Archive | ASAN RSS feed for this section

ASAN: Lindt Chocolates and Autism Speaks

10 Mar

Below is a letter from ASAN’s Ari Ne’eman. Lindt Chocolates has a fundraising campaign to sponsor Autism Speaks and organization which has no autistics in prominent, decision-making positions.

Recently, Lindt Chocolates announced a fundraising campaign for Autism Speaks, an organization that excludes autistic people themselves from its decision-making, uses offensive and unethical advertising tactics based on fear and pity and raises funds for the eugenic elimination of the autism spectrum. Too often, money raised to improve our lives goes towards organizations that don’t speak for us and work against our interests. People with disabilities of all kinds have a right to be at the center of the decisions made about us, not standing at the sidelines. We’ve started an action alert to tell Lindt Chocolates that its money is better used elsewhere, with charities whose work will benefit the lives of autistic people rather than aim to eliminate us. Click here to go to our action alert or go to: http://www.change.org/autisticadvocacy/actions/view/tell_lindt_chocolates_that_autism_speaks_doesnt_speak_for_us

The action alert allows you to write your own e-mail or use a form letter already available, however, for those of you who want to write your own e-mail or can’t use the action alert for whatever reason, here are some talking points on why Autism Speaks is bad for the autism and autistic communities. Lindt Chocolate’s e-mail is here: lindt@qualitycustomercare.com

-Autism Speaks is an autism organization that claims to speak for autistic people, without a single autistic person on its board of directors or leadership. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals and others to achieve quality of life and equality of opportunity. Autism Speaks’ exclusionary policies are an embarrassment to itself and its funders.

-Autism Speaks advertising is highly offensive to autistic people and our families, with ads that compare a life on the autism spectrum to a car accident, being struck by lightning, a terminal illness and other fatal situations. Rather than work to decrease stigma and increase respect for autistic people, Autism Speaks’ advertising fosters pity, shame and fear, suggesting that our very lives are mistakes and burdens.

-Autism Speaks’ fundraising goes towards genetic research aimed at developing a prenatal test with potentially eugenic applications. Given the fact that 92% of fetuses that test positive for Down Syndrome are selectively aborted prior to birth, we are concerned by the prospect of a similar result in respect to the autism spectrum. This is an issue of discrimination, wholly separate from typical abortion politics. Money raised in the name of autistic people should go towards opportunities for quality of life, not towards our elimination. Autism Speaks research agenda is overwhelmingly focused on causation and prevention rather than research initiatives that might support quality of life for all autistic people. This drains support from initiatives that stand to improve the quality of life of autistic people, such as services, supports and education, which Autism Speaks supports in only a tiny fraction of its massive budget.

Thank you to those who alerted us of this situation and we urge your immediate support. Together, our voices cannot be ignored. Nothing About Us, Without Us!

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

The Lindt fundraiser has already been blogged by abfh. If you know of any others, let me know and I’ll link to them here.

For example.

Media dis&dat has ASAN protests Lindt Chocolates-Autism Speaks fundraising tactics.

Change.org included this in their Monday Autism News Potpourri.

Advocacy Success: NIMH Use of Stimulus Money Includes Services-Research

5 Mar

If you’ve read what I’ve written on the IACC process, and been able to get past my annoyance with the political maneuverings, you know that I’ve had great hope for the research into areas involving services and adult issues.

Given that, you can imagine that I was quite pleased to get this email from Ari Ne’eman of ASAN (the Autistic Self-Advocacy Network), discussing recent RFA’s (Requests for Applications) for research topics in specifically these areas.

Hello,

Recently, the National Institute of Mental Health released several Request for Applications (RFAs) on services-research topics relevant to autistic people and our families as part of a broader effort to identify NIMH’s priority areas for use of stimulus funds. The RFAs utilize funds specifically allocated under the recently passed American Recovery and Reinvestment Act (aka: the Stimulus bill). As you may be aware, the Autistic Self Advocacy Network and the broader autistic and disability communities have been lobbying for increased representation of services-research and bioethics issues in the NIH research agenda for some time. We’re pleased to share with you these RFAs, which hopefully will yield research that will have a positive impact for our community.

04-MH-104 Access to services by individuals with autism and their families. Engage well-characterized subjects and families in existing autism research activities in preliminary studies exploring variations in access to and use of services, identification of targets for services interventions, and exploration of how variations in service use affect family functioning in diverse populations. Contact: Denise M. Juliano-Bult, M.S.W. 301-443-3364, djuliano@mail.nih.gov

02-OD(OSP)-104* Ethical Issues in the Translation of Genetic Knowledge to Clinical Practice. Genetics and genomics have great promise for the development of personalized medicine, yet the ethical, legal and social implications of both the research and application of genetic and genomic knowledge and technology are far reaching. Studies are needed to better understand the factors that influence the translation of genetic information to improved human health and the associated ethical issues. Examples of studies include those to address ethical issues related to broad sharing and use of new genetic information and technologies for research to improve human health, human subjects protection in genetic and genomic research, the identifiability of genetic/genomic information and how our understanding of identifiability is evolving, return of research results and incidental findings to subjects, alternative models of informed consent for broad data sharing for research, and the impact of intellectual property (IP) issues on development of new technologies. OD(OSP) Contact: Abigail Rives, 301-594-1976, rivesa@od.nih.gov; NIMH Contact: Jean Noronha, Ph.D., 301-443-3367, jnoronha@mail.nih.gov

05-MH-101* Leveraging Existing Healthcare Networks for Comparative Effectiveness Research on Mental Disorders and Autism. Existing large integrated healthcare networks are needed to more efficiently conduct large-scale effectiveness trials in “real-world” patient settings. The NIMH solicits individual or collaborative, linked grant applications from researchers with experience conducting studies within large integrated healthcare delivery systems to develop and test infrastructure to efficiently conduct trials on the effectiveness of treatment, preventive and services interventions to improve care for people with mental disorders and autism. Applicants can propose studies to 1) demonstrate the ability to identify, recruit and enroll large patient populations into clinical trials, 2) harmonize electronic medical record data across multiple integrated systems for research use, 3) pool data for common analyses, and 4) build capacity for the collection and storage of biologic material. Contact: David Chambers, D.Phil., 301-443-3747, dchamber@mail.nih.gov

05-MH-103* Collaboration with AHRQ Comparative Effectiveness Research Program
In FY09 and FY10 the Agency for Health Research and Quality (AHRQ) plans to support research grants (PA-09-070) on comparative effectiveness of clinical treatments and services as authorized in the Medicare Prescription Drug, Improvement, and Modernization Act (MMA) Section 1013. MMA section 1013 mandates two mental health categories: Depression and other mental health disorders; and Developmental delays, attention deficit hyperactivity disorder and autism. NIMH is interested in funding ancillary studies including but not limited to: 1) studies on the comparative effectiveness of important new or existing technologies; and 2) assessment of the comparative effectiveness of treatments that are commonly administered to children but have been evaluated for safety and effectiveness in adult populations. Two year studies will contribute to successfully implement the mental disorders components of MMA Section 1013 by utilizing AHRQ networks ( e.g. EPCs, DEcIDE, CERTs, PBRN, ACTION, etc) to generate information for health care decision-making. Contact: Agnes Rupp, Ph.D., 301-443-3364, arupp@mail.nih.gov

04-MH-105 Developing interventions and service delivery models for the transition to adulthood. Conduct pilot studies to develop and test developmentally appropriate, evidence-based prevention interventions and service delivery models for youth with who are at high risk for, or experiencing severe mental illnesses who are transitioning to adulthood. Studies would propose strategies to address discontinuities in service systems and health care financing. Contact: Joel Sherrill, 301-443-2477, jsherril@mail.nih.gov

Furthermore, NIMH also released the funding of the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan as an RFA. ASAN has been active in lobbying for the inclusion of quality of life oriented research in the IACC’s priorities since this IACC’s inception in 2007. While having both positive and negative components, the IACC Strategic Plan includes services- and quality of life-research components, including research on meeting the needs of autistic adults. It can be found below.

04-MH-101* Autism: Addressing the challenge. Target research gap areas identified by the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research, including biomarkers, novel interventions, and new tools for screening, among other topics. Contact: Ann E. Wagner, Ph.D., 301-443-5944, awagner@mail.nih.gov

We encourage you to transmit this information to your contacts in the research and scientific communities, encouraging them to apply for funding for projects that will positively impact the lives of autistic people while working with the self-advocate community to ensure inclusive and participatory models of research, as we practice through our partnership with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Please feel free to e-mail us at info@autisticadvocacy.org with questions on ASAN’s research advocacy and how you can get involved. If you are a researcher, interested in interfacing with ASAN and our research partner AASPIRE on research priorities, design and implementation, we encourage you to contact ASAN Board Member and AASPIRE Project Co-Director Dora Raymaker at dora@aaspireproject.org.

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

Support a Disability-Friendly Stimulus

9 Feb

As noted recently on this blog, the U.S. economic stimulus package may have a big impact on the disability community.

I have concentrated on special education funding, but it goes deeper than that.

ASAN has an action alert on the change.org website. You can fill out a message and it will be sent to your legislators.

From the website:

Today, the Senate will likely pass stimulus legislation that includes substantial cuts in special education, vocational rehabilitation and other disability-related spending provisions as compared to the House version. Afterwards, the Senate and House will reconcile the bills and come up with a consensus version. This action alert enables you to tell your legislators how important it is to keep disability spending provisions fully funded as in the House version.

Please (PLEASE) take a minute and send the message.

Autistic and in New Jersey? Governor Corzine needs your input

26 Jan

Autism is too often characterized as being something affecting children or families with children with autism. New Jersey has established an “Adults with Autism Task Force”. This is a great opportunity to be heard. The survey below gives those in New Jersey exactly this opportunity.

ASAN highly encourages eligible people to fill out this survey.

NJ Adults with Autism Task Force Informational Survey

From the survey page:

In September 2007 Governor Corzine signed into law legislation establishing the New Jersey Adults with Autism Task Force (NJAATF). The purpose of the NJAATF is to develop a comprehensive and actionable plan for meeting the various needs of adults with autism living in the State of New Jersey. This survey will provide valuable insight in forming the recommendations included in this plan.

If you reside in New Jersey and are 1) an individual with autism over 12 years of age, or 2) a parent or guardian of an individual with autism over 12 years, please consider taking a few minutes to answer the following. If you are a parent or guardian, please answer all questions with respect to the individual on the Autism Spectrum. For example, the address should be that of the Autism Spectrum Disorder (ASD) individual. The average time for this survey is 10 minutes. If you receive this survey more than once, please respond only once.

Disability Groups Send Recommendations to Obama

16 Jan

I got the below through Ari Ne’eman at ASAN. This is the sort of advocacy I like to see: broad in scope, broad in support. I like seeing Autism organizations working with other disability org’s.

____________________________________

Disability Groups Send Recommendations to Obama

Dear President-elect Obama,

Congratulations on capturing the hearts, minds, and hopes of our nation! As grassroots, community-based, consumer-controlled disability organizations, which collectively represent over 50 million Americans with the full spectrum of disabilities, we look forward to working with you and your administration to make cost-effective policy changes to enhance the lives of and restore the civil liberties Americans with disabilities.

Attached you will find nine summaries of the top policy issues facing Americans with disabilities. Taking action on your commitment and these policy measures will not only benefit citizens with disabilities, our nation’s wounded warriors, and the ever-growing aging population, it will benefit all Americans and save our government millions of dollars as individuals with disabilities become full participants in society.

They include:

· Employment: Reversing the persistently high percentages of people with disabilities who are not working but are ready, willing and able to work;

· Education: Increasing access and opportunities for physical activity, and improving quality;

· Health Care: Improving access and decreasing disparities and inequities;

· Home and Community-based Services (HCBS): Promoting effective community-based services as alternatives to costly nursing homes and other institutions and increase the FMAP to states;

· Disability Research: Promoting a quality of life and participation-based research agenda;

· Civil Rights: Reinvigorating civil rights enforcement, extending access requirements to new technologies, and continuing to restore protections stripped away by hostile courts;

· Human Rights: Protecting human rights of individuals with disabilities at home and abroad;

· Emergency Preparedness, Response and Recovery Needs: Planning, coordinating, and providing resources to support people with disabilities before, during, and after a crisis; and

· Genetic Science and Technology: Promoting ethical use of new technologies.

Like you, we stand and sit on the shoulders of so many who have come before us. As our nation approaches the 20th anniversary of the Americans with Disabilities Act in 2010, we embrace the disability rights principle, “Nothing About Us, Without Us.” For too long others claimed the need to speak for us, but no other group – professionals or relatives – speak for us.

Additionally, we urge you to embrace the fundamental principles for sustainable change, which are essential elements to building healthy, resilient, empowered communities. As you move forward with deliberate speed and consideration, we urge your administration to:

· Provide oversight of federal agency public policy, regulatory, and enforcement actions, and collaborate with consumer and community-based disability organizations as partners to better serve the ever-expanding population of more than 50 million Americans with disabilities;

· Hire qualified professionals with disabilities, who have expertise in policy areas, throughout the administration, including a Special Assistant to the President on Disability Policy;

· Include individuals with disabilities in policy formation in all areas addressed by the administration, and integrate representatives of our community on all advisory boards of all major agencies;

· Provide services that serve people with disabilities across the life span, from cradle to grave, and all those with increased needs for health care, health promotion, and long-term services and community-based supports;

· Incorporate consumer-directed services and include consumers in policy development;

· Embrace the disability experience as part of culturally competent policy and diversity at all levels of planning, policy formulation, implementation, and evaluation; and

· Focus on “universal design” as a cost-effective innovative way to enhance the quality of life and level of participation of all Americans in community life and incorporate it into infrastructure changes in the economic stimulus package so we upgrade the infrastructure for all to use;

Thank you for your support of the need for the federal government to be “diligent about making sure the states enforce the rights affirmed by the Olmstead decision.” Enabling people with disabilities to live independently in their own homes and communities, rather than being forced into costly Medicaid-funded nursing homes and other institutions will ensure civil liberties, enhance the quality of life and full participation of all Americans by creating stronger, sustainable communities of inclusion and acceptance to honor the 10th Anniversary of the Olmstead decision.

As a community of individuals with disabilities, we ask for nothing more than what other Americans expect and already have. We seek inclusion. We seek a voice for the disability rights message in the change you create. As you create more jobs for Americans, include jobs for Americans with disabilities. As you improve education for America’s students, include students with disabilities. As you improve the healthcare system, include the healthcare needs of individuals with disabilities. As you restore civil rights to Americans, include the civil rights of individuals with disabilities. To paraphrase your now immortal words, – We are not a nation of disabled and non-disabled Americans. We are the United States of America.

We stand ready to work with you and look forward to an opportunity to discuss our priorities with you personally in the coming months.

Sincerely,

American Association of People with Disabilities (AAPD)

Access Living

American Disabled for Attendant Programs Today (ADAPT)

Autistic Self Advocacy Network

Boston Center for Independent Living (BCIL)

California Foundation for Independent Living Centers (CFILC)

Disability Rights Education and Defense Fund (DREDF)

Generations Ahead

Little People of America

Metro-West Center for Independent Living (MWCIL)

National Association of the Deaf (NAD)

National Coalition for Disability Rights (NCDR)

National Coalition of Mental Health Consumer Survivor Organizations

National Council on Independent Living (NCIL)

National Empowerment Center

National Federation of the Blind (NFB)

Self Advocates Becoming Empowered (SABE)

Special Olympics

Texas State Independent Living Council (TX SILC)

World Institute on Disability (WID)

For Policy Recommendations on each policy issue click links above

—
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

Two new blogs you need to read this new year

31 Dec

You may recall, Dear Reader, that earlier this year Change.org made a big splash when they advertised for an autism blogger for their increasingly popular social action network website. From blogs all over the autism blogosphere, readers and potential authors were urged to apply, apply, apply.

Of course it goes without saying that this was in itself a political act – I doubt very much if Change.org were quite prepared for the utter deluge of applications that hit them. I have it on good authority that applications ran into the thousands and has been by far the biggest launch Change.org have held.

Age of Autism, with its usual inherent crassness, not only informed their readers of this but also posted the private home phone number of one of the owners of Change.org. As ever, the people on that side of the fence show a startling lack of good social skills for a group that believe genes play a secondary role to vaccines.

Did I apply? Yep. Did I get it? Nope. Am I happy about that? I actually am. I would’ve loved to have carried a neurodiversity message into the heart of the largest growing social action network on the web today but although I made it to the final round, I didn’t make the final hurdle. C’est la vie.

So why am I happy? Because in a burst of what can only be described as genius planning from Change.org they have decided to appoint not one, but _two_ autism bloggers.

So what? I hear you say. Well, so, the first blogger is the truly amazing Kristina Chew. Someone whos blog will be required reading. Someone who is quite firmly on the side of autistic people.

But the absolute best thing is the second blogger. Change.org decided that they would have an autism blogger who was autistic. They settled for Dora Raymaker – an ASAN Director alongside Ari Ne’eman.

This makes Change.org the very first non-autie run political (with a small p) organisation in the US to appoint an autistic person to talk about autism. Think about that. Change.org beat ASA, Autism Speaks etc to appoint an autistic person to express an autistic viewpoint.

I am very excited about these two new autism blogs. I am thrilled that these two people beat off the competition (including me) to take a pro-autistic advocacy message to the heart of this website and this new way of campaigning. Well done Kristina, well done Dora – well done Change.org

Truly, a happy new year for autism advocacy.

NB: Official launch is not until 7th Jan so the blog will be in a state of flux for awhile. Don’t go expecting the finish product. But DO GO and join! Its expected to fully OPERATIONAL however by Jan 2nd.

Peta – Idiots

7 Oct

The text below is from my good friend Ari Ne’eman. My own contribution is supplied in a link at the bottom of his text.

I am happy to announce that PETA’s recent, “Got Autism?” billboard has been removed by the advertising company hosting it. The billboard misinformed the public about the autism spectrum by falsely implying that milk consumption was the cause of autism. Such advertising contributes to a state of public hysteria about the autism spectrum, fueling the fear and resulting prejudice that marginalizes us from society at large. It is unacceptable for autistic people, our families and supporters to be used as instruments in PETA’s political agenda or that of any other unscrupulous interest group. Our community came together to communicate the need for a swift withdrawal of this ill-informed piece of advertising, and I’m pleased to say that were able to achieve a swift result. That we were able to accomplish this so quickly and effectively speaks well for the autistic community and the cross-disability rights movement. Thank you all for your support.

If you’d still like to indicate to PETA the need to avoid exploiting the autistic community in its future advertising, you can write to them at info@peta.org as well as call them at 757-622-7382 and dial 0. You can also sign our petition on this topic, further indicating to PETA and the world that it does not pay to try to attack and exploit the autistic and cross-disability communities.

Incidents like this show the need for a strong and activist autistic self-advocacy movement, working closely with the broader disability rights community. By uniting on issues like this one, we can work to address the persistent biases that pervades the public discourse about autism in specific and disability in general. As we speak, the blind community is uniting against false and offensive depictions of their community in the new movie, “Blindness”. Over the last few months, disability rights activists from all parts of the community came together to fight against outdated and damaging portrayals of people with intellectual disabilities in the movie, “Tropic Thunder”. Less than a year ago, the disability community united behind our successful effort to stop the NYU Child Study Center’s “Ransom Notes” ad campaign, which portrayed children with disabilities as kidnap victims.

Like any other community, we have the right to be treated with respect, in media, in service-delivery and in all aspects of society. While responses to offensive depictions of disability in popular culture are not the only battle in the broader struggle for equity, inclusion, quality of life and opportunity for all people with disabilities, this issue must remain an important priority. Culture helps to shape the reality we live in. By challenging the exploitative and offensive public discourse on disability we find today, we can advance a broader agenda for disability rights. The disability community is on the march and we will not be stopped. Thank you once again for your effective action on this issue. I look forward to working with all of you once again in the future. Remember, “Nothing About Us, Without Us!”

Wise words from Ari. And now my own vitriolic, childish but very satisfying contribution.

Write the IACC today!

19 Sep

The IACC (Interagency Autism Coordinating Committee) is seeking input. They have two RFI’s (requests for input) out right now, and one has a deadline of today!

The one with the deadline today is for the services subcommittee. The RFI is on the NIH website.

abfh has noted this deadline. ASAN (the Autistic Self Advocacy Network) has an alert on this, including talking points. This was also discussed recently on this blog.

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.

Take a look at the talking points above. Take a look at the RFI. Then, send an email to the services subcommittee.

ASAN on the IACC

15 Sep

Ari has put together a ‘call to arms’ everyone should read:

Below is a document of considerable importance. Right now, the Inter-Agency 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.

Newer Entries →