Melissa Moon worries that she will have to quit the job she loves or put her son in an institution.
Leslie Gott and her two daughters live with the fear that they will soon be homeless.
Kirsten Sneid fights the system to do the best she can by her son.
The three women -- each struggling to raise a child with autism -- say
the social-service network in Kansas has failed to provide enough money for
early treatment for children and help for parents at a time when the number
of diagnosed cases of autism has skyrocketed nationwide.
Gott, a student, and Moon, an administrative assistant, both
low-income single mothers from Shawnee, say they are desperate to find
qualified child care.
Sneid, a Leawood nurse who stays home to care for her autistic son,
says stories like these are common.
"We're in a desperate situation," she said. "We are facing a public
health crisis that we have not yet met." The number of children diagnosed
with autism at the University of Kansas Medical Center, for example, has
grown from four in 1993 to 258 last year.
The number of persons age 6 to 21 with autism who have been educated
in Kansas has grown from 79 in the 1992-93 school year to 506 this year. In
Missouri the numbers have grown from 630 in 1992-93 to 2,073.
Nationwide the demand for services has increased 556 percent in the
last decade, reports the U.S. Education Department.
Some attribute the increases to greater awareness and early detection.
Others say new research has expanded the definition of autism. Still others
blame genetics, early childhood vaccinations and environmental factors.
Whatever the cause, critics in Kansas say state aid has not kept pace
with the need at a time when research shows early intervention can save
hundreds of thousands of dollars in the cost of long-term care.
"And the question becomes, is our care system ready for the numbers?"
said Marie Bristol-Power with the National Institute of Child Health and
Human Development. "The answer is no." In Missouri the frustrations are not
so much different, even though the state is years ahead of Kansas in
providing aid specifically for autism programs.
Waiting lists for complicated diagnostic testing and services are a
year long. Social-service experts in Kansas, struggling to revamp the entire
developmental disabilities financing strategy, acknowledge there are severe
problems.
Moon's story is a struggle for day care for her 10-year-old son.
Trouble lurks the minute Tyler steps out of his familiar world and
faces stimulation that can trigger an outburst: the cars that blur by in a
stream of color; the neighbor children who get in his face; the bright sun.
On any given day Tyler will lash out, curse and threaten to run into
the street.
If it happens when Moon, 36, is at work, it is often too much for
Tyler's unskilled teen-age baby sitters. So Moon will get a call: Tyler is
out of control. She must drop everything and take her son to her office in
the chemical division of Lady Baltimore Foods in Kansas City, Kan. She makes
$9.25 an hour, or about $20,000 a year, and receives Medicaid.
Without reliable day care, she will have to quit her job. Without a
job, she will have no income. Without income, she fears she will have to
relinquish her parental rights and let the state take her son.
Last month she held a meeting in her home for a handful of
social-service workers. She sought help in caring for Tyler while she worked
or did other things away from home.
Her boss, Michael Stephens, was at the meeting, too. Stephens says he
does not want to lose a valuable employee but cannot let Tyler play near
industrial chemicals and distract his mother.
"No one had anything to offer," Moon said of the meeting.
Moon said she hoped to help establish a care center in Johnson County
for special-needs children and their families.
Community Living Opportunities, a network of parents of
developmentally disabled children, has recently purchased a day-care center
in the county.
Until special programs and caregivers can be found, however, the
center will not be able to open its doors to children such as Tyler.
In May the Governor's Commission on Autism called on Gov. Bill
Graves to spend $3.5 million in the next four years to establish diagnostic
and outreach centers on autism at the University of Kansas Medical Center
and in Fort Hays, Wichita, Emporia and Parsons.
Chairman Lew Faust of McPherson, the father of 9-year-old Bradley, who
is autistic, said the $30 million annual portion of the state's tobacco
settlement could be a source of money.
In Missouri the state spends $3.5 million a year to provide assistance
for 1,300 families touched by autism.
Beginning with $110,000 in state aid for 40 families nine years ago,
Missouri's Family Support Project for Autism has received increased
appropriations each year to finance five statewide outreach centers, said
Donna Evert of the Department of Mental Health.
Missouri lawmakers were early to note the growing number of autistic
children and the need to provide separate aid for programs designed by
parents, Evert said.
In Kansas financing for the broad social-services category --
developmental disabilities -- has increased over the years.
But because Kansas does not specify funds for autism -- and state
lawmakers' insist that is the only way to be fair to everyone -- parents of
autistic children say their needs are inadequately financed.
The wait for services at Johnson County Developmental Supports is
long.
A total of 122 developmentally disabled persons are on its waiting
list for service, and 130 are on a second list for those who are considered
underserved. Developmental Supports helps about 1,000 people with
developmental disabilities but does not track the number of those with
autism.
At the same time, research shows that with intense early intervention,
up to 50 percent of children diagnosed with autism before age 5 go on to
attend mainstream schools.
In the long run early intervention can save money, a recent
Pennsylvania study shows.
By spending $65,640 in the first two years of the life of an autistic
child, a state service provider can expect to save up to $1.7 million in
custodial care over the next 43 years of the child.
Autistic children should receive 40 hours of intense socialization a
week compared with the 10-hour average now available, said Matthew Reese of
KU Medical Center's child development unit.
"There's a gap between what we now know and what the system is able to
provide, and it really leaves parents lost." III A well-lighted room or a
windy day is enough to send Leslie Gott's 10-year-old daughter, Ali, into
fits.
One recent day construction at Johnson County Community College, where
Gott, 35, has applied for financial aid to study to become a social-services
counselor, put Ali into spasms.
Unable to handle the unknown, Ali screamed, gouged herself and bit her
mother's forearms. Curious office workers peeked from their cubicles. All
they saw was a beautiful girl hollering at a frustrated mother.
There is not a door or a harness that can hold Ali, her mother says.
Ali's gross- and fine-motor skills are at the level of a 21/2-year-old. She
cannot talk and sleeps only a few hours a night.
It is a high-maintenance, no-frills life for Gott, Ali and Gott's
other daughter, Skylar, 9.
Gott is getting all the state aid available to her -- $124.38 a month
in supplemental security income, $600 every three months from Johnson County
Developmental Supports and $238 a month in food stamps. As an unemployed
single mother, however, she says it is a relief-check-to-relief-check
existence.
To top it off, she is facing eviction. Her lease has expired, and she
cannot scrape together a security deposit equal to three months of rent for
a new place.
"So many of the support services are so finite in what they can do,"
Gott said. "Either nobody has funds, or we don't fit the criteria, or we
don't live in the right area." Caring for an autistic child, parents say, is
a financial, emotional and physical drain.
Most parents of autistic children in Kansas do not qualify for Home
and Community Based Services/Mental Retardation payments through the
Department of Social and Rehabilitation Services, even though three of four
autistic persons have some degree of mental retardation.
Funds available to pay caregivers of autistic children amount to
little more than minimum wage, and they often quit in frustration.
Sneid, the Leawood nurse, and her husband, David, a physician,
spend $18,000 a year to supplement the Blue Valley School District's
education of their autistic son, Evan, 5.
Because Kansas does not guarantee a person's right to developmental
disabilities services under state law, there is no assurance that Evan will
get the services his parents think he needs.
"Autism is a hidden disability, and because autistics don't look
disfigured or physically handicapped, they aren't treated as severe cases
that need high levels of funding," said Faust, of the governor's commission.
A Kansas audit in November showed that each year since the
Developmental Disabilities Reform Act was passed in 1996, an increasing
amount of money had been appropriated for community-based care.
"However," the audit reads, "paying for services for existing clients
is now straining an already limited state budget, and the number of eligible
clients asking for help and not getting served continues to grow." Last year
Gary Daniels, superintendent of Parsons State Hospital, was appointed
chairman of a task force charged with addressing the needs of people in
Kansas who have rare disabilities that require high-dollar care.
Moved by parents' testimony, Daniels' goal was to broaden financing
eligibility guidelines. But the group has met only twice since April 1999,
and after a Social and Rehabilitation Services staff reshuffling, it has not
been able to issue a single recommendation.
In 1998 the governor's commission concluded that the supports for
parents of autistic children were too few, exclusionary and not
comprehensive.
Autism, however, is only one part of an overall financing problem.
The number of people with developmental disabilities continues to
increase as medical science improves and people live longer, said Jane Rhys,
executive director of the Kansas Council on Developmental Disabilities.
Hearings in Topeka before the Social and Rehabilitation Services
Transition Oversight Committee are exploring ways to respond. But to call
them solutions may be a stretch.
One response, Rhys said, is to change eligibility guidelines so fewer
people qualify for services. Another response is to reshuffle existing funds
so the most profoundly disabled receive the most state money.
Republican state Rep. Melvin Neufeld of Ingalls, the chairman of the
oversight and social-services budget committees, said the hearings probably
would result in a recommendation this fall for a 2 percent cut in state aid
for developmental disabilities.
"There won't be new money," Neufeld said.
In fiscal year 2001, Social and Rehabilitation Services has proposed
reducing the aid for developmental disabilities by $4 million.
That puts pressure on parents to make up the difference themselves.
Sneid, the stay-at-home mom from Leawood, hopes to secure a $50,000
grant from the Research Mental Health Foundation in Lee's Summit to pay for
a team to help families care for autistic children.
With help from the schools, Sneid also has created an early
intervention program. Some 40 families in Johnson County have visited her
home seeking advice.
Autism, says Bristol-Power of the National Institute of Child Health
and Human Development, is the Rosetta stone of developmental disabilities
and should be a top priority. If researchers can understand autism, she
says, they hold the key to unlocking other disorders.
"There is so much we don't know," Bristol-Power said. "But most of
America's children are not getting the benefit of what we do know."
For those of you who are interested to see how much support your Congressmen have offered by state...we wanted to send you the following breakdown. To find out who your Congressman is, or to find their email addresses, go to www.house.gov/writerep. At the bottom of this email is a sample letter that you can send after you add your individual information.
We would especially like to concentrate on the representatives of the Committee on Government Reform. Not only have they had several hearings on autism over the last year, but they are the committee that oversees postal issues and the issuance of stamps. Members of the Committee are listed at http://www.house.gov/reform/106memb.htm.
At this time, Congressman Dan Burton has extended his support to our community for the bill but as Chairman of the Committee on Government Reform who will review the bill, he cannot sign onto the bill at this time. Please write everyone else though!
WE NEED 270 REPRESENTATIVES CO-SPONSORING THIS BILL TO HAVE ANY EFFECT THIS YEAR. They must be signed on by the 3rd week of September. This is an excellent time to contact their offices because they are out of session until September 7th and it is a little less hectic.
This is not impossible. If your Congressman has already signed onto the bill, please contact their office and ask if they would send out a "Dear Colleague" letter on behalf of H.Res. 458 or ask other members of their delegation to sign on. It is not a controversial issue. It should be equally important to both Democrats and Republicans.
WE HAVE 218 PEOPLE TO GO. WE CAN DO IT.
REMEMBER - Only you can be sure that a difference is being made if you take the time to make the difference yourself!
THANKS!
Shelley Reynolds
Unlocking Autism
WISCONSIN - 3 out of 9 representatives in support
CALIFORNIA - 2 out of 52 representatives in support
MISSOURI - 1 out of 9 representatives in support
NEW YORK - 8 out of 31 representatives in support
TEXAS - 3 out of 30 representatives in support
LOUISIANA - 5 out of 7 representatives in support
ARIZONA - 1 out of 6 representatives in support
IOWA - 1 out of 5 representatives in support
PENNSYLVANIA - 2 out of 21 representatives in support
VIRGINIA - 2 out of 11 representatives in support
NEW JERSEY - 3 out of 13 representatives in support
ILLINOIS - 2 out of 20 representatives in support
WEST VIRGINIA - 1 out of 3 representatives in support
KENTUCKY - 3 out of 6 representatives in support
INDIANA - 1 out of 10 representatives in support
CONNECTICUT - 1 out of 6 representatives in support
OREGON - 2 out of 5 representatives in support
OHIO - 2 out of 19 representatives in support
MICHIGAN - 3 out of 16 representatives in support
MASSACHUSETTS - 2 out of 10 representatives in support
FLORIDA - 2 out of 23 representatives in support
MARYLAND - 1 out of 8 representatives in support
NORTH CAROLINA - 1 out of 2 representatives in support
PUERTO RICO - 1 out of 1 representatives in support
Didn't see your state listed here? That means no Congressman in your state is supporting this bill. Give them a call or write them!
SAMPLE LETTER: BE SURE TO FILL IN THE APPROPRIATE PLACES WITH YOUR OWN PERSONAL INFORMATION WHEN SENDING THIS LETTER. OR USE THIS ONE TO HELP YOU CONSTRUCT YOUR OWN.
Dear Congressman (NAME):
I am writing you to ask you for your support of H.RES.458 by Congressman Richard Baker (Baton Rouge, LA - R) which would express the sense of the US House of Representatives that:
(1) a commemorative postage stamp should be issued by the United States Postal Service on the subject of autism awareness; and
(2) the Citizens' Stamp Advisory Committee should recommend to the Postmaster General that such a postage stamp be issued and a Sense of Congress that the USPS should strongly consider issuing an autism awareness stamp.
Recognition of this disorder in the form of a stamp would mean so much to our family because (FILL IN YOUR PERSONAL REASON HERE) ......
Rates of autism have risen dramatically over the last ten years and are continuing to rise. It is conservatively estimated that one in 250 children in the country are diagnosed with an autism spectrum disorder. Only ten years ago, one child in 10,000 was being diagnosed. It is time for this country to become aware of the disorder that affects more children than any other. This stamp, among other things, would greatly assist our community in doing so.
Despite the epidemic increase of autism throughout this country and the world, the USPS has repeatedly denied our community of a stamp indicating that they believe that not enough people are affected by autism to make it worth their while.
Surely the children of this nation and the families, professionals and friends that care for them deserve this much recognition for the daily struggles that they have.
I am asking that you would please make it worth your while and cosponsor H.RES.458. In passing such a resolution, you would be able to help us let the USPS know that there is a large enough community out there to warrant their time and effort in this manner.
I would like to have a response to this email regarding your position on this proposed resolution.
With greatest respect,
YOUR NAME
YOUR ADDRESS
YOUR CITY, STATE, ZIP
YOUR PHONE NUMBER
YOUR EMAIL ADDRESS
Author: Shelley Reynolds Unlocking Autism
