Critical Issues in Assisted Living
Who’s In, Who’s Out, and
Who’s Providing the Care?
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National Senior Citizens Law Ctr.
Copyright 2006
The Assisted Living Model
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National Senior Citizens Law Ctr.
Copyright 2006
A New Paradigm?
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Original literature on assisted living
envisioned individualized care provided in an
individual’s home.
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The home possibly, but not necessarily, would be
part of a larger facility.
National Senior Citizens Law Ctr.
Copyright 2006
Assisted Living as “Home”
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“[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?”
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Kane and Wilson, AARP, Assisted Living in the
United States: A New Paradigm for Residential
Care for Frail Older Persons?, at 10 (1993).
National Senior Citizens Law Ctr.
Copyright 2006
Assisted Living as “Home” Could Be
Good or Bad
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Good
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Bad
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Resident’s control over daily life
Individualization of care
Facility disclaiming responsibility for resident’s
care or well-being
“You’re on your own.”
National Senior Citizens Law Ctr.
Copyright 2006
An At-Home Model of Assisted Living
Might Be Virtually Unregulated
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At-home model is consistent with
disability community’s preferences.
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But aren’t higher standards appropriate when
a facility puts itself forward as an “assisted
living” provider?
National Senior Citizens Law Ctr.
Copyright 2006
Absence of Regulation = “Flexibility”
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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?
National Senior Citizens Law Ctr.
Copyright 2006
Defining Assisted Living
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National Senior Citizens Law Ctr.
Copyright 2006
What Is Assisted Living???????
Two problems:
 Law varies from state to state.
 Definitions tend to be written in
general language.
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National Senior Citizens Law Ctr.
Copyright 2006
e.g., Assisted Living Quality Coalition
(1998)
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“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 . . .”
National Senior Citizens Law Ctr.
Copyright 2006
Assisted Living Workgroup (2003)
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“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
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“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.”
National Senior Citizens Law Ctr.
Copyright 2006
Why the Vagueness?
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No facility wants to be left out of the
“assisted living” category.
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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.
National Senior Citizens Law Ctr.
Copyright 2006
Some State Laws Are Ambitious
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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 decisionmaking ability and the right to negotiated
risk.”
National Senior Citizens Law Ctr.
Copyright 2006
Most State Laws Are Vague
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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.”
National Senior Citizens Law Ctr.
Copyright 2006
Does Reality Match Rhetoric?
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National Survey:
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59% of surveyed facilities found to have both low
privacy and a low level of services
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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)
National Senior Citizens Law Ctr.
Copyright 2006
Can Contracts Provide the Answers?
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Illinois says “yes”:
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“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.”
National Senior Citizens Law Ctr.
Copyright 2006
Disclosure Requirements
Are 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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National Senior Citizens Law Ctr.
Copyright 2006
Levels of Care
16 states recognize more than one level.
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Two or three levels
Higher levels reflect greater health care
capabilities
National Senior Citizens Law Ctr.
Copyright 2006
The Case in Favor of
Multi-Level Systems
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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.
National Senior Citizens Law Ctr.
Copyright 2006
The Case Against Multi-Level Systems
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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.
National Senior Citizens Law Ctr.
Copyright 2006
In Reality, All Systems Are Multi-Level
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Two options:
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Levels Set By State
Levels Set By Individual Facility
National Senior Citizens Law Ctr.
Copyright 2006
Who’s In?
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National Senior Citizens Law Ctr.
Copyright 2006
“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 noninstitutional alternatives.
Q: Is assisted living a “non-institutional” option?
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National Senior Citizens Law Ctr.
Copyright 2006
Potential Negatives
of “Aging in Place”
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Facility may not be able to provide adequate
care.
Assisted living may resemble discredited
“intermediate care facilities” of 1980’s.
National Senior Citizens Law Ctr.
Copyright 2006
Disqualifying Conditions
Under State Law
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Disqualifying conditions are becoming less
common, and/or less restrictive.
National Senior Citizens Law Ctr.
Copyright 2006
Disqualification for Inability to Walk
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Disqualification in 23 states.
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Most exceptions are limited, or have multiple
exceptions.
Cases under ADA and FHA require such
exceptions.
But . . . facility fires have proven deadly.
National Senior Citizens Law Ctr.
Copyright 2006
Exceptions
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May apply only to continuing residents, or to
temporary conditions
Different rationales and procedures:
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Necessary Care Provided by:
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Resident
Family
State grants exceptions on case-by-case basis
Home health agency or hospice is involved
Private exceptions agreed upon by parties
National Senior Citizens Law Ctr.
Copyright 2006
Some Exceptions Apply Only to
Continuing Residents
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Pro: Extra consideration should be given
to individuals already living in the facility.
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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.
National Senior Citizens Law Ctr.
Copyright 2006
Continuing-Resident Exception as Foot
in Door for Across-the-Board Exception
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e.g., Hospice care in California facilities
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1992:
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1999:
2002:
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in facility for at least 6 months before
becoming terminally ill
in facility before becoming terminally ill
may be terminally-ill prior to admission
National Senior Citizens Law Ctr.
Copyright 2006
Exception for Temporary Care Needs
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Twenty-five states have such exceptions.
“Temporary” ranges from 14 to 90 days.
Great variance exists from state to state.
National Senior Citizens Law Ctr.
Copyright 2006
Exception if Resident Can Perform
or Direct Care
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Eight states have exception based on
resident performing or directing care.
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As health care in assisted living has become
more routine, this exception increasingly has
become unnecessary.
National Senior Citizens Law Ctr.
Copyright 2006
Exception for Care Provided by Family
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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.
National Senior Citizens Law Ctr.
Copyright 2006
Exception Granted By State on
Case-by-Case Basis
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Seven states grant such exceptions.
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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.
National Senior Citizens Law Ctr.
Copyright 2006
Exception for Care Provided
by Home Health Agency
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Twenty-one states have such an exception.
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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?
National Senior Citizens Law Ctr.
Copyright 2006
Exception for Care Provided
by Hospice Agency
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Twenty-two states have an exception for
terminally-ill residents receiving hospice
services.
Two justifications:
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Fairness to dying person
Extensive array of services provided
by hospice agency
National Senior Citizens Law Ctr.
Copyright 2006
“Private” Exceptions:
State Is Not Involved
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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.
National Senior Citizens Law Ctr.
Copyright 2006
Private Exceptions: Pros & Cons
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Pro: State should not stand in the way of an
arrangement that is acceptable to the parties
involved.
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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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National Senior Citizens Law Ctr.
Copyright 2006
Facility Consent Required:
Pros & Cons
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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.
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National Senior Citizens Law Ctr.
Copyright 2006
ADA Requires Facilities
to Meet Care Needs
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In 1980’s and 1990’s, gov’ts were defendants
in cases alleging that persons with
disabilities were excluded from facilities.
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Now, gov’ts have ceded discretion to
facilities, so facilities are potentially liable.
National Senior Citizens Law Ctr.
Copyright 2006
Potential Facility Defenses
to ADA Claim
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Medical decisions are not subject to ADA
second-guessing.
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Facilities should be able to choose a
specialization, and not be required to
undergo a “fundamental alteration.”
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But admission/discharge decisions are
administrative, not medical.
But character of facility is set by license, rather
than by facility’s supposed specialization.
National Senior Citizens Law Ctr.
Copyright 2006
Negotiated Risk
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Meaning of term is hopelessly confused.
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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)?
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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.
National Senior Citizens Law Ctr.
Copyright 2006
Who’s Out?
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National Senior Citizens Law Ctr.
Copyright 2006
Facilities Generally Have Discretion to
Discharge Residents
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Thirty-nine states allow discharge based on a
facility’s inability to meet a resident’s needs.
National Senior Citizens Law Ctr.
Copyright 2006
Discretion Commonly Leads
to Discharge
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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).
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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)
National Senior Citizens Law Ctr.
Copyright 2006
Two Problems
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Too-soon discharge
Too-late discharge
Answer to either problem might be reduction
in facility discretion, and better quality-of-care
standards.
National Senior Citizens Law Ctr.
Copyright 2006
Other Justifications for Discharge
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Necessary care exceeds scope of facility
license
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Applicable in 33 states
Generally not relevant; subsumed in broader
justification of facility’s inability to meet resident’s
needs
National Senior Citizens Law Ctr.
Copyright 2006
Other Justifications (cont.)
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Violation of admission agreement
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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
National Senior Citizens Law Ctr.
Copyright 2006
Who’s Providing the Care?
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National Senior Citizens Law Ctr.
Copyright 2006
Mandatory Topics
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37 states require that initial training include
certain topics.
National Senior Citizens Law Ctr.
Copyright 2006
List of Topics Tend to Be
Long and General
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e.g., Colorado
Intial training:
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Within one month of hire:
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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.
Assessment skills,
Infection control,
Identifying and dealing with difficult situations and behaviors,
Resident rights, and
Health emergency response.
National Senior Citizens Law Ctr.
Copyright 2006
Some States Require Minimum
Number of Hours for Initial Training
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12 or fewer hours – 5 states
13 to 24 hours – 4 states
25 or more hours – 10 states
National Senior Citizens Law Ctr.
Copyright 2006
Facility Generally Has Great Discretion
in Conducting Training
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9 states require certain qualifications of
person conducting training.
6 states have some control over curriculum
content.
5 states require passage of competency
examination.
National Senior Citizens Law Ctr.
Copyright 2006
Nurse Participation
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26 states require that facilities employ or
contract with nurses.
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Generally nurse is not required to be present at
facility on a regular basis.
National Senior Citizens Law Ctr.
Copyright 2006
Nurse Delegation Is
Increasingly Common
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21 states allow non-nurses to administer
medication in assisted living.
6 states have authorizations beyond
medication administration for care provided
by non-nurses.
National Senior Citizens Law Ctr.
Copyright 2006
Medication Administration Presents
Difficulties in Assisted Living
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Two general approaches:
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Allow non-nurses to “assist with selfadministration of medication,” and use broad
definition of “assistance with self-administration”
Nurse delegation (medication aides, med techs,
etc.)
National Senior Citizens Law Ctr.
Copyright 2006
Nurse Delegation: Pros & Cons
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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.
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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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National Senior Citizens Law Ctr.
Copyright 2006
Analogizing Nurse-Delegation to Care
Provided by Family Members
Q:
A:
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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?
What’s acceptable at home is not
necessarily what should be acceptable at
a facility holding itself out as providing
assisted living services.
National Senior Citizens Law Ctr.
Copyright 2006
Staffing Levels
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43 states require that staffing levels be
adequate.
18 states set minimum staffing ratios.
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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.
National Senior Citizens Law Ctr.
Copyright 2006
Where Do We Go From Here?
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National Senior Citizens Law Ctr.
Copyright 2006
What Is Needed? (Part 1)
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Honest discussion about pros and cons of
various aspects of assisted living models
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Get beyond sloppy arguments
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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.
National Senior Citizens Law Ctr.
Copyright 2006
What Is Needed? (Part 2)
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Systems advocacy re:
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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.”
National Senior Citizens Law Ctr.
Copyright 2006
What Is Needed? (Part 3)
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Providers should recognize benefits of
appropriate standards.
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Good providers suffer when bad providers
are able to pass themselves off as “assisted
living.”
National Senior Citizens Law Ctr.
Copyright 2006
First Things First
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Assisted living must be defined in an honest
and understandable way.
National Senior Citizens Law Ctr.
Copyright 2006
**** The End ****
Feel free to call at any time.
Eric Carlson
Los Angeles, CA
(213) 639-0930, ext. 313
ecarlson@nsclc.org
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National Senior Citizens Law Ctr.
Copyright 2006