05 Autism – A Cross System Plan

AD HOC COMMITTEE REPORT
October 28, 1998

Modifying a system of care is a process of such exquisite complexity that, often, when it occurs, we do not seem to understand what made it happen. We typically experience great difficulty both in identifying the precise variables that led to the change and in explaining the ways in which those variables interacted.

It is not surprising, therefore, that efforts to introduce reform often fall short of intended goals. Lacking understanding of the complexity of the process of change, we are apt to view the most obvious, although not necessarily the most relevant variables as the effective agents.
Santiago

A social system tends to draw our attention to the very points at which attempts to intervene will fail.
Forrester

INTRODUCTION

In June of 1998, the principle sponsoring agents of the child serving agencies of Chester and Montgomery Counties met to discuss the Interim Report concerning system analysis and the recommendation. At that meeting these Sponsors directed that a committee of experts be formed to address the assumptions enclosed in the Interim Report and to develop a ‘broad stroke’ outline for the design of an effective system of services to children with autism and their families.

That Ad Hoc Design Committee was composed of professionals from both counties and across child serving domains. Included at different times with the major contributors underlined were Terry Allison &/or Etta Nuerick of the Montgomery County Intermediate Unit; Becky Austill of Austill Rehabilitation, a provider of specialized therapies to both counties; Gina Buckman, Assistant CASSP Coordinator of Chester County; Richard J. Hess, Jr & Sherry Sterling-Holt of the Chester County Intermediate Unit; Scott Helsinger, Steve Mason and/or Christine Ivanick of ReMed a provider of behavioral services in both counties; Randy Laborde from Milestones, a provider in both counties; Donna Salkin from the Eastern Instructional Support Center; Vince Winterling from Devereux; and Trisha Mallot, CASSP Coordinator from Montgomery County. In all approximately 150 person hours were spent in discussion and debate.

Jerome R. Gardner from the Chester County Intermediate Unit facilitated the meetings. Richard Hess chaired the meeting concerned with Assessment, Evaluation & Training and Randy Laborde chaired meetings concerned with Program.

The Committee immediately divided the original assumptions into four tasks:

• comprehensive assessment, evaluation & training
• prescriptive age appropriate interventions and prioritization
• development of natural supports
• allocation of responsibilities such as funding, supervision and monitoring, certification and training.

The Committee then sent the fourth task back to the Sponsors, stating that they believed that it was not in their purview to make any determination in regard to this assumption except to provide a perspective that one solution might be to develop a Child Fund out of combined resources and pay for system expenses as needed, not categorically.

Through exploration and examination of the other three tasks, the Committee hoped to shape the potential for a system. The following recommendations are made through consensus of the committee and any differences between their consensus and this report is an error of interpretation unless such difference is so stated.

Executive Summary

ASSESSMENT:

• The assessment process will be separated from the delivery of services.
• The system will, through use of medical experts, 1) identify develop a protocol for doctors to use on all children on a scheduled basis; 2) doctors will be trained in the use of the protocol; and 3) will report any suspect characteristics to a Comprehensive Assessment Unit [CAU].
• The assessment will occur in the home, school and/or community setting which is convenient for the family and other participants.
• The CAU will have two outcomes – diagnosis and appropriate referral.
• The CAU will confirm diagnosis; assess skill deficits; and identify outcome specifications.
• A Comprehensive Evaluation Report will be developed for each child.
• A Comprehensive Plan will be developed for each child/family.
• A Plan Team will be provided which does not include providers of services.
• All classic autism will be diagnosed by the third birthday.

CASE MANAGEMENT:

• The Plan Manager will be separated from the delivery of services.
• The Plan Manager will receive recommendations from the CAU and negotiate for the family an appropriate placement with a provider.
• The child/family will have the right to engage or dismiss the Plan Manager.
• The Plan Manager will have funds that are in essence placed in escrow to pay for recommended services and supports for each individual and will act as a fiduciary on behalf of the child/family.
• Change orders or changes in specifications of the agreed services must be documented by the Plan Manager in conjunction with the child/family and the CAU.
• The Plan Manager will continuously monitor the progress and satisfaction of the child/family.

PROGRAM SERVICES:

• The system will be outcome driven with the ultimate outcomes as follows:
  As a result of the systems effectiveness our goal is that all adults will be able to:
  • have social relationships that are adaptive and mutually satisfying and gratifying.
  • access and benefit from learning opportunities and settings.
  • actively participate in transitions throughout life.
  • monitor, maintain, access and advocate for his/her own physical and psychological well being.
  • participate fully in the exercise of his/her legal rights
  • choose where and with whom s/he will live.
  • maintain him/herself in independent or supported living.
  • find and maintain employment.
  • identify and safely manage risk including physical and environmental threat, social exploitation and health hazards.
  • fully belong, participate and contribute to the activities of the community.
  • identify, access and participate in activities that they enjoy.
  • have family relationships that are adaptive and mutually satisfying and include starting one’s own family.
  • exercise choice, problem solving and self-determination in his/her own life.
  • establish safe consensual relationships.
• The system will be skill enhancement oriented: enhancement of developmental and/or adaptive skill competency to the capacity of outcome expectation.
• Providers are what they say they are until proven otherwise.
• New or innovative services would be required to meet the test of either research documentation OR through a review.
• New or innovative services will be required to meet the standards of the Code of Federal Regulations Title 45 and the Ethical Standards in The Belmont Report.
• The system will provide age groups, diagnostic/assessment groupings, and skill areas as guidelines to service and support development.
• The system will provide services to secondary clients.
• Secondary clients will be eligible for therapeutic intervention, support groups, education, one on one skill teaching and individual supports [respite, sitters, etc.]

EVALUATION:

• The evaluation process will be separated from the delivery of services.
• Evaluation is an on-going process at formative, summative and cumulative levels.
• All data requires a response.
• All measurement must be against the outcome specifications of the short term and the outcome expectations of the long term.
• Providers who do not regularly meet short or long term outcome expectations will not receive referrals.

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Augmented Report

ASSESSMENT:

The beginning information coming from the system analysis and supported by the participants of the committee was:

• Assessment/diagnosis often occurred much later in the child’s life than was acceptable.
• Diagnosis first occurred with the family doctors, many of who were unfamiliar with the characteristics of autism. This led to misdiagnosis, delay based on the expectation that the child would “outgrow” the problem”, and inconsistent referrals.
• That families were not well informed about the nature of the disability nor the potential for services and supports; often they had to learn this on their own.

After considerable discussion of these factors and other issues, the Committee began to shape a process that requires four [04] components: diagnosis, assessment, personal services support and evaluation.

Diagnosis: a medical process that is as important in ruling out other physiological problems as it is in determining the nature of the syndrome of the individual child. It is not enough to simply note the child’s developmental deficits; but it is required to determine whether those deficits are amenable to other medical processes. Despite legislative intent and increasing public concern, early assessment and confirmation before the age of three is still rare. Medical professionals have little or no diagnostic training and there seems to be no specific test or quantitative measure associated with each item, which allows latitude for judgement. [Paraphrased from the Report on House Resolution 104 – 1988] Since not all physicians are equally skilled with such diagnosis, the Committee considers it imperative that the family doctor continue to be used as the screening component, but that a medical expert be identified to reaffirm on a consistent basis all diagnostic questions.

From that aspect, the family doctor, no matter how knowledgeable or unaware remains the “first line of defense”, but the System can provide a viable method for confirmation. In order to assure that all pediatricians and family doctors have some basic knowledge and a process for identifying autism characteristics, the Committee feels that a protocol should be developed by experts in the field; that doctors should be trained in the protocol; and that the doctor should be urged to err on the side of over, rather than under referral. The protocol is seen more as a sensitivity to characteristics, than a formal medical procedure.

Finally, since the Early & Periodic Screening & Diagnosis & Treatment [EPSDT] schedule is established and appropriate for eligible children, the Committee felt comfortable in recommending an expansion of that process for the purposes of improving early diagnosis. The periodic screening of other children needs to be examined as private doctors may not see the child sufficiently between the age of eighteen to thirty months to assure early detection.

A secondary screening protocol option is recommended as well. This requires the provision of assessment screening training to the personnel of day care services for infants and toddlers to enable an early warning process to occur there.

Assessment: a process of gathering general and specific information regarding the functioning of a referred child in order to:

1. make decisions regarding the child’s eligibility for services.

2. develop hypotheses regarding services and programs which are likely to support improved development and performance in areas of concern.

The committee recommends that a Functional Assessment approach be adopted as the framework for all assessments scheduled. Though a functional model was originally developed as a technique to assess challenging behavior, in Pennsylvania it has been adapted to be applied more widely in the evaluation of other aspects of a child’s development and performance.

In gathering data to address challenging behavioral concerns, functional assessment considers not only specific information regarding the nature of behavioral disturbance but also the function of the behavior in meeting underlying needs for the referred child. Such consideration leads assessment teams to conclusions regarding the influence of both individual (the referred child) and environmental factors (antecedents and setting events as well as effective consequences) on behavior, thus yielding a more comprehensive understanding of behaviors in a structure which facilitates the development of multiple component intervention and support plans. Similarly, in gathering data to address developmental or academic concerns, assessment teams gather information from environmental correlates that are likely to influence performance as well as individual differences in the physical/medical condition, skills and abilities within referred children.

The Committee identified with the core skills of attention, imitation, communication, appropriate toy play, and social interaction as the focus for the system’s services. Combined with highly supportive environments across all life domains and the development of pathways that build upon strength and achievement provide the basis for later consideration of program.

The Committee affirmed the need for a single Comprehensive Evaluation Report and a single Comprehensive Plan that covers all life domains. The Comprehensive Plan would in essence, provide information presently contained in such documents as the Individual Education Plan include the Transition to Adult Living, The Individual Treatment Plan, the Individual Family Service Plan, and include a Plan for the development and use of natural supports. It is this single plan that creates a Comprehensive System.

The Comprehensive Plan must concern itself with generalization through exploration of available natural support groups [clubs, recreational activities, hobby groups, etc.] and develop a resource repository that would be available to the Plan Team and Manager.

The Committee defined the context of assessment and plan development and implementation as follows:

• Diagnosis and assessment of autistic syndrome characteristics will occur between the ages of eighteen months and three years.
• An assessment process which will result in a Comprehensive Evaluation Report which will give a discrepancy analysis or profile of skill deficits and skill enhancement needs.
• The CER will be provided to an interagency planning group which will include the family and other participants they may select, the administrative and regulatory county child serving agencies representing education and behavioral health, AmeriChoice Behavioral Healthcare [NOTE: no providers of service are in this meeting] , the assessment staff and the Plan Manager.
• The Plan Team will develop a Comprehensive Plan which will include short and long term outcome expectations across all life domains. This prescriptive plan will define the services and time cycles expected. The Plan Team will then recommend a list of providers of service who have indicated that they can address the issues defined in the Comprehensive Plan, or if no such provider exists will take action to identify such a resource.
• The Plan Manager, in consultation with the family, will contact, negotiate and develop a performance contract with providers for part or all of the Comprehensive Plan implementation. Essentially, providers are being offered a Request for Proposal on which they will “bid” by making their best case in terms of outcome expectations, time cycle and costs. [NOTE: Over time, it is expected that the evaluation component of the system will hone effectiveness of such recommendations.]
• The Plan Manager and family will monitor the implementation of the services and handle “change orders’.
• The Plan Manager will seek “natural supports” according to the Plan and implement a similar process in which s/he makes contact and monitors success. Initial contact may be as simple as providing information to the family and as complex as providing consultation and training to the group leader and/or group to enhance their ability to support the child.

Based upon these discussions, the specific recommendations include:

• The assessment process will be separated from the delivery of services.The development of a baseline of skills must be separated from the provision of services to:
  • avoid bias that might occur when an unethical or nonthoughtful provider sees the problems from a point of view.
  • protect providers of service who are truly producing effective results by providing supportive documentation.
  • help the system learn what is and is not effective so that it can improve its service delivery over time.
• The system will, through medical experts,1) identify or develop a protocol for doctors to use on all children on a scheduled basis; 2) doctors will be trained in the use of protocol; and 3) doctors will be encouraged to report any suspect characteristics to a Comprehensive Assessment Unit [CAU].

As we have already noted, this recommendation attempts to capitalize on what exists and enhance it through training and expertise.

• The assessment will occur in the home, school and/or community setting which is convenient for the family and other participants.All services must be supplied in a manner that is “user friendly”. Many families , particularly those with a disabled child, find it difficult to easily move about even when the outcome of such action is very important to them. Coordination of other children or family member schedules as well as transportation becomes a problem, when such planning must include specific conditions for disability.
• The CAU will have two outcomes – diagnosis and appropriate referral.The assessment process should provide a substantive diagnosis and then provide recommendations as to the services and supports required to enhance the development or adaptive skills required to participate more effectively in everyday life. Appropriate referral will include not only a documentation of delay or deficit, it will provide recommendations regarding effective interventions to reach specific outcomes over specific periods of time. The process will address short and long-term expectations and plan accordingly. The referral process would identify the effectiveness of providers in service delivery as well as the accessibility, convenience and child/family preference. In the ideal, no fewer than three options of providers should be recommended so that parents have choices.
• The CAU will confirm diagnosis; assess skill deficits; and identify outcome specifications.The confirmation of diagnosis will occur through a doctor specifically trained and skilled in the diagnosis of autism who will be employed for that purpose. This physician will review all referrals and make the final determination. The assessment will be a functional behavioral assessment that will include inquiry from family members, teachers and others who know the child. The outcome specifications will be determined by the specific delay or deficit of the child as oriented by the outcome expectations held by the system. Sets of skill structure will be determined by age, characteristics, life domains and outcome expectations. Such structures therefore will change over time with the achievements of the child.
• A Comprehensive Evaluation Report will be developed for each child.The Comprehensive Evaluation Report will be reviewed by the CAU staff with the child/family to assure that the diagnosis, assessment, recommendations and referral are understood and that parents can make informed decisions regarding the impact of interventions.
• A Comprehensive Plan will be developed for each child/family.The Comprehensive Plan will be developed across all domains and include both professional and natural supports. The Comprehensive Plan will be developed by a Committee that is not committed to a services technology, methodology or “trade name” approach.
• A Plan Team will be provided which does not include providers of services.The Comprehensive Plan will be focused on the discrepancy between performance and developmental goals and on continuous quality improvement towards outcome expectations. The Plan Team will recommend what needs to be done, not how it should be done. The Plan team will include, but not necessarily be limited to, the child/family and any advocate requested, the Sponsoring Agencies, the assessment staff and the Plan Manager.
• All classic autism will be diagnosed by no later than the third birthday.The Committee was deeply concerned that intensive services begin for the child at the earliest possible time. It recognized that some characteristics and syndromes are difficult to detect, but felt at base a system outcome expectation needed to be set for the most salient disability syndrome.

  Case management: In the process of discussing diagnosis and assessment, and referral, the Committee became aware of the need for a broker of services for families. Such a person would negotiate the system, monitor service provisions, enable changes in specifications that occur when providers become familiar with the child and his/her functioning; etc. It is felt that a process of case, or more appropriately plan management would provide this linkage. It was further determined that this Plan Manager be an advocate for the child/family and can not therefore, be linked to the provision of services.

• The Plan Manager will be separated from the delivery of services.While the potential for bias and conflict exists in many areas, the protection of service delivery integrity can best be protected through separation of all of the monitoring functions from the service segment. It may be true that the child/family may have difficulty with the diagnosis, assessment, recommendation, referral and evaluation; but experience suggests that this is less problematic than the concerns with service delivery. These seems to be true for two reasons: 1) the personal relationships of day to day involvements tend to be more intense and important, than those of more removed monitors, and 2) that the tendency of professionals to “defend” their positions strongly about monitoring are less likely than the need to justify service issues. Nonetheless, the system should examine closely how it can provide checks and balances for difficulties with the monitoring functions as well.
• The Plan Manager will receive recommendations from the CAU and negotiate for the family an appropriate placement with a provider.The Plan Manager will be a part of the Planning Team and will help to develop the Comprehensive Plan. As a personal service to the child/family, it will be the responsibility of the Plan Manager to be able to access resources available within the system and to be able to negotiate with providers in regard to the concerns and needs of the family in the way that services are delivered. Further, the Plan Manager is responsible for assuring that the services provided meet the specifications of the referral and the needs of the child/family. This may require that the Plan Manager act as a negotiator, a mediator, a persuasive person or as a “whistle blower” in situations of conflict.
• The child/family will have the right to engage or dismiss the Plan Manager.The Plan Manager is the family’s major link to the Comprehensive System and acts as an advocate for the child. If the Plan Manager is to provide personal services to the child/family, it requires a level of trust that can only be met through a power to achieve change if it is necessary. While it is true that some families may be overzealous in their pursuit of change and that the system may need to address this; it is important that empowerment of child/family have real meaning.
• The Plan Manager will have funds which are in essence placed in escrow to pay for recommended services and supports for each individual and will act as a fiduciary on behalf of the child/family.Black’s Law Dictionary defines a fiduciary as “a person [or entity] having the duty created by his undertaking, to act primarily for another’s benefit in matters connected with such undertaking…. One is said to act in a fiduciary capacity when the business s/he transacts, or the money s/he handles, is not for his/her own benefit, but for the benefit of another person…” The responsibility to act on the behalf of the child/family and for no other purpose, either your own or your organization’s has salient implications.

  It is recommended that the system designate a portion of funds to be paid to provider for the explicit purpose of meeting the skill enhancement needs of the child. The virtual control of these funds will lie with the Plan Manager who will, with the advice and consent of the family, purchase services and supports.

• Change orders or changes in specifications of the agreed services must be documented by the Plan Manager in conjunction with the child/family and the CAU.In order for the system to be a “learning entity”, the Comprehensive System must know what it is measuring. While the Committee clearly articulates the desire for an outcome driven system, it recognizes the need to know what services and supports are being offered in order to learn which are effective and in what situations. In order to accomplish this purpose, it is necessary that services specification be documented. No provider can arbitrarily change the service offering without a process of review that may include the child/family and CAU as well as the Plan Manager. But the Plan Manager will ultimately “sign off” as a means of authorizing and documenting agreement for the change.
• The Plan Manager will continuously monitor the progress and satisfaction of the child/family.The Plan Manager plays a role that interacts with the child/family and the service provider. Monitoring both the actual service delivery and the impact of that process on the child/family naturally will occur. The Committee believes that this role should be formalized.

PROGRAM SERVICES:

The beginning information coming from the system analysis and supported by the participants of the committee was:

• There is no system of care for children with autism in Chester or Montgomery Counties.
• That critical decisions are driven by provider bias or parental insistence without regard to assessment data or child characteristics.
• That parent frustration with system failure is exacerbated by the uncertainty of information.

From this the reporter indicated the need to develop intensive prescriptive age appropriate interventions and the development of a priority menu of services based on philosophic principles and policy decisions.

This area of discussion presented some frustration for the Committee as it required a process of looking at both specific and general areas of concern. It is also the area where the most salient change from the recommendations of the initial report occurred. The Committee moved away from the position of prescriptive programming that was tied to assessment data, to a predominant position of a competitive market system where the effectiveness of outcomes would shape the ultimate offering of services.

This movement is away from a “command and control” management process to one of “total quality management” that fits well with the Osborne and Gaebler admonition that “government must steer, not row”. The shift requires that the system develop the capacity to learn and the expectation of continuous quality improvement over time. This enables the potential for any service to be offered if it meets the constraints of present regulation and the local ethical and philosophical norms. Gradually, the impact of the evaluative process would shape the service menu through attrition of ineffective practices and the enhancement of those that work.

The question of quality needs to be addressed. Quality gurus all agree that the customer defines quality and the child/family are the customers of this system. The system itself, however, also has a requirement to define quality and it is to that end the Committee struggled to develop outcome expectations. These outcome expectations denote the values of the System. The Committee believes that there should be zero defects, and that therefore it the following are an expectation for all children. The Committee does not believe in planning for defects.

• The system will be outcome driven with the ultimate outcomes as follows:As a result of the systems effectiveness our goal is that all adults will be able to:
  • have social relationships that are adaptive and mutually satisfying and gratifying.
  • access and benefit from learning opportunities and settings.
  • actively participate in transitions throughout life.
  • monitor, maintain, access and advocate for his/her own physical and psychological well being.
  • participate fully in the exercise of his/her legal rights
  • choose where and with whom s/he will live.
  • maintain him/herself in independent or supported living.
  • find and maintain employment.
  • identify and safely manage risk including physical and environmental threat, social exploitation and health hazards.
  • fully belong, participate and contribute to the activities of the community.
  • identify, access and participate in activities that they enjoy.
  • have family relationships that are adaptive and mutually satisfying and include starting one’s own family.
  • exercise choice, problem solving and self-determination in his/her own life.
  • establish safe consensual relationships.

As an outcome oriented, transformational system, the expectation is a commitment to zero defects. Recognition that such an expectation may be improbable does not eliminate the commitment to making the attempt either through development or adaptation to enable all children to participate fully in all aspects of a quality life. To commit to less than these outcomes is to defeat the highest possible creativity and performance of children.

• The system will be skill enhancement oriented: enhancement of developmental and/or adaptive skill competency to the capacity of outcome expectation.Discussion of “cure” or “recovery” is unhelpful to the process of continued growth and development. All people are capable of improving their performance through increased functional skills. Competence can be defined as “capacity to expectation”, therefore the system must recognize that expectations vary across life domains and with different participants. Skill enhancement must be tied to personal preference and personal expectations.

  Each person shapes and is shaped by the people and events around him. The influence of significant others [significant either through relationship or acknowledge authority] is particularly powerful upon the developing self, or the underdeveloped self. Positive expectations tend to indicate to the individual that they are capable of achievement. Such an effect has been demonstrated by research of self-fulfilling prophecies. A self-fulfilling prophecy is said to occur when one’s belief concerning the occurrence of some future event makes one behave in a manner that increases the likelihood that the expected event will occur. These interpersonal expectancy effects are often lowered when professionals face a person with a disability. The failure of the system to emphasize high, positive expectation, regardless of severity of disability, therefore supports an environment that does not get the best from the individual. This system, through support of the outcome expectations as a commitment, anticipates the maximum attainment for each child.

• Providers are what they say they are until proven otherwise.Substantial discussion occurred in attempting on the one hand to assure that the system is data driven, while at the same time flexible enough to allow providers to do whatever it takes to achieve the outcome expectations. Based on the understanding that the larger systems provide a credentialing base of certification, licensing and regulation; the Committee felt it unnecessary to extend this bureaucratic tendency. As long as providers hold the appropriate credentials, they are treated by the system as qualified to provide services. However, as a learning system, the collection of data regarding the ability to help children with autism become competent to meet the outcome expectations will allow for a continuous evaluation of organizational performance. Providers who are not able to meet expectations and are unwilling to change will gradually be eliminated from the system.
• New or innovative services would be required to meet a test of either research documentation OR a through review.The Committee recognizes that the answers as to how to best help children with autism achieve are still uncertain. While the literature can help us define the consistencies of effective systems, there is in no way a perfect solution. There needs to be both consistency and innovation. The system will accept an innovative service based on one of two criteria: 1) that there is literature on the research that would support such trial, or 2) that some system of review[NOTE]A Review Committee composed of researchers, academicians, and parents may suffice to make a recommendation to the principle sponsors. [/NOTE] be provided so that a decision can be made on the merits of the presentation based on local norms.
• New or innovative services will be required to meet the standards of the Code of Federal Regulations Title 45 and the Ethical Standards in The Belmont Report.Title 45 requires among other things, the development of an Institutional Review Board to review “experimental” biomedical and behavioral interventions. This Review Board shall review and have the authority to approve, require modification or disapprove of all activities regarding human subjects. The term “human subjects” in regard to this system would mean an individual who, though informed choice, agrees to a trial in an innovative program. The basic ethical principles spelled out in the Belmont Report include 1) respect for persons, beneficence, and justice. In application informed consent, information, assessment of the nature and scope of risk and benefits and selection of subjects become driving concerns.

  The Review Board may be a standing committee of the two county child service systems that reviews all experimental services or may be developed individually as the occasion arises.

• The system will provide age groups, diagnostic/assessment groupings, and skill areas as guidelines to service and support development.The other side of provider freedom, flexibility and innovation is the development of core data to drive the system. These two poles are not mutually exclusive, but require considerable attention to avoid conflict. Consciously or unconsciously system provide constraints of the processes that are used. The Committee has articulated a salient philosophy about the greatest good and this philosophy has inherent constraints. The Committee strongly feels that these constraints can be more explicitly formulated through a determination of the specific service interventions. Additionally, as a learning entity, the system will need to be able to measure outcome against standards. The system must over time measure 1) the progress of individual children, 2) the efficacy of provider organizations, and 3) the functioning of the overall system. Thus, the development of standards becomes a structural component in an organismistic system. The development of such structure must of necessity reflect both local norms and universal applications.
• The system will provide services to secondary clients.Since the system is concerned with developing intense coherent environments for children with autism, it is incumbent to provide supports and services to those people who are significant to the child’s various life domains. Parents, adult family members, siblings, extended family members, friends, clergy, congregation, neighbors, store owners, police officers, teachers and others may be secondary or tertiary clients of the system for the purpose of shaping a high positive expectation environment.
• Secondary clients will be eligible for therapeutic intervention, support groups, education, one on one skill teaching and individual supports [respite, sitters, etc.]

The Interim Report of June 10th 1998 as amended June 29, 1998, indicates the need or an intensity of services into a twenty-four [24] hour and seven [07] day a week experience. In order to accomplish this 24/7 intensity, people providing natural supports may need training or other supports. Family members including parents and siblings are considered as primary supports and may receive intensive services. Secondary clients, significant adults, siblings and peers and other who provide natural support may be eligible for a variety of services and supports providing those services and supports meet the criteria of enhancing the primary client’s achievement of outcome expectations. Such services and supports must meet the test of cost/benefit and the system will need to develop a method of making such determinations. Services and supports will be offered only to secondary clients who choose to be involved since to do otherwise is fruitless. Further, the Committee would emphasize the secondary client’s preferences in developing such services and supports.

EVALUATION:

• The evaluation process will be separated from the delivery of services.

As with other monitoring elements, the measurements of performance need separation from the delivery of service. For purposes of this component, however, the Committee would expand service delivery to mean diagnosis, assessment, referral, intervention and plan management. Therefore, while it is expedient to have the CAU and/or Plan Management to monitor and collect certain data, it is vital through the transformation development of a new system that the analysis and decision making about the performance of the components be one step removed. The Committee recommends that an outside research organization be contracted to objectively observe and respond to these factors. Given the complexity indicated above, this Independent Research Unit [IRU] should be responsible directly to the principle sponsors and provide on-going reports on the development and progress of the system in its effectiveness in meeting its outcome expectations.

It is further recommended that the work of the IRU be gradually institutionalized into a Research and Development arm that will provide: continued evaluation, new service development and reports on trends for future planning.

• Evaluation is an on-going process at formative, summative and cumulative levels.

Formative data is that data that helps to develop individual plans and to make change orders in those plans. The sum of individual data is the summative data that is the record of individual progress and development over time; what worked and what didn’t. The cumulative data is the sum of the summative data; including many people over time. Cumulative data allow for identification of trends in the system and for system planning. Each of these levels must be collected, archived and analyzed by the Independent Research Unit. The formative and summative data are developed and collected by the other components. Such data should also be of use to the other system components in terms of transforming their own behavior to improve performance.

• All data requires a response.

No data collection should occur, if the data is not going to be used. The System must have a plan for response to all data collection that includes: analysis; reporting and consequences that are oriented towards continuous quality improvement.

• All measurement must be against the outcome specifications of the short term and the outcome expectations of the long term.

While formative data is concerned primarily with short-term questions; such questions must be posed with an eye to the long term. For example, if a child is noncommunicative and the System determines that such a deficit is likely to continue; decisions about adaptive supports must be made in the context of the system outcome expectations: e.g., what choice will maximize the person’s ability to work, live independently, etc. Such considerations should be documented.

• Providers who do not regularly meet short or long term outcome expectations will not receive referrals.

While the system is organized as a “learning” entity, it is incumbent upon each provider to learn as well. If over time, providers that are unable or unwilling to change practices that have proven ineffective in short OR long term, they will cease to be a part of the system. Providers have the right to their own opinions about what is appropriate, but the System is designed to document effective practices and will move in that direction. For those providers of service who agree to the need to improve their capacity to provide quality services, the System has a responsibility to provide supports and training opportunities to enhance such improvement.

Next Steps

If the direction of this Report is accepted by the principle sponsors, there are additional steps required before implementation. It is recommended by the Committee that the process be expanded to include providers, parents, academics, and administrators in “fleshing out” the detail of system transformation. Among the specific tasks are:

1. Identification of an Independent Research Unit who can facilitate the development and early implementation of the system. It is estimated that this will be at minimum a five-year process with gradual transition to a Research & Development Unit.

2. The development and implementation of Task Committees to address:

• development of a diagnostic protocol and training.
• development of a Comprehensive Assessment Unit
  • staffing
  • auspices
  • protocols
• development of provider expertise index: any person or organization which provides services directly to a primary or secondary client.
• development of Plan Management Unit
  • staffing
  • aegis
  • protocols
• development of a system “road map”: the filling out of the services and supports offered by client, characteristic, age, and location. Parents should be able to see what is available for their child across life domains five or ten years down the “road”.
• development of specific outcome objectives that are age and characteristic appropriate across all domains which provide short term outcome expectations.
• development of performance contracts for providers.
• development of protocol for innovative or “experimental” programs.
• development of age groups, diagnostic/assessment groupings and skill area guidelines.
• development of a cross system data collection system.
• development of response protocol
• development of a systematic method to train stakeholders of the system as to new expectations and performance.

Four specific sub-committees are recommended to start the task of addressing detail.

• program detail and curriculum: this committee would address the issues originally defined in the Interim Report and result in a Prescriptive Menu of services offered by the System.
• program evaluation: this committee would work with the Research Entity to develop the criteria for evaluation.
• transition / community supports: this committee would work to identify natural resources and make them accessible.
• assessment plan development / plan management: this committee would work on the detail of coordinating and integrating education, treatment, social and family plans into a compressive whole and consider how the Plan Team and Manager would operate.

3. The development and implementation of a funding decision. It is imperative that funding not drive the system. However, if changes are to be made, each of the systems will require a waiver of categorical regulations.

The Committee recognized the need for representatives of the sponsoring agencies to develop a finance committee to negotiate a financial plan which will enable need, not to finance drive the system. This committee must be oriented towards possibilities rather than constraints, moving forward with an attitude of how can we accomplish this rather than with identifying barriers. It is unlikely that the development of a transformation system can take place without at least some waivers from the present financial and regulatory environment. However, the time for such innovation is clearly overdue and a focus on possibilities can be well merited.

4. The development of a grant application to government or private sources to support the transformation of the program. Too often transformations fail because the funding requirements exceed the capacity of the system until such time as the efficiencies of the system take effect.

Another financial committee might also be directed towards the development of “venture capital” which will enable certain duplicative costs of transformation [such as re-training staff, or continuation of present case management responsibilities while the new Plan Management component is being developed] does not deplete the resources of the system. A development committee that uses the combined influences of the sponsoring agencies to seek additional resources is certainly warranted.

Finally, an ongoing financial committee will be required to maintain cost/benefit data and to allocate “unit costs” for each Comprehensive Plan. As with any financial planning endeavor, this should improve over time.

SUMMARY DISCUSSION

The Ad Hoc System Design Committee is well aware that the presentation of this framework denotes the beginning of a transformation process and as such will raise as much anxiety about change as it will provide a basis for change. The Report is at once, too complete and not complete enough. The change envisioned here is likely to disrupt the standard operating patterns and require high levels of commitment from the Change Sponsors. Such commitment to a specific outcome will mean that the goals are pursued in a consistent fashion over time and in varying situations, resisting short term benefit for long term outcomes. Such a commitment is not likely to be comfortable on a variety of levels.

• other parts of the individual systems will be affected and either want to be isolated from the chaos or be a part of the opportunity.
• family members will see either a sacrifice of their own children for future good of other children or an opportunity for their children to be a part of a continuing quality improvement.
• funding sources will either wholeheartedly support the innovation, provide resources and then expect to see changes; or they will be resistive and need demonstrations of success before they will join the “band wagon”.
• political pressure is likely to build towards the change, but want it today; or build against the change and want to protect what is.

Conner and Patterson suggest that there are three developmental phases are required for major transformation: preparation, awareness and commitment.

Preparation:

The earliest encounter a person has with the fact that change may take place is likely to cause some anxiety even if change is sought. The Sponsors will need to patiently provide information on what is and what will be diminishing confusion and providing a basis for understanding. Each individual will view this transformational reality independently and it is up to the Sponsors to move individuals towards a positive position.

Awareness:

As individuals in the system move towards a positive position, they will be seeking a reduction of uncertainty. System sponsors have two potential methods of providing certainty. They can establish the fact that this transformation will happen, and they can provide opportunities for many agents to contribute to it happening. The first is accomplished through clarity of outcome expectation around which there is no possible opposition. The second provides an opportunity for people to participate in and decide how best to reach the outcomes. Change is only problematic when it is your change; my change is always progress.

Commitment:

An environment that encourages open discussion of concerns and the generation of possible solutions tends to solve problems, promote ownership and build commitment to action. A strong pattern of organizational expectation replaces the Sponsors function. Not all change requires that people believe in what they are doing: some projects require only that they do it. Whereas the organizations impose the institutionalization of the change, the participants themselves control internalization. Only when the organizational expectation becomes congruent with personal interest and values will commitment occur.

Typically, managers devote much time, money and energy to making the right decision regarding what should be changed and virtually no investment in building commitment to that decision. This can result in participants in that change achieving a level of intellectual commitment that far exceeds their emotional commitment. The process must avoid stereotypical attitudes that commitment is always good and resistance always bad. It is often though thorough exploration of the resistance that the dynamics of commitment occurs.

Inauguration

A decision by the sponsors to inaugurate this transformation will begin a paradoxical journey that demands from Change Sponsors intense personal commitment to outcomes with a generous tolerance for sharing difference. The focus must always be on guaranteeing the end result, while the how can be shaped by the skills of the participants.