The stigma of “congregate
settings” for those with disabilities stems from a troubling history,
but we shouldn’t be creating barriers to affordable housing solutions
that offer access to recreation, employment, and real relationships for
people with and without disabilities. What constitutes as “home and
community” shouldn’t be defined by policymakers, but by people with I/DD who have the right to live in a home and community of their choice.... Desiree Kameka
From the Autism Housing Network:
Study: 50% of Americans don’t recall the name of “that lady across the street”
By Desiree Kameka on August 15, 2014
By now, many of you have probably seen Brian Bethun’s article The End of Neighbors or coverage by The Today Show, TIME Magazine, or AOL that reported 50% of all Americans do not even know their neighbors’ names. Bethun illuminates the notion that we, as a society, need to foster more human connections.
It is no surprise to those of us in the disability advocacy community that neighborhoods today are not cultivating community relationships let alone integrating those who have intellectual or developmental disabilities (I/DD). For years, organizations, like those in the Coalition for Community Choice (CCC), have been working to convince policymakers that being part of a meaningful community must extend further than simply being located in a neurotypical residential neighborhood.
People with I/DD who are living in their family homes or group homes often have little social capital because they lack employment options, transportation, and opportunities to develop real unpaid friendships with their neighbors. I may have a conversation with the gentleman who bags my groceries every week, but I don’t feel it’s appropriate to invite him to my apartment for dinner as he takes my groceries to the car. We first need to build a relationship … but how?
Grass roots efforts across the nation are trying to create public-private partnerships and develop “intentional communities” that would offer urgently needed housing options to people with and without disabilities. By fostering integration and relational community, these spaces may include planned recreational opportunities, social enterprise employment options, and community amenities that would benefit the local area. Counties, faith communities, and local non-profits have stepped in to support these efforts financially. Designed and informed by local individuals with I/DD, these community projects relieve states of a financial burden. While discrimination and NIMBY (Not In My Back Yard) are struggles facing these supportive housing opportunities, government policy creates barriers, as well.
Susan Pinker, author of the Village Effect, says that “face-to-face contact matters: tight bonds of friendship and love heal us, help children learn, extend our lives and make us happy.” The CoHousing movement, Fellowship for Intentional Communities, Agrihoods, and other “Live-Work-Play” planned communities are emerging for neurotypicals who are fighting against the effects of isolation. Intentionally neurodiverse communities aim to foster supportive environments that value and nurture relationships. You will undoubtedly learn your neighbors’ names in these friendly neighborhoods.
The stigma of “congregate settings” for those with disabilities stems from a troubling history, but we shouldn’t be creating barriers to affordable housing solutions that offer access to recreation, employment, and real relationships for people with and without disabilities. What constitutes as “home and community” shouldn’t be defined by policymakers, but by people with I/DD who have the right to live in a home and community of their choice.
If you would like to connect with others and be an advocate for increased supportive housing choices in your state, Take action now and make sure your state ensures people with I/DD will have a broad range of housing options for the future!
Subscribe and Connect
Sign up for our E-newsletter and follow us on our social pages!
This is from an editorial in the Miami Herald, "Floridians with developmental disabilities need more help " by the President of the Autism Society of America Ven Sequenzia, Jr., 9/25/14.
Rick Scott, the Governor of Florida, claims to be helping people with DD by increasing the state budget to reduce the "critical needs" waiting list for services. The truth is, according to Sequenzia, that:
- "The Medicaid Waiver budget for 2013-14 was $915 million, or $46 million below the 2008 budget. It was actually the third lowest budget in the last six years.
- "This while the waiting list grew from 15,648 in Sept. 2007 to 21,140 in June 2014.
- "Now the final straw. The Agency for Persons with Disabilities (APD) returned approximately $80 million 'unspent' from this fiscal year to the state treasury. Yes, you read that correctly. Gov. Scott not only reduced spending, the agency returned unspent money, while 21,000 people are languishing on a waiting list."
Furthermore, to add insult to injury, "[The Governor] allows the wait list to increase by almost 5,000 people in 2014, all the while taking thousands of families to hearings to deny needed services based on the iBudget rules and an algorithm that the District Court of Appeals threw out as illegal. He included $4.5 million dollars in the APD budget for legal fees to fight families, and those funds go to the law firm that his chief of staff is associated with."
Floridians should be fuming.
Heights Manor in Columbia Heights, Minnesota, provides subsidized housing to low-income seniors. According to an article in the Minneapolis Star Tribune, more and more people with disabilities are being moved out of congregate residences (group homes and institutions) and into public housing projects, leading to clashes with elderly residents. The article , "Influx of disabled residents leads to clashes in senior housing" by Chris Serres, 9/8/14, says that "Heights Manor, much like subsidized senior housing across Minnesota, is being pulled apart by a recent influx of younger people with disabilities, who are being forced by a tight rental market and a shortage of affordable apartments to live with the elderly. Statewide, the percentage of people with disabilities in public housing increased 24 percent between 2009 and 2012, the last year for which data are available, according to the U.S. Department of Housing and Urban Development."
Furthermore, "Disability advocates say such tensions are likely to intensify as the state moves forward with ambitious plans to further desegregate housing for people with disabilities. Under pressure from the federal courts, which recently admonished Minnesota for not moving quickly enough to integrate people into the community, state and local authorities are preparing to move thousands of people with mental and physical disabilities from group homes and other institutional settings to individual apartments."
Some of the incidents that have occurred at Heights Manor suggest that some of the new residents may have untreated mental illness or other mental disabilities: "One of the new residents would walk around the building while jabbing at the air with her hands, saying she was 'chasing away the devil,' residents said. Another new resident, a young man, was seen smoking marijuana on the third-floor balcony and playing rap music late at night. When elderly residents urged him to turn down the music, he screamed at them to leave him alone, Hall said."…"On July 4th, a half-dozen local police officers descended on Heights Manor after a resident in a wheelchair pointed a BB gun at a resident and then locked himself in his second-floor room. After kicking in the man’s door, police discovered a semi-automatic pistol as well as a rack with knives and a revolver mounted on a display in his bedroom, according to a police report."
Many of the senior residents are frightened and avoid places they used to congregate to play cards and socialize.
I can empathize with both groups in the housing projects. It is troubling that the anonymous state and local officials who came up with this idea did not foresee the problems in advance or did not care. The senior residents complain about disorderly conduct, unsafe conditions, and noise and disabled residents complain about discrimination by the elderly. The motivation for moving disabled people out of congregate care is supposedly for them to be integrated into the greater community. Instead, they are herded into public housing projects with other low income people, apparently not to integrate with the community, but to lessen the costs to taxpayers and to relieve government of the responsibility to provide humane and appropriate treatment.
*****************
Is accommodation of seniors in congregate settings age discrimination in housing? Not according to the federal Fair Housing Act.
A Department of Housing and Urban Development (HUD) website on the Senior Housing Exemption states the following:
"Although the FHAct was amended in 1988 to prohibit discrimination on the basis of disability and familial status, Congress intended to preserve housing specifically designed to meet the needs of senior residents. Housing that meets the FHAct definition of housing for older persons is exempt from the law's familial status requirements, provided that:
- HUD has determined that the dwelling is specifically designed for and occupied by elderly persons under a Federal, State or local government program or
- It is occupied solely by persons who are 62 or older or
- It houses at least one person who is 55 or older in at least 80 percent of the occupied units, and adheres to a policy that demonstrates intent to house persons who are 55 or older.
"Therefore, housing that satisfies the legal definition of senior housing or housing for older persons described above, can legally exclude families with children."
The parents of an autistic girl have reached a settlement with the girl's school district, Walled Lake Schools in Oakland County, Michigan (northwest of Detroit), in a lawsuit that involved accusations of rape and abuse against the parents that were communicated through facilitated communication (FC, or facilitated typing, as it is sometimes called).
Facilitated communication is a largely discredited communication technique, especially when it has been offered as evidence in court cases, where a person who is unable to talk because of severe cognitive disabilities types messages through a facilitator who usually guides or holds the arm of the disabled person. The communications have been shown to be more likely those of the facilitator than the disabled person.
An article in the Detroit Free Press, "Walled Lake Schools to pay parents in dismissed rape case" by John Wisely, 9/16/14, says that the parents, Julian and Thal Wendrow, settled a lawsuit against the school district for $1.1 million, just three weeks before the suit was scheduled to go to trial:
"West Bloomfield police arrested the Wendrows in December 2007 after a school aide helped their autistic daughter, who can't speak, type a statement accusing her father of repeated rapes and her mother of ignoring the attacks. The statement was written using facilitated communication, where the aide guides the child's fingers over a keyboard.
"The method has never been approved for courtroom use and critics insist the aide was the true author of the writings, either consciously or subconciously."
The article further states that,
"The Wendrows claim their lives have been permanently damaged by the criminal case. Julian Wendrow spent 80 days in the Oakland County Jail before prosecutors dropped the charges for a lack of evidence.
"Thal Wendrow spent five days in jail before being released with an electronic monitoring device attached to her leg.
"When they were arrested, their daughter, then 14, was taken into protective custody. The couple's son, then 13, was interrogated by a detective who tried to get him to confirm the rape accusations by saying police had videotape of his father raping his sister."
The family has collected $3.75 million so far in settlements with the school district, the West Bloomfield Police, and the Michigan Department of Human services. A trial against the Oakland County Prosecutor's Office is set to begin on October 8, 2014.
Here are more troubling facts about this case:
- There was no physical evidence that a rape had taken place.
- The prosecution and the judge in the case accepted the girl's statements through FC as valid even though she functioned at the level of a two-year-old and did not talk. Even the prosecution's witness called to defend FC as a valid form of communication, did not believe the girl's charges and had warned the prosecution that her statements should be validated independently.
- The girl's brother was interviewed by the police without notifying his guardian and without a parent or attorney present.
- The primary objection to FC is that the communication is usually that of the facilitator and not the person who is being facilitated. The court still treated the girl's statements as evidence of a crime, reliable enough to have the father thrown in jail for 80 days.The case was dismissed after the girl was unable to answer even simple questions when her facilitator could not hear the questions being asked.
- When the case was dismissed, the prosecution did not admit that they were wrong. Instead they said that the girl refused to testify because she was afraid.
Read more about Facilitated Communication and the case against the parents.
This is an article that was written by Tamie Hopp, the Director of Government Relations & Advocacy for VOR, the only national organization that supports a full range of residential and service options for people with intellectual and developmental disabilities. This includes support for institutional care in Medicaid-funded Intermediate Care Facilities as well as group homes, home and community based services, and care provided in the home of a family member or friend. The article, "People as Pendulums...", gives a history of reforms to the system of care for people with disabilities, along with warnings that we have gone too far in closing institutions and other forms of congregate care (serving people with disabilities in groups of more than three).
********************************************
People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities
Written by Tamie Hopp
Created on Wednesday, 16 July 2014 14:0 for the Nonprofit Quarterly
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-profit 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 wake-up 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.
Tamie Hopp is the Director of Government Relations & Advocacy with VOR, a national nonprofit organization advocating for high quality care and human rights for people with intellectual and developmental disabilities. For more information, visit www.vor.net.
See this article on-line to read the footnotes.
See also VOR's documentation of abuse and neglect in small settings.
