Hidden Problems with Autism Funding: A Nurse Speaks Out
Is the rise in autism over recent decades linked to a harmful prenatal environment? Evidence may point that way, says New York Times writer Nicholas D. Kristof in a February 2010 article published in the Dayton Daily News. Medications and common products such as shampoos and cosmetics may affect unborn children adversely, according to the article. For example, 11 percent of children born to women who took the anticonvulsant valproic acid early in pregnancy were autistic.
Whatever the reason, it's certain that we hear far more about autism in the news today than 70 years ago, when it was first identified. And according to nurse Linda Lajterman, who has 20 years of expertise in disability management, what we hear may not always be the full story.
"Of the millions of dollars that goes to autism causes most is used for research and very little, if any goes to the families living with it now," says Linda Lajterman, RN,CCM, CDMS, ABDA, CLCP. "[Kristof's article] shows they are onto something, but why is it taking so long and why is so little money being given to the families?" she asks.
According to Lajterman, her home state of New Jersey has the highest rate of autism in the nation, yet families struggle to obtain necessary services for their autistic children. "Families are constantly fighting with schools for proper placement and home programs," Lajterman says.
For example, current standards of treatment recommend at least 25 hours of one-on-one therapy, yet school programs may provide only 1 or 2 hours. Families that can afford it pay out-of-pocket for extra therapy and programs, but what happens to autistic children from families with limited economic means? For autistic children, therapy is not a luxury, it's a necessity. Without enough therapy at a young age, the 1 in 94 children diagnosed with autism may be unable to work or live independently and may require long term residential placement. "Advocates and lawyers are often brought in to help the families fight," says Lajterman. "There are some pro bono attorneys who try to help, but they have large case loads."
As if the outlook for families with autistic children weren't challenging enough, the situation recently became intensified. On February 11, 2010, an emergency spending reductions order signed by the New Jersey governor resulted in Autism New Jersey losing $155,000, normally provided through a longstanding contract with the State's Division of Developmental Disabilities (DDD). In an attempt to reverse the budget cut, petition signatures from parents are pouring in, accompanied by comments like, "Our income is greatly reduced, due to our inability to find child care," and "Without the crucial support of DDD funds for services our son and family will suffer the consequences."
A Registered Nurse, Certified Disability Management Specialist, Certified Case Manager, Certified Disability Analyst and Fellow, and Certified Life Care Planner, Linda Lajterman hears frequently from desperate parents like these. "I have families calling me all the time looking for help. There are many very generous donors out there who give to autism causes--do they know that the families almost never see it?"
In July 2009, Lajterman founded Crossroads for Growth Inc., a non-sectarian, non-profit organization that seeks to provide relief to New Jersey’s economically challenged families that have children with autism spectrum disorders by assisting them in receiving therapeutic services.
Unfortunately, Lajterman says she often gets turned down for grants and donations: "Many generous individuals donate to autism, but most likely are unaware of how little of their money goes to help families."
Hopefully, this dedicated nurse's work on behalf of families with autism will have a positive effect. Please share your story about nursing individuals with developmental disabilities or working with affected families.
Nicholas D. Kristof's article "Do chemicals cause autism?" can be read at http://www.daytondailynews.com/opinion/columnists/nicholas-kristof-do-chemicals-cause-autism--568405.html?cxtype=ynews_rss.
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