In today's difficult economy, many people are finding it hard to get or keep jobs that provide health insurance. A mother recently contacted ASAN Southwest Ohio with an inquiry regarding insurance options for her autistic son, who was working part-time in a position that did not provide health insurance. He was about to turn 19 years old, which was the age cutoff for dependent coverage under the mother's health policy.
We provided information about Ohio's Medicaid health insurance program for workers with disabilities. Ohio has a buy-in program that was created to enable Ohioans with disabilities to work and still have access to Medicaid health care coverage. The program covers both part-time workers and full-time workers. Depending on a worker's income, premium payments may or may not be required.
In addition, we advised her to check with her health insurance company to find out if her policy allowed continuing coverage for adult children with disabilities after the usual age cutoff.
Thursday, December 11, 2008
Saturday, November 1, 2008
ASAN Teen Group
ASAN has announced the formation of a new online group for autistic teenagers, to be moderated by Dora Raymaker of ASAN's Oregon chapter:
A new yahoo group has just been created to be open 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. It 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 just been created to be open 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. It 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!
Thursday, October 16, 2008
Presidential Candidates' Disability Positions
With the presidential election less than three weeks away, it is vital that Ohioans and other voters have accurate information concerning the candidates' positions. Accordingly, ASAN Southwest Ohio has contacted the Ohio Legal Rights Service, a state protection and advocacy agency for people with disabilities, regarding the need to correct an error in a chart prepared by the agency that compares the presidential candidates' positions on disability-related issues.
The chart incorrectly lists universal prenatal screening for autism among the Obama campaign's positions. In fact, there is no prenatal test for autism, and Sen. Obama does not advocate funding the development of such a test. The Obama campaign's position paper on autism calls for universal screening of two-year-old children.
The chart accurately identifies several significant policy differences between the candidates, including their positions on making community services available to people with disabilities. Sen. Obama is a co-sponsor of the Community Choice Act and of the Community Living Assistance, Services and Supports (CLASS) Act, whereas Sen. McCain is opposed to both.
More information regarding Sen. Obama's disability platform can be found at http://www.barackobama.com/issues/disabilities. Sen. Obama's campaign released this plan last year. No comparable position statements have been provided by Sen. McCain's campaign.
The candidates' positions were recently discussed at a Disability Forum in Athens, Ohio on October 12th. No representatives of Sen. McCain's campaign attended the event. Doug Rogers, a disability vote organizer for Sen. Obama's campaign, was present. Donna M. Jones, Sen. McCain's national coordinator for disability issues, sent an e-mail to one of the event organizers explaining that Sen. McCain's campaign does not currently have a disability policy. The e-mail, which was publicly read at the event, stated that no further information was available on when Sen. McCain's campaign might be releasing a platform discussing issues that relate to people with disabilities.
Update: The Ohio Legal Rights Service has corrected the error in its candidate positions chart.
The chart incorrectly lists universal prenatal screening for autism among the Obama campaign's positions. In fact, there is no prenatal test for autism, and Sen. Obama does not advocate funding the development of such a test. The Obama campaign's position paper on autism calls for universal screening of two-year-old children.
The chart accurately identifies several significant policy differences between the candidates, including their positions on making community services available to people with disabilities. Sen. Obama is a co-sponsor of the Community Choice Act and of the Community Living Assistance, Services and Supports (CLASS) Act, whereas Sen. McCain is opposed to both.
More information regarding Sen. Obama's disability platform can be found at http://www.barackobama.com/issues/disabilities. Sen. Obama's campaign released this plan last year. No comparable position statements have been provided by Sen. McCain's campaign.
The candidates' positions were recently discussed at a Disability Forum in Athens, Ohio on October 12th. No representatives of Sen. McCain's campaign attended the event. Doug Rogers, a disability vote organizer for Sen. Obama's campaign, was present. Donna M. Jones, Sen. McCain's national coordinator for disability issues, sent an e-mail to one of the event organizers explaining that Sen. McCain's campaign does not currently have a disability policy. The e-mail, which was publicly read at the event, stated that no further information was available on when Sen. McCain's campaign might be releasing a platform discussing issues that relate to people with disabilities.
Update: The Ohio Legal Rights Service has corrected the error in its candidate positions chart.
Wednesday, October 1, 2008
ASAN Coalition Comments on IACC Draft Plan
ASAN and other autism and disability rights organizations submitted the following joint comment yesterday to the Interagency Autism Coordinating Committee:
The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008
This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum. The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC's decision-making process, research topic selection, research design and research implementation.
The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.
The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:
1. All federally-funded researchers must consider the impact that their research will have on autistic citizens' human rights, their dignity, and the quality of their lives, from prenatal life forward.
Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.
2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.
Currently (as of May 12, 2008), only 1% of NIMH's $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee's "sense of urgency" when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.
For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals' processing strengths and state-of-the-art technology should be pursued.
Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, "We know that behavioral treatments make some difference but it's a relatively small amount of difference."
Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children's' needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.
3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.
Much research and fundraising language emphasizes "costs to society" and uses the disrespectful rhetoric of "burden." The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because "portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them." We strongly agree.
Similarly, many NIH-funded researchers and staff speak of autism as "a devastating disorder." However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as "impairments," but which, in reality, are often innocuous or compensatory mechanisms.
4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.
Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: "…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results." We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.
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
Andrew Imparato
President
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
http://www.aapd-dc.org/
Barbara Trader, MS
Executive Director
TASH
http://www.tash.org/
Sharisa Joy Kochmeister
President
Autism National Committee
http://www.autcom.org/
Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
http://www.taaproject.com/
Compiled by ASAN Board Member Paula C. Durbin-Westby
The Autistic Self Advocacy Network Coalition Comments on
Interagency Autism Coordinating Committee
Request for Information NOT-MH-08-021
September 30, 2008
This joint comment on the Draft Strategic Plan is submitted by The Autistic Self Advocacy Network and the undersigned organizations. Our combined organizations collectively represent thousands of citizens with disabilities, including individuals on the autism spectrum, as well as well as family members, professionals and other allies of citizens on the autism spectrum. The Autistic Self Advocacy Network aims to empower autistic people across the lifespan, by focusing on supports, service delivery, and education research. As such, we have an interest in the inclusion of autistic adults in all aspects of IACC's decision-making process, research topic selection, research design and research implementation.
The Autistic Self Advocacy Network applauds the efforts of the IACC to develop a Strategic Plan that will address the needs and concerns of individuals on the autism spectrum and our families. We are especially encouraged by the invitation extended by IACC members to listen to the viewpoint of autistic people, because our viewpoint frequently departs from the traditional concern with causes, cures, and prevention of all autism spectrum conditions.
The Autistic Self Advocacy Network and our supporting organizations suggest several areas of concern to be addressed in the draft Strategic Plan:
1. All federally-funded researchers must consider the impact that their research will have on autistic citizens' human rights, their dignity, and the quality of their lives, from prenatal life forward.
Research focused on early detection and intervention, prevention/preemption, pharmaceutical interventions, prenatal treatments, and the like needs to be conducted with the human dignity and rights of the individual as the foremost concerns.
2. Implement a research agenda that addresses services and supports for people on the autism spectrum throughout the lifespan. Change the emphasis of research away from prevention and cure and toward effective supports for community inclusion.
Currently (as of May 12, 2008), only 1% of NIMH's $127 million budget for autism research addresses the area of services and support. More resources should be allocated to this area. We share the committee's "sense of urgency" when we speak about quality-of-life issues for people on the autism spectrum, such as education, employment, and housing needs.
For example, a more aggressive agenda must be pursued for researching alternative and augmentative communication technology and other assistive communication technologies. The only augmentive/alternative communication technology mentioned in the Strategic Plan is PECS; however, PECS is not always appropriate or even useful to many people on the autism spectrum, particularly for those with visual processing difficulties, or those who need more sophisticated assistive technologies. Lower-cost communications devices need to be researched and tested to enable more people on the autism spectrum to communicate with their families and communities. New modes of alternative communication and augmentive communication that take advantage of autistic individuals' processing strengths and state-of-the-art technology should be pursued.
Interventions other than Applied Behavior Analysis must be studied. Because research on ABA has shown only limited positive outcomes, other methods must be studied, keeping in mind the heterogeneity of the autistic population. Not all people on the autism spectrum will respond positively to a single approach. As Dr. Catherine Lord of the University of Michigan Center for Human Growth and Development says, in her Omnibus Autism Proceedings testimony, "We know that behavioral treatments make some difference but it's a relatively small amount of difference."
Emphasis should also be placed on identifying the optimal and often unique ways that autistic people think, learn, communicate, and remember. Such research will help parents of autistic children and professionals who work with autistic children to better understand and meet those children's' needs. Examples from other areas illustrate this concept: Hearing parents of deaf children are often well served by learning to sign. Sighted parents of blind children are often well served by learning to read Braille. The same principle applies to parents of autistic children; parents deserve attention and intervention alongside their children. Right now, our interventions merely force autistic children to learn, think, behave, and communicate like non-autistic children. Instead, they should be taught how to learn, think, behave, and communicate like autistic children, so that they can maximize their capabilities.
Longitudinal studies that address quality-of-life and satisfaction-with-life issues need to be undertaken, including research on access and utilization of services in community settings. Research into living arrangements, employment options, relations within the community, guardianship questions, and other aspects of daily life need to be conducted. These are the issues we consider to be of greatest urgency.
3. Conduct research into unique strengths of autistic individuals and positive experiences of living with autism.
Much research and fundraising language emphasizes "costs to society" and uses the disrespectful rhetoric of "burden." The National Center on Disability and Journalism strongly recommends against describing persons with disabilities, or their disabilities, as burdens because "portraying [persons] with disabilities as a burden to family, friends, and society can dehumanize them." We strongly agree.
Similarly, many NIH-funded researchers and staff speak of autism as "a devastating disorder." However, many individuals on the autism spectrum do not feel that they are leading lives that are less worthy or more filled with suffering than those of other citizens. Moreover, a growing body of research literature demonstrates that the autistic spectrum profile can be accurately characterized by documented strengths, including the ability to focus on details and qualities such as intense interests, which can sometimes be channeled into productive employment. Research must also address education of the public, including parents, about traits that are often seen as "impairments," but which, in reality, are often innocuous or compensatory mechanisms.
4. Require that individuals on the autism spectrum be actively involved as collaborators and participants on all IACC subcommittees.
Most of the recent IACC workgroups, including the treatment and services workgroup, did not have adequate participation from members on the autism spectrum. If future workgroups are convened, every attempt must be made to include autistic individuals in more than a token way. Comparisons can be made to other fields in which persons affected by the research are involved in the research, such as deaf scientists who study deaf language and culture. As MacArthur Fellowship recipient Harlan Lane articulated with regard to deaf research: "…involve deaf people themselves at all levels of the undertaking. Federal agencies ... should require the projects they sponsor to turn preferentially to the deaf community for advisers and collaborators in research design and implementation, for assistance in data collection and analysis, for guidance in interpretation of results." We strongly recommend that the federal agencies that fund autism research endorse this socially responsible position and mandate the involvement of individuals on the autism spectrum in all aspects of the research process.
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
Andrew Imparato
President
American Association of People with Disabilities
1629 K Street NW, Suite 503
Washington, DC 20006
http://www.aapd-dc.org/
Barbara Trader, MS
Executive Director
TASH
http://www.tash.org/
Sharisa Joy Kochmeister
President
Autism National Committee
http://www.autcom.org/
Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project
http://www.taaproject.com/
Compiled by ASAN Board Member Paula C. Durbin-Westby
Tuesday, September 30, 2008
Another IACC Reminder
Today is the deadline for comments on the draft Strategic Plan prepared by the Interagency Autism Coordinating Committee (IACC) for autism research.
It is important that the IACC hear from as many of us as possible! Sullivan has prepared a quick and easy form for submitting your comments, with helpful suggestions for points of interest to autistic self-advocates and other neurodiversity supporters. If you have not yet responded, please take a few minutes to read the form and submit your suggestions for U.S. government autism research priorities. You need not include a detailed discussion in each section, if you don't have the time; what matters is to get our perspective across.
It is important that the IACC hear from as many of us as possible! Sullivan has prepared a quick and easy form for submitting your comments, with helpful suggestions for points of interest to autistic self-advocates and other neurodiversity supporters. If you have not yet responded, please take a few minutes to read the form and submit your suggestions for U.S. government autism research priorities. You need not include a detailed discussion in each section, if you don't have the time; what matters is to get our perspective across.
Wednesday, September 17, 2008
Talking Points for IACC Comments
ASAN would like to remind the autistic community of the upcoming deadline for comments to the Interagency Autism Coordinating Committee (IACC). We are asking people to write and send comments to the IACC and, if possible, also post your comments on blogs, forums, lists, etc., in the autistic community. Here is a list of helpful talking points prepared to assist our advocates in putting together comments. Many thanks to Paula of ASAN Virginia for her time and effort!
Hello,
Below is a document of considerable importance. Right now, the Interagency Autism Coordinating Committee is seeking public comment on issues relating to service-delivery. In our conversations with NIMH, we've heard a considerable willingness to move closer towards our position, if supported by a sufficiently strong public comment. The deadline on this is this coming Friday, the 19th. If people would be willing to post this on their blogs and also post their personal e-mails to NIMH on their blogs, we'd appreciate the help in turning people out to this. The initial version of this that has gone out on listservs and so on did not include the contact info to send the public comments to - an error on our part - but we've added it here. People should direct their comments, stories and so on to iaccservices@mail.nih.gov by September 19th, 2008.
More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html. I'd also like to add that this is the first of two public comments in relation to the IACC that will be due this month - we'll be sending out a primer on the second call for comments on the research Strategic Plan that will be due on the 30th. I have to stress here that volume is a major priority in what we want as far as responses go - we want lots of them and from lots of people. You don't need extensive citations or anything of that nature - just send something expressing your support for quality of life, communication and similarly important research priorities. This is a top priority for us and we hope you can help us bring out our population - again, the quantity of our response will indicate to NIMH the extent to which the neurodiversity/autistic self-advocacy community should be viewed as a major stakeholder.
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
ASAN BACKGROUND AND TALKING POINTS ON IACC REQUEST FOR INFORMATION ON SUPPORTS AND SERVICES
BACKGROUND:
The Interagency Autism Coordinating Committee (IACC) has put out a Request for Information (RFI) to seek input from stakeholders (those interested in autism), including autistic individuals, about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.
The RFI is due no later than Sept. 19, 2008, seven days from now. People should direct their comments to iaccservices@mail.nih.gov by September 19th, 2008. More info from NIMH can be found here: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html.
This RFI provides an excellent opportunity for self-advocates and allies to make our voices heard. Members of the IACC are very interested in hearing from individuals on the autism spectrum. They've heard extensively from the anti-vaccine crowd, from parents, experts, researchers, and from people on the autism spectrum.
More input from autistic adults at this point, when the IACC is coming close to finalizing a budget and mission statement for the Strategic Plan, will mean more attention to the issues we consider to be most important.
The focus of this particular RFI on services and supports is an area that many autistic adults have much to say about; here is a chance to say it directly to the committee that will be allocating resources to various areas. Currently, funding is skewed toward genetic research and research into treatments and interventions.
In the time that autistic individuals have been submitting comments and testifying at IACC meetings, some positive change has been noted in the amount of funds earmarked for research into services and supports.
It is important that the IACC hear from everyone who is able to comment because part of the task of assessing importance is to determine the extent of the population that has an interest in the decisions that the IACC will make.
The IACC decides levels of funding for research into supports and services, but does not fund supports and services themselves.
TALKING POINTS
The Autistic Self Advocacy Network has developed these talking points to assist individuals in writing statements to IACC on the topic of supports and services.
The RFI lists a number of areas of concern that can be addressed. You do not have to address every topic. You can pick the ones that are the most important to you. Feel free to change the wording so that it reflects your most important priorities.
Education:
Studies need to be undertaken that assess current levels of supports and services within the public education system. When treatments and interventions that look promising are developed, additional funding must be appropriated to address implementation so that teachers, students, parents, and other education professionals are up-to-date and have access to information, training, technological resources such as AAC, and other resources.
Health and medical services (including dental):
Access to health and medical services, particularly for adults on the autism spectrum, is of paramount importance for research funding. Current studies that focus on diagnosis and treatment of children do not address the very real need for healthcare access for autistic adults who may not have insurance, may have communication difficulties and other difficulties that prevent them from obtaining adequate care. Education of health care professionals so that they can interact knowledgeable with autistic patients/clients is one area for research into services and supports.
Housing:
Research into housing alternatives, following ideas such as those in the Community Choice Act and Money Follows the Person projects, should be undertaken. Warehousing of individuals in residential centers is undesirable yet often occurs because infrastructure for other types of housing is unavailable or underutilized. Research needs to include cost-effectiveness measures, some of which are already available, which show that housing in the community costs less than residential living.
Transitions:
Research into the most effective transition options needs to be undertaken. Parents and young adults on the spectrum often have nowhere to turn after they age out of the school environment. A clearinghouse of options should be researched and developed so that families will have resources already in place.
Employment:
Research into employment options and opportunities for people on the autism spectrum needs to include components such as accommodations, training, and career counseling. Research in other areas such as treatment, interventions, diagnosis, and genetic research, can be used to counter stereotypes of what an individual on the spectrum can do for employment. Resources for trainers, counselors, employers, and others need to be developed so that autistic people are not discriminated against in the employment world because of stereotypes and misunderstanding. The IACC and NIMH can set the tone for accurate information that can help employers assess individual strengths and weaknesses rather than relying on discriminatory assumptions.
Community inclusion:
Full inclusion in the community needs to be examined and research initiatives should focus on this very important aspect of adult life, and life for children who will grow into adulthood. Community-based participatory research should be implemented that will accurately reflect the actual needs of the autistic teen and adult population.
Safety:
Research into areas that can improve safety for autistic people, throughout the lifespan, and in different situations, needs to be undertaken. Areas to focus on are keeping people on the autism spectrum safe if they have a tendency to wander, or do not understand dangerous situations. Education of parents, professionals, first responders, and autistic people should be undertaken, and the best methods for ensuring safety should be addressed by research in this area. Sometimes autistic people can appear unusual in behavior, which will attract attention from law enforcement and other personnel. Training for professionals in aspects of autistic behavior that might not be understood is a crucial area to address in order to promote the safety of all.
Older adults:
Many older adults remain undiagnosed. Some have no health insurance. Some are living in poverty or are homeless. Many older autistic adults will need medication, including medication for health problems. Research into how to best reach out to older adults who may not have an autism diagnosis but may present as in need of services should be undertaken. Research into the effect of common medications, including for non-autistic-related health problems such as diabetes, should be undertaken. Because of the possibility of extrapyramidal or paradoxical drug reactions, and the general effect of certain drugs on older people, cases should be documented so that any adverse pattern of reaction can be established. Housing, health care, dental care, and community inclusion should all be addressed and tailored to the older autistic population. Community-based participatory research can be invaluable in determining the best ways to access health and other care.
Finances:
Across the lifespan, autistic children and their families, autistic adults and elders will have various financial needs. Research into how to help families and individuals on the spectrum cover the costs associated with treatments and interventions, and a clearinghouse for resources should be developed. In addition, financial resources for autistic adults who have difficulty with financial concepts should be researched and implemented.
Guardianship:
Research into the best ways to establish guardianship should be undertaken, including autistic adults as full participants in the research process in order to establish the most ethical procedures for guardianship. Guardianship should be tailored to the needs of the individual rather than being a one-size-fits-all category, since some individuals will need guardianship in limited areas, but not all aspects of their lives.
Estate planning:
Families with autistic individuals need to take extra precautions in planning an estate, especially for individuals who may need ongoing care throughout life. Autistic adults also may need assistance with estate planning. Research leading to the development of estate planning tools that can assist families and autistic individuals in making sound decisions should be initiated.
Thursday, September 4, 2008
ASAN Urges Self-Advocates to Write Comments to the IACC
The following announcement was released today by the Autistic Self Advocacy Network. We are strongly urging autistic self-advocates and our allies to submit comments to the U.S. government regarding autism research and services, so that our voices will be heard when the funds are allocated. It is not necessary to be a U.S. citizen to submit a comment.
The role of the Interagency Autism Coordinating Committee (IACC), created in 2006, is to help formulate the direction of future scientific research about autism in the U.S.
The IACC has indicated its willingness to hear from people on the autistic spectrum by including us in their invitation for comments, and by including an adult on the autistic spectrum on their board.
The IACC is currently asking for comments (Requests for Information) on two different topics. These requests for comments are our chance as individuals on the autistic spectrum to have our voices heard by the IACC. This is our chance to help ensure that future research about autism is scientifically sound, ethical, and of real benefit to people on the spectrum. The number of responses really matters; please respond to the requests if you are able.
REQUEST FOR INFORMATION #1
Topic: Priority Questions for Supports and Services
Deadline: 19 September, 2008
The IACC would like to know what you consider to be the most important, or highest priority, research questions related to services and supports for people on the autistic spectrum. This includes any high priority questions or concerns related to education, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
This information will be used by the IACC to guide which autism research projects get funding.
To get more information about the request for information, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html
The deadline for comments is 19 September, 2008, so please make your comments prior to that date.
REQUEST FOR INFORMATION #2
Topic: Comments on Draft of Strategic Plan
Deadline: 30 September, 2008
The IACC has finished drafting a plan for autism research, and is now asking for comments on that plan. The best way for you to let IACC know that you feel their draft plan could be of benefit to individuals on the spectrum is to contact the IACC with your own thoughts on the draft plan.
A summary of what is proposed in the plan is as follows:
+ Children with a higher probability for ASD will be identified by 24 months and receive appropriate assistance.
+ Discover how ASD affects development, which will lead to targeted and personalized interventions.
+ Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.
+ Interventions will be developed that are effective for reducing both core and associated difficulties, for building adaptive skills, and for preventing the disabilities associated with ASD.
+ Communities will implement high quality, evidence-based and cost-effective services and supports across the lifespan for people with ASD.
+ Advances in intervention, education and services will support and enable individuals on the autism spectrum to lead fulfilling and productive lives in the community.
To get more information about the plan, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html.
The deadline for comments is 30 September, 2008, so please make your comments prior to that date.
The role of the Interagency Autism Coordinating Committee (IACC), created in 2006, is to help formulate the direction of future scientific research about autism in the U.S.
The IACC has indicated its willingness to hear from people on the autistic spectrum by including us in their invitation for comments, and by including an adult on the autistic spectrum on their board.
The IACC is currently asking for comments (Requests for Information) on two different topics. These requests for comments are our chance as individuals on the autistic spectrum to have our voices heard by the IACC. This is our chance to help ensure that future research about autism is scientifically sound, ethical, and of real benefit to people on the spectrum. The number of responses really matters; please respond to the requests if you are able.
REQUEST FOR INFORMATION #1
Topic: Priority Questions for Supports and Services
Deadline: 19 September, 2008
The IACC would like to know what you consider to be the most important, or highest priority, research questions related to services and supports for people on the autistic spectrum. This includes any high priority questions or concerns related to education, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
This information will be used by the IACC to guide which autism research projects get funding.
To get more information about the request for information, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html
The deadline for comments is 19 September, 2008, so please make your comments prior to that date.
REQUEST FOR INFORMATION #2
Topic: Comments on Draft of Strategic Plan
Deadline: 30 September, 2008
The IACC has finished drafting a plan for autism research, and is now asking for comments on that plan. The best way for you to let IACC know that you feel their draft plan could be of benefit to individuals on the spectrum is to contact the IACC with your own thoughts on the draft plan.
A summary of what is proposed in the plan is as follows:
+ Children with a higher probability for ASD will be identified by 24 months and receive appropriate assistance.
+ Discover how ASD affects development, which will lead to targeted and personalized interventions.
+ Causes of ASD will be discovered that inform prognosis and treatments and lead to prevention/preemption of the challenges and disabilities of ASD.
+ Interventions will be developed that are effective for reducing both core and associated difficulties, for building adaptive skills, and for preventing the disabilities associated with ASD.
+ Communities will implement high quality, evidence-based and cost-effective services and supports across the lifespan for people with ASD.
+ Advances in intervention, education and services will support and enable individuals on the autism spectrum to lead fulfilling and productive lives in the community.
To get more information about the plan, how to make your points, and other information about the comment period, go to this NIH web site: http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html.
The deadline for comments is 30 September, 2008, so please make your comments prior to that date.
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