"Most of these cognitively impaired citizens don't vote. Most of them
can't live alone or work in public places. Many can't even take public
transportation by themselves"
"The number of autistic children expected to need extensive adult
services by 2023 -- more than 380,000 people -- is roughly equal to
the population of Minneapolis."
----------------
"Still Overlooking Autistic Adults"
Op-Ed
By Linda H. Davis
Saturday, April 4, 2009; A15
Question: What coming social expenditure will cost more than a third
of this year's budget for the Department of Health and Human Services
and be larger than the entire current budget of the Energy
Department?
Answer: The bill for the tide of autistic children entering adulthood
over the next 15 years, an estimated $27 billion annually in current,
non-inflation-adjusted dollars by the end of that period. The number
of autistic children expected to need extensive adult services by 2023
-- more than 380,000 people -- is roughly equal to the population of
Minneapolis. If a town were created to house this group of people and
their caregivers -- for you can't separate the two -- it would exceed
the population of all but six U.S. cities. If they formed a state, it
would have four electoral votes.
But most of these cognitively impaired citizens don't vote. Most of
them can't live alone or work in public places. Many can't even take
public transportation by themselves.
Yet as World Autism Awareness Day passed this week, with the wrecking
ball swinging at all levels of social services in this devastated
economy, the challenges of adult autism continue to be overlooked.
Many news reports focus on whether vaccines cause autism, the need for
a cure or the education of autistic children. Autistic adults are
relegated to the sidelines. Even the Obama administration, which has
pledged better care for disabled Americans, including those with
autism, has not been specific enough about its plans for those who
will probably never be able to live independently or be part of the
traditional workforce. "Improving life-long services for people with
ASD," as autism spectrum disorder is known, is a worryingly broad,
detail-free promise in the White House agenda published online.
I understand that no one wants to look at a child and imagine the
clunky, in-your-face adult he or she will become or think about the
stares he or she will induce. When I look at my pudgy 22-year-old son,
Randy, still sweet-faced but so obviously disabled, I cannot locate
the blond cherub he used to be, gripping his stuffed brown bear. While
writing this, I listened to Randy getting into the refrigerator (he's
home again from his supervised job -- two mornings a week -- because
of another problem with the overwhelmed human services provider funded
by the Commonwealth of Massachusetts), and wonder who will love or at
least protect him when he ends up in a group home run by an underpaid,
overworked staff.
Randy's father and I are keeping him at home as long as possible, even
as I'm battling an incurable cancer. The inadequate state services and
perilously thin funding have seriously hampered our ability to work
while caring for our son. I feel as though we're playing Russian
roulette with Randy's future, yet I cling to my gentle son, unwilling
to entrust him to a system that grows more fragile than I do.
Randy is just one of hundreds of thousands of autistic adults to whom
society pays frighteningly little attention. The price of their care
will affect all Americans, not only those who have autistic children.
Along with housing, day programs, transportation to those programs or
jobs, and higher-than-average medical costs, adults with autism
require steady supervision and support. Consider: A well-behaved,
relatively high-functioning person such as my son could manage in an
environment that has a ratio of three clients per staff member. But
many autistic people require a one-to-one ratio. This is a serious
hurdle, not least because of the high turnover rate among those who
provide direct care, which stems in part from their low wages. Not
everyone is temperamentally suited to this work. People with autism
present myriad challenges: They can sometimes be violent, sometimes
are self-abusive, suffer psychological meltdowns, or behave in many
socially unacceptable ways, to say the least. Women, traditionally
cast in the caregiver role, are at risk of greater physical harm when
caring for autistic adults than for children. At expected rates, we
will need to find an additional million caregivers, people who must
have the right personal qualities to work with autistic individuals
but who are willing and able to work for low wages. This is no small
challenge. We not only must train people but also show that we value
this work by paying them better.
In 15 years, the cost of care just for the autistic children entering
adulthood over that time will be about equal to the current state
budget of Tennessee. Meanwhile, services are dangerously strained, and
the influx of autistic adults is underway. This country urgently needs
to focus on adult autism, new models of care and new sources of
funding. Before the looming tidal wave delivers another crushing blow
to our economy, we should have a national discussion. It should begin
today.
[Linda H. Davis is the author, most recently, of "Charles Addams: A
Cartoonist's Life" and is president of the nonprofit SAGE Crossing
Foundation, formed to create a farmstead for autistic adults. Her
husband, Chuck Yanikoski, who is treasurer of SAGE, contributed to
this piece.]
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