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

-functional

-independent

-autonomous decision makers

-focus on QOL & leisure

-NOT healthy

-dysfunctional

-dependent/ care burden

-system oversight

-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 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 Comm-unity

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

In NH Community

Living conditions & opportunities to provide input into them (**p=.000)

4.59 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

3.39 4.11

Health & personal safety 3.29 2.86

Neighborhood safety & security 3.07 2.41

Flanagan QOL Scale: How satisfied are you with this area in your life NOW?

(1=extremely satisfied to 6=extremely dissatisfied)

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

(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 & Community-based 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!

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 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…

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