The idea that one residential model is appropriate for the entire spectrum of intellectual and developmental disability — from college-educated self-advocates to profoundly impaired individuals at risk of detaching their own retinas or bolting into traffic — is patently absurd.
- Amy Lutz
The RIGHTS of all Pennsylvania Citizens to CHOOSE the vital services of an Intermediate Care Facility are threatened by HB #1650 which proposes to close all State Centers and to eliminate these valuable resources for all Pennsylvania citizens for all time.
ADDRESSING THE MYTHS YOU MAY HEAR from the lobbyists for Community Group Home Advocates:
MYTH: Given the choice, no one wants to live in a State Developmental Center or have their family member live in a State Center.
TRUTH: Families are discouraged from making the CHOICE of admittance to the high quality intermediate care facility of a State Developmental Center if they are told about the Centers at all. Many Pennsylvania families desperate for services do not even know the State Centers exist. And families who do know, must battle in court , at a cost of thousands in legal fees,to gain admittance for their loved ones. This makes State Centers out of reach for poor families.
MYTH: Life in community group homes for people with developmental disabilities is superior to institutionalization in every characteristic that can be measured. No valid study has found to the contrary.
TRUTH: There are findings of increased mortality in community settings (Stauss & Kastner, 1996; Strauss, Kastner & Shavelle, 1998; Strauss, Shavelle, Baumeister & Anderson, 1998, see also Taylor, 1998).
There are problems in vocational services and employment in community settings (Stancliffe & Lakin, 1999).
There are problems of Individual Habilitation Plan objectives and behavioral technology in community settings (Stancliffe, Hayden & Lakin, 1999, 2000).
There are problems in access, utilization, and quality in community-based health care (primary, psychiatric and dental care) and personal care for people with developmental disabilities (Knobbe et. al., 1995, Larsson & Larsson, 2001; Walsh & Kastner, 1999).
There are higher rates of verbal abuse and relatively greater exposure to crime in community settings (Emerson et. al., 2000)
In community settings, staff lacked the skill and organization to promote growth and development of developmentally disabled individuals (Felce and Perry, 1997).
States have difficulty in monitoring noninstitutional care because of the dispersed nature of group homes. There is a lack of regulation requirements and a potential impact of low provider reimbursement rates on quality of care. (Lutsky et al., 2000).
MYTH: Institutions are not cost-effective. It is estimated that the cost per individual living in a State Institution can run between $385,000 - $685,000 or more per year! Compared to supporting individuals in the community which may run between $30,000 - $150,000 or less per year!
TRUTH: Are these cost estimates valid or even helpful to policymakers? Do they hold up to scrutiny?
DPW's own cost comparisons always exclude the enormous costs of time, transport, and travel to professionals for necessary services - which institutions have on-site. (DPW also completely ignores travel stress on Developmentally Disabled persons and their staff and families.) Nor do DHS comparisons include the costly local burden to law enforcement, EMS, crisis intervention and emergency hospitalization. Per diem cost always goes up in direct proportion to the number of people in any given state center. (For example in 1988, per diem at the economically maintained Western Center was one half the cost of "community" based equivalent services - Source: Western Center Board of Trustees, with then DPW Secretary John F. White, Jr.)
Comparing Apples to Oranges
Individuals in facilities are older, have more problems in daily living skills and in walking independently (Prouty et al. 2001) and there are more individuals with challenging behaviors in facilities (Borthwick-Duffy, 1994; Bruininks, Olson, Larson & Lakin, 1994). As such they require more complex and Intensive care that would cost more in any setting.
Institutions offer a consistent set of comprehensive services. Community group homes do not offer on-site medical or dental care, these must be sought by providers in the community. Community group homes offer a range of lower cost services that are not comparable to the institutional service package.
Shifting Costs to Other Governmental Entities and Providers
Community costs are shifted to programs other than those administered by a particular MR/DD state agency by the community group home service system. While costs to a particular agency appear to go down, costs to the taxpayer rise dramatically. When group home staff call 911 to handle crises they are unequipped to handle in the community setting, the costs shift to:
Private Doctors, Private Dentists, Private Psychiatrists, Private Care Managers
Arbitrary Freeze on Admissions:
Pennsylvania has had an arbitrary freeze on admissions to State Centers for 20 years. As a result, buildings which could otherwise be filled with many of the over 13,000 Pennsylvania citizens waiting for services, and the maintenance, utilities and overhead of the entire facility are added to each resident of a diminishing population, giving the appearance of a much higher cost per individual than the accurate cost of care for each resident. The State Centers are arbitrarily prevented from implementing the economies of scale for group care and from streamlining operations by this freeze.
Schalock and Fredericks concluded that "large institutions are, in most instances, less expensive than community residences for these challenging populations."
Walsh et. al concluded that "modest differences reported for community services are predominantly the result of lower staffing costs in community settings" and it is likely "that any initial cost benefits claimed for community settings will be difficult to sustain as individuals with more complex needs are served in these settings."
MYTH: Projected capital improvements necessary to keep these antiquated facilities (State Centers) open are cost prohibitive.
TRUTH: Start up and capital costs incurred in setting up the number of group homes necessary to house all the people presently in Centers is cost prohibitive compared to the long-term state ownership of facilities.
Additionally, there are expensive costs and consequences to closing State Centers. Of the 5 Centers and Hospitals closed in Pennsylvania, only 2 were sold (one for only $2 million) and the rest are still costing taxpayers multiple millions of dollars a year to maintain, costly white elephants around the necks of Pennsylvania taxpayers.
MYTH: State Centers have been the sites of countless documented atrocities, including physical abuse, extremely poor medical care and suspicious deaths.
TRUTH: Community Group Homes have been the site of Countless documented atrocities including physical abuse, unexpected deaths and inadequately trained/unsuitable caregivers.
See Concerning Violations of the Developmental Disabilities Assistance and Bill of Rights Act (42 USCS Section 6000 et. seq.) in Pennsylvania - The Death List from Western Center Parents Group, Western Center Board of Trustees
See A Performance Audit of the Commonwealth's Oversight of Group Homes for the Mentally Retarded in Western Pennsylvania
See Suffering in Secret, Chicago Tribune, 2016
See In State Care, 1,200 Deaths and Few Answers, NY Times, 2011
See Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities
MYTH: Help those individuals still segregated and isolated in state centers.
TRUTH: State Center residents have a community of fellowship with their peers and caring, understanding staff and opportunities to socialize and develop friendships at picnics, barbecues, parties, and dances at the campus gymnasium, pool, chapel, cafe, resident halls and grounds.
Friendships made by former Western Center (closed in 2000) residents and families, with one another continue to this day - often the only and most enduring relationships.
It is community group home residents who are isolated and segregated in single houses dispersed in the community.
In an era, when 50% of Americans don't even know their own neighbors, living in a small home can be especially isolating for a developmentally disabled person.
"COMMUNITY INTEGRATION IS A MYTH" says Micki Edelsoh, the founder of the Delaware non-profit Homes for Life. "My homes are in nice neighborhoods - do you think the neighbors are asking the residents over for barbecues or to go out to the movies? Of course not."
See Who Decides Where Autistic Adults Live? The Atlantic, May 26, 2015
MYTH: The Americans with Disabilities Act (ADA) and the Supreme Court Olmstead decision support Deinstitutionalization and require community placements.
TRUTH: The ADA and Olmstead DO NOT Support Deinstitutionalization
"We emphasize that nothing in the Americans with Disabilities Act or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . .Nor is there any federal requirment that community-based treatment be imposed on patients who do not desire it." 119 S. Ct. at 2187
"But we recognize, as well, the States need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities and the States' obligation to administer services with an even hand." 119 S. Ct. at 2185
"Each disabled person is entitled to treatment in the most integrated setting possible for that person - recognizing on a case-by-case basis, that setting may be an institution." 119 S. Ct. at 2189
MYTH: Pennsylvania needs to eliminate all its institutions. Everybody else is.
TRUTH: Wrong. 41 states have kept their institutions. Following is just a few examples from many:
Maryland - has announced plans to keep Holly Center, a facility for intellectual disabilities open.
Officials: Holly Center not closing, will be reimagined.
Illinois - A federal judge ruled in the Illinois League of Advocates for the Developmentally Disabled vs. Illinois Department of Human Services that the State of Illinois must offer individuals with intellectual disabilities the CHOICE of an Intermediate Care Facility (ICF). Illinois decided rather than spend millions to construct a new ICF/IDD that it would be wiser to keep the existing Illinois Murray Center open.
After an 8 month legislatively-directed study, the Wyoming Department of Health (WDH) concluded that the residents of the Wyoming Life Resource Center (WLRC) should not be forced to transfer to smaller programs. "The WDH considers the WLRC to function as a SAFETY NET in Wyoming. Lawmakers earlier this year asked the health department to study the most effective way to care for the center's residents. Most of the people living at the Lander facility have severe developmental disabilities or acquired brain injuries that require intensive support. many also exhibit behavioral problems."
People really do deserve the best care that suits them. I don't see how that's even debatable.
-University of Pennsylvania Ethics Professor Dominic Sisti