People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities

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In 1965, then-Senator Robert Kennedy toured the Willowbrook institution in New York State and offered this grim description of the individuals residing in the overcrowded facility: “[They are] living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.”[i]

The atrocities of Willowbrook ushered in a generation of advocates, nonprofit organizations, providers, and professionals who successfully pushed for massive reform, beginning in 1971 with the development of Medicaid Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR), later renamed as ICFs for Individuals with Intellectual Disabilities (ICFs/IID).

Families and advocates alike applauded this infusion of federal funding, licensing, and oversight for a program specifically designed to meet the needs of individuals with intellectual and developmental disabilities (I/DD).

Still, as the ICF/IID program grew, so did calls for housing alternatives. Critics emerged, claiming that the ICF/IID federal standards of care promoted a non-individualized, inefficient model of care, and, due to federal financing incentives, discouraged states from developing alternate service options.[ii] In 1981, Congress responded by providing for small (4-15 person) ICFs/IID and a Medicaid Home and Community-Based Services (HCBS) waiver, to allow states to “waive” certain ICF/IID requirements.

These early reforms were quite properly motivated by the need for a system of care and supports that responded to the very individualized and diverse needs of the entire population of people with I/DD. These reforms, however, also set the stage for decades of ongoing deinstitutionalization, resulting in the elimination of specialized housing, employment and education options for people with I/DD, leaving some to question the price of “progress.”

The Pendulum Swings

Even though initial reforms were motivated by a lack of service options (an over-reliance on the ICF/IID program), it was not long before efforts to “rebalance” our system of care shifted from the expansion of options to the dramatic reduction of ICFs/IID and other specialized options.

In 1999, the Supreme Court handed down its landmark Olmstead v. L.C. decision, which should have settled the deinstitutionalization debate. The Court expressly cautioned against forced deinstitutionalization, the “termination of institutional settings for persons unable to handle or benefit from community settings,”[iii] finding instead that the Americans with Disabilities Act (ADA) only requires community placement when an individual’s treatment professionals determine community placement is appropriate, such placement is not opposed by the individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with disabilities.[iv]

However, masterful messaging by nonprofit organizations and federally funded lawyers with mission statements and funding aimed squarely at eliminating all “institutional” options quickly (and incorrectly) characterized Olmstead as a deinstitutionalization “mandate” requiring “community integration for everyone.”[v]   While deinstitutionalization proponents had successfully closed many ICF/IID homes by 1999, the time of the Olmstead decision, the decision has only further fueled their efforts in the years that followed.

Has the Pendulum Swung too Far?

According to Samuel Bagenstos, former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases, the population of state institutions for I/DD now stands at approximately 16 percent of its peak.[vi]

The exit of ICFs/IID from the service landscape created a vacuum that lured nonprofit and for-provider providers into the business of human services. Between 1977 and 2010, the number of residential settings that served people with I/DD increased by a remarkable 1,598 percent, with most of these new settings being small and privately operated. In 2010, non-state agencies served 98.5 percent of people living in places with 6 or fewer residents. The number of home and community-based services recipients outpaced residents receiving specialized Medicaid licensed ICFs/IID by 676.1%, while the number of people receiving ICFs/IID care decreased by 63 percent.[vii]

As early as 1993, then-U.S. Rep. Ron Wyden (D-OR) pointed to the problems created by an unchecked expansion of providers rushing in to fill a need. “Increasingly, millions of Americans with these life-long handicaps are at risk from poor quality of care, questionable and even criminal management practices by service providers, and lackluster monitoring by public health and welfare agencies,” wrote Wyden in a March 22, 1993 report in his capacity as Chairman of the Subcommittee on Regulation, Business Opportunities, and Technology of the U.S House Committee on Small Business.[viii]

In 2000, the American Prospect magazine reported similar problems in its article, “Neglect for Sale,” which investigated a disturbing trend of large for-profit corporate providers capitalizing on the then-$22 billion (now more than $40.5 billion) in government spending on services for people with disabilities, turning care for individuals with I/DD “into a major growth industry.”[ix]

“It should not be surprising,” Bagenstos wrote, “that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.”[x] State officials were not keen on investing in the development of adequate community services after being told closing ICFs/IID would save them money, resulting in inadequate funding and compromised care. Bagenstos acknowledges adequate investment in community services, especially due to the cost of quality staffing, will meet or exceed the cost of ICF/IID care.[xi]

These outcomes are made all the more tragic due to their predictability. The failed deinstitutionalization of the mentally ill should have been an important lesson learned. “As events played out, large state institutions [for the mentally ill] were indeed shut down in the 1970s, but the promise of high-quality community-based care collided with the fiscal cutbacks of the 1980s,” wrote Eyal Press, author of “Neglect for Sale.”[xii]   Homelessness, incarceration and violence raise questions about “whether society’s concern for the constitutional rights of people with mental illness has led to their abandonment.”[xiii]

Predictable Tragedies as the Price of Progress

Even if some license is afforded to “hope”—a “hope” that history would not repeat itself when deinstitutionalizing individuals with I/DD—there is no excuse for continuing down a path that has in its wake repeated, widely reported tragedies in small settings for people with I/DD.

More than 150 media reports in more than 30 states since 1997 reveal systemic concerns in small settings for people with I/DD, including deaths, abuse, neglect, and financial malfeasance. In November 2011, the New York Times wrote that more than 1,200 people with I/DD in the past decade have died in group homes due to “unnatural or unknown causes.”[xiv] U.S. Senator Chris Murphy (D-CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.” [xv]

 

Georgia offers a particularly poignant example of the extremes by which “success” is defined by proponents of forced deinstitutionalization. An October 2012 federal settlement calls for the transition of its I/DD residents from ICFs/IID to community settings. In 2013, the state’s own reports showed that 10 percent (40 people) of those transferred to community settings in 2013 had died.[xvi]   Yet, United Cerebral Palsy, a national nonprofit organization, ranked Georgia fourth in the nation for its successful community inclusion of people with I/DD.[xvii]

Other symptoms of failed deinstitutionalization are less obvious, but no less harmful to people with I/DD. Waiting lists for I/DD services now number nearly 317,000 people,[xviii] emergency rooms have become de facto urgent care clinics for people with I/DD, and correctional facilities are replacement treatment centers for some individuals who experience both mental illness and developmental disabilities.

Conclusion: Why does this continue?

The original goal of deinstitutionalization, to provide opportunity to individuals not appropriately institutionalized and “rebalance” the system, was shared by advocates.

We have passed the 50 percent mark in most states—that point of “balance” when half the Medicaid funding for people with I/DD was spent on HCBS options and half on facility-based (“institutional”) options. In fact, the United Cerebral Palsy reported that “38 states now meet the 80/80 Community standard, which means that at least 80 percent of all individuals with ID/DD are served in the community and 80 percent of all resources spent on those with ID/DD are for community support.”[xix]

As advocates marched toward “balance,” and in most states exceed it, tragedies followed and seem to be more widespread. These tragedies, which should have been a wakeup call, have done nothing to stem aggressive deinstitutionalization. State-level fiscal conservatives still loathe spending money, yet safely serving people with complex needs requires adequate funding. Proponents for “community integration for everyone”—advocates, nonprofit organizations, federal agencies and providers—have a lot at stake, past and present. To change paths now is to admit failure and risk future funding.

Lost in this debate is concern for the individual. Person-centered planning, which is held up as the ideal by advocates, nonprofit organizations, and government alike, is short-changed by system-change advocacy to eliminate specialized care options for those who need it. Instead, we must figure out ways to meet individual needs versus wholesale approaches to providing care that end up being as bad as or worse than having an institution as the only option.

The legal framework is in place to support individualized care and choice. Advocates must set aside efforts to eliminate options of care and work together to expand options. This begins with a commitment to serving each individual: true person-centered planning.


[i]Willowbrook State School, Wikipedia (July 7, 2014) citing Staff (September 10, 1965). “Excerpts From Statement by Kennedy.” The New York Times. (Retrieved September 26, 2010).

[ii] Id.

[iii]Olmstead v. L.C., 527 U.S. 581, 601-602 (1999)

[iv] Id. at 587

[v] U.S. Department of Justice, “Olmstead: Community Integration for Everyone

[vi] Samuel R. Bagenstos, The Past and Future of Deinstitutionalization Litigation, 34 Cardoza L. Rev. 1, 29 (2012); see also at 7: “Since that time, states have closed hundreds of their institutions, and they have downsized others.” Note: The decline in the population of psychiatric hospitals for individuals with mental illness is even more dramatic, with current resident populations at just 9% of its highest numbers.

[vii] Larson, S.A., Ryan, A., Salmi, P., Smith, D., and A. Wuorio (2012). Residential Services for Persons with Developmental  Disabilities: Statues and trends through 2010. Minneapolis: University of Minnesota,

Research and Training Center on Community Living, Institute on Community Integration.

[viii] United States. (1993). Residential programs for the mentally retarded: Out of sight, out of mind?: Poor Quality Care, Waste and Theft of Millions In Public Reimbursement : Dangerously Inadequate Oversight By Federal, State and Local Authorities. Washington, DC: U.S. House of Representatives, Committee on Small Business, Subcommittee on Regulation, Business Opportunities, and Technology.

[ix] “Neglect for Sale,” The American Prospect (November 30, 2000).

[x] Bagenstos, supra at note vi, at 21.

[xi] Id. at 43; compare, Kevin Walsh, et al, Cost Comparisons of Community and Institutional Residential Settings: Historical Review of Selected Research, Mental Retardation, Vol. 41, No. 2: 103-122 (April 2003)(“Findings do not support the unqualified position that community settings are less expensive than are institutions and suggest that staffing issues play a major role in any cost differences that are identified).

[xii] Id.

[xiii] “Behind the yellow door, a man’s mental illness worsens,” Washington Post (June 28, 2014).

[xiv] “Abused and Used: In State Care, 1,200 Deaths and Few Answers,” New York Times (November 6, 2011)

[xv] Murphy, Christopher S., U.S. Senate. Letter to U.S. Department of Health and Human Services Office of Inspector General investigation (March 4, 2013)

[xvi] “Transfers of disabled patients still a problem,” Georgia Health News (June 23, 2014); see also, “Mentally disabled suffer in moves from Georgia institutions,” Atlanta Journal-Constitution (June 21, 2014); see also “Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities,” VOR (revised April 2014).

[xvii]The Case for Inclusion 2014, United Cerebral Palsy (February 2014)

[xviii] Id.

[xix] Id.

 

  • Alan Fortney

    I wish more of our political leaders would read (and understand) this issue!!! People should not have to suffer due to ideas of mass closure!

  • Alan Fortney

    Thank you for running this article and raising awareness to this issue!!! I applaud you!!!

  • Laurie Stengler

    Excellent article!!!!!!!!! I will be forwarding this to my legislators. Thank you.

  • David Hart

    Very well written and insightful article. When does the madness stop. The de-institutionalization advocates seem to have forgotten one important thing…what happens to the individual after being evicted from their home(ICF/IID) and palced in an inferior setting? How many more people with ID/DD need to die till these ideologs and government agencies realize their mistakes?
    Our political leaders have been sold a “bill of goods” from the so called non-profit companies who represent most of the community options. Quality of care for most is not their priority, thier priorty is more contracts or in this case more bodies and to get away with providing the least amount of care possible to a very vunerable population.

  • Sybil Finken

    Thank you so much for allowing Tamie Hopp to write this article for NPQ. As a wise man once said, “It is as wrong for No-one to live in an institution as it is for Everyone to live in an institution.” We must offer and support ALL, high-quality levels of care for people with I/DD.

  • Connie Howard

    Well said Tami. I am so proud to have you as an advocate for my son and the untold number of others who are born with Disabilities. I applaud you for you bringing this very important issue to the forefront. the general public and our elected officials can get a glimpse of the devastating effects it has and will continue to have on this very fragile population.

  • Keenan Wellar

    The call for true person-centred planning (rather than planning that is actually based on choices preferred by systems and agencies that are supposed to be helping deliver an included life in the community but are instead streaming people into what works best for their own financial and operational needs) is wonderful, but the rest of this article is very confusing to me.

    Group homes are simply small institutions, that is why they have the same types of dangers/outcomes as mass institutions. That is why none of us who work in this field would actually accept for ourselves the conditions of living in a group home, or spending our days in a day program or sheltered workshop. That is the source of the 50 years or so of advocacy to help people have a life in the community, not a life in systems.

    Safety comes from being a real part of communities with unpaid reciprocal relationships with people who care about you, and it’s part of the role of the paid network of supports to help make that happen. It’s about having a place to live where the key to the front door belongs to YOU not to an agency. It’s about having a real job and/or other real things to do alongside other people who are not exclusively people with the same labels as you have.

    There is confusion about the intended OUTCOME of supports and services for people with intellectual disabilities. It’s not about one “setting” or another. It’s about getting the support required to have a real life.

    I invite readers to visit http://liveworkplay.ca/socialchange/ and http://presentations.liveworkplay.ca to learn about concepts like social capital that can help inform this discussion in ways that are completely and inexplicably missing from this article. To say that we should reinvigorate segregated systems to deal with the failure to support success in the community is a frightening idea. Why not look instead at how success is being achieved with community-based solutions and make sure that this is broadly replicated?

    I’ve just come back from attending APSE in California and The Summit in Wenatchee (Washington State) and this is the current powerful trend in the sector – person-centred community-based support works, but we need to learn HOW to deliver it in order to successfully shift from what we know (how to run institutional settings) to what we don’t know (how to help people have a life and probably more importantly how to help the community to be welcoming and inclusive).

    We do need to take segregation off the menu. But we also need to understand how to go about it. Failure to do that job well does not mean people with intellectual disabilities should be re-condemned to an institutional lifestyle. It’s not their mistake.

  • Jan Fortney

    This is a very well done article for the history of the deinstitutional issue. Thank you for writing this. I will be sharing this with my Legislators before our state’s fall session.
    Thanks again!

  • Don Putnam

    I hope the NPQ link to this article remains true and active for a long, long time. I plan to share the article link with a broad list of friends, family, and legislators. Seldom do I read such an eloquently written article that honestly portrays both history and the current tragedy in such vivid and accurate language. My congratulations to the author and to NPQ for publishing it.

  • Hugo Dwyer

    Thank you for publishing this article. It is one of the most comprehensive essays I have read on this subject.
    One more thing to note is that there are major differences between ICF and Non-ICF homes in terms of inspection, safety, and reporting of incidents. The ICF/IID homes are held to a much higher standard. While incidents in ICF’s are to be reported to government oversight agencies, many of the incidents that happen in group homes are reported only to the company/organization that operates the home, leaving it to their discretion as to whether the incident merits reporting to other agencies or the local police.
    The trend in building new group homes and community settings by private providers has been to build non-ICF facilities, thus cutting costs and avoiding these higher standards of safety and care.

  • JRB

    The race to close specialized programs, especially for people with severe disabilities, is truly bizarre. Federally-funded advocates claiming to represent people with disabilities are the biggest cheerleaders for states looking for any and all ways to reduce their responsibility to serve people with disabilities. When people with disabilities and their families don’t agree, they are ignored or ridiculed for their opinions and choices. This article goes a long way in explaining the importance of maintaining a wide range of residential and service options for people with disabilities, including institutional care for those who need it.

  • Bob Brown

    Finally an intelligent discussion on the issue. Well done. Thank you for not buying into the current pablum of the Gruppendenken!