Pennsylvania Autism Task Force - Needs of Children (Ages 6-12) Subcommittee Report - December 2004

Autism Task Force Report
Disclaimer

The entire content of the Autism Task Force Final Report (December 2004) was researched, created, and composed by members of the Pennsylvania Autism Task Force with support from the Pennsylvania Department of Public Welfare. Any use, reproduction, and/or distribution of the content and/or work product of any of the information or testimonies contained in the report without the express written consent of the chaired leadership of the Pennsylvania Autism Task Force is prohibited. Please respect the countless hours of work, dedication, and energy that our membership has put into the report and do not utilize or employ any of the information and/or testimonies contained in the report without prior permission. If you have any questions regarding the use of the content and/or work product contained in and associated with this report, please contact the Secretary’s Office of the Department of Public Welfare, Commonwealth of Pennsylvania, at (717) 787-2600, Monday through Friday, from 8:30am to 5:00pm Eastern Standard Time. You may also request information regarding authorizations or permissions by contacting us in writing at the following address:

Office of the Secretary
Room 333, Health and Welfare Building
PO Box 2675
Harrisburg, Pennsylvania 17105

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I. INTRODUCTORY MATERIALS

A. List of Members

Co-facilitators:

Janet Formichella & Lori McMaster

Committee Members:

Jane Brown	Rose Huntzinger	Erin Olsen
Susan Coursey	Joe Hurd	Gwen Shoemaker
Jan Cunningham	Natalie Krebs	Michelle Spohn
Deborah Delp	Rebecca Klaw	Nicole Sturla
Amiris DiPuglia	Gloria Lance	Carrie Todd
Ted Fallon	Annmarie Lynch	Sabra Townsend
Marla Jo Green	Marie McClay	Arleen L. Wheat
Randi Grimes	Tara McHale	John Sportelli-Wright
Theresa Harding	Wendy McSparren
Marilyn Hendricks	Jaquelyn O’Flynn

B. Mission of the subcommittee

The mission of the subcommittee is to identify the current state of educational and behavioral health services in the Commonwealth of Pennsylvania as they relate to autistic children who are five to twelve years of age; to identify the problems with existing practices; and to identify potential solutions.

C. How and how often did you meet?

The subcommittee initially met on July 26, 2003. The subcommittee members have since held web chats, e-mailed, and posted summaries through a Yahoo group created via the Internet. Meeting in person has not been possible due to the geographical distance between committee members and time constraints. In addition, the Sub-committee held two 2-hour joint telephone conference calls on September 7, 2003 and June 1, 2004 to discuss all of these issues.

D. How was the report formulated?

Subcommittee members submitted draft outlines to the Subcommittee facilitators, who incorporated these written submissions, as well as the input received during the telephone conference calls, and prepared a Draft Report Outline. The Draft Report Outline was then distributed to the individual Subcommittee members for their review and approval. The report was then presented on October 11, 2003 at a facilitators meeting in Harrisburg. Comments and questions raised at that meeting were then presented to the sub-committee. Comments were then incorporated in the second presentation of the report in Harrisburg on November 22, 2003. All input from members was submitted, and the co-facilitators drafted the report and distributed it to the committee members for changes and approval.

II. WHAT IS THE STATE OF CURRENT PRACTICE FOR CHILDREN LIVING WITH AUTISM?

A. Family perspective

What services do they receive in education, Medicaid and other system? What step must they take to get them?

1. Education: Statutory Requirements of Special Education

The Individuals with Disabilities Education Act (IDEA), 20 U.S.C. 1400, et seq. and Chapter 14 of the Pa. Regulations govern special education.

A child’s eligibility and need for special education and related services is first determined through an evaluation process which determines if a child is a "child with a disability". The definitions of disability categories specifically include "autism". Under IDEA, a "child with a disability" is entitled to a free appropriate public education (FAPE) if and only if, as a result of the disability, the child needs special education and related services to benefit educationally.

If the evaluation report determines that the child is a child with a disability and is in need of specially designed instruction, then the Individualized Education Plan (IEP) process commences. The IEP must be developed within 30 calendar days and a "Notice of Recommended Educational Placement (NOREP) is developed. Parents may approve or disapprove the NOREP. The IEP is to be implemented as soon as possible, but no later than 10 school days after its completion.

Children with disabilities are to have available to them "a free appropriate public education which is designed to enable them to participate fully and independently in the community, including preparation for employment or higher education."

To the maximum extent appropriate, children with disabilities are to be educated with children who are not disabled.

Related services (such as speech therapy, occupational therapy, physical therapy, transportation, etc.) must be provided if the child needs them in order to benefit from or access his special education program. Related services are often provided via the intermediate unit or outside contractors hired by a school district.

A child’s reevaluation must occur every three years for disabled children other than MR (which is still 2 years).

2. Medical Assistance.

Medical assistance provides coverage of medical and mental health services for persons less than 21 years of age, and includes services such as mental health wraparound services, physical, speech or occupational therapy, shift nursing, in-home personal care services, diapers, pull-ups, prescriptions and transportation to and from medical appointments, and nutritional supplements for children less than 2 years of age.

Not all children with a disability or with an IEP qualify for Medical Assistance. The Social Security childhood disability standards, or the "Childhood Listings of Impairments" determine eligibility. Section 112.10 entitled "Autistic Disorder and Other Pervasive Developmental Disorder" provides that a child is eligible when there are qualitative deficits in the development of reciprocal social interaction, verbal and nonverbal communication and in imaginative activity; and a markedly restricted repertoire of activities and interests.

More information about Medical Assistance eligibility and how to apply can be found at http://www.dpw.state.pa.us/LowInc/MedAssistance/MAEligibility/003670295.htm.

Medical assistance is provided via a mechanism designed to serve children with mental illness or mental retardation. As a result, the medical necessity criteria, mechanisms for providing services, the definition and identification of covered services, service delivery criteria, reporting standards, and rate structures are grossly ill suited to meet the needs of children with Autism Spectrum Disorder (ASD).

Children with ASD may receive Wraparound services, which may include a Behavior Specialist Consultant (BSC), Mobile Therapist, or Therapeutic Support Staff (TSS). An evaluation is done every four months by a licensed psychiatrist or psychologist to determine the medical necessity of these services, and a prescription is written for a specific number of hours of service from a clinical professional. The provider must deliver the prescribed hours of service in a full and consistent manner. Once the need is determined a number of hours are approved by the state. Services must be deemed medically necessary.

If Wraparound services are provided in the school, and if a child’s IEP team determines that such Wraparound services are necessary for the child to receive a free appropriate public education ("FAPE"), the district will become responsible for providing such services if the child’s Wraparound agency withdraws their services. See Basic Educational Circular 22.

3. Other Related Services

Family Driven Support Services (FDSS)

Children who qualify as Mentally Retarded are eligible for Family Driven Support Services (FDSS) through their Base Service Unit. These funds are fixed annual amounts which are distributed to families to help pay for caregivers, home health, recreation, family education, adaptive equipment and camps, therapeutic materials such as weighted blankets, and safety equipment such as door alarms. Families are currently on waiting lists for these funds.

The annual amount of FDSS funds are subject to change, and seem to decrease annually. Parents pay for the services/items and are then reimbursed by the coordinator of FDSS funds. Even though a family is allocated a certain annual amount of FDSS funds, these funds are often depleted before the end of the fiscal year. Therefore reimbursement for qualified expenditures for families is not guaranteed after the funds run out, even if the reimbursement requests were filed in a timely manner.

Family Support Services (FSS)

Children who qualify as Mentally Retarded may also receive additional funds from Family Support Services (depending upon the County) for the services and items listed above.

III. WHAT PROBLEMS EXIST WITH CURRENT PRACTICES?

What are the barriers to getting existing services? What services should be available but are not?

A. Family perspective

1. Education

The major obstacles parents encounter in attempting to exercise their children’s educational rights include the following:

Entitlement to Special Education Services

A child’s eligibility and need for special education and related services is first determined through an evaluation process which determines if a child is a "child with a disability". The definitions of disability categories specifically include "autism". This definition could actually serve as an obstacle to some children (such as those with Asperger’s Syndrome or Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS)) seeking special education services.

Inconsistency in the Availability and Quality of Special Education Services

While the "steps parents must take" to access special education services are legislatively determined, in reality, there are great differences between urban and rural areas, and among school districts in terms of how difficult it is to obtain and keep quality educational services. Districts often dispute the necessity of such services and attempt to limit the number of hours of services children receive. Although our children are entitled, to the extent appropriate, to be educated with children who are not disabled, there is great inconsistency throughout the state in terms of school districts’ commitment to inclusion, and their capacity to appropriately effectuate inclusion through the use of qualified school personnel. Despite the legislative mandates, there is a continued cultural reluctance or even hostility to the concept of inclusion. As a result, many schools resist full compliance with the requirements of IDEA/Chapter 14, or attempt to minimize the type and level of educational and related services they provide.

Children with autism receive educational services in a multitude of ways that have resulted in services of inconsistent quality and in a lack of accountability. Many children are also inappropriately placed in behavioral support classrooms that are designed to serve children with psychiatric, emotional and/or behavioral problems. Some children are educated in "autistic support classrooms," "life skills classrooms", "support classrooms", and via dual placements where they receive academic instruction and/or related services from both the school district and the intermediate unit. Dual placements may result in power struggles, inappropriate shifting of responsibilities, and school districts failing to take "ownership" of our children. Parents of higher functioning Autistic children find that, due to large class sizes, lack of adaptation of curriculum, lack of teaching social skills, etc., it is difficult for this group of children to learn in the public schools.

Schools have difficulty addressing the entire Spectrum of Autism. Many school tend to use a "cookie cutter" approach to teaching children with autism instead of providing a truly Individualized Education Plan.

Parents are also more frequently reporting that school districts are requiring them to sign non-disclosure agreements which prohibit the parents from divulging information regarding the nature and/or quantity of services provided pursuant to their child’s IEP. Presumably, such agreements are intended to prevent other parents from requesting similar services on behalf of their disabled child.

Required related services (such as speech therapy, occupational therapy, physical therapy, educational audiologists, etc.) are often not provided on a timely basis, if at all, due to the over-reliance on outside contractors who come to the school irregularly. Districts also consistently attempt to limit the number of hours of related services a given child receives. Many school districts contract with their Intermediate Units for these related services, and there is often a shortage of staff to cover many of these students.

Lack of Understanding of Autism Spectrum Disorder (ASD)

There is a lack of understanding by administrators and teachers regarding autism spectrum disorder and the need for instruction that is specially designed to fit the needs of children with Autism Spectrum Disorder (ASD). ASD is a very different diagnosis than many other diagnoses a school might encounter because symptoms do not always affect the cognition required to master content. Instead, ASD usually affects the process of mastering content and/or being successful in school. As a result, many regular education teachers are not equipped to serve autistic children and therefore overly rely upon the TSS or other third parties for the provision of educational services. The lack of understanding of ASD students actually instigates "problem behaviors". For example, many educators do not know that ASD children interpret language quite literally. For example, a teacher once complained that an ASD student treated her disrespectfully when she asked the class to proceed to the door and to "hop to it". The ASD child, naturally, did exactly what the teacher requested- he hopped to the door. What was perceived as an act of disrespect was actually an attempt to do exactly what the teacher requested.

Parents wishing to secure the best services for their children are sometimes compelled to accept a more restrictive placement (i.e., non-inclusive learning support classrooms) in order to access the more extensively trained special education teachers. Parents should not have to choose between inclusion and quality education.

In addition, children with ASD are frequent targets of bullies in school settings. It is imperative that school districts establish research-based "anti-bullying" policies to protect special needs students, and the general student population.

School Districts’ Opposition to Services Which They Deem To Be "Community Based"

ASD children are entitled to "participate fully and independently in the community, and to be prepared "for employment or higher education." However, school districts lack the initiative and the vehicles necessary for our children to accomplish these goals.

Districts frequently object to any educational goal that they perceive as "community based." A catch-22 is created because the very deficits associated with autism impair a student’s ability to integrate into the community. An autistic student will invariably possess qualitative deficits in the development of reciprocal social interaction, verbal and nonverbal communication and in imaginative activity; as well as a markedly restricted repertoire of activities and interests. This is especially true for students with Asperger’s Syndrome, who frequently possess high IQ’s, yet have significantly impaired social skills. School districts should not be permitted to resist providing services to address those deficits merely because they affect the child beyond the schoolyard.

Social skill groups and pragmatic language groups are almost non-existent. Schools are not offering opportunities for students with autism to learn social skills in a group setting. Parents have been told, "The school district cannot mandate non-IEP students to participate in these groups."

Lack of Interdisciplinary Cooperation and Accountability

Schools districts often either resent the input from third parties such as Behavior Specialist Consultants (BSCs), or they over rely upon the intermediate unit, parents, private therapists and Wraparound providers to address issues that, in fact, are the responsibility of schools. Schools alternately over-rely upon, or resist, the assistance provided by Wraparound providers. Although it is the legal obligation of schools (and not the mental health industry) to provide FAPE to autistic children, because schools are ill prepared, they continue to rely upon outside contractors and/or Wraparound providers to achieve inclusion and to provide qualified student aides. Many schools resist working cooperatively with private therapists and Wraparound providers to ensure consistency between the school and home programs.

Entry Into Kindergarten

Parents are often unaware that early intervention services may be provided until the age of 6, and are unfairly pressured to place their child in kindergarten at the age of 5. Parents are unaware that school age does not begin until age 8 and ends at age 17 or graduation. Chapter 11, Pa. Code § 11.13.

Extended School Year Services

Extended School year ("ESY") is provided inconsistently from one school district to the next. Many schools have limited funds for ESY, therefore the criteria for the services also vary. Children with significant deficits could use the summer to gain skills in academics, functional language and social skills – all things necessary for success in the classroom. Eligibility for ESY should not be dependent on a loss of skills for children who already significantly lag behind their peers. Services should not be limited to academic areas. Children with ASD need constant work on behavior, language, social training, and occupational therapy. Furthermore, many children with ASD do not transition well, and three months away from the classroom make the transition in September more difficult. Districts are also highly averse to providing transportation to ESY, or to accommodating the transportation needs of their children.

Procedural Safeguards Are Expensive and Time-Consuming

If a parent disagrees with the NOREP at the conclusion of the IEP meeting, they are permitted to pursue dispute resolution measures such as mediation, a pre-hearing, or a due process hearing. In most cases, parents require legal assistance to pursue the last two options. Many parents find that pursuing dispute resolution is time-consuming, tiring and very expensive. If the parents need to pursue their case in court, this adds to the difficulty for families. The State Bureau of Special Education will audit for compliance with IEPs but does not become involved with disagreements between parents and the school district.

The Lack of Quality Educational Services for Children Living With ASD Often Forces Parents to Home-school

Lack of access to quality special education services forces many parents to home-school their ASD child, thereby denying them the free, appropriate public education to which they are legally entitled.

Additionally, home-schooling regulations are very restrictive in Pennsylvania. The parents of a child with an IEP must hire a special education teacher that the school district won’t provide, to review the goals and objectives for the child with the IEP. The days and hours are rigid in that the student must be home-schooled for either 180 days or 900 hours, regardless of the type of days the child might be having. There are certain categories that must be taught, including Math, History, Science, etc. Sometimes, a parent must give more focus to lessons involving social skills, critical thinking concepts, etc. and the required classes do not fit the needs of the child. Finally, home-schooling presents a significant financial hardship as only one parent can work outside of the home. Single parents find it almost impossible to do so.

2. Medicaid

Medical assistance provides coverage of medical and mental health services for persons less than 21years-old, and includes services such as mental health Wraparound services ("Behavioral Health Rehabilitation Services" or "BHRS"), speech and occupational therapy, shift nursing, in-home personal care services, diapers, nutritional supplements, and prescriptions.

From a family perspective, the problems with existing practice include the following:

An Insufficient Number of Qualified Medical and Behavioral Providers

There are too few qualified medical and wraparound providers, particularly in rural areas, and the quality of services varies greatly from provider to provider and throughout geographic areas. Not all physicians or therapists accept Medical Assistance; therefore parents are unduly limited in terms of the availability of qualified providers.

While children with ASD are meeting the continued care medical necessity criteria, many children’s prescriptions for Wraparound services are not being filled due to the lack of providers and qualified personnel required to fill the ever-increasing demand. Parents in some counties are contacting ALL of their county’s authorized Wraparound providers and are being told to call back in three months because the provider does not have the staff to provide services.

There are an insufficient number of dentists who are both willing and able to treat autistic children, many of whom have heightened sensitivity in their mouths, and object to anyone else touching their mouth and teeth. Many dentists in Pennsylvania refuse to treat autistic children, and many of those will do not accept Medical Assistance.

Furthermore, most insurance plans specifically exclude treatments for autism.

Parents Are Not Effectively Informed of the Available Services and Treatments Which Are Available

Parents are often given little to no practical guidance at the time their child is medically diagnosed. Diagnosticians do not typically provide essential information regarding the behavioral and medical services provided via Medical Assistance, treatment options, and educational placement. Information regarding the various behavioral treatment modalities (e.g., Discrete Trial, Lovaas, Greenspan, Carbone, etc.) is frequently not provided, and parents are not advised that they have the right to choose whichever treatment approach they believe will most effectively assist their child. (1) Therefore, parents are forced to educate themselves through informal channels in order to commence meaningful treatment and educational programs.

(1) Additional information regarding these treatment methods can be found at:
www.drcarbone.net
www.lovaas.com
www.stanleygreenspan.com

Many parents are unaware that they may access services via Section 529 on the basis of their child’s diagnosis alone, and without regard to financial need. Parents are often unaware of, or do not understand the procedures necessary to access services via Medical Assistance.

Autism Services Are Currently Being Provided By A BHRS System That Was Never Intended To Serve Children With ASD.

The current system was designed to provide intensive and short-term treatment. This system does not properly serve the needs of an autistic population that requires long-term assistance that must change in intensity, methodology, setting, and hours as the child matures. The current system of MH/MR allows children with autism, many of whom are not mentally retarded, to "slip through the cracks". IQ is not an appropriate indicator of an autistic child’s capacity to be educated, to interact with others, or to function independently. Yet the current system continues to use IQ as an indicator for eligibility.

Notwithstanding the fact that autism is a life-long, incurable biological disorder, the current system requires that a psychologist or a psychiatrist reevaluate the child every four months to determine their continued eligibility for services. Parents find this reevaluation requirement to be medically unnecessary, needlessly intrusive and demeaning. Parents’ schedules are incredibly full coordinating their autistic child’s BHRS, speech and occupational therapy, medical appointments and oversight of their child’s educational programs. All of these demands are in addition to the typical scheduling demands which all families face. The 4-month reevaluation requirement is perceived by parents to be both unnecessary and needlessly onerous.

The current system creates an incredible amount of paperwork, and requires excessively frequent administrative interviews with parents.

When an individual is on the higher end of the spectrum, BHRS services become harder to obtain. Supports are inadequate for individuals with High Functioning Autism and Asperger’s Syndrome. Many are banned from community and social programs unless an escort accompanies them.

Autistic children are often threatened with a discontinuation of service when they have made progress through Wraparound. "Progress should not be punished." Progress in some areas does not mean that progress has been made across the board, or that services are no longer required.

3. Other Related Services

Families Require Additional Funding Assistance

Families of children with ASD face substantial financial pressures as a result of having a disabled child. Many families have lost income as a result of one parent needing to stay home with the ASD child either full-time or part-time. Parents often face added financial burdens to keep their children safe, and many are also forced to alarm their homes so that their children do not wander. Families of children with ASD spend a large amount of their own money in purchasing: home alarm systems and specialized locks so that their children do not wander out of the home, or fall out of windows; special diets; nutritional supplements; educational seminars; non-reimbursable medical appointments; therapeutic materials, reinforcers, etc. Many of these services and items are not reimbursed, and those that are do not even come close to covering the cost of services.

Children who qualify as Mentally Retarded may receive extra funds from Family Support Services for caregivers, therapeutic materials (such as weighted blankets), parent education, recreation etc. The use of these funds varies from agency to agency, and there are waiting lists for FSS funds.

However, ALL families with ASD children, regardless of IQ and eligibility for MR services, need Family Support Service money. Children with ASD with higher IQ’s are no less disabled and no less in need of services. Families with ASD children often require very specific types of therapeutic equipment and are subject to very lengthy reimbursement procedures, which often end in reimbursement denials.

Families of ASD children observe discrimination against their "invisibly disabled" children, who are often excluded from community-related activities to which those with visible handicaps are warmly welcomed.

Respite Services Are A Necessity.

Respite is NOT a luxury. Parents who have elected not to place their ASD children in residential treatment facilities and have instead chosen to have their children reside at home are subject to enormous stress and demands upon their financial and emotional resources. It is often impossible for parents of ASD children to secure babysitters. In order to provide on-going support to their children, these parents desperately need occasional respite services. Families who have not received adequate respite care have suffered from health impairments, depression, marital problems and other conditions directly related to the stress of raising an ASD child. Respite must be a reimbursable service.

B. Provider Perspective

What are the barriers to providing existing services? What services should be available but are not?

1. Medicaid

BHRS Service Delivery System is Ill-Suited to Treat ASD Children.

The current BHRS system was designed to provide intensive and short-term treatment. This system does not properly serve the needs of an autistic population that requires flexible, long-term assistance that changes in intensity, methodology, setting, and hours as the child matures. Autism is not a "short-term" disorder; therefore the treatment options ought not to be short-term only. There are no available services for children who have "graduated" from Wraparound. There are no established clinical standards for discharging children from Wraparound.

Autism must be redefined as a biological illness along the same lines as encephalopathy as these children often go without occupational therapy and other services because many providers do not accept MA, and those that do often have waiting lists. Children with ASD frequently have biological abnormalities such as metallathionein deficiencies, abnormal metabolism, food and environmental allergies, gastrointestinal problems, sleep problems and peripheral neuropathies.

Insufficient Number of Qualified Providers.

There are an insufficient number of qualified providers in the Commonwealth. Therefore, access to quality services is geographically inconsistent. The state does not recognize, nor does it offer proper incentives for improving the delivery of BHRS services. The current system makes no differentiation between highly qualified and experienced providers and Therapeutic Support Staff (TSS) persons and those with little experience in the delivery of autism services. The reimbursement rates are identical regardless of the qualifications of the provider. Moreover, BHRS providers are not reimbursed for staff training conducted outside of a client’s home. A great deal of time and resources is spent on initial staff training and on-going staff support. This money is wasted when staff turnover is high due to low pay.

2. Other related Service

Money must be made available for non-medical services.

IV. What are potential solutions to improve existing practices?

How can barriers to existing services be eliminated? What additional services could be provided?

A. Family Perspective

1. Education

Entitlement to Special Education Services

A child’s eligibility and need for special education and related services is first determined through an evaluation process that determines if a child is a "child with a disability". The term "child with a disability" is defined as including children with "autism". This definition actually serves as an obstacle to some children (such as those with Asperger’s Syndrome or PDD-NOS) seeking special education services. A potential solution would be to change the definition of a "child with a disability" to instead refer to children with "pervasive developmental disorder", which would include those with autism.

Entry into Kindergarten

When the school district evaluates a child prior to starting kindergarten, they should discuss with the parents the option to start their child in school at the age of 6, instead of 5.

Quality Services Must Be Consistently Provided Statewide By Educators Who Are Properly Trained To Teach Students With ASD.

Administrators, special education teachers, regular education teachers, instructional aides and support staff must receive increased educational and cultural training relating to:

1. The assessment and educational needs of children with ASD; and
2. The non-delegable obligation and responsibility that districts have to educate their special needs students, including those with ASD.

Additional training is required regarding the preparation and enforcement of IEPs. The schools must remember that "I" stands for Individualized. School districts need to be open to greater flexibility in their teaching methods so that a child’s unique learning style can be addressed. There needs to be more flexibility in doing what works for each individual child. Schools must be open to trying precision teaching, discrete trial, errorless learning, verbal behavior and other approaches that families have used with success.

Students studying to be teachers should be required to have some training in autism before receiving their teaching certificate.

The state should provide some type of "loan forgiveness" to college students who are considering a career in special education with a specialization in autism, and to established teachers seeking graduate degrees in the same area. This could create an influx of qualified teaching professionals into the state’s school systems at a time when there is a veritable epidemic of autism diagnoses. An increase in professionals could mean an increase in appropriate placements.

Schools should be given grants or incentives for providing quality services to students with special needs. Districts could be rewarded for providing exceptional inclusion models, providing staff with continued education in autism related treatment, and raising the scores of the bottom 20% of students. Any incentive program would have to be applied for on a yearly basis, with parent feedback forms and unannounced inspections.

School Districts Must Cease Opposing Services Which They Deem To Be "Community Based"

Schools must focus upon the communication, language, and social skill needs of children with ASD. Extensive language training should be provided. Social Skills groups and pragmatic language groups are essential. Students must be afforded opportunities to learn social skills from typical peer models through programs such as "The Buddy System", "Circle of Friends", or extra credit or service projects. These programs should be offered during the school day. "Inclusion" must also mean support for all students to participate in extra-curricular and after school activities (i.e., music, sports, and drama). Incentives such as extra credit may be offered to regular education students who participate in social skills instruction.

Lack of Interdisciplinary Cooperation and Accountability

Schools need to work cooperatively with private therapists and Wraparound providers to ensure consistency among the school, home and community programs. Each IEP team should include an inclusion specialist and a representative to be designated by the parent who is involved with the child’s private therapies (i.e., a BSC, case manager, etc.).

Related and Extended School Year Services

Each child with an autism/PDD/Aspergers label should automatically be evaluated by a Speech and Language Pathologist and an Occupational Therapist, as well as for social skills training, and a referral to an ESY that would also focus on all areas of need, including social skills, functional language, etc. Every school district should have appropriate related services programs for every age in order to avoid busing children long distances.

ESY services are often difficult to secure and/or inadequate in their delivery. Greater flexibility in ESY programs must be achieved in order that our children may receive appropriate academic, social and communication services in the summer.

ESY is funded with Special Education dollars left over from the school year. Often this money is limited. Separate funding for ESY could provide enough money for wide-ranging programs to meet the unique needs of the child with ASD.

Procedural Safeguards Are Expensive and Time-Consuming

The state should streamline the Procedural Safeguard system in order that the process not be so time-consuming and expensive for parents.

The state must provide parents with more information regarding their children’s rights and about the educational and behavioral services available to children with disabilities.

A statewide "Autism Services Ombudsman" should be appointed who has the knowledge and authority to address parents’ questions and concerns. The Ombudsman should have a toll-free number, and the ability to direct parents to the appropriate agency/person/provider.

Home-schooling Solutions

Home-schooling regulations should be amended to be more adaptable to the unique situation that each Autistic/ Asperger’s child faces. Regulations should reflect an understanding of the scheduling and therapeutic demands placed on the ASD student and parent, including doctor’s appointments, evaluations, speech and occupational therapies, meeting with caseworkers and Wraparound teams, etc. A child with ASD has more demands on his schedule than the typical child, for whom the regulations were designed.

The Department of Education and/or individual school districts should create resource networks and sample curriculums for use by home-schooling parents. The parent should still maintain the ability to carry out the home-schooling curriculum that they feel is the most appropriate for their child. Any resources would be advisory only.

The state must also insure that the child gets the related services to which he is entitled.

B. Provider Perspective

1. Additional Funding Streams

Additional funding streams, such as the Access System, may ameliorate some of the existing problems in education. The ACCESS program is a system that can be used by school districts, intermediate units, state-owned schools, or approved private schools (APS) to obtain funding for health-related services for special education students. These agencies can obtain funding for health-related services that are currently being provided to children. ACCESS is a method of gaining Medical Assistance (MA) reimbursements for the cost of the related services currently being provided to MA eligible students. Examples of services that are billable are speech therapy, occupational therapy, physical therapy, psychological services, etc. School districts must enroll as medical assistance providers to be eligible. They submit invoices to MA for the services they are providing to the eligible students. The funds received from MA are maintained in an account managed by PDE and must be used to enhance or expand special education programs. All requests for the funds must be approved by the Bureau of Special Education.

2. Medical Assistance

What changes would improve the ability to provide high quality services in a timely manner?

A. Family Perspective/General Group Consensus

Service Delivery System is Ill-Suited to Treat ASD Children.

A Department of Developmental Disabilities ("DDD") must be designed to oversee Medical Assistance (MA) to children with ASD. In order for the state to determine the size of the population to be served by the DDD, a statewide census is required to determine the number of persons in Pennsylvania with pervasive developmental disorders, including autism, Asperger’s Syndrome, etc.

Entirely new medical necessity criteria must be developed which accurately reflect the behavioral and medical aspects of ASD. IQ alone should not be a criterion for services. The system must provide for the delivery of a full-range of flexible, long-term services for persons with ASD.

At the time when a child is diagnosed, a "Case Manager" should be assigned to the family. The Case Manager will have the responsibility of providing parents with information regarding: the educational rights of their child; how to obtain Medical Assistance; the availability of Wraparound, speech therapy, occupational therapies and other therapeutic assistance; and a list of medical and therapeutic providers in the family’s area. One model to consider is the program established by the American Academy of Pediatrics entitled the "Medical Home Project."

Wraparound should be more culturally sensitive and more easily accessed. There should be an option for the bulk of TSS hours to be delivered in a community-based center for families that cannot open up their homes to therapeutic work. In areas where TSS are not readily available, parents should be given the option of hiring their own Wraparound aides directly, with all costs paid by the state.

Confidential feedback surveys should be administered by organizations other than the providers to monitor the quality of services offered and to gauge parental satisfaction with the services their child is receiving. Providers who are doing excellent work should be paid more, or given some type of incentive to provide a higher standard of care.

The insurance industry must include autism as a covered condition.

Although according to CAASP principles, parents are supposed to be equal members of the treatment team, there are certain providers that do not consult with parents when developing the treatment team, communicate with schools, etc. Also, certain MCO (Managed Care Organization) representatives sometimes do not take the parents' opinions as seriously as those of the wraparound providers.

Insufficient Number of Qualified Providers

Wraparound providers who serve individuals with autism must have a minimal degree of proficiency and education regarding the autism spectrum. Providers must understand the differences between the causes of behaviors from those clients with emotional disturbances vs. those with autism.

Additionally, Wraparound for autism must focus on finding the core causes of behavioral issues of children with autism rather than quelling the behaviors themselves, which is akin to putting a band-aid on a serious illness. They must address social skills, pragmatic, self-regulation and other issues that lead up to the negative behaviors associated with autism and Asperger’s syndrome. Parents have been unfairly told that if their children cease to act out inappropriately, they will not be eligible for continued Wraparound services. Also, due to the complexity of the diagnosis, children who regress when encountering new situations should not be terminated from Wraparound due to "failure to progress".

Additionally, there must be an explicit provision that if the client or parent of the client files a grievance or complaint that the Wraparound provider cannot retaliate against the complainant by dropping them from the provider's services, or by any other means.

In areas where TSS is not readily available, parents should be given the option of hiring their own Wraparound aides directly.

Other Views Expressed

An autism waiver should be established to serve the needs of Pennsylvanians from the date of diagnosis until death. Families must be given the right to choose which therapies they will utilize for their children, using a "toolbox of therapies" which recognize the diverse needs of autistic children.

B. Provider Perspective

1. Medicaid

Service Delivery System Must Be Reconfigured to Properly Serve Children With ASD

Wraparound should be provided in "phases" which acknowledge the varying needs of children as they mature. The needs of autistic children do not diminish with time- they only change. Yet Wraparound providers are not currently equipped to provide services for a ten-year period. The delivery system should be revised to reflect the different needs of children as they develop and mature. Each phase could provide different and age-appropriate therapy options.

For example, the first phase of Wraparound could serve the preschool population and involve an intensive 30-hour per week at-home program with reauthorization occurring every 4 months. The second phase could address the needs of school-age children, which often include playgroup therapy, and require reauthorization every nine months. The third phase could require only annual re-authorizations. More service programs are needed for children who have "graduated" from Wraparound. Currently, there is nothing for our children to "graduate to."

Wraparound should provide greater flexibility in terms of the nature of services that could be provided. For example, some families would greatly benefit from a "BSC only" program in which a BSC provides a variety of services to the child in a multitude of settings. For example, at the beginning of the school year, the BSC could assist with the transition process at school and provide advice and assistance to the family and to school personnel. If the child were in crisis one week, then the BSC would have the flexibility in terms of hours to properly assist the child. Some weeks would require 10 hours of BSC assistance, while the next week would only require 2 hours of BSC assistance.

The system should be reconfigured to provide for a tiered reimbursement schedule with different recognized levels of therapeutic staff support.

The system needs better quality control and should reward superior service.

Retention bonuses should be granted to providers who achieve greater longevity with support personnel.

There should be more of an effort to reach ALL families and not just the squeaky wheels. Outreach workers and free transportation are required in some instances.

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Autism Task Force Report
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The entire content of the Autism Task Force Final Report (December 2004) was researched, created, and composed by members of the Pennsylvania Autism Task Force with support from the Pennsylvania Department of Public Welfare. Any use, reproduction, and/or distribution of the content and/or work product of any of the information or testimonies contained in the report without the express written consent of the chaired leadership of the Pennsylvania Autism Task Force is prohibited. Please respect the countless hours of work, dedication, and energy that our membership has put into the report and do not utilize or employ any of the information and/or testimonies contained in the report without prior permission. If you have any questions regarding the use of the content and/or work product contained in and associated with this report, please contact the Secretary’s Office of the Department of Public Welfare, Commonwealth of Pennsylvania, at (717) 787-2600, Monday through Friday, from 8:30am to 5:00pm Eastern Standard Time. You may also request information regarding authorizations or permissions by contacting us in writing at the following address:

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