Op-ed: Urgent need to focus on care for adults with autism
April 4th, 2009Linda H. Davis writes in the Washington Post that a tidal wave of autistic children entering adulthood over the next 15 years threatens to swamp social service networks. By 2023, she says, it’ll cost $27 billion annually to take care of them all.
Yet the challenges of adult autism are overlooked, she says, as we continue to focus on whether vaccines cause autism, the need for a cure, and how best to educate children with autism. All we get from the White House, Davis says, is a “worryingly broad, detail-free promise.”
An excerpt:
… 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 mother of a 22-year-old son with autism and the author of “Charles Addams: A Cartoonist’s Life.”
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April 7th, 2009 at 3:57 pm
Our elected officials, whether Democrat or Republican, need to hear which programs have actually been of benefit to our children and families, our proposed solutions, and results of brainstorming sessions where we kept the focus on the people for whom we are true advocates. Otherwise, we will be as effective as wet blankets, too.
We should be finding advocates in our government and thanking them for their past support, acknowledging their continued commitment, and educating them about our current true priorities. This includes President Obama and anyone else who has sponsored legislation favorable to our community in the past ten years. Many people with developmental disabilities are in crisis now and most will find a reduction in services and supports in the near future.
We definitely should be concerned about the population of children with autism who are reaching adulthood soon — we already see the problems adults face who are already past the age of support from school districts.
Apparently there are also individuals who are concerned about costs incurred for supports and services for children with Down syndrome already here, as well as any who will be brought into the world due to balanced prenatal counseling. We already know everything we need to know to educate and accommodate individuals with developmental disabilities in our schools. We also know a great deal about preparing our communities for their adult and aging years.
It is not only adults with autism or Down syndrome who will ’swamp’ the social services system in the near future — many of their mainstream peers will find themselves in need of temporary or long-term help as families lose the ability to step in during a crisis or help them through other short term set-backs.
The ’safety net’ for people with developmental disabilities has already been cut before full-funding ever existed, and is facing more cuts along with other social services. Our sons and daughters are in competition for funding like never before, and we do need to step up our efforts.
Creating opportunities for individuals to contribute positively to their communities is the best value for the money, as is preventive care rather than emergency room intervention. We would rather members of our typically developing population grow up to learn trades and earn degrees than to be arrested and spend their adult years locked up, too. All that money spent on prisoners and rehabilitation could be diverted to social services for adults with developmental disabilities, who often find fewer services than criminals in jail.
Investing in America means much more than addressing the needs of those with the highest earning potential. But we do need to get the economy going in a more stable direction so that those who can make a good living can work and build it back up, and those of us who want to be there for our grown sons and daughters with disabilities, as well as their mainstream peers, will have something in reserve to step in where we are needed.
Most people I know believe that our new president can address the challenges we face and is smart enough to put together teams of individuals who offer the best chance of getting us through worse times ahead. Our sons and daughters with developmental disabilities are the canaries in the coal mine. For some of them, the decisions that are being made are about life and death issues.
We do need to consider carefully whether we have the luxury of criticizing and rejecting the intent and commitment of our political leaders when so many children and adults are depending on us to be advocates and diplomats on their behalf. It is difficult for me to trust those who are disrespectful and more interested in bellowing their own angry views than in sitting down at the table and prioritizing the needs and concerns of those who have no voice.
Linda H. Davis is forecasting developments that can not be denied. We need to listen to other voices speaking up about real concerns that deeply affect individuals with developmental disabilities, who are in immediate need of level-headed advocates whose first priority is support and encouragement of people with disabilities.
Our sons and daughters are in this for the long haul, and don’t need us to be sidetracked, whining and complaining. It’s time for the rest of us less-than-perfect people to buckle down and get some real work done, and to inspire our less-than-perfect elected officials to do the same.