A DECADE OF PARTICIPATORY ACTION RESEARCH
ON “REAL CHOICE”:
WHAT HAVE WE LEARNED ABOUT DISPARITIES IN
COMMUNITY LIVING CHOICE EXPERIENCED BY
PEOPLE WITH DISABILITIES
Joy Hammel
A Partnership between:
University of Illinois at Chicago &
Access Living & Progress Center
Centers for Independent Living
Objectives




Examine disparities related to institutional vs. community living
options & choice experienced by disability & aging constituencies
Share findings from community-based participatory action
research with people trying to move out of nursing homes to the
community
Show how this research has helped to influence systems & policy
change to address these disparities and increase community
living choice & control
Target key implications & share resources for supporting
consumer choice & LTC systems change in your own practice
U.S. Constructions of Aging X Disability (Minkler,
Estes, Kennedy, Stone, Albrecht)
Successful Aging
Disability
-healthy & well
-NOT healthy
-functional
-dysfunctional
-independent
-dependent/ care burden
-autonomous decision makers -system oversight
-focus on QOL & leisure
-focus on basic ADLs &
safety
Affect resource allocation, societal treatment in LTC &
ergo, individual “choice”
Oppression & Disparities

“When individuals are systematically
subjected to political, economic, cultural or
social degradation because they belong to a
social group” (Charlton)
Challenging Oppression, Gaining Rights &
Changing Systems

U.S. Societal mandates




Americans with Disabilities Act
Olmstead Decision
New Freedom Initiative &
CMS LTC Systems Change
Global mandates:

UN Convention on the
Rights of Persons with Disabilities
Impetus for Research



What do we know about disparities faced by people with
disabilities specific to choice & control over where they live?
How does living situation (e.g., nursing home vs. community)
influence health, wellness & quality of life long term?
Why are nursing home placements increasing rather than
decreasing in light of ADA, Olmstead and consumer mandates?
Illinois as an example….

At the start of this research, we knew the following about Illinois:
 Rate of people under 65 placed in nursing homes had increased
25% in 5 yrs. since Olmstead, with biggest increase among
people with psychiatric diagnoses
 Spending 85% of long term care on institutional/nursing home
care versus 15% on community living options/supports
 Illinois rated one of 10 worst states in relation to federal data on
LTC institution:community spending ratio
The Social Action Group (SAG)

Participatory Action Research
 The
disability community as partners in defining,
investigating, and solving social problems
 Social action agenda = the civil right to live &
participate in the community with supports
 Goals: build knowledge from within, inform & effect
systems change, & build community
SAG Methods

Longitudinal interviews (n=140 across 4 yrs.)



Qualitative & Quantitative data on getting in, life in, getting
out of NH, community living, QOL and barriers/supports
RCT of community living management program to
support the transition from NH to community (n=70
treatment, 70 control)
Public town hall meetings (n=300+)
Participants

Cross constituency



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Physical impairment (50%), Psychiatric (29%), and Mixed (21%)
Age: 19-75 (ave. age 44)
Gender: 60% men, 40% women
Race: African American (71%), White (19%),
Latino or Hispanic (7%), Other (4%)
All living on subsidized incomes below poverty and/or in
Medicaid nursing homes in urban community
All expressed desire to leave NH and move to the
community
Findings: Getting into the NH

Many ways to get into the NH & easy to do, esp. if
living in poverty in urban community
 Actively
recruited off the streets, shelters, psychiatric
systems, & emergency wards (> 1/3 report)
 Not aware that going into a NH– presented as a place to stay
with a roof, bed & food that’s “better than the streets”

Landing up in NH far from familiar neighborhood & supports=
lose social capital & supports
Getting into the NH

Felt NH was the only option/not offered any other
choice (95%)


Told by professionals “you need help taking care of
yourself” and “NH is the only choice given your
situation” and “you’ll be safe there”
Thought it would be “short term”
However, average stay 26 months (range 3 –120+
months)
 Nationally, 50% who enter will stay in nursing home

Life in:
How Context affects Control & Choice
NH
Community
Signif.
Are you living in a situation of
choice?
83% no 17% no .000
Are you living with people you
would choose to live with?
80% no 38% no .005
Are you a member of any
communities of choice (e.g.,
neighborhood, community,
religious, minority or social
groups)?
67% no 22% no .03
Information access & control


60.7% in NH (versus 30.5% in community)
report information access & availability as a big
problem on daily basis
97% in NH (versus 10% in community) report
that access to a phone or information had been
withheld or withdrawn in this living situation
Information Access & Control
“How do you get out if you don’t know how? How
do you know what you don’t know? …
Until the CR program came by, I didn’t even know I
had a right to choosing my own living situation; I was
told I needed to be in this NH and that’s the only
choice since I had no money to do anything else.
Who even knew there were programs to help me get
out and get on my feet?”
Impact of Social Context on
Personhood
“In the NH, you’re told when you eat and are given no
choice on what you eat. You’re told what time you get
up and go to bed, who can visit you and when. THEY
TELL YOU when they’ll “take care of you”….you lose
all sense of time and meaning. You lose all connection
to the outside world except through TV. The only thing
you can count on is death…it’s everywhere. That, and
a feeling that nobody cares, that you’re just a
paycheck. You have to fight that with every breath if
you ever want to leave, or you just accept it and die
there...”
Safety Risk vs. Risk with Dignity

“The problem is we always focus on the person and
whether they are safe, instead of what we can do to
support someone to feel safe and in control in their
homes. Let me tell you, being in a nursing home didn’t
make me feel a whole lot safer….So if you’re going to
say people are better off and safer in a nursing home,
at least look at what’s happening in these places to see
if that’s true. ..There’s risks everywhere. I think the
whole reason for the ADA and Olmstead was to shift us
to say we have a right to take risks and to the same
opportunities as anyone else.”
Impact of Context on QOL
Flanagan QOL Scale:
How satisfied are you with this area in your life NOW?
(1=extremely satisfied to 6=extremely dissatisfied)
In NH
Living conditions & opportunities to 4.59
provide input into them (**p=.000)
Community
2.55
Financial security (**p=.01)
4.83
3.77
Enjoyable & worthwhile work
4.43
4.32
Learning/school opportunities
3.81
3.45
Relationship with
spouse/partner/lover
Health & personal safety
3.39
4.11
3.29
2.86
Neighborhood safety & security
3.07
2.41
What affects QOL most?
Life on the economic edge


LIFE IN NH: lose assets coming, only control
$30/mo. when in, can’t move out without monies
to do so
ONCE OUT: Average income in community:
$569/mo ($6828/yr.)


Largest expense is rent: $412/mo. on average,
representing 70+% of total income
#1 predictor for successful move out of NH
to community was having a housing voucher
or not
Economic Impact on Everyday Health,
Wellness & Participation


92% spending or exceeding income every month with no savings
or emergency resources
What are you most likely to give up given finances? (Morgan,
2004)
 Medications & medical care
 Food
 Laundry & basic supplies/necessities
 Social support & networking**
 Recreational & community participation**
** Social participation in large part linked to transportation availability
& cost
Affordability X Accessibility Influence “Real
Choice” Integration
What is it about Community & Community Living
that is so important to pursue?

Positive outcome:
 31%
increase in percentage of people moving out of
the NH to the community despite barriers &
disincentives
Right to same opportunities & respect as
rest of society

“Privacy. Safety…. Being treated like a
human being with respect, not a patient or
a diagnoses.”
Choice & Control

“The right to do what I want to do, when I want
with who I want. It means a whole hell of a lot.
We’re in wheelchairs but we’re not limited. Don’t
put limitations on me.”
Freedom & Dignity
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

(BIG SMILE). “It’s one word and that’s FREEDOM.
Freedom of choices, freedom to live.”
“Feels like I’m a person, like I’m a man again.”
“Proud to be. Proud to stand up and do for
yourself.”
Strong Sense of Need/ Responsibility to
Give Back


“To be able to help other people get out, and if they can’t
get out, to make sure their basic dignity is met…. This is so
important.”
Most Important Participant Goals
 Becoming an advocate for your own rights
(9.4/10 importance rating)
 Giving back/supporting other disabled people (9.2/10)
 Community activism & systems change for people with
disabilities as a minority group (9/10)
The power of community & the mandate to
include disability community in decision
making…
“You can’t fight this by yourself, and it’s not about what I can or
cannot do physically, and it’s not about whether I’m motivated or
not. I’m not damaged, the system is, the society is! (slams table and
rest of group says Amen, you got it brother). It’s about changing
systems and getting rights and making sure they are enforced
…It’s about working together and supporting each other– that’s
how we get power. I’m learning more about how to get out and
survive in the community here with other people going through the
same thing than I ever did in rehab…now I feel good about myself
and about other people with disabilities too, and I really want to
help them do the same thing, to feel like they matter. … Why can’t
rehab be more like this?”
Where are we at now?
The good, the bad & the ugly

The Good

CMS Real Choice & Money Follows the Person demonstration
grants



Awarded > $3 billion in grants to states with PLANS to transition
> 52,000 out of institutions/nursing homes
National research on impact (Kane & Kane),
cost effectiveness (LaPlante) & promising practices (see CMS
website)
Illinois awarded $53 million MFP grant in 2007


Projected to transition over 3000 people out of nursing homes by
2012
Using funds to replicate “Community Living Management” (aka
SAG) within CILs as “fee for service”
Where are we at now?

The Good:

Nationally, systems change has resulted in major shift
in LTC spending from 85:15 to 70:30 (nursing
home:community)


Best States: OR, WA, MN, TX
Majority of states have Medicaid Home & Communitybased Waiver (HCBW), Money Follows the Person
(MFP) & other programs to support transitions &
community living options/supports
The Good

Money Follows the Person (MFP)/ Community
Choice legislation in states


Texas passed “Rider 28” to use Medicaid funds to
“follow people” from NH into the community, and,
over 12,000 have transitioned out since 2003
Push for Community Choice in Affordable
Health Care to do the same nationally
The Bad & The Ugly


The Bad: Disparities among states with many still very much behind
in rebalancing & systems change
 Illinois still has a 75:25 spending split with major lawsuits lost by
State and being negotiated on settlements
 Along with severe shortages in affordable, accessible & integrated
housing given needs so need for coordinated housing x
community support initiatives that cut across Medicaid and HUD
The Ugly:
 Continued reports of nursing home abuse/negligence & violations
 Chicago Tribune report on nursing home ratings & violations in
Cook County Medicaid NHs; verification on national nursing
home reform website

Increased risk of nursing home placement in times
of state & federal budget cuts/crises (regressing
back to institutional default)
Take home messages: Change!
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From an individual deficit focus to
recognizing & responding to environmental
issues (living situation choice, financial,
family support or not)
From a welfare “take care and protect the less
fortunate” to a civil rights “ you have the right
to…”
From a model of “care & dependence &
burden” to a model of “consumer
direction”,“community living with support”,
and “risk with dignity”
Ways to Get Involved
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Inform consumers & their social networks about
rights & options, and network with them with
groups that will support & inform them, like CILs
Educate yourself & rehab. professionals about
rights, funding & evidence about best practices to
choice
Advocate with the disability community for
legislation & policies to rebalance LTC and
support choice
Work with communities to create accessible,
integrated, affordable , safe & healthy housing
and livable communities
Special thanks to…


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The community of learning, activism & research in the
Social Action Group
The disability & aging activism communities collaborating
with and guiding us locally & nationally
This project was funded in part by the National Institute of
Disability & Rehabilitation Research #H133G0100383 & the
UIC Great Cities fund