“People First” puts money first

April 17, 2014

Don Lash explains how cuts in New York will hurt the developmentally disabled.

NEW YORK state has embarked on the biggest change in a generation in services for people with developmental disabilities. Billed as a "reform," the so-called "People First Waiver" will dismantle the existing community-based service system and replace it with a managed-care model designed to lower the cost of services to the state while simultaneously allowing managed-care profiteers into the system.

As imperfect and incomplete as the existing system is, it was created through the activism of people with developmental disabilities and their families. The move to managed care threatens to set back the struggle for disability rights and damage the lives of countless individuals and families.

The term "developmental disability" covers a range of specific disability labels. Of the 85,000 people served by New York's Office for People With Developmental Disabilities (OPWDD), almost three-quarters are classified as having an intellectual disability (formerly referred to as "mental retardation"). Nearly 10 percent are classified with autism spectrum disorder, and those remaining have a variety of classifications, including cerebral palsy, epilepsy/seizure disorder or some other impairment. About 1 in 20 is considered "medically frail," requiring extensive, specialized services.

Residents at Willowbrook State School
Residents at Willowbrook State School


THE STORY of how people with developmental disabilities have been viewed and treated goes back to the dawn of European civilization. Aristotle said, "Let there be a law that no deformed child shall live." In ancient Rome, children under three who were thought likely to be a burden on society were thrown into the Tiber River. Christianity waffled between St. Paul's appeal for kindness for those he called the "feeble-minded" and the fear-driven persecution of the disabled as witches or the objects of demonic possession.

It wasn't until well into the 18th century Enlightenment that society began to grapple with the notion that children with developmental disabilities were people who needed education and support to develop and live as functioning, thinking human beings. With 19th century industrialization, however, the idea of developing institutions that could sort and classify people with disabilities and provide for their care and training became dominant. In a way, the institutions were akin to factories--scaled and standardized for efficiency.

While there were sometimes charitable impulses behind these efforts, the dark side of rationalized "care" emerged with the belief in "racial purification" and the eugenics movement--the idea that people considered defective could be contained, prevented from reproducing and eventually eliminated. Mandatory institutionalization and forced sterilization were the results, and they were legitimized by the U.S. Supreme Court in the notorious Buck v. Bell decision in 1927. Saying "three generations of imbeciles are enough," Oliver Wendell Holmes spoke for the court in permitting the sterilization of a woman thought to be "mentally defective."

The eugenics movement reached is logical end point in Nazi Germany, which used U.S. eugenics laws as a model for its own, and added the horror of extermination of people with disabilities to its efforts to create a master race. Eugenics became discredited, but warehousing of people with disabilities continued, in institutions like New York's Willowbrook State School on Staten Island.

At Willowbrook, children, adolescents and adults with developmental disabilities were crowded in with inadequate care and no educational services to speak of. Hepatitis A outbreaks repeatedly occurred in the 1960s, so the state took the opportunity to use the population to test out experimental treatments, but didn't change the conditions that gave rise to the outbreaks. Some residents were deliberately exposed to provide enough test subjects.

When residents and family members spoke out and sparked investigative journalists to expose the deplorable conditions in the early 1970s, Willowbrook became a symbol of dehumanizing warehousing, and more than a decade of class action litigation and gradual deinstitutionalization followed.

Community services were developed as a response to the closure of the institutions. Deinstitutionalization did not mean the end of struggle, however. It simply became a fight for appropriate educational services, quality housing, and support and services for people with developmental disabilities and their families in the community.

Activists had to fight for adequate funding, and the temptation to squeeze the system to "do more with less" intensified as people with developmental disabilities began to live longer in the community, and as the rate of diagnosis for disabilities like autism increased. In 2011, the state served 57 percent more people than in 1975, and 95 percent were in the community, compared to less than 25 percent in 1975.

The Willowbook horrors had resulted in quality standards for facilities and services, so the state was unable to provide community residential services on the cheap. Cost containment could occur only by creating barriers to service, increasing the burden on families, and limiting service to rigid, segregated, congregate care settings.

The need for advocacy and activism has been constant. Individuals and families have not only advocated for themselves, but for the direct care workers who provide them with necessary support. The state has been forced to fund periodic--although inadequate--cost-of-living adjustments for direct care workers largely as a result of lobbying by disability advocacy organizations.


THE INCOMPLETE victories that have occurred are now jeopardized by a "reform" agenda being pushed aggressively by Gov. Andrew Cuomo, a Democrat whose father was governor for much of the post-Willowbrook period when the current system developed. The current Gov. Cuomo is determined to follow a national trend to convert the system to a managed-care model. In 2011, OPWDD applied for a waiver of provisions of the federal Medicaid law to make the conversion.

Under the "People First Waiver" program, New York state will move from a "fee-for-service" model, with services being provided according to a rate charged per unit of service (daily, hourly, etc.). Instead, people will have to receive service from a network called a Developmental Disabilities Individual Support and Care Coordination Organization (DISCO), which will receive a flat capitation rate (a per member per month payment) regardless of service needs. A DISCO must be non-profit, but the network is open to profit-making entities.

Currently, an individual or family can choose a community-based service coordinator, and the service coordinator helps them establish eligibility for services and locate a provider offering the most appropriate service. Under the waiver, service coordination will be taken over by DISCOs, and their role will simply be to steer people within the network. The likelihood is that service coordinators will serve the DISCO network, rather than the individual or family.

Service coordinators now see their role as being to match individuals with the most appropriate services, and the system allows for community-based organizations providing service coordination to take language and culture into account in helping the individual select providers. A service coordinator working for a DISCO, however, will feel the pressure to minimize service, because the DISCO will have to fund all services from the capitated payment. They will also feel pressure to allocate clients wherever the network wants them.

The state maintains that its quality assurance safeguards will ensure that needs are met, but it's hard to credit these assertions when OPWDD acknowledges that its primary reason for seeking the waiver was to contain cost. The DISCOs will, it is claimed, reduce growth in spending by promoting "less costly alternatives to traditional residential and day program models."

These less costly alternatives will mean substituting in-home services for residential, essentially asking the family to "step up" to fill the gaps and denying adults with developmental disabilities the opportunity to have their own homes. The less costly alternative for day services will be "employment-related services," which essentially means subsidies to employers to hire people with developmental disabilities.

The focus will no longer be on the goals of the individual, but on the needs and business interests of employers, including by continuing to allow people with developmental disabilities to be paid less than the minimum wage.


ONE KEY part of the conversion is substantial downsizing of OPWDD as most of its functions in funding services and establishing eligibility are shifted to the DISCOs.

In 2013, Cuomo attempted to force through $120 million in cuts to OPWDD's budget, only abandoning the effort when one assembly member--the 80-year old parent of an adult with disabilities who nearly starved to death in an institution more than 50 years ago--got every member of the assembly to co-sponsor an amendment restoring the cuts and led a revolt that delayed passage of the budget. The waiver "reforms," however, will accomplish through privatization what Cuomo could not do through budget cuts.

After taking office, Cuomo used the threat of massive layoffs to force the public-sector unions to accept four years without wage increases and substantial givebacks on health coverage. It seems likely that his austerity and privatization agendas are linked, and Cuomo is seeking to shift the operation of the system to the DISCOs in part to cut the state's payroll and reduce the power of unions in the developmental disability service sector.

New York's plan is to follow up on the creation of the DISCOs by opening up specialized services to for-profit managed long-term care and mainstream managed care providers. In moving toward turning over services to for-profit managed care, New York is following a path blazed by Kansas, which is the first state to have made the conversion complete.

The conversion of Medicaid services to managed care began nationally some years ago, but disability services were carved out at the insistence of disability activists. Kansas Gov. Sam Brownback was the first to overcome opposition and turn over disability services to the managed-care market. New York is one of the state's following Kansas' example.

The managed-care market is closely following the trend and pursuing opportunities as they arise. In October 2013, Loeb & Troper LLP, which bills itself as "the go-to source for advisory and strategic services" for providers looking to break into new markets, published its first "Managed Care Market Update," highlighting the growth opportunities in New York after the state "soundly planted its flag in the managed care arena...On the horizon, plans are gearing up for the impact of the transition of the developmentally disabled and behavioral health communities into managed care."


BEYOND THE massive threats to quality and adequacy of services, there is a fundamental problem with treating disability as an illness--a construct that is inherent in the managed-care model. Managed care is based on measuring a person's limitations and providing the minimum level of service required to fit within the capitation rate. A truly progressive system would look at a person's strengths and aspirations, and tailor support and services accordingly.

More than 80 years ago, the Bolshevik pioneer of educational psychology Lev Vygotsky developed a concept of primary and secondary disability that remains revolutionary today.

Vygotsky maintained that the primary disability is the organic impairment--that which is physiologically different about the person. The secondary disability is social--deprivation and failure to develop because of society's response to the person's primary disability. Vygotsky believed that education should be focused on identifying the social disability and removing it with reconstructed and strengthened social relationships.

Vygotsky's concept of secondary social disability and its implications for education can be extended to residential and day services, which should be geared toward support and enrichment to achieve a higher quality of social engagement based on the agenda of the individual.

It's clear that the managed-care model, which will assess disability in terms of ability to live independently and meet the needs of employers, will never allow for supports and services to engage individuals with disabilities socially in order to pursue goals and interests of their own choosing.

Activists have not been successful in resisting the managed care "reforms" so far, but resistance will continue because individuals and families literally live their lives within the system. Labor struggles will continue because direct-care workers and the people they work with have an extremely intimate relationship and identity of interests.

Those on the left need to support the struggles of individuals, their families and workers--and to recognize that these struggles did not begin with the conversion to managed care. They are inseparable from a long tradition of struggles by people with disabilities and their families against the limitations imposed on them by fear, ignorance and the need for standardization and conformity.

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