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What Is Aging in Place and When Is It a Viable Option in CCRCs and ALFs? Bonnie Helfgott Krisztal Extendicare Health Services, Inc.

"Aging is universally experienced without regard to race, class, income, education, religion or gender yet for the most part it is experienced in isolation." 1

I. Introduction: Aging In Place

A. Definition of Aging in Place 1. No consistent, uniform definition. a) The Dictionary of Gerontology defines aging in place as "the effect of time on a non-mobile population; remaining in the same residence where one has spent his or her earlier years" see, Harris, Diana K. Dictionary of Gerontology. Westport, CT: Greenwood Press (1988). b) Multidimensional definitions view aging in place in such a way as to recognize the changing person and environment and further includes psychological changes, natural and physical environmental changes, and alterations made by individuals. See, Frank, Jacquelyn Beth. The Paradox of Aging in Place in Assisted Living. Westport, CT.: Bergin & Garvey (2002).

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c) Traditionally the definition of aging in place contemplated aging in one's home with modifications. Aging in place under the traditional definition included notions of the definition of home

Lawler, Kathryn. 2001, "Aging in Place: Coordinating Housing and Health Care Provisions for America's Growing Elderly Population" a Joint Project between the Joint Center for Housing Studies of Harvard University and the Neighborhood Reinvestment Corporation. p. 2.

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(property, place, possessions, and consistency). The newer approach is to expand the definition of "home" to include assisted living facilities.

d) Some states in their regulatory and statutory provisions define "aging in place" in terms of ALFs. New York defines it to mean "care and services at a facility which possesses an enhanced assisted living certification which, to the extent practicable, within the scope of services set forth in the written residency agreement accommodates a resident's changing needs and preferences in order to allow such resident to remain in the residence as long as the residence is able and authorized to accommodate the resident's changing needs." see, New York Public Health Law § 4651 (13).

e) Aging in place can also be defined in terms of either "dying in place" or a prolonged residency. This has led some organizations to reject the use of the wording "aging in place" as they view it as a misnomer and misleading to potential residents and family. See, Frank. Pp.162-63.

2. No consistent philosophy, approach, or definition of assisted living exists. a) The definition of assisted living becomes important because often what determines who gets to "age in place" depends upon the philosophy of the ALF. See, Ball, Mary et. al. Managing Decline in Assisted Living: The Key to Aging in Place. Journal of Gerontology Series B: Psychological Sciences and Social Science 59:S202-S212 (2004). b) Many definitions of AL include a philosophy which encompasses autonomy, choice, independence, dignity, homelike setting, and "aging in place". However, some of those who use the nomenclature "aging in place" mean dying in place and other mean a prolonged residency. c) A States statutory and regulatory philosophy and definition of assisted living can incorporate into the definition "aging in place". d) Assisted Living can mean a model from independent living all the way on the continuum to assisted living only, with various

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models in between, such as continuing care retirement communities.

e) Often the definition of assisted living adopted by either the State, the facility or other residents dictates the admission and retention policies of a facility.

B. Why discuss the issue of Aging in Place-What does it

matter?

1. There are serious social implications for ignoring the issue of Aging in Place. a) Programs that allow aging in place minimize inappropriate care such that neither over -care nor under -care occurs. See, Lawler at 1. b) Programs that allow aging in place decrease overall costs of care globally, because both over-care and under-care can result in increased costs. Under-care can lead to costly catastrophic illness and events and over-care can lead to learned helplessness and depression. Id. c) Relocation of elderly individuals can cause stress, isolation, grieving and an overall decline in physical and psychological function. See, Chapman, Rosemary and Debra Dobbs-Kepper. Aging in Place in Assisted Living: Philosophy versus Policy. The Gerontologist 41(1):43-50 (2001). d) Transfers to new setting can result in depression and have been linked to increased risk for cognitive decline. Id. 2. There are legal risks in both ignoring the potential for aging in place and in allowing aging in place.

a) Potential legal risk exists due to inappropriate discharges and application of idiosyncratic retention policies. (1) Admission and retention policies that limit retention due to wheelchair use, the need for assistance with ambulation, levels of cognitive impairment, behavioral

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symptoms and the need for extensive nursing care can run afoul of antidiscrimination laws pursuant to State and Federal Fair Housing Laws, Americans with Disabilities Act and the Rehabilitation Act provisions. b) Retaining someone who might be more appropriate for a nursing facility can result in legal risk. (1) A risk of licensure action exists for maintaining a resident beyond level of care parameters applicable to a facility. (2) The legal liability of maintaining someone beyond the facility's capabilities creates a potential civil liability issue. c) Discharging or evicting someone who desires to remain in place after a decline implicates potential contractual liability.

C. What determines whether someone gets to "age in place" in an

ALF?

a) The philosophy and approach of the state regulations usually is a factor in setting parameters as to retention. (1) Licensing level of care restrictions often act as a barrier to an "aging in place" program. (See below at Section II. B). b) The philosophy and approach of the individual facility's vision for themselves, relative to the types of services, client mix, and scope of services they envision providing dictates how and if the facility is amenable to aging in place. c) The financial resources available either through state programs or from of the resident's private resources also influences whether a person is retained after a decline. d) Some studies have suggested that an additional factor that influences retention is a fit between the "capacity of both the resident and facility to manage decline." See. Id. (1) Capacity to manage decline is influences by the vision of the facility, the amount of risk both resident and facility are willing to bear, the capacity to provide the needed 4

services, and the ability of residents to accept declining coresidents in their midst. D. Obstacles to Aging in Place. 1. Several obstacles may exist to instituting an aging in place program in a facility or to having a program already implemented result in successful aging in place. a) Staff, administration and family concerns about a resident getting injured prohibit some facilities from engaging in successful aging in place programs. b) A paternalistic approach to care, whereby the caretakers in an ALF feel a sense of moral obligation to protect those they are caring for can sabotage an aging in place program. c) Concern by administration and caregivers for potential legal responsibility for all negative outcomes that might result from allowing residents to age in place may stand as a strong deterrent to implementation of a program. d) The actual milieu in the facility can also stand as an obstacle. When first opened a facility may have marketed to more active seniors and as they age (some more rapidly than others) residents may be less accepting of resident's with increased care needs or visible signs of decline.

II. Legal Risk Encountered When Either Implementing an Aging in Place Program or Implementing Restrictive Retention Policies.

A. Fair Housing Laws/ Antidiscrimination Laws. 1. While Federal and State laws are often silent regarding the applicability of Fair Housing Laws to assisted living environments, it is clear that under the Fair Housing Act and the Amendments to the Act, the Americans with Disabilities Act, and the Rehabilitation Act (applicable to facilities receiving federal funding) that these laws do apply to assisted living facilities. See, Fair Housing Amendments Act of 1988 ("FHAA"). 42 USC §§ 3601 et. seq.; 24 CFR §§ 100.1 et. seq.; Americans with 5

Disabilities Act ("ADA"), 42 USC §§ 12101 et. seq.; 28 CFR §§ 36.301 et. seq.; Section 504 of the Rehabilitation Act of 1973, 29 USC § 794. 2. State Fair Housing type statutes exist in 46 states and require reasonable accommodations. 3. The antidiscrimination laws should serve to foster aging in place. Additionally, it could be argued that acting consistently with the laws by making reasonable accommodations should absolve the facilities' liability for negative outcomes. However, the analysis and conclusion is not that simple. 4. Many times the state licensing regulations conflict with the antidiscrimination laws. a) A Federal district court case involving Alabama state regulations is illustrative of this issue. In O'Neal v. Alabama Dept. of Public Health, 826 F. Supp. 1368 (M.D. Ala. 1993) at issue was an Alabama code regulation that prohibited an individual from living in assisted living if they needed hospital or extensive nursing care; were not aware of medications; and/or, had severe senility. The Court in deciding the case recognized that the ADA and FHAA had the goals of ending isolations and segregation for individuals with disabilities. Also recognized was the State's interest in promoting licensing goals to promote health, safety and welfare by establishing stands for treatment and care in assisted living facilities. The judge stated that in some instances the two goals conflict with each other. b) In Herriot v. Channing House, C.A. No. 06-06323 (U.S. District Court, N.D. Cal.), after a decline in health a CCRC provided a notice to the resident that she would have to move into their assisted living area. She desired to remain in her unit with the attendance of full time aids. The defendant, Channing House, successfully prevailed using the argument that the State of California licensing parameters required the CCRC to compel the move. At extensive issue in the case was the interplay between the licensing regulations and the Federal antidiscrimination laws. While the defendant prevailed at the district court level, the case is currently on appeal. Interestingly enough four years after the original filing, the (90 year old +) plaintiff remains in her unit under a stay order and injunction pending the outcome of the appeal.

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c) In Winter v. Chugiak Senior Citizen, Inc., 531 F. Supp.2d 1075 (U.S. District Court, D. Alaska, 2007) the plaintiff challenged an eviction from an assisted living program alleging Americans with Disabilities Act, Rehabilitation Act and Fair Housing Act violations. The eviction was being undertaken due to behavioral and psychological issues evidenced by the plaintiff. The courts conclusion was that the assisted living facility did not engage in discriminatory practices based on a disability. The courts holding seems to agree with the defendant facility that the basis for the eviction was physical, verbal and mental abuse or aggression that was an infraction of the facility's policy; and thus, resulted in eviction. Extensively cited in the court's decision are the contractual provisions in the Residential Services Contract, Lease Agreement and the facility's policies. Further cited was Alaska's Assisted Living Homes Act which the court recognizes as limiting the type and degree of care the provider is authorized to provide. Thus, in this decision both the assisted living regulatory provisions and the limits imposed by contractual relationship were crucial to the finding.

B. Licensing Regulations. 1. States take various approaches to assisting living regulations. Fortythree states regulate "assisted living. (For a list of such state and a comprehensive, concise resource for state regulations see: Assisted Living State Regulatory Review 2009, National Center for Assisted Living. (www.ahcancal.org/ncal/resources/Documents/2009_regs_review.pdf ) Each state that has assisted living regulations generally set parameters for a facility to follow. The parameters usually are based on the regulators view of assisted living and the particular model or philosophy that is adopted by the regulators and legislators in the State. Levels of independence, privacy, autonomy, decision making, and service levels permissible are set out for the facility to adhere. See, Residential Care and Assisted Living Compendium: 2007. November 30, 2007. http://aspe.hhs.gov/daltcp/reports/2007/07alcom1.htm 2. State licensing and regulatory approaches or philosophy fall within six general categories. Id. a) Institutional Model. Generally in this model the regulations provide for minimum building and unit requirements. Facilities are not allowed to admit residents who need nursing care and the

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facilities are prohibited from directly providing any nursing care. Id. b) Housing and Service Models. Generally this involves an apartment like setting where the provider is permitted to serve residents with a high level of acuity and care needs. This model results in a blur between nursing home residents and the ALF residents. (Vermont). Id. c) Service Model. The service provider is licensed to render care. This model's main focus is the care provided and not the setting or physical structure of where it is provided. (Connecticut, Maine, Minnesota, and New Jersey) Id. d) Umbrella Model. This regulatory model combines regulation of various providers and housing along a continuum of care levels. (i.e. residential care facilities, CCRC, elderly housing, family care, boarding care and assisted living. (Maine, Maryland, and North Carolina). Id. e) Multiple Levels of Licensing for a Single Category. This regulatory scheme licenses facilities based on the type of resident serviced by facilities. Thus, a facility may be assisted living and limited to a certain number of care hours per week, but may also have a limited and definite number of residents who need nursing care. (Wisconsin). Id. f) Hybrid Model. This regulatory scheme combines the concepts of two or more of the above models. (North Carolina). Id. 3. Each model has various implications for the potential to age in place due to a wide array of admission and retention criteria in existence. For example, some models might restrict care to ADLs but have an exception whereby a resident requiring hospice services may remain in place. Some of those states might allow the hospice while others might make it mandatory to retain such a resident in the ALF. Limitation on the amount, type and frequency of specified nursing care services are also commonly regulated by states. a) North Carolina and Illinois do not permit residents who meet the state's level of care criteria for nursing homes to reside in an ALF. Id. b) Florida provides two types of licensure (LNS and ECC) that permit both types of facilities to provide specified and a high level

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of skilled nursing services. However, there are also prohibited nursing services outlined. 4. Admission and retention criteria fall within three types of categories. a) Full Continuum. This type of criteria allows for a large array of needs to be met. The states that fall in this category include Hawaii, Kansas, Maine, Minnesota, Nebraska, New Jersey and Oregon. Thus, this category has the potential to be most flexible with allowing aging in place. Id. Within this category, some states, though they permit a high level of services to be provided, do not mandate that the provider has to do so. Oregon Hawaii, Maine, and New Jersey are states that are good examples of a discretionary policy. Id. Thus, the facilities in these states may pick and choose what acuity level they wish to serve. States where the provider has a wide discretion as to what services it provides to residents may also result in limits to a resident's ability to age in place. Id. b) Discharge Triggers. States that have discharge triggers generally set parameter as to the types of services that are and are not permissible. Most often seen in these types of state regulations are the prohibition of providing skilled nursing services either completely or limited to a specified number of hours that can't be exceeded. Discharge triggers are present in California, Delaware, Florida, Idaho, Illinois, Maryland, Mississippi, Nevada New Mexico, South Carolina, Tennessee, Virginia, and West Virginia. Id. (1) The type of triggers may be the number of hours of needed skilled nursing care, certain types of nursing services, the existence of decubitus ulcers or ventilator dependence. Also seen is the inability to ambulate. (2) For example, Tennessee restricts retention of resident who among other things need sterile wound care, gastronomy feeding, and intravenous medications. Though even in these cases sometimes the Tennessee regulations permit a resident to remain for up to 21 days. Id. c) Levels of Licensure. These parameters base the type of licensure on the type of and extent of services that may be provided. For example, in Wisconsin if the facility is licensed as a Residential Care Apartment Complex up to 28 hours of supportive and personal care is permitted to be provided by the facility. If the facility is licensed as a Community Based Residential Facility then 9

the residents must meet certain criteria to be admitted and retained in the facility. Other examples of States with similar restrictions are Arizona, Arkansas, Florida, Maine, Maryland, Mississippi, Missouri, Utah and Vermont. Id. (1) Some states require additional licensure to serve residents who have Alzheimer's disease or other types of dementias. Examples include Rhode Island, Pennsylvania, Montana, and Washington. Id. 5. In the court cases in which might be called "aging in place" cases, it is clear that the defendants (usually a facility) take action to not retain a declining resident/client on the basis of their licensing requirements. Many facilities that don't engage in "aging in place" programs do so based upon the distinct and very valid fear of revocation of licensure. 6. The district courts findings in the Herriot v Channing case (see above) fosters the notion that when a valid licensure parameter sets forth a need to not retain a declining resident, this licensure requirement may protect the facility from antidiscrimination allegations and charges. a) It is important to note, however, that the Herriot case is specific to the regulatory scheme in California and to the issue of remaining in place when the need to do so can potentially be served by having full time aids. Also, the fact that California had a system for requesting waivers or exception to the regulation parameters but did not mandate such an application to be filed for the waiver was also a factor in the Herriot case. b) In states such as Ohio and Michigan, where the state has level of service parameters, but other regulations allow for the use of a negotiated risk agreement to serve as an exception to the level of service parameters it remains unclear as to whether the outcome of the Herriot case would have been applicable. See, Ohio Rev. Code Ann. § 3721; Mich. Admin. Code Rules 325.1901 et. seq. C. Negotiated Risk Agreements 1. CMS provides a definition of assisted living that includes the right to assume risks, tempered only by the ability to assume that risk. Negotiated Risk Agreements are seen as good mechanisms for the balance of autonomy and risk for both the provider and resident; and, thus may remove one of the barriers that might exist to aging in place. See, A Study of Negotiated Risk Agreements in Assisted Living: Final Report (U.S. Dept. of Health and Human Services, Assistant Secretary for Planning and 10

Evaluation, February 2006). Included in this report under Appendix F is a good sample of a Negotiated Risk Agreement. (http://aspe.hhs.gov/daltcp/reports/2006/negrisk.pdf) 2. States approach Negotiated Risk Agreements in various ways. a) Forty-one states regulate assisted living facilities; of these, 14 states (and the District of Columbia) have regulations relative to Negotiated Risk Agreements. Id. Alaska, Florida, Hawaii, and Iowa contemplate a non-written agreement, while the rest clearly contemplate a written agreement. Id. (Alaska Stat. § 47.33; 230; Fla. Stat. §429.02 et seq., Haw. Code R. § 11-90; Iowa Admin. Code r. 321-25.1 et. seq.). b) None of the rest of the states prohibits the use of Negotiated Risk Agreements. Id. c) Three states, Arkansas, Oklahoma, and Vermont require Negotiated Risk Agreements for high risk individuals or for circumstance evidencing that the resident is making risky decisions. Id.. Wisconsin requires that for residents residing in a Residential Care Apartment Complex (a particular type of licensed ALF in WI) a negotiate risk agreement must be in place. (Ark. Code Ann. § 20-10-1704 et. seq.; Okla. Admin. Code § 310.663; Vt. Stat. Ann. Tit. 33, 7102 et. seq., Wis. Stat. Ann. § 50.01 et. seq., Wis. Admin. Code HFS § 89.13).

3. There are various pros and cons put forth for the use of Negotiated Risk Agreements. There are strong opinions put forth by both those who advocate for the use of Negotiated Risk Agreements and those who advocate for the abolishment of their use.

a) The Assisted Living Federation of America and AARP both support the use of Negotiated Risk Agreements. In 2003 the Assisted Living Workgroup, which consists of 27 organizations failed to adopt a proposed "shared responsibility agreement" definition, however, the vote revealed that 15 of the 27 organizations supported the use of Negotiated Risk Agreements. Id. b) The National Senior Citizens Law Center has opposed the use of Negotiated Risk Agreements as being unfair and one-sided.

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Additionally, some have questioned whether a Negotiated Risk Agreement actually resolve disputes or is actually consent for inadequate care. Carlson, Eric M. Protecting Rights or Waiving Them? Why `Negotiated Risk' Should be Removed from Assisted Living Law. Bepress Legal, Berkeley Electronic Press. (2006) (http://law.bepress.com/expresso/eps/1585) 4. Advocates for the use of Negotiated Risk Agreements see them as valuable tools that build consensus, aid in the development of creative alternatives, aid communication, reduce risk and set reasonable expectations, support autonomy and choice, empower choices made, assign responsibility, limit provider liability. Additionally, put forth is that they provide a realistic assessment of potential harm outcomes which aid the resident in making meaningful decisions. See, Residential Care and Assisted Living Compendium: 2007. November 2007. (http://aspe.hhs.gov/daltcp/reports/2007/07alcom1.htm.) 5. Opponents put forth that Negotiated Risk Agreements attempt to waive liability for matters within a facility's scope of responsibility and needlessly put residents' at risk. Further feared by opponents is that facilities will use such Agreements to get around regulatory discharge requirements. See, Carlson. a) Arkansas and Delaware specifically prohibit this practice. Michigan, Mississippi and Ohio specifically permit the use of Negotiated Risk Agreements to sidestep discharge requirements. (Mich. Comp. Laws § 333. 21325; Tex. Health & Safety Code Ann. §247.066; Miss. Code Ann. § 43-11-13. See, A Study of Negotiated Risk Agreements in Assisted Living: Final Report above. 6. Theoretically Negotiated Risk Agreements might be useful to address ADA and FHAA violations by providing a tool to implement reasonable accommodation settlements.

III.

Guidelines for Minimizing Legal Risk.

1. While no one process will totally insulate a provider from risk of either implementing an aggressive aging in place program or implementing an aggressive discharge program (one that does not permit aging in place) several policies and procedures will aid to decrease risk to a provider.

a) Develop a mission statement and a vision of the milieu for the facility should be in place.

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(1) Does the facility want to foster Aging in Place?

(2) What is the facility's definition of Aging in Place?--Dying in place or Prolonged residency? (3) How is aging in place to be implemented? Through internal or external resources?

b) Providers should know the State's licensure requirements and other regulatory provisions.

(1) Everyone in the facility should have awareness of what types of services they are permitted to provide. (2) Areas of discretionary services should be acknowledged and definitive policies and procedures should be in place. Additionally, what serves the provider is willing and capable of providing should be clearly communicated to both resident and staff.

c) Be realistic when setting up policies and procedures.

(1) Before a provider puts a restriction in place that may result in a discharge of a resident assess what the alternatives might be and whether the restriction is a legitimate business need for your program and/or the health and safety of the residents. (2) Tailor policies that restrict certain activities or need for mobility aids carefully and narrowly. (a) Wheelchair restrictions (b) Motorized scooter restrictions (c) Behavioral Triggers (d) Cognitive Triggers

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d) Expectations regarding admission and discharge criteria need to be clearly and consistently communicated.

(1) Assure that the contractual agreement (residency agreement) for residency clearly spells out the discharge and retention policies of the provider. (2) Insert in the residency agreement a statement of nonwaiver. So that in the event there is a failure to follow through with retention or discharge policy in a timely manner such delay will not work as a waiver of that provision. (3) Assure that the materials handed out to the resident and to prospective residents state consistently the provider's discharge and retention policies (4) Scrutinize marketing materials carefully for any inconsistencies either real or implied. e) Use Negotiated Risk Agreements. (1) Carefully craft these agreements to be inclusive of all risky decisions and desires. (2) Do not attempt to waive liability for things that are the responsibility of the provider that are as a result of contractual or regulatory provisions. (3) Make sure that the resident/ family understands what the Negotiated Risk Agreement states and provides prior to signing. (4) Assess the resident's mental capacity before having the resident sign the agreement.

f) Discharge and retention policies need to be consistently implemented.

(1) Who gets to stay needs to be independent of race, financial status (if reason for discharge is other than failure to pay), medical condition and likeability of the resident?

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(2) Documentation should be carefully made and maintained to serve as evidence of consist application of policies.

IV.

Conclusion.

A. States that regulate assisted living often perceive themselves as fostering aging in place while the reality of the regulatory climate might have the opposite effect. B. It is clear that residents' expectations for entering assisted living generally include aging in place and includes all that the residents themselves interpret the concept to mean. C. Working diligently to address expectations and working to communicate a realistic vision of "aging in place" is crucial. D. As the demand for and utilization of assisted living increases more complex issues regarding aging in place can be expected. It is likely that more assisted living cases regarding antidiscrimination laws will develop and will begin to more clearly shape the parameters of and definition of aging in place as it applies to assisted living facilities.

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