CHANGING THE DISABILITY-POVERTY PARADIGM

CHALLENGING THE DEPENDENCY PARADOX IN POLICY, MONEY & HUMAN SERVICES

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VALUE STATEMENTS• Poverty is a war whose battlefields are local

communities, led by either complacent or transformational leaders.

• Poverty is fueled by weapons of unemployment, paternalism, vulnerability and opportunity gaps.

• Poverty can only be overcome by a commitment of every individual in a community to work together in a solutions-oriented process (ie. Looking Inwardly instead of Pointing Outwardly).

POVERTY IS ABOUT PEOPLE

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THUS FAR, WE HAVE MADE THE SHIFT FROM THIS……

To……..

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WORK

PLAY

FAMILY & FRIENDS

POVERTY BY THE NUMBERS

SUBPOPULATION 2009 Poverty Rate 2010 Poverty Rate

Children 20.7% 22.0%

African-American 25.8% 27.4%

Hispanic 25.3% 26.6%

Disability 25.0% 27.9%

Total U.S. Population 14.3% 15.1%

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U.S. Census Bureau (13 September 2011)

46.2 million Americans were living in poverty in 2010.

Persons with Disabilities experienced the highest rates of poverty of any other subcategory of Americans for the tenth year in a row.

Figure 1. Percentage of Estimated Federal and State Expenditures for Working-Age People with Disabilities by Major Expenditure Category, Fiscal Year 2008[1]

[1] Adapted from Livermore, Stapleton and O’Toole (2011, Health Affairs)

POVERTY AND DISABILITY: MONEY IS THE NOT ALWAYS THE PROBLEM; SOMETIMES IT’S AN ISSUE OF PRIORITY

$357 Billion in FY2008

Also includes LTSS for PWD via Medicaid & Medicare

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WHAT DOES $357 BILLION BUY US IN TERMS OF OUTCOMES?

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WE HAVE PROOF THAT PEOPLE CAN WORK WHEN SERVICES FOCUS ON EMPLOYMENT

2009 – UMASS Boston ICI ID/DD Agency Survey

Success in employment varies widely 2009Washington State (88 %)Oklahoma (60%)Connecticut (54%)Louisiana (47%)New Hampshire (46%)

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• There is no private insurance product to cover life long supports for people with significant disabilities

• No one individual or family can bear the costs of supports for a life time

• Until Medicaid HCBS, institutions were the only alternative for many PWD

MEDICAID IS THE FOUNDATION OF STABILITY FOR PWD

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TODAY’S FISCAL CRISES IS NOT JUST A MATTER OF NUMBERS, IT IS A MATTER OF PEOPLE.

THE DIALOGUE WE MUST ENGAGE IN IS ONE OF EQUITY, ETHICS, AND ENGAGEMENT.

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EQUITY

THROWING MONEY AT THE WRONG THINGS IS NOT IN THE BEST INTERESTS OF INDIVIDUALS WITH DISABILITIES

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This Model results in Chronic Impoverishment, Cyclical Dependency, and Loss of Human Dignity throughout Lifespan.

The Cyclical Dependency Model

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This Model represents Optimal Self-Sufficiency, Independent Living, Economic Empowerment and Full Community Participation

The Self-Sufficiency Investment Model

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COMMUNITY SUPPORTS ENABLE INDIVIDUALS TO….

Live in their own home and enjoy the support of family and friends

Get a job

Enjoy good health

Be part of and contribute to their community

Achieve their personal potential for independence and self sufficiency

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SELF-SUFFICIENCY IS NOT ONLY BETTER FOR PWD, IT ALSO MAKES ECONOMICAL SENSESERVICE AREA CYCLICAL DEPENDENCY SELF-SUFFICIENCY MODEL

Education Segregated: $25-45K/student/year

Full Inclusion: $12-26K/student/year

Employment Average annual costs of SW/individual: $19,388SW is less cost-efficient to taxpayers: 0.83SW is less cost-efficient to workers: 0.24

Ave annual costs of SE/individual: $6,619SE is more cost-efficient to taxpayers: 1.21SE is more cost-efficient to workers: 4.20

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Data Sources:Education: Weiner, 1985; Carlberg & Kavale, 1980; Baker, Wang & Walberg 1995; Piuma, 1989; Blackorby & Wagner, 2001.Employment: Cimera, R. (2007, 2008, 2009, 2010)

COMMUNITY SERVICES MAKE FINANCIAL SENSE

Type of Service

Cost per Person

People Served with $5 M

ICF/MR $128,275 39

HCBSResidential

$70,133 71

Host/Foster Family

$44,122 113

Own Family $25,072 200

Data Source: Lakin, K.C. MSIS and NCI data from 4 states (1,240 Individuals), 2009  

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ETHICS

REFORM REQUIRES BOLD AND COURAGEOUS LEADERSHIP BY THOSE WORKING DIRECTLY WITH PWD

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CHANGED THINKING LEADS TO CHANGED PUBLIC POLICY

From:

Assuming that PWD

Need to be taken care of

Can’t workNeed constant

supervisionAre a burden to

families

To:

Discovering that PWD

Can be self sufficientCan work and pay taxesDon’t need constant

supervisionAre valued family

members

Key Point: People need support that matches their needs.

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THEORETICAL FRAMEWORK: DIMENSIONS OF THE SOCIAL GUARANTEE

APPROACHSocial guarantees are defined as legal and administrative mechanisms that determine entitlements and obligations related to certain rights and ensure the fulfillment of these obligations on the part of the state. While the social guarantee approach is still in its infancy, the social guarantees framework can be of benefit to the monitoring of public policy and progressive realization of social and economic rights in a range of contexts.

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ENGAGEMENT

SITTING ON THE SIDELINES, BURIED IN A SANDBOX SOMEWHERE IS NOT A PATH TO TRANSFORMATIONAL LEADERSHIP.

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TRANSFORMATIONAL LEADERSHIP:REFORM IS IMMINENT

REFORM IS INEVITABLE…..

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TRANSFORMATIONAL LEADERSHIP:WHAT ROAD WILL YOU TAKE?

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BE MINDFUL WHAT WE ASK FOR…..USE THE CRISIS AS AN OPPORTUNITY FOR TRANSFORMATION

HOW TO LEAD TOWARD CHANGE IN TIMES OF UNCERTAINTY Innovative Collaboration with Traditional

and Non-Traditional Partners as opposed to Chronic Competition & Distrust

Continue to Look Inwardly

Engage in the Advocacy Wave with Meaningful Policy Alternatives and a Willingness to Compromise – at all Levels of the Public Policy Dialogue

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THANK YOU!!!Serena Lowe

President, AnereS Strategies, LLCExecutive Director, Collaboration to Promote Self-Determination

Federal Government Affairs Consultant, National Disability Institute

202-548-2502 (Office) 202-907-8369 (Cell)EwolAneres@gmail.com

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