statement is a state form which outlines what specific services are offered and the costs.
There are several methods of pricing. Some facilities charge a flat fee to all consumers for all services. A second and more frequently used method is to offer what is called “menu pricing”. A “menu price” charges a basic rate for minimal services with additional fees for certain services, such as medication monitoring, assistance with bathing and dressing, additional meals above the set package, housekeeping, or activities. Further, there may be significant charges for such things as meal and dietary supplements and incontinency care. While these must be disclosed in the Disclosure Statement, many consumers at the time of contract are overwhelmed and in a state of crisis. It is highly unlikely that most consumers examine the Disclosure Statement and fully understand the specific information given to them.
Advocacy Tip:
If given the opportunity, as counselor for the assisting living resident, we as attorneys need to examine the contract and the Disclosure Statement to insure that the two match. It is important to be realistic with the clients about what services they need and insure that they are fully aware of the costs for obtaining these services.
VII. CONCLUSION: MOVING OUT OR STAYING
As conceived, the assisted living facility was to be a transitional facility between home and the nursing home. Most consumers and owners of the facilities, however, envision the resident moving in and being able to stay for the resident’s remaining years. The reality of aging is that one’s needs generally increase. The assisted living industry has resisted on-going attempts for regulation. Assisted Living at 275.
Clients purchasing assisted living must be educated as to the limitations of assisted living services. Once a client understands the services and limits of assisted living, an informed and solid decision can be made about appropriate housing arrangements.
The protections for residents with aging issues are minimal. Texas has initiated a strong list of resident’s rights (discussed above) which provide specific details on both the consumer and the industry’s side for services. However, one of the significant concerns about assisted living is the resident who continues in assisted living after their needs have changed. The individuals needs may exceed the assisted living facility’s capacity to care for the individual.
The assisted living concept is extremely fluid in terms of the population served and the services offered. This makes it very difficult for consumers to evaluate what they are purchasing, compared to what they are seeking. As advocates for the elderly, we have the opportunity to educate our clients about the resources available, how to evaluate services, what questions to ask when visiting a facility, how to finance care, to evaluate contracts and manage the discharge processes. The rapidly growing senior population and the loosely defined services create an area ripe for legal issues.
Resources
www.ncal.org, National Center for Assisted Living
www.alfa.org, Assisted Living Federation of America
www.dhs.state.tx.us/programs/texascares/assisted_living.html
