Real Choices Systems Change Grants for Community Living

Beth Hudnall Stamm, PhD, Neill F Piland, DrPH, Debra Larsen, PhD, Ann D Kirkwood,

Russell C Spearman, MEd, Stacy Specht, MPA & Donna Parker, AA

Institute of Rural Health at Idaho State University

Idaho Real Choice Systems Change (2001-2004) & Money Follows The Person (2003-

2006) Grants

Project GoalsThe goal of this project is to create enduring systems change in community long-term services and supports. The plan for change is in two phases and two separate grants 18-P-91537; 2001-2004 and 11-P-92045; 2003-2006 that overlap by one year

Phase 1a statewide anti-stigma campaign and a needs and resources assessment including an economic analysis of the current system, culminating in a plan for change

Phase 2Community development project and effectiveness study to test and refine the plan

Improving Community Integrated Services and

OutcomesStatewide Assessment of Needs and Resources (2001-2003) to develop a baseline and benchmarks of needs and resources for people of any age with disabilities and long-term illnesses in the state of IdahoAnti-Stigma Campaign (2001-2004) designed to reduce stigma thereby paving the way for more successful community integration, a Economic Analysis of the current Medicaid system (2001-2004) to maximize appropriate funding strategies and leveraging of available fundsCommunity Development Project (2003-2005) to examine the political and fiscal feasibility of addressing access to resources for living by approaching it as a community development problem, not a health care problemEffectiveness study (2003-2005)to determine the quality and value of the plan derived. The final product will be a plan for statewide implementation that has more integration of services, consumer and stakeholder input, and a monitoring system for continuous quality improvement.

Key Activities of The Two Studies

2001-2002 2002-2003 2003-2004 2004-2005 2005-2006

Real Choices

Start-up, Needs & resources

Needs & resources, Anti-stigma

Community development, Effectiveness study

Money Follows the Person

Community development, effectiveness study

Community development, effectiveness study

Finalize plan, Close out

Methodology

GrantGoal 1:

Anti Stigma

Needs and Resources

Goal 2: Economic Analysis

Goal 3: Community

Development

Goal 4: Effectiveness

Study

Real Choices Study2001- 2004

Develop Campaign

Pre-testLaunch

campaign for one year (2003-2004)

Refine needs & resources measureCollect needs & resources info

Collate, analyze needs & resources

Identify variablesCollect data for

system definitionsComplete plan

for realignment of funds

Test plan

Identify communityImplement community development project

Launch effectiveness study (small numbers, without comparison group)

Money Follows the Person Study2003-2006

Post-testContinue

Campaign 2nd year r (2004-2005)

2nd Post-test

Use existing baseline information

Test plan with effectiveness study

Identify communityImplement community development project

Expand effectiveness study (more participants, comparison group)

Follow-up on 1st year people

Target PopulationStatewide project, with a regional component, targeting people of all ages with physical, mental, developmental, or age-related disabilities and long- term care needs.

Types of Disabilities Represented by N&R

Respondents

151

40

125

16

4125

165

73

020406080

100120140160180

485 people reported 636 disabilities

Age at Onset

birth28%

childhood22%

adult39%

older adult11%

Age of Onset for Initial Disability

Mean onset 26 yrs (27 SD)

none82%

adult11%

childhood3%

older adult4%

Age of Onset for 2nd Disability

Mean onset 42 yrs (23 SD)

Current Age of ParticipantsMean 40 yrs (SD 27)Most common age = 40 yrsYoungest age = 0 yrsOldest age = 97 yrs

Goal 1: Anti-Stigma Campaign

Advisory Work Group to support the anti-stigma campaign (2001-2003; 2004-2005)State-wide campaign 2003-2004Pre and post-test state-wide random phone survey of values, attitudes (2003, 2004)Stepped up regional anti-stigma campaign through 2005 with second post-test

N&R: Experienced Discrimination

0

5

10

15

20

25

Per

centa

ge

Rep

ort

ing

Dis

crim

inat

ion

Housing

Medical Care

Employment

By Provider

Transportation

Other

Goal 2: Economic AnalysisContinue Economic Analysis of the current Medicaid system to identify ways to reapportion and maximize fundingConduct statistical, economic, and policy analysis of the first all available data

Type of Agency Reimbursement

Other,16%

Unspecified, 40%

Medicaid, 25%

Medicare, 8%Private

Insurance, 11%

Community Development Project

People with disabilities do not have a chance to share in resources equally with non-PWDsCreating a hospitable climate for community integration is critical

Refine Coalition plan based on first Real Choices Systems Change study and input from that CoalitionIdentify community(ies) and establish a cooperative agreement for community developmentConvene Coalition(s)Study how selected community(ies) develop resources across life areasIntensify anti-stigma campaign in community development town(s).

N&R: Annual Household Income

0102030405060708090

100

Num

ber

of

Resp

ondants

N&R Work Status

020406080

100120140

Num

ber

of

Res

pondan

ts(c

an b

e in m

ult

iple

cate

gori

es)

Goal 3: Community Integration Effectiveness

StudyPWD experience lower quality of life than their non-PWD peers

Continue effectiveness study from 2003Recruit additional participants for effectiveness study

Continue or recruit intervention communityRecruit a comparison community

Conduct a 1 year follow-up on participants from the first study

Quality of Life

0%

20%

40%

60%

80%

100%

% R

esp

ondin

g

Person with DisabilityBefore Disability Now

0%

20%

40%

60%

80%

100%

% R

espondin

g

PoorBelow Average

Average

Above Average

Excellent

CaregiverBefore Disability Now

Total Household IncomeMore than half of the respondents (54.5%)

reported total household income of less than $25,000 per year.

Most Commonly Reported = $15,000-24,000 (20%)

Just over one third of respondents reported total household income of <$15,000 per year (34.5%)

Disability Caused Life Status Change

0

50

100

150

200

250

Num

ber

of R

esp

ondants

Disability Has Caused Additional Health

Problems

53%

26%

050

100150200250300350400450

Num

ber

of Part

icip

ants

Wit

h

Condit

ion

PhysicalHealth

Mental Health Oral Health

12%

Participant Involvement

Individuals enrolled in the study will actively direct actions relating to their community integration and will provide feedback as to needs and preferences.

Participant Involvement

Individuals enrolled in the effectiveness study will actively direct actions relating to their community integration and will provide feedback as to needs and preferences

Evaluation of Grant Completion

Anti-stigma campaign- Evaluation based on pre- and post-campaign surveys Economic Analysis – evaluation based on existence of document, recommendations & issues addressed.Community Development Project- Evaluation based on reports, recommendations and need/resources addressedEffectiveness Study- Evaluation based on regular survey intervals to determine if the project meets the needs of the participant, and satisfaction with expected outcomes

Refining the Process…Federal Requirements

Participant presentationsOther people with disabilitiesConfidentiality

Executive sessionsBlanket Statements of Confidentiality

Coalition involvement in participant plans

Participant releases of information

Funding and Participating Organizations

This document was developed under Grants No. 18-P-91537 and 11-P-92045 from the U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. However, the contents herein do not necessarily represent the policy of the U.S. Department of Health and Human Services, and you should not infer endorsement by the Federal government. Please include this disclaimer whenever copying or using all or any part of this document in dissemination activities.

Real Choices Systems Change Grants for Community Living

Beth Hudnall Stamm, PhD, Neill F Piland, DrPH, Ann D Kirkwood,Russell C Spearman, MEd, Stacy Specht, MPA & Donna Parker,

AA

Institute of Rural Health at Idaho State University

Idaho Real Choice Systems Change (2001-2004) & Money Follows The Person (2003-

2006) Grants