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Copyright image - compass and saying, don't do something to a person with a disability that you would not do to a person who doesn't have a disability


Pennsylvania Autism Taskforce
Autism Taskforce Pa Facts System v. Community

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

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. 

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. 

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. 

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. 

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. 

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.

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 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 . 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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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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Last modified: 06/29/10

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