by Jill Escher, President, Autism Society San Francisco Bay Area
It’s autism awareness month, and you’re probably confused. Have the numbers really increased? Is it mostly due to better awareness? Hasn’t this brain disorder, with its notable social/communication/behavioral abnormality, always been around, and we just labeled it something else? Like geekiness or awkwardness?
Let me be clear where our media and government have failed: autism rates have, without any scintilla of doubt, exploded over the past 25 years. And as a consequence, we now have an unprecedented population of young adults incapable of caring for themselves and who will need often intensive lifespan care. And those numbers increase markedly every year.
Let me be clear where our media and government have failed: autism rates have, without any scintilla of doubt, exploded over the past 25 years. And as a consequence, we now have an unprecedented population of young adults incapable of caring for themselves and who will need often intensive lifespan care. And those numbers increase markedly every year.
In 1985, California, which has kept meticulous records of the developmentally disabled since the 1960s, counted just a few thousand citizens substantially disabled by autism. Today we have 70,000 — a staggering increase of more than 2,000% that nobody could have anticipated, and this number does not include the tens of thousands more moderately affected and not served by the state Department of Developmental Services, and it certainly does not include the merely socially awkward. In other words, for every one Californian rendered substantially disabled and dependent by autism in 1985, there are more than 20 today.
With ever-escalating numbers of dependent young adults, the time has come to reform our developmental disability housing and services system that was not designed to handle this many and with such intensive needs. Our current model, though well-intentioned, is beset by some significant bureaucratic hurdles, lingering paternalism and financial inefficiency, and had been based primarily on models serving milder disabilities.
Here are five things we can do today to begin to address the burgeoning adult housing and services needs:
-- Day Programs: Programs appropriate for adults with autism, particularly those with challenging behaviors and communication deficits, are bursting at the seams, with ever-growing waiting lists. Overwhelming costs, limited reimbursements and bureaucracy prevent programs from expanding and new programs from being created. Nonprofits are ready to invent the solutions if given a green light by stripping away red tape and providing reimbursement that cover the actual cost of care.
-- Housing: Our agencies provide few vouchers or other supports for autism housing. A comprehensive federal plan for autism housing across should be developed to include reasonable incentives, such as vouchers and tax breaks, to empower a broad menu of housing options. Given the surge in numbers of those severely disabled by autism, this should include “communities within our communities” that offer much-needed amenities such as protected open space, swimming pools, swings, and other therapeutic equipment, safety monitoring and fencing.
-- Transparency: Our developmental disability system now finds itself mired in an old paradigm where the government agencies paternalistically withhold information about community housing and services, giving parents and families little access. We need a transformation into the 21st century with online portals giving all families full information about the options in their communities.
-- Employment: Many people with higher-functioning autism are capable of supported employment if given the opportunity. The state should incentivize all employers to hire people with autism, in collaboration with nonprofits that can provide training and ongoing support and supervision. This must include making it legal to hire substantially cognitively disabled workers for lower than minimum wage.
-- What happens when we die? Our biggest challenge as a state will be finding ways to ensure the daily wellbeing of dependent and vulnerable adults with autism after parents have passed away or are no longer capable of providing care. We need to allow parents to create long-term proxy parents through innovative, new nonprofits. As most autism families cannot afford yet another bill relating to their children’s disabilities, seed-funding these vital nonprofits will require public support.
With ever-escalating numbers of dependent young adults, the time has come to reform our developmental disability housing and services system that was not designed to handle this many and with such intensive needs. Our current model, though well-intentioned, is beset by some significant bureaucratic hurdles, lingering paternalism and financial inefficiency, and had been based primarily on models serving milder disabilities.
Here are five things we can do today to begin to address the burgeoning adult housing and services needs:
-- Day Programs: Programs appropriate for adults with autism, particularly those with challenging behaviors and communication deficits, are bursting at the seams, with ever-growing waiting lists. Overwhelming costs, limited reimbursements and bureaucracy prevent programs from expanding and new programs from being created. Nonprofits are ready to invent the solutions if given a green light by stripping away red tape and providing reimbursement that cover the actual cost of care.
-- Housing: Our agencies provide few vouchers or other supports for autism housing. A comprehensive federal plan for autism housing across should be developed to include reasonable incentives, such as vouchers and tax breaks, to empower a broad menu of housing options. Given the surge in numbers of those severely disabled by autism, this should include “communities within our communities” that offer much-needed amenities such as protected open space, swimming pools, swings, and other therapeutic equipment, safety monitoring and fencing.
-- Transparency: Our developmental disability system now finds itself mired in an old paradigm where the government agencies paternalistically withhold information about community housing and services, giving parents and families little access. We need a transformation into the 21st century with online portals giving all families full information about the options in their communities.
-- Employment: Many people with higher-functioning autism are capable of supported employment if given the opportunity. The state should incentivize all employers to hire people with autism, in collaboration with nonprofits that can provide training and ongoing support and supervision. This must include making it legal to hire substantially cognitively disabled workers for lower than minimum wage.
-- What happens when we die? Our biggest challenge as a state will be finding ways to ensure the daily wellbeing of dependent and vulnerable adults with autism after parents have passed away or are no longer capable of providing care. We need to allow parents to create long-term proxy parents through innovative, new nonprofits. As most autism families cannot afford yet another bill relating to their children’s disabilities, seed-funding these vital nonprofits will require public support.
Today we face an astonishing range of challenges: the persistent mystery over what is causing abnormal brain development in a large portion of an entire generation; the lack of any effective treatments for the devastating condition; a shoulder-shrugging federal government that has yet to meaningfully address the autism crisis; the often massive emotional, financial, and physical toll on parents and families; and the lack of housing, programs and supervision to the ever-growing wait list of dependent young adults who cannot care for themselves and often have intense learning and behavioral challenges.
The adult autism crisis is here. The needs are intense and must be addressed, for many decades to come. This time has come for federal and state policy to unwaveringly empower the market, nonprofits and parents to invent a better future.
The adult autism crisis is here. The needs are intense and must be addressed, for many decades to come. This time has come for federal and state policy to unwaveringly empower the market, nonprofits and parents to invent a better future.
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