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.


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:


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. (

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.


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.

Friday, November 14, 2008

ASAN signs letter to Governor Kaine

The Autistic Self Advocacy Network is a signatory to this Virginia Coalition for Students with Disabilities letter to the Governor of Virginia. The letter requests an opportunity to directly discuss significant concerns about the proposed Special Education Regulations changes with Governor Kaine. The proposed regulations contain major changes that would reduce or eliminate broad categories of protections for parents and students.

November 6, 2008

Dear Governor Kaine:

Thank you for reaffirming your promise during your recent appearance on WTOP's recent "Ask the Governor" program not to reduce existing parental involvement in the proposed special education regulations. In doing so, you raised the hopes of parents across Virginia that misguided efforts to take away rights from parents of children with disabilities – rights that are vital to ensuring equality and fairness in the parent-school partnership – will not succeed.

We are extremely disappointed that the recently approved regulations reduce parent involvement and consent rights in disregard of the desires expressed in your memo of March 21, 2008 to the Board of Education. With regard to the specific measures you identified, the regulations fail to ensure the right of consent for parents of transfer students and the right to participate in a Functional Behavioral Assessment of their child. You also stated your intention in the memo that parent involvement not be reduced in other areas. However, these final proposed regulations continue to:

• Deny parents the right to participate in the referral and screening process through the elimination of "Child Study Committees" as well as required state-wide uniform procedures and timelines.
• Deny parents the right to receive timely re-evaluation reports due to the approval of an unnecessary extension of the timeline.
• Deny children with disabilities access to appropriate services due to new restrictive and arbitrary eligibility criteria.
• Deny young children with disabilities access to appropriate services due to new limits on the label of "developmental delay".
• Deny parents the right to ensure the inclusion of short-term objectives or benchmarks in their children's IEPs.
We know that some supporters of the recently approved regulations are arguing that they constitute a reasonable compromise between saving money and serving children. This is untrue. The proposed regulations cannot be considered a reasonable compromise when only one party loses rights and the other party gains them. Worst of all, the losers in this situation are Virginia's most vulnerable children. For your further review we have attached a full list of all areas where changes in the proposed regulations roll back current rights and protections for children.

Parents have contacted you not to ask for new rights and protections, but to advocate for retaining the rights they now have. These are rights that have well served children with disabilities for decades and have no justifiable reason for being eliminated. Certainly, denying services to children who need them will not save money, but will shift the burden for meeting their needs onto unprepared teachers and overstretched schools. Such an approach will only negatively impact classroom instruction, teacher retention, and state performance on standardized tests, while increasing suspension/expulsion rates and leaving many children with disabilities unprepared to face the challenges of adult life.

The proposed regulations represent a significant policy shift for Virginia. If these regulations are approved in their current form, an entire class of citizens in Virginia will lose rights for the first time in over 20 years. Instead of ensuring that Virginia leads the way as you have championed, these regulations will put the Commonwealth years behind by taking away the hard won gains of children with disabilities.

We request an opportunity to directly discuss these significant concerns with you. Please let us know a date and time when you might be available to meet. The individual futures of tens of thousands of Virginia's most vulnerable children are truly at stake and require your direct intervention.


Maureen Hollowell

Attachment: Comments from the Virginia Coalition for Students with Disabilities on the proposed Regulations Governing Special Education Programs for Children with Disabilities in Virginia

Access Independence, Inc
403 B Loudoun Street
Winchester, VA 22601
Contact: Donald Price, Executive Director

Appalachian Independence Center,Inc.
230 Charwood Drive
Abingdon, VA 24210
Contact: Greg Morrell, Executive Director

The Arc of Loudoun
71 Lawson Road
P.O. Box 243
Leesburg, VA 20178
Contact: Eleanor Voldish, Executive Director

The Arc of Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Nancy Mercer, Executive Director

The Arc of Rappahannock
1640 B Lafayette Boulevard
Fredericksburg, VA 22401
Contact: Jan Griffin, Executive Director
The Arc of Virginia
2025 E. Main Street, Suite 107
Richmond, VA 23223
Contact: Jamie Trosclair, Executive Director

The Autistic Self Advocacy Network (ASAN)
1660 L Street, NW, Suite 700
Washington, DC 20036
Contact: Paula C. Durbin-Westby, Board of Directors Virginia Coordinator

Autism Society of American – Central Virginia
P.O. Box 29364
Richmond, VA 23242-0364
Contact: Bradford Hulcher

Autism Society of America – Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Christopher Waddell, President

A Voice for GAP Kids
P.O. Box 174
Rockville, Virginia 23146
Contact: Tim Moore

Blue Ridge Independent Living
1502 B Williamson Road NE
Roanoke, VA 24012
Contact: Karen Michalski-Karney, Executive Director

Clinch Independent Living Services
P.O. Box 2741
Grundy, VA 24614
Contact: Betty Bevins, Executive Director

DAC (disabled Action committee)
14405 Artery Lane, #11
Dale City, VA 22193
Contact: Keith Kessler

disAbility Resource Center
409 Progress Street
Fredericksburg, VA 22401
Contact: Debe Fults, Executive Director

Disabilities Resource Network
c/o Bedford Community Resource Center
403 Otey Street
Bedford, VA 24523
Contact: Didi Zaryczny, Chairperson of the Board of Directors

Down Syndrome Association of Hampton Roads
6300 E. Virginia Beach Boulevard
Virginia Beach, VA 23502
Contact: Andrea Anderson

Down Syndrome Association of Northern Virginia
98 N. Washington Street
Falls Church, VA 22046
Contact: Philip Pedlikin, President

Eastern Shore Center for Independent Living
4364 Lankford Highway
Exmore, VA 23350
Contact: Althea Pittman, Executive Director

Endependence Center
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502
Contact: Maureen Hollowell

ENDependence Center of Northern Virginia, Inc.
3100 Clarendon Blvd.
Arlington, VA 22201
Contact: David Burds, Director

The Fairfax County Council of PTAs (FCCPTA)
8115 Gatehouse Road
Falls Church, VA 22042
Contact: Sheree Brown Kaplan, Chair, FCCPTA Special Education Committee

Giraffe Program
529 Ramsey Ridge
Clinchco, VA 24226
Contact: Judy McKinney

Independence Empowerment Center
9001 Digges Road, Suite 103
Manassas, VA 20110
Contact: Mary D. Lopez, Ph.D., Executive Director

Independent Resource Center
815 Cherry Avenue
Charlottesville, VA 22903
Contact: Tom Vandever, Executive Director
Junction Center for Independent Living
P.O. Box 1210
Norton, VA 24273
Contact: Dennis Horton, Executive Director

Learning Disabilities Association of Virginia (LDAV)
3914 Monument Avenue
Richmond, VA 23230-3902
Contact: Dr. Jean Lokerson, President

Lynchburg Area Center for Independent Living
500 Alleghany Avenue, Suite 520
Lynchburg, VA 24501
Contact: Phil Theisen, Executive Director

Parents in Partnership
18301 Black Hollow Rd.
Abingdon, VA 24210
Contact: Melissa Meade

Peninsula Center for Independent Living Insight Enterprises, Inc
2021 A Cunningham Drive Suite 2
Hampton, VA 23666
Contact: Ralph Shelman, Executive Director

Resources for Independent Living
4009 Fitzhugh Avenue
Richmond, VA 23230
Contact: Sandra Wagener, Executive Director

Tidewater Autism Society of America
6300 E. Virginia Beach Boulevard
Norfolk, VA 23502
Contact: JoAnna Bryant, President

Valley Associates for Independent Living
205-B South Liberty Street
Harrisonburg, VA 22801
Contact: Marcia DuBois, Executive Director

Virginia Board for People with Disabilities
202 N. 9th Street, 9th Floor
Richmond, VA 23219
Contact: Heidi Lawyer, Executive Director

Virginia Office for Protection and Advocacy
1910 Byrd Avenue, Suite 5
Richmond, VA 23230
Contact person: Julie Kegley, Staff Attorney

Wednesday, October 1, 2008

ASAN Coalition Comments on Stategic Plan

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
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036

Andrew Imparato
American Association of People with Disabilities
1629 K Street NW, Suite 503 Washington, DC 20006

Barbara Trader, MS Executive Director TASH

Sharisa Joy Kochmeister,
Autism National Committee

Estee Klar-Wolfond
Founder/Executive Director
The Autism Acceptance Project

Compiled by ASAN Board Member Paula C. Durbin-Westby

Thursday, September 18, 2008

REMINDER: Last Day to Submit Comment on Autism Services to IACC

Hi everyone,

Just a reminder: tomorrow is the last day to submit comment to the Inter-Agency Autism Coordinating Committee's Services Subcommittee. You can find details about the priorities we're encouraging people to write about here. However, it is vitally important that they hear from self-advocates, so we encourage you to write something about your experiences with the autism service-delivery system and areas where you would like to see more research conducted as to how to improve services, supports and education for autistic people across the lifespan. Your support at this crucial period is appreciated.

Mail comments by September 19th, 2008.

More info from NIMH can be found here:


Ari Ne'eman
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700 Washington, DC 20036 732.763.5530

Tuesday, September 16, 2008

ADAPT Challenges HUD, Dems, McCain on Disability/Housing Economic Crisis

Washington, D.C.---ADAPT wasted no time challenging multiple policymakers on the housing crisis for persons with disabilities who have low and extremely low incomes. After setting up a tent city at HUD headquarters just after 4 a.m., ADAPT sent 100 activists to the Democratic National Committee (DNC) offices in Washington, D.C., and another hundred to a Sen. John McCain campaign office in Arlington, VA. All three entities were presented with the ADAPT platform for affordable, accessible housing. "The DNC was cordial, and they accepted our housing platform, as well as our invitation to visit 'DUH City,' which is HUD spelled backwards," said octonagerian Barb Toomer, ADAPT organizer from Utah."The career HUD staff that met with ADAPT told our people they had no authority to make decisions and had to wait for the administration or administrative appointees to make any decisions, so the meeting felt like a waste of time. Sen. John McCain's campaign staff not only refused to even look at our housing platform, they had eleven of us arrested by police who caused injuries to at least one arrestee." ADAPT's housing platform points to America's20longstanding and still growing crisis in the availability of affordable, accessible integrated housing. Many people with disabilities live on benefits that are only 18% of the median income, a full 25% below the poverty level, and an amount that is less than the national average rent for a studio/efficiency apartment. "The federal government is sending stimulus payments to middle class workers, and is providing economic relief for the mortgage crisis, and maybe even the bank crisis," said Dawn Russell, Denver ADAPT. "What about all of us who live on fixed incomes? If we can't afford the cost of housing, we'll end up on the street or being forced into nursing homes and institutions. What are the federal government, Congress, and the presidential candidates going to do to help us with our housing crisis?" In its platform, ADAPT is asking for: · 5000 new housing vouchers per year for 10 years, targeted to people transitioning out of nursing homes and other institutions;· Twice as much funding for the construction of new housing stock that is affordable, accessible and integrated;· Policies and procedures to track the new vouchers to assure they remain targeted to people with disabilities when the original user becomes ineligible or no longer needs the voucher;· People with disabilities who reside in institutional settings to be recognized as "homeless." ADAPT's DUH City will remain in operation twenty four hours a day until Thursday, September 18. The DUH City Times will be delivered daily to every member of Congress, and there will be daily DUH TV coverage on You Tube. Background information, real stories of real people and photos can all be accessed at

Sunday, September 14, 2008

IACC RFI links

Mail comments to: by September 19th, 2008. More info from NIMH can be found here:

Friday, September 12, 2008




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.

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.


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.


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.


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.


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.


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.


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.


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.


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.

Paula C. Durbin-Westby
The Autistic Self Advocacy Network

Thursday, September 4, 2008

ASAN Urges Self-Advocactes 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 #1Topic: Priority Questions for Supports and ServicesDeadline: 19 September, 2008The 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: deadline for comments is 19 September, 2008, so please make your comments prior to that date.REQUEST FOR INFORMATION #2Topic: Comments on Draft of Strategic PlanDeadline: 30 September, 2008The 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: deadline for comments is 30 September, 2008, so please make your comments prior to that date.
Posted by asansouthwestohio at 9:18 AM

Friday, August 22, 2008

IACC Seeks Public Comments

The Interagency Autism Coordinating Committee (IACC) and its Services Subcommittee are requesting public comments on autism research, services, and related issues. These suggestions will be considered in setting the federal government's priorities for autism funding. This is a good opportunity for self-advocates to be heard:

On behalf of the IACC, the National Institute of Mental Health has issued two Requests for Information (RFI):

Response Due 9/30/08: IACC Draft Strategic Plan for ASD Research is Available for Comment. The purpose of this time-sensitive RFI is to seek comments on the draft Strategic Plan from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, officials of state and local programs for ASD, and the public at large. Please see the official RFI notice NOT-MH-08-021 at for more information and instructions for responding by the deadline of September 30, 2008. Responses should be directed to Please note: The draft Strategic Plan does not include cost estimates for implementation. However, the IACC has formed a workgroup to advise the IACC about the budgetary requirements needed to fulfill the research objectives described in the draft Strategic Plan. The IACC will review the workgroup recommendations at its next meeting on November 21, 2008.

Response Due 9/19/08: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD) The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. Please see the official RFI notice NOT-MH-08-016 at for more information and instructions for responding by the deadline of September 19, 2008. Responses should be directed to

For more information about the IACC, please see