Administration on Developmental Disabilities Envisioning the Future Summit Series

Administration on Developmental Disabilities Envisioning the Future Summit Series

Listening Session

Philadelphia, PA – October 18, 2010

Michael Morris

Chief Executive Officer

Burton Blatt Institute at Syracuse University

Executive Director

National Disability Institute

Administration on Developmental Disabilities Envisioning the Future Summit Series

Listening Session

Philadelphia, PA – October 18, 2010

For adults with developmental and intellectual disabilities, there is a subject that receives little attention yet touches all of us daily, regardless of gender, age, race, ethnicity, and type of significant disability. It is visible every day in our inner cities, in rural and suburban locations. It defines our humanity and profoundly impacts our access to health care, needed technology, lifelong learning opportunities, where we live, and level and scope of community participation.

The latest public relations campaign supported by CMS and state Medicaid Infrastructure projects declares “Think Beyond the Label!” Yet, no label is as burdensome and onerous as poverty. Lack of financial resources and knowledge and skills to manage income creates a distressing self fulfilling prophecy of despair with direct impact on mental and physical health, lack of positive self concept, and diminished status with other community stakeholders.

Since the creation of the Administration on Developmental Disabilities and the multiple reauthorizations of the Developmental Disabilities Act, our attention has trended to a concern for civil rights and full citizenship, person centered planning and self determination, expectations of employment first, community living and a home of your own, and a commitment to full family engagement in support of the individual member with significant disabilities. Yet across these priority interests, we have failed to address the most prevalent barrier to independence and freedom: the impact of poverty. Whether the critical issue of focus is access to healthcare, employment, technology use, housing, or transportation, the approach for the future must be an underlying targeted emphasis on poverty reduction. The advancement of economic self sufficiency, financial stability, and mobility will be a critical facilitator to the dream of “full participation as valued members of inclusive integrated communities”. The design and continued testing and refinement of pathways out of poverty to advance economic self sufficiency is not a required area of attention for Developmental Disabilities Councils,University Centers of Excellence, or Protection and Advocacy systems. The goal of advancement of economic self sufficiency is not a required objective for a youth in transition with their annual IEP, of an individual plan for employment (IPE) for a client of Vocational Rehabilitation or the individual support plan for a Medicaid Home and Community-based waiver recipient.

We can guess at the disconnect and lack of attention to promote the goal of advancement of economic self sufficiency. Is it the educators, VR professionals, and Medicaid support coordinators who have limited expectations about what is possible for an adult with a developmental disability? Is it our means tested policies that require a life sentence of impoverishment to be or remain eligible for SSI, Medicaid, food stamps, and housing rental assistance? Is it our own core beliefs that has set the bar so low to allow subminimum wages, and to consider income preservation and to reach for a piece of the American Dream with home ownership, microenterprise development, and any notion of saving for retirement as impossible and, even worse, “unrealistic”.

The ADD strategic plan development offers ADD and the federal government a unique platform to lead, to change thinking and practice, to build new types of collaborations across federal agencies, with state and local government and the private sector. Twenty years after the passage of the ADA, there are new pioneers and patriots embracing an economic empowerment agenda. New partnerships at a state and local level are bringing together new resources and tools to advance economic self sufficiency. Access and use of favorable tax provisions like the Earned Income Tax Credit (EITC), braiding of increased use of Social Security work incentives (PASS, PESS, IRWE, 1619 a and b) with Individual Development Accounts (IDAs) and financial education, and improved affordable and accessible financial services represent a beginning picture of possibilities for individuals with developmental and/or intellectual disabilities. At a federal level, there are beginning conversations that represent a new reality of opportunity with the Community Development Financial Institutions Office at Treasury, the financial education programs at FDIC, the proposed Bank On program at Treasury, the Assets for Indempendence (AFI) program at OCS, the Ticket to Work program at SSA, and more traditional collaborations at RSA, OSEP, CMS, and Labor. Advancing economic self sufficiency as a key goal of a new ADD strategic plan is a “game changer”. It casts aside status quo thinking and can transform the focus of the traditional operational pieces of ADD: the Councils, UCEs, and P and As as well as Projects of National Significance. It can also place ADD front and center of accelerating movement across the federal landscape to leverage a coordinated set of resources that test intervention strategies, educate and train consumers, providers, and families, and moves to align policy and practice.

An Advancing Economic Self Sufficiency Agenda:

a)Helps people with disabilities improve their economic stability.

b)Plans for a better economic future with goals that are measurable.

c)Increases motivation to work and earn by learning about tools that improve economic gain and mobility and how to access them.

d)Decreases financial stress and crisis in an individual’s life.

e)Supportsknowledge and skill gains for the target audience as consumers of financial services and products through financial education, peer support groups, and one on one counseling.

f)Tests and evaluates multiple intervention strategies that coordinates resources and supports across public and private sector stakeholders.

g)Identifies and disseminates individual and system successes with qualitative and quantitative evidence of advancement of economic self sufficiency for the test audience.

Across the federal government, there should be an ambitious 10 year goal to reduce the level of poverty for people with significant disabilities by 50 percent. States and communities should be provided planning grants and then implementation funds to accomplish this goal. Education and training, pilot demonstrations, and policy research activities must be coordinated across ADD authorities and with other federal agencies. These collaborations can improve understanding of the relationship between the Olmstead community integration mandate and economic empowerment strategies, the Affordable Care Act and savings strategies and employment support activities and benefits planning for the future. This is new ground for ADD and the target audience: new language, new tools, new partnerships, and new expectations and outcomes.

The opportunity for ADD is enormous. The stakes couldn’t be higher. The interest should be bipartisan and the impact should demand that as the US economy begins to recover, individuals with developmental disabilities are neither ignored nor left behind. For Mary in Florida, who is saving to buy a condominium; For Richard in New York, who dreams of starting his own business; or Linda in Ohio, who wants to be more productive outside of a workshop; For the Whitmanfamily in Texas, who has expectations that their son will go on to higher education, ADD can be the beacon of hope galvanizing support and leveraging new relationships at all levels of government. ADD can be a leading voice that redefines expectations and blazes new pathways for future generations of a better quality of life. We are prepared to outline and detail next steps that transforms current policy and practice. Thank you for your interest and investment in building a better economic future for millions of individuals with developmental disabilities nationwide.

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