Speaking out for People with
 Intellectual and Developmental Disabilities

Toolkit for Legislators


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.

Myth of a Medicaid Institutional Bias

The allegation of a Medicaid institutional bias for people with intellectual and developmental disabilities (I/DD) is simply not true. It is based on two false premises:  (1) that all institutional services are mandatory and all home and community-based services (HCBS) are optional, and (2) that more dollars are spent on institutional services than on HCBS services.

Seeing is believing: Tour an ICFs/MR

To fully appreciate the people served, their extreme needs, and the professional and compassionate care and training they receive, we encourage Members of Congress, State Legislators, their staffs, andothers to visit an Intermediate Care Facility for Persons with Mental Retardation (ICF/MR) in your area. Nearly every state has state and/or private ICFs/MR.  For contact information for an ICFs/MR in your area, please contact Tamie Hopp at This email address is being protected from spambots. You need JavaScript enabled to view it..

 

Successful Community Integration: The Community Resource Center Model

Community Resource Centers (CRCs) are specialty, out-patient clinics situated at existing residential facilities that provide desperately needed quality medical, dental, and other therapeutic services to citizens with mental retardation and developmental disabilities living in communities, who have significant difficulty obtaining these services. CRCs also function as university-based centers of education, training, and research for medical and dental students, residents, externs, fellows, and professionals. There are proven models in several states.

Model State Legislation in Support of Residential Choice

Most states opt, as part of their Medicaid plan, to provide services to some people with intellectual and developmental disabilities (ID/DD) the option to receive services in Medicaid funded and certified Intermediate Care Facility for Persons with Mental Retardation (ICFs/MR). ICF/MR residents are the neediest, most fragile, and most disabled citizens of in your state. ICFs/MR provide cost effective, comfortable and safe living for them. A vast majority of the families and guardians of ICF/MR residents are very satisfied with the care their loved ones receive.

Yet, the very existence of ICFs/MR is threatened in many states. Often, the decision to downsize or close an ICF/MR is made unilaterally by a State’s Governor or his/her designee (hereafter, “State’s Administration”), without any involvement of the state’s legislature.

The decision to downsize or close an ICFs/MR should not be made unilaterally by a State’s Administration. When an ICF/MR is closed, a state’s most fragile citizens are removed from their long-time home and often separated from life-sustaining specialized services. Furthermore, nearly every state has thousands of people waiting for services. The decision to eliminate any service option must not rest in the hands of one governmental entity.

Some states have addressed this concern with legislation. 

Abuse and Neglect in Community Settings

VOR's "Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities," document provides a bibliography of investigative media series, state audits and peer-reviewed research in more than half the states that detail systemic concerns with regard to quality of care in community-based settings for persons with developmental disabilities. Tragedies range from physical, emotional, and financial abuse, neglect and even death. Many of these outcomes are associated with a zest to move to a "community for all" vision people with developmental disabilities without adequately considering the ramifications of separating vulnerable people from specialized care and then doing away with a critical safety net (a/k/a deinstitutionalization). The lessons learned from more than 25 states should cause policymakers and lawmakers to take pause and recognize that a range of needs requires a range of service options.