Next month, April, will be Autism Awareness Month. In previous years, some of that ‘awareness’ was often about fighting and preventing autism; about identifying and diagnosing autism in young children; and about children, more generally. However, autism is a lifelong neurodevelopmental disability. Writing in Forbes, Ellen Sabin cites a Washington Post op-ed from two years ago that noted that “the cost for autistic children nearing adulthood will climb to $27 billion annually over the next dozen years.” My own son Charlie will be 14 years old in less than two months. Adulthood is just around the corner for him and for all autistic children.
A recent New York Times article about new regulations for workers in homes for disabled adults in New York state highlights why we must start thinking about the lifelong needs of autistic adults today. Gov. Andrew M. Cuomo has announced steps to tighten regulations for workers in homes for the disabled, says the New York Times. While this is a positive step, many advocates for individuals with disabilities still have many concerns that more needs to be done.
There have been numerous reports of workers physically and sexually abusing disabled adults, as documented in an earlier New York Times article. Furthermore, some of those workers have continued to work with disabled adults. Says the New York Times:
Under the changes, which are scheduled to be formally announced on Wednesday, new direct-care workers employed by the state will be required to have high school diplomas and undergo psychological and drug testing, according to a copy of a press release outlining the changes that was obtained by The New York Times. The administration is not changing existing policies that do not automatically disqualify all convicted felons.
Michael Carey, a “prominent Albany advocate for the developmentally disabled” whose 13-year-old son, Jonathan, died in state care in 2007 — he stopped breathing after being restrained by a worker in a minivan — said that the Cuomo administration’s new measures are “not remotely enough.” Jonathan’s death was ruled a homicide at the hands of a state worker:
“There’s a lot more that needs to be done swiftly — a lot more than they’re saying needs to be done,’ he said…
Mr. Carey expressed concern that internal committees within the troubled agency were being set up to review problems when a far broader overhaul of the agency’s management was still needed. He also said steps needed to be taken to ensure that cases of abuse were investigated outside of the agency.
“If anybody is involved in an apparent crime, it needs to be reported to law enforcement,” he said, contrasting that need with the policy of having the agency investigating itself or turning to “another state agency that’s going to sweep it under the rug.”
A vast majority of the roughly 13,000 allegations of abuse that come in annually are handled internally, despite a state law requiring that incidents in which a crime may have been committed be reported to law enforcement. Records turned over by the state show that fewer than 5 percent of allegations of abuse were referred to law enforcement, though the Cuomo administration is currently reviewing the agency’s recordkeeping practices under previous administrations.
Thanks to education, therapy and medical care (including, for my son, medication), more and more autistic adults can live with some degree of independence, get and hold onto jobs and attend college. However, many individuals (my son for sure) will need care and support for all of their lives. My husband Jim and I hope that Charlie will be able to live in some kind of residence—a group home, a shared apartment—in the community. Much as we’d like to, Charlie will need others besides us to help him.
This Autism Awareness Month, we need to raise awareness about the needs of individuals on the autism spectrum. They need to have access to safe places to live and work and be, and to be supported by who are not only highly trained, but who treat them with respect, dignity and humanity.
Photo of the author's son, Charlie, in 1998 and now in 2011.