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The Pennsylvania Statewide Taskforce on
Autism - Labels or Needs?
Why the good work should be
expanded...
to include "all",
those that are affected by the same or similar issues
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A disability is one
characteristic of a person. It does not define the person. |
The focus of
the Taskforce is on a label, rather than needs. It shouldn't matter if,
for example, sensory defensiveness or behaviors are a result of having
autism, attention deficit with hyperactivity, abuse, a neuromuscular
condition or other causes. What matters is meeting the needs according
to what is appropriate for the individual. No two people even with the
same diagnosis are the same. If the state is going to improve things
like behavioral supports, funding issues, transitions and such, they
should bring everyone to the table with the same issues and be
responsive to everyone's needs.
What
about other types of disability?
Those with the labels of cerebral palsy,
muscular dystrophy, brain injury or other types of disabilities should
also have their needs valued the same. If it is
the numbers, or how vocal or organized the parents are that makes the
autism group of greater importance, then what about other children whose
numbers are low and who don't have a large vocal parent group?
What if
there were multiple taskforces?
It would continue to pit parent groups against each other in a
struggle to obtain what their children need. It would be impossible to
have a taskforce for each of the many types of disabilities that exist.
Those without a diagnosis would never have their needs considered, nor
would they be eligible for things set up under different groups. It
would create a great deal of repetition of work and use of resources,
and cause greater fragmentation in the delivery of services.
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First there needs to be a taskforce for
everyone, and then subcommittees for unique needs. |
What would
be more equitable?
A cross disability statewide task force that addresses all the needs of
those with disabilities, including those with autism. A taskforce that
has all the stakeholders of the same needs being addressed coming to the
table. Every person with Autism, Down syndrome, Cerebral Palsy, brain
injuries etc, etc, is also unique. A system built to serve the
individual and adjust to the individual's needs is far more productive
then one that provides according to labels.
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Pennsylvania
is one of only 6 states that does not deliver services for
people with Developmental Disabilities (Persons with
developmental disabilities experienced the onset of
disability prior to the age of 22) At one time the state
was a leader in the field and now it lags far behind.
Instead of separate taskforces the state could be setting up
a coordinated, interagency system of services and supports
for persons with developmental disabilities and their
families. |
Isn't
there already a taskforce for others with disabilities?
No, there is a State Task Force for Education that only deals with
education issues and only for children with mental retardation.
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All people with disabilities are unique
and everyone has a right to have his or her needs considered. |
But
the needs of those with autism are unique.
All people with disabilities in PA need improved
organization, financing and delivery of services. All children with
disabilities need their services defined, someone to look at the
spectrum of services they need, and collaboration among primary care
physicians, providers, advocates, developmental pediatricians,
neurologists, speech pathologists, psychologists, psychiatrists,
educators, and other specialists involved in their care. This is not
unique to having a label of "autism", nor are social, communication,
behavioral, or sensory issues.
It's the
parents of those with Autism that worked so hard for this, why should
others have a say?
The taskforce can still address
the needs of those with autism, but it could be done based on the
"needs" and not just the label of autism. For example, a subcommittee
looking at sensory integration issues would gather input from any group
that has that need, whether it is a result of autism, injury,
neuromuscular condition or anything else.
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Separate agencies for
different disabilities creates a greater emphasis on determining
eligibility rather then providing services |
Won't
helping people with Autism help everyone else?
Its difficult to say, because the focus is only on autism. If waivers
are created, others with the same or greater needs would not be eligible
without the "autism" label. The statewide issues are only being examined
from the perspective of autism and only by the parents of children with
autism. Its really not appropriate to assume they understand and can
speak for everyone else's situation or concerns. This method did not
adequately meet everyone's needs through the Mental Health/Mental
Retardation agency addressing issues only from the perspective of those
with mental retardation or mental illness.
In the
long run won't improving things for people with Autism help others?
If the system is only responsive to one type of label, and there is not
an effort to be responsive to everyone's needs, there is no reason to
assume that in the long run it will help others. What's good for one
group isn't necessarily good for everyone else. The PARC Consent
Agreement was in 1971, and although it opened doors for children with
mental retardation who were previously denied an education, 28 years
later, it has not been effective in creating systems that meet
everyone's needs. This effort is not a legal battle like the PARC
Consent Agreement, its a group of people working together to find
solutions. If the goal is to improve things for all, then there must be
a direct effort made to improve things for all people with similar
needs, not just wishful thinking.
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A system can not attempt to meet
everyone's needs until everyone is represented at the table |
Everyone else has
services, shouldn't people with autism?
Yes, people with autism should have the services they need, but so
should everyone who doesn't have appropriate services. Services are
being cut for people of all disabilities and many don't fit into a
service system to begin with. People with autism, as do others with
disabilities, qualify for the Medical Access card if they meet Social
Security's definition of disability which focuses on levels of
functioning. Finding providers who accept the cards and can meet the
needs in a manner appropriate for the individual is an issue that should
be resolved by and for everyone. Get
the FACTS about who has services in PA!
School districts provide
limited therapy and do a poor job addressing behavior issues for all
children. Uncooperative IEP teams and poor behavior plans happen to
children with every type of disability. Supports and services are
inconsistent across the state for everybody. Only children with an IQ
score under 70 qualify for services from MH/MR, and the services are
minimal during the school years and there is a waiting list for adult
services. There are many people with disabilities who do not qualify
under MH/MR even though they have greater needs then those who do
qualify.
How could a group that
works so hard to improve things for children be wrong?
There is nothing wrong with group's motive, its the process of focusing
and making decisions based on a label and not needs that is the problem.
This group is in a perfect position to invite all stakeholders together
so services are improved for every person who has similar needs and not
just a select group based on a label. Statewide issues regarding
regulations, policies and procedures must be designed with input from
every group they effect. It doesn't matter how well intended a group is
in thinking of other people's needs, everyone deserves the opportunity
to speak for themselves and represent ideas from their own perspectives.
The taskforce is
already in place, why not just see where it leads?
It will be harder to change things once they get put into place then it
would be to address the issues from all angles in first place. It could
easily lead to two agencies (MH/MR and Autism) battling each other for
funds and resources, and together still not adequately meeting people's
needs. There could be circumstances where three different children have
the same need, but one may not have an MH/MR label or Autism and
therefore doesn't qualify for support. Another may qualify under MH/MR
and receive something totally different than the third qualifying under
Autism. Meanwhile, a great deal of effort, time, money and resources are
being use to determine where a person is eligible and to sort people
into categories, causing greater bureaucracy and fragmentation of
services. The alternative is to create a statewide system for
Developmental Disabilities that is responsive to providing support
because there is a need.
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When service delivery is compartmentalized into groups that
focus on sorting people and determining eligibility it is
more costly then a unified process that focuses on
individuals' needs. It is less efficient to utilize
resources for determining where people fit to be eligible
for what they need, verses simply focusing on meeting their
needs.
Separate
taskforces, agencies and groups addressing the same issues
based on disability labels are costly and inefficient
because they replicate processes and duplicate efforts. For
example, the Autism taskforce may research and analyze the
delivery of behavioral supports in the state. Next maybe
there is an Attention Deficit with Hyperactivity Taskforce
(ADHD) which looks at researches, analyzes and suggests
changes in the system based on their perspective. And then
another group and so on, and so on for each issue and each
group. The alternative is invite everyone that the issue
affects to the table in the first place. |
What can you do?
Write to your legislators!
Not sure who they are? Go to
http://congress.org/congressorg/officials/state/?state=PA&lvl=L Type
in your zip code with 4 digit code, or enter your mailing address.
Email or
write to Estelle Richman, Secretary of Public Welfare. She is the
founder and executive chair of the Autism Taskforce
erichman@state.pa.us . Tell
her that although her motives are good, we need a state that is
responsive to meeting the needs of "all persons with disabilities" whose
disability needs are not being met. One that is inclusive of, and not
exclusive to autism. Ask her to support a Developmental Disabilities
Office to meet all persons with disabilities needs, and to create a
taskforce that addresses issues with input from everyone that the issues
effect.
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intentions.
Since this information was first posted in 2003, a Bureau of
Autism was started. As expected Pennsylvania has duplication of tasks, with two
separate offices with overhead and operating costs (MH/MR "and" Bureau of Autism).
More people on the payroll directing similar things from yet another office
space for people with similar needs but based on labels. All parents of children
with all disabilities still have the same if not more difficulty getting
appropriate supports and services, from schools, doctors, medical providers and
agencies. Medical Access is even more difficult to find providers that accept
it. Children with disabilities still do not receive the appropriate supports and
services, regardless of levels of needs or eligibility. Additionally many
children with multiple needs are being ignored in the discussions if they do not
have a label to fit somewhere.
Children who qualify under MH/MR are denied supports and services
because the schools who also don't provide appropriate supports and services are
suppose to be providing that. Children exit schools to be on a waiting list for
adult services from MH/MR. It appears that if your child is not very verbal, has
sensory issues, social and behavioral issues, it may be better to seek an Autism
label to assure their needs are met now and as an adult.
It is too bad that the state can not or will not create one
system to meet the needs of all Pennsylvanians with disabilities based on the
individual's needs. There would be far less paper work, labeling, duplication of
effort, eligibility shuffling, and far more focus on supporting people (which
includes people with autism and everyone else with similar levels of needs).
Instead we now need to speak up for each person by asking for a Bureau of
Cerebral Palsy, a bureau of brain injury, bureau of Torette's syndrome, bureau
of undiagnosed, bureau of developmentally delayed, bureau of neurological
disorders, bureau of acquired disabilities, bureau of each and every other
condition and syndrome that faces the same level of difficulties in getting
appropriate supports and services so that No Child is Left Behind!
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