AUTISM AND THE MENTAL RETARDATION AND MENTAL HEALTH SERVICES SYSTEMS
IN PENNSYLVANIA
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Beginning in the 1970s, federal
disabilities law abandoned "mental retardation"
as a category in favor of "developmental disability."
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In an enlightened attempt to establish a system of community-based
services as an alternative to state institutions, Pennsylvania enacted
the Mental Health and Mental Retardation Act (MH/MR Act) in 1966.
Though intended to cover everyone with a severe disability, the Act
only covers persons with “mental retardation” (individuals with IQ
scores below 70) and persons with “mental illness.” These criteria
mean Pennsylvania’s MH/MR Act excludes many people with autism because,
since 1980, autism is no longer classified as a mental illness, and
recent developments in communication technology and alternative ways
to test IQ suggest that most people with autism do not have mental
retardation. Nevertheless it is clear that they have a lifelong need
for some degree of supports and accommodations.
Beginning in the 1970s, federal disabilities law abandoned “mental
retardation” as a category in favor of “developmental disability,”
a classification based on functional criteria. Instead of using an
IQ score below 70 to determine that a person is disabled, a developmental
disability is confirmed if the person has substantial functional limitations
in three or more of the following areas of major life activity: self-care,
receptive and expressive language, learning, mobility, self-direction,
capacity for independent living, and economic self-sufficiency. “Mental
illness” is diagnosed according to criteria from the Diagnostic and
Statistical Manual (DSM) of the American Psychiatric Association.
Autism, once considered a mental illness, is now classified by the
DSM as a “developmental disorder.”
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Most persons with autism
in Pennsylvania are eligible for services under federal Medicaid
rules, even though many are ineligible for services under
the state’s MH/MR Act.
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Following this trend, federal funding for long-term care, under the
Medicaid system, uses functional criteria to determine eligibility.
As a result, most persons with autism in Pennsylvania are eligible
for services under federal Medicaid rules, even though many are ineligible
for services under the state’s MH/MR Act. ALAW’s 1998 report, “The
State of Autism Services in Pennsylvania,” pointed out the entitlement
of people with autism to federal Medicaid long-term care funding.
This led the Department of Public Welfare (DPW) to create the Autism
Pilot Program.
To avoid eligibility problems within the Office of Mental Health and
Substance Abuse Services (OMHSAS) or the Office of Mental Retardation
(OMR), DPW assigned the Pilot Program to the Office of Social Programs
(OSP). In most other states, autism services would be handled by a
 developmental
disabilities services agency, or a mental retardation/developmental
disabilities services agency. But since Pennsylvania is one of the
few states not to have changed to a developmental disabilities system,
people with autism, because their primary disability is not mental
retardation, are properly assigned to the Office of Social Programs.
OSP is the agency in Pennsylvania already serving persons, such as
those with cerebral palsy or epilepsy, who have what the federal Medicaid
system calls an “other related condition.” OMR Bulletin 00-00-09,
effective November 1, 2000, establishes as a policy for OMR that persons
in Pennsylvania with “other related conditions” should be referred
to OSP.
Because federal Medicaid funding has an institutional bias, most state
programs using Medicaid long-term care funds develop “waivers” to
provide individualized home and community-based services to eligible
recipients. An existing Medicaid “waiver,” administered by the Office
of Social Programs, is being used to fund the Autism Pilot Program.
The Autism Pilot Program is clarifying the range and types of services
needed, appropriate funding levels, and provider and staff qualifications
and training requirements, all of which facilitate the development
of an autism-specific waiver.
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Trying to fit individuals
with autism into programs intended for people with mental
retardation or mental illness usually does not work.
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Turning the Autism Pilot Program into an adult services system
also requires passage of a state law. This is crucial because, in
Pennsylvania today, adults with autism do not have access to appropriate
services or supports. Trying to fit individuals with autism into
programs intended for people with mental retardation or mental illness
usually does not work, and the “misfits” with autism are expelled
from program after program. They become crisis cases, at great risk
of costly long-term institutionalization. Yet neither mental health
nor mental retardation institutions treat persons with autism appropriately.
Instead, behavior problems become exacerbated, functioning deteriorates,
and increasing levels of physical and chemical restraint are applied.
Institutional placement is a risk for all people with autism. Even
families who have continued to maintain their sons or daughters
at home through adulthood face the prospect of institutionalization
when caregivers die or become incapacitated. However, if given appropriate
individualized supports, adults with autism can live and work productively
in ordinary neighborhoods and contribute to society.
Institutional placement is
a risk for all people with autism.
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