national senior citizens law ctr. copyright 2006 1 critical issues in assisted living who’s in,...

National Senior Citizens Law Ctr. Copyright 2006

1

Critical Issues in Assisted Living

Who’s In, Who’s Out, and

Who’s Providing the Care?


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The Assisted Living Model


3

A New Paradigm?

Original literature on assisted living envisioned individualized care provided in an individual’s home.– The home possibly, but not necessarily, would be

part of a larger facility.


4

Assisted Living as “Home”

“[I]s [the residents’] unit a home in the real sense or only in the artificial sense of the rhetoric that asks nursing home residents to regard the facility as home?”– Kane and Wilson, AARP, Assisted Living in the

United States: A New Paradigm for Residential Care for Frail Older Persons?, at 10 (1993).


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Assisted Living as “Home” Could Be Good or Bad

Good– Resident’s control over daily life– Individualization of care

Bad– Facility disclaiming responsibility for resident’s

care or well-being– “You’re on your own.”


6

An At-Home Model of Assisted Living Might Be Virtually Unregulated

At-home model is consistent with disability community’s preferences.

But aren’t higher standards appropriate when a facility puts itself forward as an “assisted living” provider?


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Absence of Regulation = “Flexibility”

How Important Is “Flexibility” in the Assisted Living Model?

The important question is: Does the flexibility (or, in other words, the control) reside with the resident or with the facility?


8

Defining Assisted Living


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What Is Assisted Living???????

Two problems:Law varies from state to state.Definitions tend to be written in

general language.


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e.g., Assisted Living Quality Coalition (1998)

“a congregate residential setting that provides or coordinates personal services, 24-hour supervision and assistance (scheduled and unscheduled), activities, and health-related services; . . .

“designed to accommodate individual residents’ changing needs and preferences;

“designed to maximize residents’ dignity, autonomy, privacy, independence, and safety . . .”


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Assisted Living Workgroup (2003)

“Assisted living provides or coordinates oversight and services to meet the residents’ individualized scheduled needs . . . and their unscheduled needs as they arise.”

Services must include, but are not limited to– “24-hour awake staff to provide oversight and meet scheduled and

unscheduled needs;– “Provision and oversight of personal and supportive services

(assistance with activities of daily living and instrumental activities of daily living);

– “Health[-]related services (e.g. medication management services).” “Assisted living does not generally provide ongoing 24-hour

skilled nursing.”


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Why the Vagueness?

No facility wants to be left out of the “assisted living” category.– Higher standards are financially impossible, say

smaller facilities and others.– “Big tent” philosophy of regulation allows for

shared rooms, thin staffing, no health professionals, etc.


13

Some State Laws Are Ambitious

Vermont: “[a]ssisted living promotes resident self-direction and active participation in decision-making while emphasizing individuality, privacy and dignity.”

Illinois: “a social model that promotes [residents’] dignity, individuality, privacy, independence, autonomy, and decision-making ability and the right to negotiated risk.”


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Most State Laws Are Vague

Georgia: “any dwelling, whether operated for profit or not, which undertakes through its ownership or management to provide or arrange for the provision of housing, food service, and one or more personal services.”

South Dakota: “any institution, rest home, boarding home, place, building, or agency which is maintained and operated to provide personal care and services which meet some need beyond basic provision of food, shelter, and laundry in a free- standing, physically separate facility which is not otherwise required to be licensed.”


15

Does Reality Match Rhetoric?

National Survey:– 59% of surveyed facilities found to have both low

privacy and a low level of services

Catherine Hawes et al., A National Study of Assisted Living for the Frail Elderly: Results of a National Survey of Facilities, in Executive Summary (Dec. 1999)


16

Can Contracts Provide the Answers?

Illinois says “yes”:– “Assisted living, which promotes resident choice, autonomy,

and decision-making, should be based on a contract model designed to result in a negotiated agreement . . . . This model assumes that residents are able to direct services provided for them and will designate a representative to direct these services if they themselves are unable to do so. This model supports the principle that there is an acceptable balance between consumer protection and resident willingness to accept risk and that most consumers are competent to make their own judgments about the services they are obtaining.”


17

Disclosure RequirementsAre Common

Texas, Washington, & others have state-developed forms.

Most commonly, format of disclosure is within facility’s discretion.

Alzheimer’s Ass’n has emphasized disclosure of facilities’ dementia care.


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Levels of Care

16 states recognize more than one level. Two or three levels Higher levels reflect greater health care

capabilities


19

The Case in Favor ofMulti-Level Systems

Different types of facilities require different types of standards.

When licensing standards are drawn in a one-size-fits-all model, standards tend to drop to the lower common denominator.

A facility can retain residents by licensing at the highest level.


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The Case Against Multi-Level Systems

By pigeonholing residents into specific regulatory boxes, multi-level systems force residents to move multiple times.

Flexible licensing standards allow assisted living facilities to adjust services as necessary.


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In Reality, All Systems Are Multi-Level

Two options:– Levels Set By State– Levels Set By Individual Facility


22

Who’s In?


23

“Aging in Place,” or“Minimizing the Need to Move”

Non-Legal & Legal Arguments In Support NON-LEGAL: “Please don’t send me to a

nursing home” is a compelling argument. LEGAL: Americans with Disabilities Act

requires states to give fair treatment to non-institutional alternatives.

Q: Is assisted living a “non-institutional” option?


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Potential Negativesof “Aging in Place”

Facility may not be able to provide adequate care.

Assisted living may resemble discredited “intermediate care facilities” of 1980’s.


25

Disqualifying ConditionsUnder State Law

Disqualifying conditions are becoming less common, and/or less restrictive.


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Disqualification for Inability to Walk

Disqualification in 23 states.– Most exceptions are limited, or have multiple

exceptions.– Cases under ADA and FHA require such

exceptions.– But . . . facility fires have proven deadly.


27

Exceptions

May apply only to continuing residents, or to temporary conditions

Different rationales and procedures:– Necessary Care Provided by:

Resident Family

– State grants exceptions on case-by-case basis– Home health agency or hospice is involved– Private exceptions agreed upon by parties


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Some Exceptions Apply Only to Continuing Residents

Pro: Extra consideration should be given to individuals already living in the facility.

Con: If facility has capacity to provide necessary care, it should be able to provide that care to new residents as well as continuing residents.


29

Continuing-Resident Exception as Foot in Door for Across-the-Board Exception

e.g., Hospice care in California facilities– 1992: in facility for at least 6 months before

becoming terminally ill– 1999: in facility before becoming terminally ill– 2002: may be terminally-ill prior to admission


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Exception for Temporary Care Needs

Twenty-five states have such exceptions. “Temporary” ranges from 14 to 90 days. Great variance exists from state to state.


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Exception if Resident Can Performor Direct Care

Eight states have exception based on resident performing or directing care.

As health care in assisted living has become more routine, this exception increasingly has become unnecessary.


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Exception for Care Provided by Family

Four states have such exceptions. This exception raises question as whether

facility is service provider or landlord. Like the exception for services performed or

directed by a resident, this exception has been made less relevant by greater health care capabilities within assisted living.


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Exception Granted By State onCase-by-Case Basis

Seven states grant such exceptions.– Con: No oversight or consistency

Like other previously-discussed exceptions, this exception is becoming less necessary or common, due to increasing health care capabilities within assisted living.


34

Exception for Care Providedby Home Health Agency

Twenty-one states have such an exception.– This underestimates the prevalence of home

health services, which often are provided without an exception.

Exception may or may not be limited to specific procedures.

Q: Does facility have health care expertise itself?


35

Exception for Care Providedby Hospice Agency

Twenty-two states have an exception for terminally-ill residents receiving hospice services.

Two justifications:– Fairness to dying person– Extensive array of services provided

by hospice agency


36

“Private” Exceptions:State Is Not Involved

Fourteen states have private exceptions of one sort or another.

Private exceptions usually apply to retention but not admission.

Consent of physician may or may not be required.


37

Private Exceptions: Pros & Cons

Pro: State should not stand in the way of an arrangement that is acceptable to the parties involved.

Con: State standards are beneficial to all concerned. Routine use of private exceptions undermines the effectiveness of state quality-of-care standards.


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Facility Consent Required:Pros & Cons

Pro: Resident is at risk if facility can’t provide adequate care.

Con: Facility could provide adequate care, but has chosen to not make the effort. Facility might be trying to get rid of residents who are less appealing physically, or whose care is more time-consuming.


39

ADA Requires Facilitiesto Meet Care Needs

In 1980’s and 1990’s, gov’ts were defendants in cases alleging that persons with disabilities were excluded from facilities.

Now, gov’ts have ceded discretion to facilities, so facilities are potentially liable.


40

Potential Facility Defensesto ADA Claim

Medical decisions are not subject to ADA second-guessing.– But admission/discharge decisions are

administrative, not medical. Facilities should be able to choose a

specialization, and not be required to undergo a “fundamental alteration.”– But character of facility is set by license, rather

than by facility’s supposed specialization.


41

Negotiated Risk

Meaning of term is hopelessly confused.– Allowing resident to stay although facility cannot

meet resident’s needs?, or– Documenting resident’s decision to act against

facility advice (e.g., diabetic eating chocolate cake)?

See Eric Carlson, In the Sheep’s Clothing of Resident Rights: Behind the Rhetoric of “Negotiated Risk” in Assisted Living, available at www.nsclc.org.


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Who’s Out?


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Facilities Generally Have Discretion to Discharge Residents

Thirty-nine states allow discharge based on a facility’s inability to meet a resident’s needs.


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Discretion Commonly Leadsto Discharge

31% of facilities would not retain resident who uses a wheelchair (or “it depends”);

38% would not retain resident needing assistance with locomotion;

55% would not retain resident with moderate to severe cognitive impairment; and

76% would not retain residents with behavioral symptoms (e.g., wandering).

– Catherine Hawes et al., A National Study of Assisted Living for the Frail Elderly: Results of a National Survey of Facilities, at § 6.1 (Dec. 1999)


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Two Problems

Too-soon discharge Too-late discharge

Answer to either problem might be reduction in facility discretion, and better quality-of-care standards.


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Other Justifications for Discharge

Necessary care exceeds scope of facility license– Applicable in 33 states– Generally not relevant; subsumed in broader

justification of facility’s inability to meet resident’s needs


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Other Justifications (cont.)

Violation of admission agreement– Applicable in 10 states– Likely gives facility undue discretion, given that

admission agreement is drafted by facility– In N.J., facility chooses justifications from list

established by state law


48

Who’s Providing the Care?


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Mandatory Topics

37 states require that initial training include certain topics.


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List of Topics Tend to BeLong and General

e.g., Colorado Intial training:

– Orientation,– Training specific to the particular needs of the populations served,– Resident rights,– First aid and injury response,– Care and services for the current residents,– Facility’s medication administration program.

Within one month of hire:– Assessment skills,– Infection control,– Identifying and dealing with difficult situations and behaviors,– Resident rights, and– Health emergency response.


51

Some States Require Minimum Number of Hours for Initial Training

12 or fewer hours – 5 states 13 to 24 hours – 4 states 25 or more hours – 10 states


52

Facility Generally Has Great Discretion in Conducting Training

9 states require certain qualifications of person conducting training.

6 states have some control over curriculum content.

5 states require passage of competency examination.


53

Nurse Participation

26 states require that facilities employ or contract with nurses.– Generally nurse is not required to be present at

facility on a regular basis.


54

Nurse Delegation IsIncreasingly Common

21 states allow non-nurses to administer medication in assisted living.

6 states have authorizations beyond medication administration for care provided by non-nurses.


55

Medication Administration Presents Difficulties in Assisted Living

Two general approaches:– Allow non-nurses to “assist with self-

administration of medication,” and use broad definition of “assistance with self-administration”

– Nurse delegation (medication aides, med techs, etc.)


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Nurse Delegation: Pros & Cons

Pro: The use of nurses is cost-prohibitive for assisted living. If non-nurses are to administer medication, it should be done honestly, with reasonable standards.

Con: Non-nurses can’t do an adequate job. Why should nurse practice acts be relaxed only for assisted living residents?


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Analogizing Nurse-Delegation to Care Provided by Family Members

Q: If it’s OK for a daughter to administer medication at home, why shouldn’t a trained employee be able to administer medication in a facility?

A: What’s acceptable at home is not necessarily what should be acceptable at

a facility holding itself out as providing assisted living services.


58

Staffing Levels

43 states require that staffing levels be adequate.

18 states set minimum staffing ratios.– The approximate middle ground is a ratio of

1 to 15 during the day, and 1 to 25 at night.– Staffing levels may be less than they initially

appear, since direct-care staff often is involved in laundry, housekeeping, etc.


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Where Do We Go From Here?


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What Is Needed? (Part 1)

Honest discussion about pros and cons of various aspects of assisted living models– Get beyond sloppy arguments

E.g., “social” model v. “medical” model Or “You’re turning assisted living facilities into nursing

homes.”

Assisted living today should be an intelligent hybrid of social and medical models.


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Systems advocacy re:– State licensing standards– Federal standards for receipt of Medicaid waiver

money Greater consumer knowledge Healthy sense of entitlement among

consumers – e.g., “If I’m paying all this money, I should be getting the assistance that I need.”


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Providers should recognize benefits of appropriate standards.

Good providers suffer when bad providers are able to pass themselves off as “assisted living.”


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First Things First

Assisted living must be defined in an honest and understandable way.


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**** The End ****

Feel free to call at any time.

Eric Carlson

Los Angeles, CA

(213) 639-0930, ext. 313

[email protected]

national senior citizens law ctr. copyright 2006 1 critical issues in assisted living who’s in,...

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