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February 19, 2002
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The Ghost of Autism Future: The Ogre of Adult Autism Today
A Call To Action Part 2 of 2
Yesterday’s first installment of “A Call to Action” by
Ruth Sullivan, Ph.D., for the ASA, was introduced as “The Ghost of Autism
Future: The Ogre of Adult Autism Today”.
It described the limited services available to today’s autistic
adults. The report summarized:
“The critical shortage of services for adults with autism
is a daily hardship for tens of thousands of families in the U.S. who struggle
to provide a meaningful and productive life for their loved one who has aged-out
of school. Since 1975 when the
Education for All Handicapped Act (now Individuals with Disabilities Education
Act, I.D.E.A.) mandated a free and appropriate education for children with
disabilities, parents took for granted their child had a firm and
Congressionally mandated right to services.
Many are stunned to learn that when their child leaves school, the
mandate for services ceases.
The report later explains that “the major funding source
for DD services in community-based settings comes from the Medicaid HCB Waiver program. Depending on a state’s plan, the funding is
based on consumer medical needs (not family income), provides individual case
management, promotes choice, mandates careful documentation, provides most
medical costs (via a Medicaid card), covers residential costs as well as
in-home training and/or respite, and makes parents/guardians an equal member of
the Interdisciplinary Team (IDT), which develops the Individualized Program
Plan (IPP).
“But, unlike the mandatory services under I.D.E.A.*, the
Waiver is funded for only a limited number of eligible individuals, so
eligibility does not provide entitlement.
The full report is available in its entirety at the
website:
http://www.autismservices.com/articles.html
PDF version on the ASA website:
http://www.autism-society.org/society/adult_services.pdf
[Report continues]
In a behavioral, out-of-control crisis, individuals—including
children—with autism can be scary.
Without well trained, experienced staff or caretakers, the situation can
quickly grow into a full blown confrontation.
Typically, the person with autism loses. Because half of individuals with classic
autism* do not speak or have limited language, they cannot express themselves
in ordinary ways. The constant high
level of anxiety so characteristic of autism makes “getting the words out” even
harder in tense situations. An
experienced staff or caretaker would be more likely to recognize the source of
the problem and know how to help the client to get himself back under control.
Here’s an example, compiled from several articles in
various publications in Nashville, Tennessee.
(See E-mail References.)
In April, 2000, an agency providing HCB services to
individuals with DD assigned a new staff to a 32-year-old, nonverbal man with
autism. This new staff, a woman with a
three year old, had been recruited and hired with the understanding that she
could take her child along when she took the client on community outings. There had been some brief training in which she
was told that if the client got upset (he had had aggressive episodes in the
past which were noted in his record), the “treatment” was to take him for a
walk.
On the second outing with the client, she took him and her
child to a mall store where the client became agitated. (It is well known among people who know
autism that hypersensitive hearing and anxiety around crowds or noise is common
in autism. His record noted that crowds
bothered him.) The staff was able to
get the client back to her van. When he
started hitting her child, she put him out of the van and locked the doors, but
he began to pound on the vehicle. Now
panicked, and unable to reach her supervisor, she called 911.
The police came, and during their effort to restrain the
client, he hit an officer. He was then
handcuffed and prone on the parking lot.
He vomited, stopped breathing, and died. The cause of death was described as “situational asphyxia.” The coroner’s office said he died from a
heart condition. (A class action court
case, filed by his parents, is in progress.)
The News Channel 5.com (May, 2000, Nashville) report
says:
(The client) often spent weekends with his sister, who
lives in Nashville, and was able to sit in church on Sundays without much
fidgeting, his father said.
·
Individuals with less disabling Asperger’s Syndrome are
more able to fit into normal society.
Their language skills are relatively good and their social deficits not
as severe. Because they are not as
recognizable as classic cases, many do not get a diagnosis of autism until
later years. Most need considerable support, however.
A health reporter for The Tennessean, writes (Snyder,
5-7-00):
To some experts, (the client’s) death illustrates the need
for more careful monitoring and training to caregivers.
. . .
The Metro Police Department does not train its officers on
how to deal with autistic people.
Advocates for autism sufferers said (the client) might be alive today if
officers received autism training.
Parents hearing stories like this know all too well how
easily the anxiety in their child (especially their adult child) can escalate
and how quickly unknowing caregivers will resort first to the most dangerous interventions. These parents, knowing that few appropriate
services exist, are desperate to find a provider who has expertise in working
with their son or daughter. It is not
uncommon to find there is not one such provider in their state.
Providers, particularly of autism-specific services, have
extremely limited financial* ability to develop appropriate long-term or crisis
programs, which are expensive. Few
families can afford these high cost services.
And no insurance company covers the five-to-six figure annual expenses
of long-term care. Medicaid Waiver is
by far the major funding source, but the amount is woefully inadequate to serve
most people with autism who need it.
Parents are desperate.
Aging caretakers (often single mothers, often living alone with their
middle-aged child), knowing how difficult it is to adequately care for an adult
with autism, are often prisoners in their own homes, with little or no relief
in sight. They know how easy it would
be for untrained staff to be upset at the highly unusual behavior and poor communication
skills of their son or daughter, and how easily abuse can occur. They are leery about placement with a
provider if they can’t really trust the staff with their loved one—especially
if there is no one specifically trained and experienced in autism. After aging out of school, adult sons and
daughters with autism typically either sit at home (and need a caretaker) with
no programs, or participate in those which poorly serve their unique needs.
·
Providers of DD services nationwide are currently
experiencing a critical shortage of staff, due largely to low reimbursement
Medicaid rates. Several states are in
litigation about low pay for direct
care staff. Other states’ legislatures
have in the last few years appropriated funds specifically for direct care
staff.
Another major problem for individuals with autism (who
usually qualify as eligible* for Waiver), is that typically ICFs/MR and group
homes in the U.S. are programmatically and structurally designed for
individuals with mental retardation, and not for autism. Most of these services do not have staff
trained and experienced in autism and are generally at a loss when trying to
handle the unusual language, cognitive, behavioral and social deficits of
autism. If staff are ignorant of
successful ways of dealing with these deficits, behavior problems are likely to
be dealt with in a punitive manner which can quickly become severe and
dangerous—even lethal, as seen above.
It is at that point that parents are often called to come get their
child or adult because “he doesn’t fit our program.”
Once enrolled in the Medicaid HCB Waiver, the guidelines
provide basically a zero-reject
service, but if a client is out of control, an understaffed agency not skilled
in working with autism’s severe behaviors can discharge a person who presents a
significant challenge. (“He is a danger
to himself or others.” “Our program is
not set up to treat his condition.”).
It is easier and less expensive to discharge the hard-to-manage client
than to retrain, supervise, monitor and support staff for people with autism.
Reimbursement rates are typically low, so providers
naturally gravitate to serving clients with less intensive needs than those
with autism. When rates are the same
for all clients, it makes more business sense for providers to have 1 staff to
4 clients than 1 staff to 1 client, as is needed so often when the diagnosis is
autism and a highly individualized program is critical. This is especially true
for residential programs, where a client’s family can’t as easily be called to
come get their son or daughter who is “acting up” as happens in some day
programs and schools when the client/student is still living at home, close by.
In addition to low reimbursement, today’s economic climate
with its low unemployment makes it extremely difficult for providers to recruit
and retain quality direct care staff.
High turnover in direct care staff is a worrisome current trend
throughout the United States. One large
northeastern state recently reported a rate of 80 percent. This in turn drives up costs for recruiting,
hiring and training for which agencies get no* reimbursement. The constant changing of a large percent of
staff is disturbing and can be destabilizing, especially for individuals with
autism who have a high need for a consistent and predictable environment and
staff who understand their individual blend of peculiar characteristics. Without proper supports, people with autism
may not continue their personal growth—or worse, may lose the skills they and
their caretakers have worked so hard to acquire.
·
Currently, individuals with Asperger’s, who may also
have a diagnosis of Pervasive Developmental Disability (PDD), have a difficult time qualifying for the
Medicaid HCB Waiver. They typically
have relatively good speech and more social skills than classic cases of
autism, which may make them ineligible because they may not meet the Medicaid
HCB Waiver criteria for
ICF/MR level of care
In order to increase quality and quantity of post-school
adult services in the major life areas, these individuals must have supports which:
1. Treat all clients
with dignity and respect.
2. Provide for the
health** and safety of clients,
contribute to their well-being and happiness, inspire personal growth,
and recognize the uniqueness of autism.
In addition, these supports offer diverse and
individualized choices in areas such as spiritual, recreational and social activities.
3. Make all
caretakers, including providers, advocates and family members, accountable.
4. Provide access to
the most normal and the least restrictive social and physical environments
consistent with her or his needs.
5. Provide
opportunities to pursue meaningful employment, which would include access to
job coaches as needed.
Provide services in individuals’ communities—including
rural community settings, such as farms, ranches—in order to continue and
nurture family and community ties.
7. Base progress on
outcomes, such as defined by the Accreditation
Council. (See Appendix.)
8. Support families as
they face autism’s unique challenges and help them define their new role when
their child transitions into adult services.
9. Promote
autism-specific pre-service education with appropriate training for
professionals and para-professionals for adult services, especially in
community settings.
10. Promote community
awareness and education about Autism Spectrum
Disorders.
11. Promote research
into service provision to identify long-term, comprehensive (especially
residential, 24-hour) programs which make significant progress with adults, and
why. Then, disseminate the information
and provide funds for training nationwide.
12. Have adequate
funding so the above can be accomplished for all adults with autism, not just
the few who are fortunate enough to make the list of approved Waiver slots.
(For example, make Medicaid HCB Waiver an entitlement to services.)
Consistently provide services based on best practices.
Provide a system of accreditation which acknowledges
the intense and
long-term effort needed to provide quality, autism-specific
services and outcomes.
·
The HCB Waiver does reimburse costs when staff are
being trained to work with a specific client, usually after the basic training. **
Health services would include not only primary health care but so-called
ancillary services such as behavior
support, OT, PT, or speech therapy, which are often basic needs in autism.
By far, most individuals with autism live at home with
their families who, typically, want them there as long as possible or
feasible. The following are some of the
main ways residential services can be provided.
Assist families who want to keep their adult son or
daughter at home.
Depending on need, services would include activities such
as:
Training clients in self-help skills which would include
toileting, shaving, personal hygiene, showering, making the bed, dressing,
preparing meals or doing household tasks before leaving home for the day, or
assisting them with these activities when they return home from employment, day
programs or other daytime activities.
In the HCB Waiver program, training in these self-help skills is called
“residential habilitation.”
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Accompanying client and training during community
activities like grocery shopping, banking, buying clothes, walking, bicycle
safety, going to the library or attending religious services, and other
activities to increase adaptive behavior skills. The Waiver program calls these activities “day habilitation.”
Respite for the family, in-home or out-of-home so they can
have some time, for example, with their other children or family members, or
have dinner with friends, go to a movie, go on a trip. Some families use respite services for
events such as surgery or childbirth.
In most states the HCB Waiver program provides respite, usually the most
sought-after service requested by parents and families.
Companion attendants for those such as individuals with
Asperger’s who usually don’t need intensive care, but need a support person for
some parts of their lives. This might
include help in learning household skills for independent living or helping
with relationships. These might also
include learning how to be interviewed or interacting appropriately with
housemates, fellow students, neighbors, employers or family. Some need attendants in order to take
technical, vocational or higher education classes. This could include help with class schedules, taking notes, or
negotiation with instructors for homework assignments or test taking.
Out-of-home placement, 24-hour care.
These services should be in the least restrictive settings
which are feasible for normal community life—which could include farm or ranch settings.
1. Group homes of four
or less with adequate number of staff who are well-trained, supervised,
monitored and supported.
2. Apartments, or
condos, with support staff as needed, including appropriate monitoring and
support of staff by well-trained, experienced supervisors.
3. Access to home
financing for individuals (or their families) who choose to live in their own home.
People with autism don’t need wheelchairs, artificial
legs, or a guide dog. Their prosthesis
is people. Many—even most—need job coaches in order to be employed in
integrated work settings. Staying on
task, having appropriate work-related behavior (not making loud yawning noises,
responding properly when approached by others, not spending 20 minutes in the
restroom washing hands because of obsessive/compulsive behaviors, not engaging
in loud self-talk, managing anxiety) are typically the major issues with which
a well-trained job coach can assist someone with autism or Asperger’s to become
a good employee. Once they are
comfortable in the job, they often receive accolades from employers.
It is important that clients’ interests are taken into
consideration when looking for employment.
For instance, someone fascinated with numbers and who can quickly spot a
one-digit mistake on a page full of numbers might make an excellent data entry
employee at a bank or a finance department.
Someone with perfect pitch might be a piano tuner. Someone who is nonverbal and likes trains
might work at a train station.
Job coach services, also called supported employment, must
continue as long as needed, must be highly individualized, and not restricted
to a specific job or location. Some
states’ Division of Rehabilitation provide time-limited services. These services are also available under the
HCB Waiver, but Waiver is not yet an entitlement and may not be included in a state’s
plan.
Job-finding services must be an integral part of supported
employment services.
This service provides linkage and referral as well as
assistance to clients and families which ensure accessibility to needed
supports. It focuses on activities
which establish and monitor life-long services. It provides accountability and continuity of services which
promote meaningful choices, in a community-integrated environment.
Major responsibilities of the case manager include:
1. Assessment
2. Linkage and
Referral
3. Advocacy
4. Service Planning
5. Monitoring quality
of life, health and safety
6. Crisis response planning
7. Providing clients,
their families and/or their legal representatives with information about their
rights and responsibilities
·
These terms are currently used synonymously, but the
latter is considered by some to be more politically correct. The first term will be used in this paper.
Provide a reasonable case load* so case managers can do
their jobs adequately.
In autism, service needs are often intense, therefore a
knowledgeable, accessible case manager is critical to helping clients and their
families with appropriate service provision.
There needs to be a program of accreditation which is
sensitive to, and knowledgeable about the special issues facing providers of autism-specific
services to adults with autism—especially residential services.
Families or legal representatives want a national,
rigorous and appropriately qualified standard of service that will assist them
in judging the quality of programs in which they place their loved ones.
These days, parents with adult children have very little
choice of providers—appropriate or otherwise.
Because of the need for intense staffing and accompanying high costs of
programs, multiple choice is not likely to be available to most families in the
immediate future.
But, a nationally recognized set of standards designed
specifically for this population would go a long way to help parents know what
to look for and provide focus for their (and their professional colleagues’) advocacy
efforts.
Also, specially developed standards of accreditation for
autism would assist state and federal government agencies (as well as
legislative and judicial entities, caretakers and service providers) to
establish guidelines, regulations, and levels of funding necessary to provide appropriate
services to adults with autism.
For at least the last five annual business meetings of the
Autism Society of America, there has been a lively and instructive floor
discussion of the urgent need for the A.S.A. to produce a position paper on the
critical shortage of services for post-school adults with autism. This paper is the result.
·
Providers of case management services for people with
DD typically depend solely on their state’s MR/DD Medicaid funding. This brings us back to Item #12 under
“Principles of Service Provision” (p.11) which addresses adequate funding.
1. Considering that
most of these adult individuals are living in families, and assuming that
approximately three-to-four family members are significantly affected
(including, for example, not being able to work—or missing work—because of
caretaking responsibilities) by their relative’s autism, we are speaking of a
large number of citizens, equal to the size of Denver, CO.
Using even the conservative pre-1990s figure of 4 per
10,000 for the prevalence* of autism, today there are approximately 107,800
adults over 22 with autism in the U.S.
In an earlier study, Lorna Wing (1979) in England reported 15-20 per
10,000.
Using today’s prevalence figure of 1 in 500**, the
number of adults with autism is closer to 540,000.
In numerous studies comparing levels of stress in
families caring for individuals with a variety of developmental disabilities,
autism invariably ranks highest, or very high, as a stressor. Many families are at a breaking point.
Eric Schopler once said that a nation has three choices:
Do what’s right.
(Provide appropriate services.)
2. Do as little as we
can get by with. (Custodial care.)
Do what Hitler did.
(Dig a big ditch.)
As parents and professionals in this field, do we have
the will to do the first?
If so, we must build on what we already have, which is
more than any nation in the world, and continue to work for what’s right,
laboring into the night, if necessary.
·
Based on the U.S. Census (6-20-01) of 285 million.
** Autism Society of America (2000). The Advocate. September-October, 2000, Vol.
33, No. 5, p.3.
References and other related sections can be found at the
website:
http://www.autismservices.com/articles.html
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* * *
Police Arrest Teen In Death Of Autistic Boy
[By Associated Press.]
http://www.nbc6.net/cgi-bin/gx.cgi/AppLogic+FTContentServer?pagename=FutureT
ense/Apps/Xcelerate/View&live=true&c=NBCArticle&cid=NBCAKA8YLXC&p=NBCSFJZRB8
Police arrested a 17-year-old boy on a charge of
first-degree murder for the drowning death of an autistic boy, authorities said
Saturday.
Gorman Roberts Jr. told police that he pushed Jordan
Payne, 5, into a canal last Sunday while trying to break up a fight between
Payne and another boy, said Broward County Sheriff’s Office spokesman Hugh
Graf. Roberts, of Pompano Beach, told police he never thought of trying to pull
Payne out of the canal or calling for help. According to police, witnesses said
that Roberts laughed as the younger boy struggled to keep his head above water.
[By Associated Press.]
http://www.msnbc.com/local/wtvj/NBCHGW7YLXC.asp?cp1=1
A teenager charged with the drowning death of a young
child will spend another night in jail.
He and his family appeared in court on Tuesday. A teen
charged with drowning a 5-year-old autistic boy in a canal is developmentally
disabled and says he was not present at the time of the murder, his family
said. Gorman “Boobie” Roberts Jr., 17,
of Pompano Beach, was a crack baby who has grown up in broken homes, family
members said Sunday. Roberts told his family that he was not at the canal at
the time 5-year-old Jordan Payne drowned Feb. 10.
Two witnesses, ages 9 and 11, said Roberts was trying to
break up a fight between Payne and another boy when he pushed Payne into the
water. Then Roberts laughed as the
younger boy, who is deaf and mute, struggled to keep his head above water, they
said.
Roberts has been charged with first-degree murder. “Every
night he prays that the Lord know he did not go to that lake,” said 61-year-old
Carrie Mae Lovett. She described Roberts as “slow,” with the mental capacity of
a 10- or 11-year-old.
He is a high school senior in a special education program,
where he is relentlessly teased, she said. Family members said they were upset
that police did not contact them before questioning the developmentally
disabled teen. But Hugh Graf, Broward Sheriff’s Office spokesman, defended the procedure,
saying the case would be reviewed by the state attorney’s office and a grand
jury.
APRIL 21, 2002 - 12 Noon to 5pm
“The Power of ONE! I.D.E.A.”
Lenny Schafer, Editor@feat.org • CALENDAR EVENTS@feat.org
Michelle Guppy
Catherine Johnson PhD
• Ron Sleith •
Kay Stammers • Edward Decelie
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