Monday, April 27, 2009
The Autistic Community Mourns the Passing of Alyric
The Autistic Community Mourns the Passing of Alyric, a long-time activist and supporter of autistic rights and neurodiversity. She passed away on April 18, 2009, after a long and courageous battle with cancer. Her blog A Touch of Alyricism will remain intact. With her incisive commentary, Alyric was unwavering in her commitment to defend the rights of autistics to respect, honesty and accuracy in science and reporting, and was unafraid to take a strong stand about issues she believed in. Alyric touched many lives. She was always ready to help advocates with research, support, and encouragement. She was a well-respected advocate who made profoundly important and meaningful contributions to our community. We will miss her vibrant presence. Several bloggers have posted tributes to Alyric; here is one that describes her advocacy efforts in more detail.
Tuesday, April 21, 2009
Autistic People Deserve Equality: Petition to Tony Attwood and Isabelle Hénault
The Autistic Self Advocacy Network would like your support for our petition calling on Dr. Tony Attwood and Dr. Isabelle Hénault, two psychologists widely known for their writings and presentations in the area of Autism, to disassociate themselves from hate groups such as FAAAS and ASPIA that seek to encourage discrimination against Autistic people in family law and relationships. These groups promote the pseudoscientific concept of Cassandra Affective Deprivation Disorder, which is based on a prejudiced and scientifically unsupported claim that romantic involvement with an Autistic person causes a depressive disorder, and falsely claim that Autistics and people with neurological disabilities are likely to be violent and abusive in family relationships. Such stereotypes, which have caused people with disabilities to be deprived of parental rights and discriminated against in divorce and child custody cases, have no place in our society.
Drs. Attwood and Hénault, who have been regular presenters at Cassandra-related events over the past decade, currently are serving as members of the FAAAS Professional Advisory Panel. Their association with Cassandra hate groups threatens the civil rights of Autistic people and others with disabilities. Please join us in signing this petition to help secure the rights of all people to be treated equally under the law. If you also wish to send e-mails directly, tony@tonyattwood.com.au is the e-mail address for Dr. Attwood and ihenault@internet.uqam.ca is the e-mail address for Dr. Hénault. Also, here is a link to a statement by ASAN President Ari Ne'eman asking the community to sign the petition to Dr. Tony Attwood and Dr. Isabelle Hénault. Your support in ending stereotypes and discrimination is very much appreciated.
Monday, April 20, 2009
ASAN Group for Autistic Teens
ASAN has created a new online group for autistic teenagers and would like to invite interested people to participate. More details below:
A new yahoo group has been created exclusively for adolescents and teens on the autism spectrum, offering an opportunity for autistic adolescents and teens to interact in a supportive, autistic-friendly internet environment. The group is sponsored by the Autistic Self-Advocacy Network, an international non-profit organization run by and for autistic adults and youth, working to advance neurodiversity, disability rights and autistic culture.
Group Rules:
1. To join you must be on the autism spectrum (self-diagnosed individuals are welcome) and at least 13 years of age.
2. Be respectful of your fellow list members.
3. Do not repost messages outside of the list.
4. If you have a question, feel free to ask.
5. Do not engage in personal attacks against other list members.
The list will be closely moderated by adults from the Autistic Self Advocacy Network to ensure that all list content remains legal, age-appropriate, free of spam and solicitation, and in compliance with the group rules.
To join the group, visit http://groups.yahoo.com/group/ASANTeens , click the "Join this group" button, and follow the instructions.For more information, contact list moderator Dora Raymaker at dora@aaspireproject.org.
Please pass this information along to any adolescents and teens you know who would be interested!
A new yahoo group has been created exclusively for adolescents and teens on the autism spectrum, offering an opportunity for autistic adolescents and teens to interact in a supportive, autistic-friendly internet environment. The group is sponsored by the Autistic Self-Advocacy Network, an international non-profit organization run by and for autistic adults and youth, working to advance neurodiversity, disability rights and autistic culture.
Group Rules:
1. To join you must be on the autism spectrum (self-diagnosed individuals are welcome) and at least 13 years of age.
2. Be respectful of your fellow list members.
3. Do not repost messages outside of the list.
4. If you have a question, feel free to ask.
5. Do not engage in personal attacks against other list members.
The list will be closely moderated by adults from the Autistic Self Advocacy Network to ensure that all list content remains legal, age-appropriate, free of spam and solicitation, and in compliance with the group rules.
To join the group, visit http://groups.yahoo.com/group/ASANTeens , click the "Join this group" button, and follow the instructions.For more information, contact list moderator Dora Raymaker at dora@aaspireproject.org.
Please pass this information along to any adolescents and teens you know who would be interested!
Friday, April 17, 2009
No Myths Autism PSA: A Different Kind of Autism Awareness
ASAN worked with the Dan Marino Foundation and Kent Creative to develop the following autism PSA. Take a look, tell us what you think and please spread the word with blogs and outreach.
Youtube link: http://www.youtube.com/watch?v=Y_dPZDcX_ck
Captioned Version: http://www.overstream.net/view.php?oid=udtvrbt0rlao
Go to www.NoMyths.org to learn more. This PSA is brought to you by the Autistic Self Advocacy Network (http://www.autisticadvocacy.org), Kent Creative (http://www.kentcreative.com/) and the Dan Marino Foundation (http://www.danmarinofoundation.org/).
About the Public Service Announcement
The "No Myths" PSA offers a refreshingly positive and optimistic view about life with autism. And it was written and performed by people who should know--individuals who are on the autism spectrum themselves. The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way. Ari Ne'eman, president of the Autistic Self Advocacy Network, leads a cast that includes {in order of appearance} Dena Gassner, Ben Liske, and Jacob Pratt.
The Dan Marino Foundation of Weston, FL sponsored the piece, which was filmed by Nashville-based Kent Creative. Jon Kent directed the PSA and Britt Simmons was the Director of Photography.
"No Myths" was filmed inside the Parthenon in Nashville, TN. The Nashville Parthenon, which was built in 1897, is a full-scale replica of the ancient Greek Temple. The two bronze doors, used as a symbol throughout the PSA, weigh 7.5 tons each, and are thought to be the largest pair of matching bronze doors in existence. The producers wish to thank Citation Film Support and the Filmworker's Club of Nashville for their generous support of this project.
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530
Youtube link: http://www.youtube.com/watch?v=Y_dPZDcX_ck
Captioned Version: http://www.overstream.net/view.php?oid=udtvrbt0rlao
Go to www.NoMyths.org to learn more. This PSA is brought to you by the Autistic Self Advocacy Network (http://www.autisticadvocacy.org), Kent Creative (http://www.kentcreative.com/) and the Dan Marino Foundation (http://www.danmarinofoundation.org/).
About the Public Service Announcement
The "No Myths" PSA offers a refreshingly positive and optimistic view about life with autism. And it was written and performed by people who should know--individuals who are on the autism spectrum themselves. The purpose of the PSA is to tell society that, with the right supports, people with autism can do anything anybody else can do, even if it isn't in the same way. Ari Ne'eman, president of the Autistic Self Advocacy Network, leads a cast that includes {in order of appearance} Dena Gassner, Ben Liske, and Jacob Pratt.
The Dan Marino Foundation of Weston, FL sponsored the piece, which was filmed by Nashville-based Kent Creative. Jon Kent directed the PSA and Britt Simmons was the Director of Photography.
"No Myths" was filmed inside the Parthenon in Nashville, TN. The Nashville Parthenon, which was built in 1897, is a full-scale replica of the ancient Greek Temple. The two bronze doors, used as a symbol throughout the PSA, weigh 7.5 tons each, and are thought to be the largest pair of matching bronze doors in existence. The producers wish to thank Citation Film Support and the Filmworker's Club of Nashville for their generous support of this project.
Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530
Saturday, March 14, 2009
Youth Leadership Forum - Applications Due By March 31, 2009
"Empowering Young Leaders for the 21st Century"
http://www.vaboard.org/ylf.htm
The YLF-VA program seeks to empower young people with disabilities to further develop their leadership skills. Students, serving as Delegates from communities throughout Virginia, participate in a wide range of activities and learning experiences during the four day Youth Leadership Forum set on a university campus.
The YLF curriculum includes training and development of individual career and life-goals, leadership skills, social skills, and self-esteem. Delegates benefit from sharing the experience of an energetic and socially enriched environment with other delegates, distinguished guests, mentors, and highly motivated volunteer staff.
Program Components:
Small Working Groups to explore and develop self-awareness profiles, personal leadership goals, career and academic plans.
Diverse Activities including educational, social, artistic, athletic and recreational events that demonstrate to young people the joy of leading a well-rounded life.
Guest Speakers and Faculty that address issues such as disability rights laws, innovations in technology, use of assistive technology, employment opportunities, community volunteerism, advocacy and legislative opportunities in the Commonwealth.
Interaction with Guest speakers and staff-people with disabilities from the private and public sector who have successful careers and/or businesses and who have maximized their talents and serve as role models.
Field trip to the State Capitol that provides an opportunity to interact with high-level elected officials in Virginia's state government.
Eligibility, Recruitment, and Selection of Student Delegates:
Eligible candidates include rising high school juniors and seniors from Virginia who have a disability, are highly motivated, and have demonstrated leadership potential.
Student Delegates are recruited statewide through a competitive application and interview process. Application requirements include written references and in-person interviews. Recruitment strategies incorporate criteria into the student selection process that, while being competitive, enable students to attend the Forum who might otherwise not have the opportunity for leadership development and who demonstrate potential and desire to become future leaders. Recruitment and selection strategies include procedures and outreach that demonstrate full commitment to including students with developmental disabilities as well as other disabilities.
Volunteers:
The YLF depends on a committed network of volunteers. The volunteers are involved in all aspects of assuring a successful experience for the Delegates including planning and preparation, delegate recruitment and selection, fundraising, serving as YLF staff, speakers, panel members, mentors, or dorm parents, and assisting with travel and logistics. Volunteers come from a variety of diverse areas including directly from the community, service agencies and organizations, YLF Delegate Alumni, Partners in Policymaking Alumni and other organizations.
Applications & Forms
An application to participate as a student Delegate to the Youth Leadership Forum may be submitted by e-mail, by fax, by U.S. Mail, or by direct delivery. Information on how to complete and submit the application in each of these ways is included in their instructions. Electronic submission by e-mail is preferred.
http://www.vaboard.org/ylf.htm
http://www.vaboard.org/ylf.htm
The YLF-VA program seeks to empower young people with disabilities to further develop their leadership skills. Students, serving as Delegates from communities throughout Virginia, participate in a wide range of activities and learning experiences during the four day Youth Leadership Forum set on a university campus.
The YLF curriculum includes training and development of individual career and life-goals, leadership skills, social skills, and self-esteem. Delegates benefit from sharing the experience of an energetic and socially enriched environment with other delegates, distinguished guests, mentors, and highly motivated volunteer staff.
Program Components:
Small Working Groups to explore and develop self-awareness profiles, personal leadership goals, career and academic plans.
Diverse Activities including educational, social, artistic, athletic and recreational events that demonstrate to young people the joy of leading a well-rounded life.
Guest Speakers and Faculty that address issues such as disability rights laws, innovations in technology, use of assistive technology, employment opportunities, community volunteerism, advocacy and legislative opportunities in the Commonwealth.
Interaction with Guest speakers and staff-people with disabilities from the private and public sector who have successful careers and/or businesses and who have maximized their talents and serve as role models.
Field trip to the State Capitol that provides an opportunity to interact with high-level elected officials in Virginia's state government.
Eligibility, Recruitment, and Selection of Student Delegates:
Eligible candidates include rising high school juniors and seniors from Virginia who have a disability, are highly motivated, and have demonstrated leadership potential.
Student Delegates are recruited statewide through a competitive application and interview process. Application requirements include written references and in-person interviews. Recruitment strategies incorporate criteria into the student selection process that, while being competitive, enable students to attend the Forum who might otherwise not have the opportunity for leadership development and who demonstrate potential and desire to become future leaders. Recruitment and selection strategies include procedures and outreach that demonstrate full commitment to including students with developmental disabilities as well as other disabilities.
Volunteers:
The YLF depends on a committed network of volunteers. The volunteers are involved in all aspects of assuring a successful experience for the Delegates including planning and preparation, delegate recruitment and selection, fundraising, serving as YLF staff, speakers, panel members, mentors, or dorm parents, and assisting with travel and logistics. Volunteers come from a variety of diverse areas including directly from the community, service agencies and organizations, YLF Delegate Alumni, Partners in Policymaking Alumni and other organizations.
Applications & Forms
An application to participate as a student Delegate to the Youth Leadership Forum may be submitted by e-mail, by fax, by U.S. Mail, or by direct delivery. Information on how to complete and submit the application in each of these ways is included in their instructions. Electronic submission by e-mail is preferred.
http://www.vaboard.org/ylf.htm
Partners in Policymaking - 2009-2010 Applications Due by April 30, 2009
Become a Partner in Policymaking
http://www.vaboard.org/policymaking.htm
Recruitment of individuals with developmental disabilities and parents of young children with developmental disabilities for the 2009-2010 Virginia Board for People with Disabilities’ (VBPD) Partners in Policymaking (PIP) advocacy training program is currently underway. Partners graduating with the Class of 2010 will join over three hundred current alumni of the Virginia PIP program, and thousands who have graduated from similar programs across the country, who have learned how to make a difference every day for themselves, their families, and their communities.
Individuals participating in PIP attend advocacy training, resource development, and skill building workshops led by state and national experts. Topics covered include the history of the disability movement, self advocacy, independent living, supported employment, building inclusive communities, natural supports, legislative advocacy, assistive technology, communication, team building, and much more!
VBPD covers all expenses for participants’ training, lodging, meals, and travel.
Program participants attend and actively participate in eight two-day sessions, from Friday afternoon and to late Saturday afternoon, in Richmond, Virginia. Detailed information including how to apply, an overview of the program, the schedule for the coming year, and staff contacts appear below.
To Apply
To be considered for participation in Partners in Policymaking, individuals must submit a completed application and provide three letters of recommendation. Applications and recommendations may be submitted by e-mail, by fax, by U.S. Mail, or by direct delivery. Information on how to complete and submit the application in each of these ways is included in its instructions. Electronic submission by e-mail is preferred.
To complete an application electronically, then submit it by e-mail, fax, mail, or direct delivery, click on the following link:
Partners in Policymaking Application (Interactive Word Format)
This application may also be printed and completed by hand for submission by fax, mail, or direct delivery.
Annual PIP enrollment is limited. To be considered for the coming year, completed application forms and letters of recommendation must be received in the Virginia Board for People with Disabilities office by no later than close of business on the announced deadline, listed above and on the application form.
Overview
Partners in Policymaking participants are people who live in Virginia, have a developmental disability or are parents of young children with developmental disabilities. Individuals attending the program will participate in advocacy skill workshops, resource development, and leadership training.
Application and selection as a participant for the program requires a substantial commitment of time, motivation and energy. If accepted, the Partners in Policymaking program requires attendance and participation in eight two-day sessions between September and May. Each session begins on Friday afternoon and concludes Saturday afternoon. Participants meet competencies by agreeing to complete homework, class assignments and one major project.
The group of selected participants will build networks with state and national leaders as well as one another. Participants will be educated on current issues, state-of-the-art approaches and best practices in many areas including:
History of Disability Movements
Self-Advocacy
Independent Living
Inclusive Education
Supported Employment
Personal Futures Planning
Building Inclusive Communities
Natural Supports
Assistive Technology
Communication & Team Building
Legislative Process and Strategies
http://www.vaboard.org/policymaking.htm
http://www.vaboard.org/policymaking.htm
Recruitment of individuals with developmental disabilities and parents of young children with developmental disabilities for the 2009-2010 Virginia Board for People with Disabilities’ (VBPD) Partners in Policymaking (PIP) advocacy training program is currently underway. Partners graduating with the Class of 2010 will join over three hundred current alumni of the Virginia PIP program, and thousands who have graduated from similar programs across the country, who have learned how to make a difference every day for themselves, their families, and their communities.
Individuals participating in PIP attend advocacy training, resource development, and skill building workshops led by state and national experts. Topics covered include the history of the disability movement, self advocacy, independent living, supported employment, building inclusive communities, natural supports, legislative advocacy, assistive technology, communication, team building, and much more!
VBPD covers all expenses for participants’ training, lodging, meals, and travel.
Program participants attend and actively participate in eight two-day sessions, from Friday afternoon and to late Saturday afternoon, in Richmond, Virginia. Detailed information including how to apply, an overview of the program, the schedule for the coming year, and staff contacts appear below.
To Apply
To be considered for participation in Partners in Policymaking, individuals must submit a completed application and provide three letters of recommendation. Applications and recommendations may be submitted by e-mail, by fax, by U.S. Mail, or by direct delivery. Information on how to complete and submit the application in each of these ways is included in its instructions. Electronic submission by e-mail is preferred.
To complete an application electronically, then submit it by e-mail, fax, mail, or direct delivery, click on the following link:
Partners in Policymaking Application (Interactive Word Format)
This application may also be printed and completed by hand for submission by fax, mail, or direct delivery.
Annual PIP enrollment is limited. To be considered for the coming year, completed application forms and letters of recommendation must be received in the Virginia Board for People with Disabilities office by no later than close of business on the announced deadline, listed above and on the application form.
Overview
Partners in Policymaking participants are people who live in Virginia, have a developmental disability or are parents of young children with developmental disabilities. Individuals attending the program will participate in advocacy skill workshops, resource development, and leadership training.
Application and selection as a participant for the program requires a substantial commitment of time, motivation and energy. If accepted, the Partners in Policymaking program requires attendance and participation in eight two-day sessions between September and May. Each session begins on Friday afternoon and concludes Saturday afternoon. Participants meet competencies by agreeing to complete homework, class assignments and one major project.
The group of selected participants will build networks with state and national leaders as well as one another. Participants will be educated on current issues, state-of-the-art approaches and best practices in many areas including:
History of Disability Movements
Self-Advocacy
Independent Living
Inclusive Education
Supported Employment
Personal Futures Planning
Building Inclusive Communities
Natural Supports
Assistive Technology
Communication & Team Building
Legislative Process and Strategies
http://www.vaboard.org/policymaking.htm
Wednesday, December 31, 2008
JLARC autism study-ASAN comments
The Autistic Self Advocacy Network-VA sent this comment to Virginia’s Joint Legislative Audit and Review Commission (JLARC). JLARC is conducting a study of autism services in the state.
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The Autistic Self Advocacy Network appreciates the Joint Legislative Audit and Review Commission (JLARC) opportunity to address the state of autism services in Virginia.
In general, a main factor that impacts the ability of Virginians on the autism spectrum to access services is the lack of a central location online, or agency-based clearinghouse to access information about services. Information about autism and developmental disability-related services and programs is not disseminated from any central location.
Adults on the autism spectrum may need accommodations in order to access information about services, and the services themselves. Some options include online information access in a single location. Information should include housing options, health care access, and assistance in navigating various agencies and systems, since often the amount of information, paperwork, phone calls, etc. can preclude someone being able to access assistance effectively, if at all. Families of adults on the autism spectrum often also need access to information about available services. The EasyAccess site does provide some information but a search of that site does not provide autism-specific information that could be useful to parents and people on the autism spectrum.
The VA Board for People with Disabilities or another DD agency should have an online portal specifically for autism, and also dedicated staff, to ensure that families, and individuals on the autism spectrum, are able to obtain accurate and timely information.
Key services needed:
Housing:
Alternatives to group homes, ICF/MRs and institutions. Put more money into the hands of people on the autism spectrum and families rather than shoring up aging institutions. Virginia is one of only three states that has closed no institutions. The DD and MR waiver wait lists are years long. Consider public-private initiatives. Housing considerations should include: accessibility to public transportation, safety considerations, affordability, and availability of support personnel if needed.
In addition, the lack of accessible, affordable housing is a major barrier to independent living.
Health care access for age 21 and over:
Adults on the autism spectrum need access to medical services, including appointment-making assistance, help with identification of health needs, preventative health care, and training of medical personnel including office staff, so that access is more likely and more effective.
Identify, develop, and disseminate "autism-friendly" physicians' practices, with such accommodations as online scheduling, some assistance with insurance claims, and the like. This could be a pilot project with input from people on the autism spectrum. A current community-based research project by The Academic Autistic Spectrum Project in Research and Education is studying health care access issues. Utilize findings from this study (when available) in order to determine health care needs and access
needs of adults on the autism spectrum. (http://www.aaspireproject.org)
Personal assistance services (PAs) are needed by some individuals on the autism spectrum, both children, and adults who have aged out of education and health insurance systems. The Autistic Self Advocacy Network recommends training of appropriate service personnel, with input from autistic adults, who will have the most informed ideas about what kinds of care they need.
Assistive technology access:
Information about assistive technology, including assistive and augmentive communication devices available, funding sources, and state insurance requirements. Information and links to assistive technology information sites, and decisionmaking options (not just sites that actively sell assistive and augmentive communication devices) should be provided at the central location we recommend.
Employment options:
Training of employers and co-workers so that more people on the autism spectrum can be placed in situations that will work for both the employee and the employer. Suggestions include an information brochure for employers who are identified as wanting to participate in an assisted employment program. Input from adults and
teens on the autism spectrum as to needs in the workplace is crucial.
Job counseling for individuals on the autism spectrum. The job counseling should be individualized and tailored to the individual’s needs and understanding about employment options. Job counseling should not follow stereotyped assumptions about what jobs or employment situations are appropriate for people on the autism spectrum. Again, input from and consultation with autistic adults can be invaluable.
Transportation:
Many teens and adults on the autism spectrum do not drive, yet have transportation needs for employment, health care, personal, and recreation needs. Increasing the types of transportation available, both fixed-time and route and on-demand services, is crucial for full integration into the community. In addition, some adults may need assistance with understanding bus schedules and other forms of transportation so as to be able to access available transportation. One model, which takes into account such issues as sensory differences, is the United Kingdom’s Disabled Persons Transport Advisory Committee. This committee works to address barriers to accessibility, including the training of transportation staff in awareness of various disabilities and how they impact users of public transportation.
Transition supports:
Under the Individuals with Disabilities Education Act, students with disabilities who have Individualized Education Plans must receive a plan for transition by age 16. However, Virginia state law mandates that such a plan be implemented by age 14. This earlier age for transition planning should be kept in place. In addition, to facilitate effective transition planning, the state should work to integrate the adult services infrastructures, such as Vocational Rehabilitation, Community Living and similar service-delivery systems, with the transition process in Virginia high schools. Experiential learning options have been shown to have a positive impact on student transition and should be incorporated into student IEPs in a way that works with the unique strengths of autistic students. Furthermore, Virginia must work to increase the number of students on the autism spectrum who will have access to higher education opportunities. As students with disabilities in the post-IDEA infrastructure sometimes require documentation to qualify for ADA accommodations in higher education and the workplace, Virginia should institute a requirement that schools offer parents the opportunity to receive new, current educational testing prior to graduation, in order to ensure students leave school with the necessary materials for accessing their legal rights in the post-IDEA infrastructure.
Adequacy of autism service delivery system:
Diagnoses of young children: Some publications in the state of Virginia geared toward newly diagnosed children are unnecessarily alarmist. A quote from the first sentence in a packet from on of the major diagnostic clinics: "Parents are devastated when they learn of an autism diagnosis." This leaves no room for parents to have other reactions, and has been off-putting in some cases, leading parents to look elsewhere for information. Diagnoses should stick to known facts about autism spectrum conditions.
Diagnosticians should consult with parents, families, and individuals on the spectrum as to the best ways of disseminating information about diagnoses. The Autistic Self
Advocacy Network currently consults with parents of newly diagnosed children to provide alternative, and more affirming views of autism without neglecting the very real challenges that families and individuals on the spectrum face.
Public school services:
Training of aides and teaching assistants in understanding of autism spectrum conditions. In addition to knowledge about behaviors, consult with adults on the autism spectrum for information about why behaviors occur. Consultation with adults on the autism spectrum, who are necessarily more familiar with the needs of autistic persons than anyone else, should be a preferred source of information on this matter.
Strategies like Positive Behavioral Supports should be developed and implemented
throughout all school districts. Pilot programs can be developed in several districts and then disseminated throughout the entire state.
There is no regulation or oversight regarding the use of restraints and seclusion time-outs for children with special needs, including autism, in Virginia public schools. The only document is the 2005 "Guidelines for the Development of Policies and Procedures for
Managing Student Behaviors in Emergency Situations in Virginia Schools Focusing on Physical Restraint and Seclusion."
The preface to the document asserts: "These guidelines are informational and are neither mandated nor required." Without adequate regulation and legislation regarding the use of restraints and seclusion, children, particularly those with special needs, including autism, are at risk for being subject to abuse of restraint devices and seclusion rooms.
Adequacy of coordination of services over entire lifetime:
Many parents and individuals on the autism spectrum feel that once they age out of the school system, there are few services, and the services there are, are not accessible. Parent advocates and self-advocates are creating their own programs (one source is graduates of VBPD's Partners in Policymaking program) to fill in the gaps in supported
employment, housing, community day programs, and others.
Even with dedicated efforts by individual advocates and organizations, state-level and/or public-private initiatives (with oversight) need to be in place. Children who are on the autism spectrum now will grow into adulthood as autistic individuals, many with some remaining degree of disability. Services and supports need to be in place and ongoing for future generations of Virginians with developmental disabilities. The Autistic Self Advocacy Network has a growing network of consultants on the autism spectrum who can assist with development of programs, including public policy advocacy, outreach to media, educational consulting, and social and support groups and networks.
---
The Autistic Self Advocacy Network appreciates the Joint Legislative Audit and Review Commission (JLARC) opportunity to address the state of autism services in Virginia.
In general, a main factor that impacts the ability of Virginians on the autism spectrum to access services is the lack of a central location online, or agency-based clearinghouse to access information about services. Information about autism and developmental disability-related services and programs is not disseminated from any central location.
Adults on the autism spectrum may need accommodations in order to access information about services, and the services themselves. Some options include online information access in a single location. Information should include housing options, health care access, and assistance in navigating various agencies and systems, since often the amount of information, paperwork, phone calls, etc. can preclude someone being able to access assistance effectively, if at all. Families of adults on the autism spectrum often also need access to information about available services. The EasyAccess site does provide some information but a search of that site does not provide autism-specific information that could be useful to parents and people on the autism spectrum.
The VA Board for People with Disabilities or another DD agency should have an online portal specifically for autism, and also dedicated staff, to ensure that families, and individuals on the autism spectrum, are able to obtain accurate and timely information.
Key services needed:
Housing:
Alternatives to group homes, ICF/MRs and institutions. Put more money into the hands of people on the autism spectrum and families rather than shoring up aging institutions. Virginia is one of only three states that has closed no institutions. The DD and MR waiver wait lists are years long. Consider public-private initiatives. Housing considerations should include: accessibility to public transportation, safety considerations, affordability, and availability of support personnel if needed.
In addition, the lack of accessible, affordable housing is a major barrier to independent living.
Health care access for age 21 and over:
Adults on the autism spectrum need access to medical services, including appointment-making assistance, help with identification of health needs, preventative health care, and training of medical personnel including office staff, so that access is more likely and more effective.
Identify, develop, and disseminate "autism-friendly" physicians' practices, with such accommodations as online scheduling, some assistance with insurance claims, and the like. This could be a pilot project with input from people on the autism spectrum. A current community-based research project by The Academic Autistic Spectrum Project in Research and Education is studying health care access issues. Utilize findings from this study (when available) in order to determine health care needs and access
needs of adults on the autism spectrum. (http://www.aaspireproject.org)
Personal assistance services (PAs) are needed by some individuals on the autism spectrum, both children, and adults who have aged out of education and health insurance systems. The Autistic Self Advocacy Network recommends training of appropriate service personnel, with input from autistic adults, who will have the most informed ideas about what kinds of care they need.
Assistive technology access:
Information about assistive technology, including assistive and augmentive communication devices available, funding sources, and state insurance requirements. Information and links to assistive technology information sites, and decisionmaking options (not just sites that actively sell assistive and augmentive communication devices) should be provided at the central location we recommend.
Employment options:
Training of employers and co-workers so that more people on the autism spectrum can be placed in situations that will work for both the employee and the employer. Suggestions include an information brochure for employers who are identified as wanting to participate in an assisted employment program. Input from adults and
teens on the autism spectrum as to needs in the workplace is crucial.
Job counseling for individuals on the autism spectrum. The job counseling should be individualized and tailored to the individual’s needs and understanding about employment options. Job counseling should not follow stereotyped assumptions about what jobs or employment situations are appropriate for people on the autism spectrum. Again, input from and consultation with autistic adults can be invaluable.
Transportation:
Many teens and adults on the autism spectrum do not drive, yet have transportation needs for employment, health care, personal, and recreation needs. Increasing the types of transportation available, both fixed-time and route and on-demand services, is crucial for full integration into the community. In addition, some adults may need assistance with understanding bus schedules and other forms of transportation so as to be able to access available transportation. One model, which takes into account such issues as sensory differences, is the United Kingdom’s Disabled Persons Transport Advisory Committee. This committee works to address barriers to accessibility, including the training of transportation staff in awareness of various disabilities and how they impact users of public transportation.
Transition supports:
Under the Individuals with Disabilities Education Act, students with disabilities who have Individualized Education Plans must receive a plan for transition by age 16. However, Virginia state law mandates that such a plan be implemented by age 14. This earlier age for transition planning should be kept in place. In addition, to facilitate effective transition planning, the state should work to integrate the adult services infrastructures, such as Vocational Rehabilitation, Community Living and similar service-delivery systems, with the transition process in Virginia high schools. Experiential learning options have been shown to have a positive impact on student transition and should be incorporated into student IEPs in a way that works with the unique strengths of autistic students. Furthermore, Virginia must work to increase the number of students on the autism spectrum who will have access to higher education opportunities. As students with disabilities in the post-IDEA infrastructure sometimes require documentation to qualify for ADA accommodations in higher education and the workplace, Virginia should institute a requirement that schools offer parents the opportunity to receive new, current educational testing prior to graduation, in order to ensure students leave school with the necessary materials for accessing their legal rights in the post-IDEA infrastructure.
Adequacy of autism service delivery system:
Diagnoses of young children: Some publications in the state of Virginia geared toward newly diagnosed children are unnecessarily alarmist. A quote from the first sentence in a packet from on of the major diagnostic clinics: "Parents are devastated when they learn of an autism diagnosis." This leaves no room for parents to have other reactions, and has been off-putting in some cases, leading parents to look elsewhere for information. Diagnoses should stick to known facts about autism spectrum conditions.
Diagnosticians should consult with parents, families, and individuals on the spectrum as to the best ways of disseminating information about diagnoses. The Autistic Self
Advocacy Network currently consults with parents of newly diagnosed children to provide alternative, and more affirming views of autism without neglecting the very real challenges that families and individuals on the spectrum face.
Public school services:
Training of aides and teaching assistants in understanding of autism spectrum conditions. In addition to knowledge about behaviors, consult with adults on the autism spectrum for information about why behaviors occur. Consultation with adults on the autism spectrum, who are necessarily more familiar with the needs of autistic persons than anyone else, should be a preferred source of information on this matter.
Strategies like Positive Behavioral Supports should be developed and implemented
throughout all school districts. Pilot programs can be developed in several districts and then disseminated throughout the entire state.
There is no regulation or oversight regarding the use of restraints and seclusion time-outs for children with special needs, including autism, in Virginia public schools. The only document is the 2005 "Guidelines for the Development of Policies and Procedures for
Managing Student Behaviors in Emergency Situations in Virginia Schools Focusing on Physical Restraint and Seclusion."
The preface to the document asserts: "These guidelines are informational and are neither mandated nor required." Without adequate regulation and legislation regarding the use of restraints and seclusion, children, particularly those with special needs, including autism, are at risk for being subject to abuse of restraint devices and seclusion rooms.
Adequacy of coordination of services over entire lifetime:
Many parents and individuals on the autism spectrum feel that once they age out of the school system, there are few services, and the services there are, are not accessible. Parent advocates and self-advocates are creating their own programs (one source is graduates of VBPD's Partners in Policymaking program) to fill in the gaps in supported
employment, housing, community day programs, and others.
Even with dedicated efforts by individual advocates and organizations, state-level and/or public-private initiatives (with oversight) need to be in place. Children who are on the autism spectrum now will grow into adulthood as autistic individuals, many with some remaining degree of disability. Services and supports need to be in place and ongoing for future generations of Virginians with developmental disabilities. The Autistic Self Advocacy Network has a growing network of consultants on the autism spectrum who can assist with development of programs, including public policy advocacy, outreach to media, educational consulting, and social and support groups and networks.
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