Profoundly disabled people progress faster and better, maximizing their potential, in small community-based settings.
By FRIMET ROTH
Behind the spin and hoopla, the celebrities and the gala fund-raisers, lies the truth about Aleh Negev - a newly-built village in the Negev that, its supporters say, will provide an alternative to state-run hospitals for hundreds of mentally disabled adults.
In reality, this behemoth complex is setting back the status of Israel's disabled citizens by decades.
Aleh's promoters made this project irresistible to the government, snaring NIS 46.5 million and 100 dunams of public land. The bait included generating 500 jobs to boost the ailing Negev economy; establishing lucrative on-site businesses including a coffee company; a for-profit paramedical therapies center; and opportunities for local high-school students to earn matriculation points by volunteering.
Aleh's public relations people refer to it euphemistically as a state-of-the-art hospital equipped with dormitories, an all-encompassing "village," a hospice.
They studiously avoid the accurate name: institution.
MANY WILL have forgotten what the Israeli Supreme Court declared in 1996: "The disabled person enjoys equal rights. He does not exist outside society or on its periphery. He is a regular member of the society in which he lives. The goal of arrangements is not to improve his lot in isolation, but rather to integrate him in the regular fabric of society."
Two years after that landmark determination, the Knesset enacted the Equal Rights for Disabled Persons Law with this goal: "To protect the dignity and independence of the disabled person... and to anchor his right to participate equally and actively in society in every area of life…"
Nonetheless, thousands of Israel's disabled remain mired today in enormous institutions, isolated from the community. By the Sixties, studies had shown that the disabled progress faster and better, maximizing their potential, in small rather than large settings. The Western world reacted to these findings by shuttering its institutions for the disabled, transferring them to small settings and legislating in favor of this new policy.
It has sought to enable all citizens with disabilities, even those profoundly affected, to live with their families or in small community residences, enjoying as normative a lifestyle as possible.
AS THE mother of a blind and profoundly disabled 11-year old daughter, I know that even such children appreciate their family's loving presence. The way this is expressed may be hard to discern. But search and you will find it: a soft utterance, a sigh, a near-smile, the movement of a finger.
In truth, it should not be necessary to debate whether the disabled enjoy community-based living. Do we require such evidence from other segments of the population?
Institutions also fail when assessed in dollars-and-cents terms. There is compelling evidence that they cost far more than any other option. An impressive article critiquing the then-proposed Aleh Negev project was published in 2003 by Sylvia Tessler-Lozowick from Bizchut, the Center for the Civil Rights of Persons with Disabilities. Writing in Panim, the journal of the Teachers' Union, she elucidated the project's errors at a point when the state had already granted the land and pledged some NIS 40 million to Aleh Negev but before construction had started.
Entitled "Prison of Gold," the article points out that Israel's progressive court decision and laws are rendered impotent by government bodies. The Department of Care for the Mentally Retarded, in particular, generally offers the families of disabled adults no option other than institutional living. Parents remain unaware that their children are legally entitled to small-residential living arrangements in the community.
IN MY experience, professionals, including neurologists, frequently urge parents to institutionalize severely-affected children and babies. Moreover, precious little assistance is forthcoming from the government in the form of paramedical therapies, equipment or respite care for parents whose disabled children live at home.
Even the minimal government aid available can entail daunting bureaucratic challenges. Unavoidably, parents expend their physical and emotional reserves on day-to-day living, often becoming financially-impaired and depressed. Eventually, seeing no alternative, some reluctantly institutionalize their children.
Bizchut has campaigned for years against Israel's pro-institutionalization policies, encountering resistance at every turn. Tessler-Lozowick says that when she lobbies politicians and professionals, they ask her why Bizchut hasn't aroused widespread parental support.
But this is unfair. Emasculated by an unsympathetic system, even the most idealistic of parents cannot be burdened with spearheading protests. The demand for change must come from the general public, from citizens who abhor prejudice and discrimination.
Huge institutions only entrench the current widespread indifference to, or revulsion from, severely disabled people. Isolating them from the non-disabled in self-contained "villages" is not the answer. Concern solely for their therapeutic needs is not the answer. Pity is not the answer. People with disabilities are more than just the sum total of their pathologies.
It is equally unfair to expect the public to be radically transformed overnight. The antiquated myths about the disabled which originally underpinned institutionalization are still with us.
Progress requires that we integrate the disabled into our neighborhoods. Their visibility on our streets, in the local grocery, riding city buses will crumble the walls of myth and prejudice.
This is a process that I have witnessed in my own community. Residents of Ramot in Jerusalem evolved from opponents of the construction in their midst of Keren Or, a school for the blind and multiply-handicapped, into an embracing neighbor.
Volunteers, employees and financial supporters of the school have materialized from Ramot's ranks. And with the adult students housed in many scattered apartments, the entire neighborhood is now exposed to a sector that was once out of sight and mind.
Change demands a re-vamping of government priorities:
Needed are greater financial and respite support for parents raising their children at home.
Establishing additional small, in-community residences for children whose families are unable to care for them or for whom adoptive or foster families are unavailable.
Ditto for adults with disabilities. Akim-Jerusalem, for instance, serving persons with developmental disorders, operates 3 hostels and 15 apartments and group homes for a total of 160 residents. All are situated in residential areas and are models for replication.
Close those large institutions, starting with Aleh-Jerusalem's much-touted facility for infants only a few months old. Research into institutionalized normal babies found that multiple care-givers and the absence of secure attachments resulted in delayed milestones. Babies already struggling with developmental disabilities are affected even worse.
By ignoring the knowledge that advanced societies have amassed about disabilities, Israel is cheating its own disabled and their families. We must right this tragic wrong.
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