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February 18, 2002
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What is to become of our children as adults? The most disturbing part of this question
for many young parents today usually centers on who will take good care of the
son/daughter after parents are gone. Some of us are so caught up in early
intervention treatments and the quest for cures that we fail to invest wisely
in longer-term scenarios possible, if not probable. It seems difficult to imagine the future because it holds so many
unknowns, or does it? It is not middle
age when our adult children become seriously vulnerable. It is the day they become legal adults. We need not look far to see what is in store
for our children. We need only to visit
the life conditions of today’s autistic adults, and the news is not good.
The leading edge of today’s autism baby boom began in the
early nineties and has yet to peak.
This population tsunami is now entering adolescence. At the end of a decade, baring the discovery
of a cure, these children will be entering legal adulthood only to find the
neglect of very few support services.
Parents have 10 years to put into place the reforms our
children will need as adults if there is any hope for them to live as
independently as possible, as they deserve to live. Reforms must start happening now, and that means it starts with
advocating for today’s adult autism population. The National Crisis in Adult Services for Individuals with Autism
report, adopted last year by the Autism Society of America provides an outline
for the beginnings of such a project.
The report effectively enunciates what is to be done and why it has to
be done. But it does not tell us is how
to get there. That is why we’ve been “called
here to attend this meeting”. This is the call to action. The Ghost of Autism Future is really the
Ogre of Autism today and we must, and can, fix this.
The Report will be serialized in three parts over the next
week, but is also available now 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 (While you’re there, check out the new
Advocate Magazine, it alone is worth joining the ASA http://www.autism-society.org/membership/Advocate/advocate.html)
Congratulations to Ruth Sullivan and company for this
timely and excellent
work. More on the
credits later. -LS
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.
There is now a national crisis in services to adults with
developmental disabilities, especially residential services, and especially to
those with autism. The most critical
issue is woefully inadequate funding.
We cannot allow another generation of our adult children to go without
the vital services that any humane society knows is necessary for a life of
dignity and worth.
This paper presents some strong recommendations and a call
to action.
Only slightly more than two decades ago these
aged-out-of-school adult dependent children would have been cared for by a
stay-at-home mother or other female relative.
Today, however, these traditional caretakers are in the work force,
contributing to the current norm of the two-income household. This trend has now merged with another: the
expectation of parents whose children have been in special education all their
school lives (through age 22) that society will also assist them with adult
services as was done, since 1975, with educational services. Their children had a Congressionally
mandated right to public education, and a strongly worded legislative support
of a right to file grievances if parents felt they were not getting a free and
appropriate public education.
These students leaving school no longer have a mandated
right to services. Their parents now
face several different and complicated systems, such as vocational
rehabilitation, public and private agencies providing a variety of funding and
services, the latter typically not addressing the needs of their children. Even more daunting is the intricate and
cumbersome Medicaid system which is usually their only hope for
assistance. Some lucky families will
have a good case manager whose case load allows more help than a few phone
calls. In almost all cases, meaningful
case management services come only if an individual can get funding from a
Medicaid Waiver slot. (More on this
later.)
2
But for individuals with autism, it is not a matter of
only referral. Often there is no
appropriate program (especially residential) to refer to anywhere nearby, or
even in a contiguous state.
There are roughly 25 agencies in the U.S. who have highly
specialized programs (especially residential) for adults with autism. These community agencies are committed to serving this population,
but inadequate Medicaid reimbursement rates and resulting low salaries cause
high staff turnover rates. Providing
quality services is a daily struggle.
Expanding to include more clients is difficult to impossible.
Agencies report a constant stream of
calls from parents crying (sometimes literally) for help for their child.
Unlike the nation’s educational system, where daily,
hands-on special education services are provided by teachers with university
degrees in the field, no equilavent professional, hands-on staff with
preservice training is readily available in the autism field. Those few degreed staff have typically
started working at an autism agency during their college years and stayed on
after graduation until they can find a better paying job or move up in the
agency.
A few universities around the U.S. offer one course in
autism. Only five, at this writing,
offer more than one, such as “Introduction to Autism,” “Classroom Strategies in
Autism.” One state, West Virginia,
offers a summer course for autism mentors (autism classroom aides). No undergraduate degree in autism is yet
available, to the knowledge of this author.
As though things are not bad enough, all indications are
that the prevalence of autism is on the rise.
The California Developmental Services System recently reported
(Kleffman, S. 2001) that during the 88 days from January 4, 2001 to April 3,
2001, 760 new children were professionally diagnosed with DSM IV* autism. These new cases represent an increase of 107
more children than reported in the previous record high for a quarter.
The report states that:
Autism now accounts for an unbelievable 37% of all the new
cases coming into the California Developmental Services System...These reports
do not include any autism spectrum disorder such as PDD, NOS, Asperger’s, Rett,
Fragile X ...[usually stated as PDD-NOS]
·
The Diagnostic and Statistical Manual is published by
the American
Association and has become the standard document to define
autism and other mental
disorders. This is their fourth edition.
Until the early 1990s, autism was said to be a rare
disorder, approximately 4 per 10,000.
The Autism Society of America (ASA) is now using the figure of 1 per
500.
This growing number of individuals with a devastating and
crippling disorder is no less than a public health crisis which needs immediate
and serious attention at the highest levels of government and society.
Before we can propose a solution to the problems, it is
important to understand how much has been accomplished in the past and what the
present situation looks like.
Throughout the country, adult services for individuals
with developmental disabilities (DD) are funded mainly by the Medicaid* Home
and Community-Based (HCB) Waiver program, which provides federal funds to states,
with a state match. The ratio of match
depends on the economy of each state.
In West Virginia, for instance, the match is less than 25 cents in state
funds for every one dollar of federal funds.
In New York, the match is 50 cents state funds to one dollar federal
funds.
The term “Waiver” came about in 1981 when the HCB Waiver
was authorized by Congress as the result of a strong and nationwide movement
for community-based services. This
legislation followed a decade-long series of high profile and successful
class-action court cases against mental institutions, beginning with the impact
of Wyatt V. Stickney (1972), in Alabama.
A patient named Wyatt died after attendants deliberately inserted so
much fluid (via enemas) into his intestines that they ruptured. The case alerted the nation to the ongoing
and egregious violations of civil liberties taking place in many state (and
other) mental facilities. This effort
was also supported by the tireless advocacy of parents and their professional
colleagues in the field of developmental disabilities, as well as many young
lawyers who threw themselves into winning these landmark court cases.
Prior to the 1980s, state and federal funds for individuals
with DD went
only to state
institutions (mainly state “hospitals” for mentally ill or impaired). If a
family requested
·
Medicaid is Title XIX of the Federal Social Security
Act.
assistance, their only choice was placing their loved one
in a state institution. There were
almost no community services except a few private schools or day programs for
individuals with mental retardation.
The staff were not trained or experienced in working with the unusual
(and often severe) behaviors and highly challenging learning styles of people
with an autism diagnosis. Spaces were
limited and anyone presenting with a diagnosis of autism was often not
welcomed, or refused admission.
In 1974 a directory of services was published by the
National Institute of Mental Health (NIMH) entitled U.S. Facilities and
Programs for Children with Severe Mental Illnesses – A Directory, 1974. (See
References.) The following excerpts
from the preface demonstrate the state of affairs (p. v):
There is a rising social consciousness about the strange,
tragic and
severely handicapping mental illness [autism was then still
classified as a
mental illness] of early childhood. But there are still pitifully few
services (and still fewer appropriate services) available
anywhere at any
price.
and
Although the growing list of facilities is heartening, we
caution parents to read the entries carefully.
If, for instance, a child’s label is autistic, he may not be eligible—even
in many state mental hospitals with a children’ s unit; or, even if eligible,
there might be a quota for children with this diagnosis.
The 1977 edition of the directory noted (p. v):
The major change is for a happy reason. Public school programs are proliferating...While
it is true there are...few such programs in the country, the sudden growth from
zero a few years ago to 40 new classes this year in Ohio alone is exciting.
And importantly,
Unfortunately, there is yet no official way to evaluate
the programs in this directory. Parents
(and a growing number of caring professionals) are still very much on their own
to make judgments about the quality of a specific facility.
This last issue—evaluating a facility—will be discussed
later in this paper.
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When federal Medicaid monies became available to serve
people with DD in institutions, many states “Medicaided” these hospitals* by
setting up services which would meet the new federal guidelines. No longer would these funds support only
custodial care. “Active treatment” became a top criterion for programs. There was a new designation called
Intermediate Care Facility for the Mentally Retarded (ICF/MR). Before that, federal funding to states had
been provided for individuals without mental retardation in skilled nursing
facilities, called Intermediate Care Facility/Skilled Nursing Facility
(ICF/SNF). The main criteria for
services was that without them the individual was at risk of
institutionalization.
Much of the bias one hears, even today, against ICFs and
group homes, was generated by the development in the 1980s of large ICFs/MR,
(congregate settings) housing several hundred or more residents. Some, called “group homes,” housed 20 or
more. These days an increasing number
of providers already operate small (three person) group homes, but the stigma
is hard to shake.
Because these ICFs/MR were first set up at state hospitals
and are (or were) in large institutions, they were based on a medical model,
which typically have on-staff physicians and nurses, occupational therapists,
physical therapists, sometimes even dentists.
This explains the requirement in Medicaid’s Home and Community Based
Waiver program to have these professionals attending Individualized Program
Plan (IPP) meetings and signing the sign-off sheet as though they were down the
hall and available for meetings. In a
truly community-based program, clients are served by health professionals in
the same way as people without disabilities are served—at professionals’
private offices, scattered around our communities.
In order for a state to receive federal HCB Waiver funds,
it must provide the federal Health Care Finance Administration (HCFA) with an
acceptable state plan. These plans vary
from state to state, so it is important that families, professionals and
advocates know what is in their own state plan, which is public
information. Once HCFA approves the
plan, the state must apply for a renewal periodically (e.g., every 3-5
years). Amendments can be requested at
any time.
As the community integration movement grew, Congress was
asked to waive some of the Medicaid funds going only to state institutions so
that services could begin in community-based settings. That Waiver legislation passed in 1981 and
the program has grown exponentially since then. In fact, nine states—Alaska, Hawaii, New Mexico, West Virginia,
New Hampshire, Vermont, Rhode Island, District of Columbia, Minnesota—have
closed down all their institutions for people with DD (Braddock, 1998), almost
always as a result of successful consumer-driven class action court cases. Community integration is firmly in place and
seems here to stay.
·
The term “hospital” was deemed a more politically
correct term than “asylum” or “home for incurables,” as was common before c.
1950.
At first the HCB Waiver was available only to individuals
who were in institutions so they could return to their communities. The first group to receive these funds were
patients with “breathing problems.”
Later, people with physical disabilities were included. In 1987, the funds were opened to people
with mental retardation, and shortly thereafter to all with developmental
disabilities, whether or not they had ever been in an institution. Again, the main criterion for eligibility
was risk of institutionalization if they did not get these services. Also, an individual must require the
intensity of training and support that is received in an ICF/MR setting.
Today 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.
States now have embarrassingly long waiting lists, and too
often, little or no reasonable movement toward additional Waiver slots for
funding the needed services. One state
recently froze all ICF/MR and Waiver funding for several years, which spawned a
class-action court case against it. The
state’s Department of Health and Human Resources and many other states are in
litigation, a major issue being entitlement and lack of movement of people off
waiting lists into community services.
Advocates in some states boast having closed all their DD
institutions, and though that was a historic, good, and important
accomplishment, many of these advocates dropped out of the picture after their
victory and did not keep pressures on legislatures and state agencies to
provide permanent and adequate funding for community services. With the safety net of institutions gone
(such as they were/are), these and other states often have no real crisis
services. When a family can no longer
handle their relative at home (for example, because of no or inappropriate
services, divorce, death of a spouse, illness, old age), negative behavior
escalates, people and property get damaged, the use of psychotropic drugs
increases and, not uncommonly, physical restraints are used. At this stage, clients—especially those with
autism—are too often abused and injured.
Some have died.
[The full report is at this website: http://www.autismservices.com/articles.html
]
·
The original legislation in 1975 was titled “Education
for All Handicapped Act.”
In 1991, the name was changed to “Individuals with
Disabilities Education Act, (I.D.E.A).”
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* * *
Abnormal Measles Serology and Autoimmunity in Autistic
Children
Abstract 702
Vijendra K Singh
Courtney Nelson
Utah State University,
Logan, UT
[Not yet available online.]
Immune factors such as autoimmunity may play a causal role
in autism. We recently showed that many
autistic children have autoantibodies to brain myelin basic protein (MBP) as
well as elevated levels of measles virus antibodies. To extend this research
further, we conducted a serological study of measles virus (MV), mumps virus
(MuV), rubella virus (RV), cytomegalovirus (CMV), human herpesvirus-6 (HHV-6),
measles-mumps-rubella (MMR), diptheria-pertussis-tetanus (DPT),
diptheria-tetanus (DT) and hepatitis B (Hep B) and studied correlations with
MBP autoantibodies.
Antibodies were assayed in sera of autistic children
(n=125) and normal children (n=92) by ELISA or immunoblotting methods. We found
that autistic children have significantly (p=0.001) higher than normal levels
of MV and MMR antibodies whereas the antibody levels of MuV, RV, CMV, HHV-6, DPT,
DT or Hep B did not significantly differ between autistic and normal children.
Immunoblotting analysis showed the presence of an unusual
MMR antibody in 60% (75 of 125) of autistic children, but none of the 92 normal
children had this antibody. Moreover, by using MMR blots and monoclonal antibodies,
we found that the specific increase of MV antibodies or MMR antibodies was related
to measles hemagglutinin antigen (MV-HA), but not to mumps or rubella viral
proteins, of the MMR vaccine. In addition, over 90% of MMR antibody-positive
autistic sera were also positive for MBP autoantibodies, suggesting a causal
association between MMR and brain autoimmunity in autism.
Stemming from this evidence, we suggest that an “atypical”
measles infection in the absence of a rash but with neurological symptoms might
be etiologically linked to autoimmunity in autism. (Supported by grants from the
James Dougherty Jr Foundation, Unanue Foundation, Lettner Jr Foundation, Autism
Autoimmunity Project and Autism Research Institute)
Journal of Allergy Clin Immunol 109 (1):S232, 2002 (January).
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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