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Despite tremendous progress in public advocacy and disability services over the past five decades, serious deficits remain.  

From a national perspective, human services agencies have entered a lean economic period, resulting in a shift of funding priorities.  In early 2006, Congress passed budget legislation containing significant changes to Medicaid, trimming spending by $4.7 billion over 5 years and $26.4 billion over 10 years.  Additionally, the President’s FY2007 budget request includes additional cuts of $14 billion over five years and $35.5 billion over 10 years.

States are already feeling the pinch and are scrambling to find ways to cover program expenses and mission-critical services.  Despite the population’s well-recognized vulnerability, too often individuals with mental retardation and/or developmental disabilities (MR/DD) are missed in the discussion.

Preventive programming and outreach efforts are often among the first to be cut when budget cuts occur, but this only sets into motion a cycle of dependency and unmet need that carries far more societal costs in the long-run.

According to the Center for Disease Control, the estimated lifetime cost for those born in 2000 with a developmental disability are expected to total $51.2 billion for individuals with mental retardation and $11.5 billion for those with cerebral palsy.

For every single incident in which the occurrence of a developmental disability can be prevented, the state avoids not only the direct costs of financial assistance for the individual, but also costs associated with special education and a lifetime of medical services.   

In the Fall of 2005, UCP’s national organization began a three-phased research project to look at how well states are doing in their efforts to create a quality, meaningful and community-inclusive life for Americans with mental retardation and developmental disabilities (MR/DD).  The study specifically examined the coverage and services offered by the nation’s Medicaid program, which has enrolled 41.3 million people, of whom almost 530,000 have been diagnosed with MR and/or DD.  More than 230 individual data elements were reviewed from governmental, nonprofit and advocacy organization sources, resulting in a ranking of all 50 states in a number of key outcome areas. 

Full results can be found at www.ucp.org/medicaid/, but the study emphasized a need for improvement in every state and touted several major conclusions:

§         Too many Americans with MR/DD continue to be excluded from community-based living;

§         Too much funding for individuals with MR/DD is directed at large institutions rather than community-based services;

§         Quality assurance efforts are too few with only 31 states participating in a nationally-recognized QA initiative;

§         Too many working-age individuals are not engaging in meaningful employment participation, nor are states appropriately helping individuals with MR/DD transition Medicaid to work; and

§         Too few states prioritize self-directed services.

UCP of Illinois’ home state was ranked at the bottom of the list - #46 out of the 50 states - with an overall letter grade of “D”. 

Add to this is the troubling fact that, out of Illinois’ 102 counties, forty-one are completely unserved by any local UCP affiliate. 

These unserved areas are not just rural.  In fact, some of Illinois’ larger communities are included, specifically:  Rock Island, Rockford, Peoria, Bloomington/Normal, and East St. Louis.

The need for continued public advocacy and service outreach is extensive and urgent.