The petition
Dear Esteemed Legislators of Vermont:
The Agency of Human Services has decided to have the Autism Plan Steering Committee take on a new role of establishing priorities under the autism plan report.
Starting last August, 75 people participated in various autism planning committees and a steering committee that continued until November. The work of the committees culminated in a report presented at the State House on January 23rd. The Report provided more than 60 recommendations for a strategic autism plan under Act 35.
This new role of the Steering Committee allows the committee to decide which of the recommendations made under the autism plan report will move forward (and which will be cast aside) in a report due to the legislators at the end of the session. We strongly believe that a new, special task force be formed for this purpose.
New purpose: New committee:
Our understanding of what a 'steering' committee does is to provide guidance and to summarize the work of sub-committees. Now that the autism plan report has been completed and the sub-committees have all disbanded, the steering committee is clearly no longer a steering committee as there is no one left to steer.
Transparency:
Despite all of our hard work and dedication, members of the sub-committees have been kept virtually in the dark about the autism plan process since the subcommittees disbanded in November. Although the decision to offer the Steering Committee members a new, expanded role was decided in November, it was not until the presentation of the autism report at the State House on January 23rd (a meeting that the subcommittees were never told about), that this decision was made public.
We believe that an insulated committee does not have ownership over a cause that has affected so many families in Vermont. There needs to be fairness in giving other parents an opportunity to participate in the process that can have significant impact on the lives of individuals and families. The process of how the parent representatives will be selected needs to be open.
Furthermore, the roles of and the type of committee that will be formed needs to be clarified. Is this to be a special committee, which would dissolve once the prioritizing has been completed or would this committee be contemplated as a standing committee?
Fairness:
When the invitation to join an autism plan committee was sent out last summer, some parents may have selected to be on the steering committee had they known there was a possibility of it morphing into a committee that sets the priorities. There also would have been more community scrutiny to ensure fair representation.
Representation across the spectrum:
Act 35 states that the autism plan shall include:
… Collaboration with individuals w/ASD and their families [and] shall reflect diversity in geography, in diagnoses, and in the severity of symptoms. It shall also ensure consideration of an individual's needs as a child, as a youth and as an adult.
The autism spectrum is made up of more than individuals with Asperger's or high functioning autism. The needs of both children and adults on polar ends of the spectrum could not be any more different. Although the parent members of the steering committee were made up of predominately (if not all) parents of individuals with HFA or Asperger's (plus high functioning ASD adults), a new committee looking at the lifespan needs of all individuals with autism should include an equal number of parents of individuals who are on the moderate and more severe end of the spectrum.
Parents of females on the spectrum should also be included in a new committee. As the minorities of the spectrum, the needs of females are often forgotten as they are outnumbered by males 4 to 1.
Seasoned Parents:
As we are looking at the lifespan needs of people with autism, there should be greater deference to parent committee members with the most experience in parenting an individual with autism. Parents of older children/adults can reflect on their 24/7 personal experience covering early intervention, school years, puberty and transition to adulthood.
A fair and open selection process:
We have many, many talented parents in our community who can bring their many years of parenting expertise to the table and who are willing to work in a collaborative environment.
The importance of a committee which decides on priorities for an entire community should not be downplayed. At the state house presentation of the autism plan report in January, representatives from both the DOE and AHS repeatedly stressed the wide involvement of families across the state in the development of the report. Although inconvenient, the process needs to continue to be open and fair if the new report is to be portrayed as being representative of the voice of the community.
We, the undersigned, believe that the task of deciding priorities would be better served by a task force whose parent members are chosen independent of State employee influence.
Therefore, we call upon the members of the legislature to establish an independent task force that matches what Act 35 envisioned. We request your assistance to guide this process of steering the autism plan to completion for the benefit of a population that cannot effectively communicate on their own behalf.
Respectfully,
the undersigned
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