No longer dying at sea

Ignorance and fear of the 15th century led to practices such as the “Ship of Fools”, which launched people with severe disabilities out to sea, sometimes to their death.  “Progress” then moved us into the “The Great Confinement” of the 17th through 19th centuries where families placed people with disabilities in institutions where there was gross abuse, starvation and negligence.

Better than dying at sea, but hardly a good life.

Thankfully, the practice of segregation and abuse of individuals with disabilities slowly began to fade away in the 20th century as advocacy for civil rights became more commonplace.

By the mid-1970’s most state governments had committed to de-institutionalization, and when on June 22nd, 1999, under enforcement of the Olmstead Act, (Olmstead vs. L.C.) it was agreed that the “unjustified institutionalization of people is a form of discrimination”, individuals with disabilities were finally given the choice of a fully integrated life within their communities.

Or so we thought.

As the cost of medical services rises throughout the United States, state governments are struggling to meet the health needs and the increasing price tag of health care for their neediest residents with disabilities. New and more creative models such as the New York State 1115 Waiver, (‘People First Waiver’), a system of reform that has been developed in order to “safely, effectively and efficiently support individuals with developmental disabilities in the community by improving coordination of care across the state’s numerous service systems that support individuals with developmental disabilities.”

It’s a re-affirmation that people want to live like people – in the community and make their own choices.

The ‘People First’ project proposes that improved health care coordination can be reached through better organization of care, and that a long term care delivery system that considers individual needs, choice and satisfaction.

The system improvements through the 1115 Waiver are responsible and responsive to the changing needs of New York State consumers. These proposed modifications are community-based and are centered on an individual’s needs. They are simple to understand as well as flexible and endorse personal choice with a focus on the service needs and well-being of consumers.

People with disabilities are no longer suspended voices living in the darkness on those infamous “ships that pass in the night”. Oliver Wendell Holmes once wrote, “I find the great thing in this world is not so much where we stand, as in what direction we are moving, - we must sail sometimes with the wind, and sometimes against it - but we must sail, and not drift, nor lie at anchor.”

As we all work towards constantly moving closer to the processes that enable people with disabilities to attain their own personal freedom, we ask for your support for the ‘People First’-1115 Waiver.

It’s much better than dying at sea.