Speaking out for People with
 Intellectual and Developmental Disabilities


IL-ADD Releases Cost Analysis

The Illinois League of Advocates for the Developmentally Disabled (IL-ADD) has challenged the myth that all persons with intellectual and developmental disabilities (I/DD) can be served for less cost in smaller, unlicensed settings.

On October 13, they released a summary and  detailed cost analysis that considered the actual cost of care for an individual in a state Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) as compared to what that same individual would cost in a smaller setting. The analysis considered three care scenarios for BRB in a Home and Community-Based Services waiver setting (called "CILAs" in Illlinois).

BRB is a current resident of a state-operated ICFs/IID. BRB is 41 years old, 6' tall, 190 lbs, and healthy. He has a pervasive developmental disorder with borderline intellectual functioning. He is being treated for obsessive/compulsive behaviors which presently involve consuming huge amounts of fluid; interruptions of is O/C behaviors can bring violent responses. He also has a history of life-threatening PICA, however this has been completely extinguished in his present state-operated ICF/IID setting. He is prone to unpredictable explosive physical aggression toward peers, staff and property. He has been expelled from community-based programs.

While very challenging, BRB is not the most challenging among his peers at his ICF/IID; he cannot be dismissed as a uniquely expensive case. For example, he does not present severe medical conditions, seizure activities, sexual aggression, fire-starting, or (at this time) PICA.

Cost Comparison Findings (Summary)

Some closure advocates claim that people can be served in the community for "on average $55,000" per year. In fact, BRB's care would cost:

Families' Arguments Against Closure

November 17, 2006
The Toronto Star

Families fighting to keep Ontario's remaining institutions open the concerns that follow.  In the full article, each concern is more full explained. Click here for the full article:

  • Increased mortality rates (see also, California Comparative Mortality Studies; scroll down to Compartive Mortality reference)
  • Lack of medical expertise
  • Family wishes
  • Higher hospitalization rates
  • Community systems strained
  • Queue jumping
  • No fallback when placements fail
  • Public attitudes oppose closing


Chamber of Commerce: Closure = Lost Revenue

On March 2, 2011, the Greater Topeka Chamber of Commerce testified against the closure of the Kansas Neurological Institute, a state operated ICF/MR, noting the human and fiscal impact of closure.

Fiscal Impact

"There are also the economic consequences to closing KNI. The Topeka Chamber commissioned an economic impact analysis of KNI's fiscal year 2010 spending, by Impact Data Source, Austin, TX. . . .KNI will have a significant impact on the Topeka area economy during FY 2010. KNI's revenues and expenditures and its employees and their salaries provide direct economy activity. In addition, this activity will ripple through the area's economy supporting indrect benefits including sales in local businesses and organizations, as well as indirect jobs and salaries. The estimated direct economic impact of KNI in FY 2010 was $28 million. The direct revenues of KNI, its spending and the spending of its workers will generate another $37 million in sales or economic output in area businesses and other organizations. In total, the economic impact of KNI in FY 2010 will be $66 million."

Human Impact

"KNI is a shining example of such important work on behalf of their client's families and all Kansans. The citizens that live at KNI are very fragile; ninety percent of their population is profoundly disabled, many with multiple disabilities. Thirty-five percent of the 156 residents cannot eat through their mouths. . . . These fragile Kansans need care around the clock; they need specialized medical & dental care, they need appropriate transportation, special equipment, maintenance, appropriate food and special means to provide nourishment. It is unlikely the community-based facilities already have this level of care available in their locations across the state. We believe providing appropriate care woudl again require cost shifts from KNI spending to community-based spending for specialized transportation, equipment, maintenance and other needs. . ."

The Chamber's Testimony and Economic Impact Report are here.

New Jersey Survey on Residential Choice

VOR's Past President, the late-Robin Sims, held a press conference in her state capitol to announce the results of a residential survey that she helped spearhead. The survey was simple. It was sent to family members and guardians of New Jersey State Developmental Center residents. The survey asked recipients if they were happy with the current placement of their loved ones, or would prefer community-based care instead. The results were overwhelmingly (96%) in support of continued ICFs/MR placement. The press conference at the state capitol was an effort to reach lawmakers and the press with these statistics, and point out the serious flaws of earlier state surveys and studies that have been used to justify downsizing and closure proposals. In coalition with many families, Robin fought fire with fire, developing a survey for families and guardians that asked just one simple, unbiased question.

A Press Release was issued and The Star Ledger featured the event and survey.

Videos from the press conference are also available: http://vimeo.com/8177809 (Sims, intro), http://vimeo.com/8057837 (Sims, extended), http://vimeo.com/8059191 (Rocco Mazza, sibling), http://vimeo.com/8177135 (Assemblywoman Huttle on Choice), and http://vimeo.com/8177251 (NJ State Senator Bucco on Choice).

ICFs/MR as Permanent Homes

Individuals with developmental disabilities who qualify for Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR) have a legal right to access and to stay at those facilities as long as they remain eligible and choose to do so, and thus they have a right to consider ICFs/MR their permanent home.

For full letter click here.

VOR Grassroots Advocacy Manual

VOR’s “Grassroots Organization and Advocacy Manual” help choice advocates harness their collective grassroots advocacy strengths. The Manual aims to provide advocates with easy-to-understand resources for your state advocacy on behalf of people with mental retardation and developmental disabilities.  Developed for organizations or individuals, advocates are encouraged to use this resource, in whole or part, to maximize grassroots participation.

      Section 1: Grassroot Organization Leadership
      Section 2: Legislative Advocacy
      Section 3: Public Relations
      Section 4: Legal Advocacy