Children with Autism Neglected by the State - FL Prioritizes Disabled Adults

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Letter to the Editor of the Orlando Sentinel regarding an article written by Ms. Salamone (August 2004) about the Florida Developmental Disabilities Wait List (never published)

Thank you for your feature on Developmental Disabilities.

It was alarming to see that at least 30% of the qualifying population still waits, entirely without any services or support.  At the current rate, 3% of those waiting (360 of the 14,000) will receive services by the end of 2004; and the list will then be approximately 17,000 long.

Over 30% of those waiting are autistic, many under age 5.  As Ms. Salamone poignantly illustrated, autism can be a severe disability which impacts an individual in every area of daily living.  The rigors of providing basic care for a severely autistic individual include 24/7/365 vigilance; the physical strength and endurance of an ironman; the emotional strength and control of Ghandi; and spirit mightier than any biblical leader’s.Additionally, helping these individuals to “recover” to capable and productive futures, requires the financial strength of a small country.  Caregivers run on less sleep than a marine in bootcamp, and more stress than a Wall Street trader; for years.

 

At least 30% of autistic children could have independent futures (maybe as many as 60%), with early, intensive intervention; from two to seven.

 

As Ms. Brantley stated, "…we all have to recognize…Everyone has the same universal human aspirations. They want to live the American dream..."By leaving these individuals on the waiting list, without critical services to teach them how to learn (then help them to “catch up” through intensive therapies in self-care, communication, social interaction, and generalization), we are abandoning these people to a life of institutionalization and isolation.

“Rep. Heather Fiorentino said she wants to “prioritize…(the) list to serve young adults leaving the school system…if they don't get help…skills…could be lost...” 

However, for the waiting autistic population, there has never even been an opportunity to learn basic life skills, and there may not be one, if they continue to languish on the waiting list.

It is costly to treat autistic children with the most successful therapies; enabling them to become independent and participate in mainstream society – anywhere from $20,000.00 - $70,000 a year, for one to six years; significantly less each year thereafter.  Until adulthood, when they begin returning monies to the economy through spending and taxes. 

Has anybody counted the ultimate cost?  If we let these children continue their descent into the autistic abyss, waiting for services, until their greatest window of opportunity for therapeutic success has virtually closed, estimates place the cost for lifetime support of an autistic adult in State institutions or group homes at $6,000,000.00, or more. 

As the Senate Appropriations Subcommittee on Health and Human Services struggles with funding priorities, I urge them to consider the cost of their decisions, first in human potential and then in both current and future budgetary dollars.

In the meantime, families are failing, children are losing their security, their homes, and their futures.  These children ARE getting Left Behind.

[Update: In 2016, the Developmental Disabilities Wait List in Florida has ballooned to >22,000 Floridians; the majority of those waiting for funding to receive critical services are still the children]


Submitted: April 15, 2017

© Copyright 2022 LizP. All rights reserved.

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hullabaloo22

Early intervention is definitely something to aspire to, but early diagnosis is even more important and seems so often to be impossible to get. Another excellent essay highlighting some of the difficulties surrounding life with autism.

Sat, April 15th, 2017 3:03pm

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Thanks, hullabaloo - you are so right. It is ironic that many not touched by this epidemic think it grossly over-reported, when those struggling within the tsunami often cannot get recognized and diagnosed! And, when diagnosis is attained, the medical profession at-large believes this is an end, not a beginning, leaving parents without a road map to help improve their child's health and capability, For the "lucky" ones, whom attain a diagnosis and find a path forward, they are immediately stymied by lack of available funding, and if they manage to have sufficient finances, find there are few providers, with the talent and availability, to provide the level of services required.

Sat, April 15th, 2017 12:22pm

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