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ASAN: Tell Congress “No” to Three More Years of the Same On Autism Policy

29 May

The Combating Autism Re-authorization Act (CARA) has been started in the U.S. legislature. The Autistic Self-Advocacy Network (ASAN) has issued a position statement on the bill:

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators’ good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We’re urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capital Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don’t feel comfortable having a longer conversation, but if you want to provide additional reasons to oppose this extension we have provided several below:

A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can’t afford to wait that long.

CAA’s existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.

CAA’s existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don’t matter.

Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from “combating autism” to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at this link.

We need your help to remind Congress they can’t ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!

Regards,

The Autistic Self Advocacy Network

Joint Letter to CDC on Wandering

6 Apr

Below is a letter signed by a number of disability groups, including the Autistic Self Advocacy Network (ASAN) on the issue of the proposed ICD-9 code for wandering. These organizations oppose the addition of the code, for the reasons given below.

This letter was sent to the CDC’s National Center for Health Statistics on Friday, April 1st.

Dear Ms. Pickett:

We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. The constituencies that we collectively represent number in the hundreds of thousands from every stakeholder group in the disability field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.

While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.

First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.

Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.

Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that the CDC bases its other decision-making on.

While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to consider and reject the proposed ICD-9-CM coding for wandering behavior.

Regards,

Access Living
ADAPT
American Association of People with Disabilities
American Association on Intellectual and Developmental Disabilities
Autistic Self Advocacy Network (ASAN)
The Arc of the United States
Brooklyn Center for the Independence of the Disabled (BCID)
Center for Self-Determination
Coalition for Community Integration
Collaboration for the Promotion of Self-Determination
Council of Parent Attorneys and Advocates (COPAA)
Disability Rights Education and Defense Fund (DREDF)
Disabled in Action of Greater Syracuse
Disabled in Action of Metropolitan New York
Disabled Queers in Action
Disability Network of Michigan
Disabilities Network of New York City
Hearing Loss Association of America (HLAA)
Independent Living Center of the Hudson Valley
Independent Living Council of Wisconsin
Independent Living Coalition of Wisconsin
Little People of America (LPA)
Kansas ADAPT
Montana ADAPT
National Association of the Deaf (NAD)
National Association of State Directors of Developmental Disability Services (NASDDDS)
National Association of the Physically Handicapped
National Council on Independent Living (NCIL)
National Organization of Nurses with Disabilities
New York Association of Psychiatric Rehabilitation Services
Options for Independence, Inc.
Pineda Foundation for Youth
Self Advocates Becoming Empowered (SABE)
Silicon Valley Independent Living Center
Statewide Parent Advocacy Network of New Jersey (SPAN)
SKIL Resource Center of Kansas
TASH
Topeka Independent Living Center
United Spinal Association
Wisconsin Board for People with Developmental Disabilities

New National Autism Clearinghouse In The Works

7 Oct

Disability Scoop has an article, New National Autism Clearinghouse In The Works, which states:

A handful of disability organizations are joining forces to establish a national resource center to assist people dealing with autism and other developmental disabilities.

The new initiative known as Autism NOW: The National Autism Resource and Information Center will be established by The Arc in collaboration with the Autistic Self Advocacy Network and Self Advocates Becoming Empowered with the help of $1.87 million awarded by the Department of Health and Human Services this week. Autism NOW will be tasked with helping people connect with services and interventions in their own communities.

Here is the press release from The Arc:

Washington, DC – The Administration on Developmental Disabilities (ADD), within the Administration for Children and Families (ACF) at the U.S. Department of Health and Human Services, announced yesterday that The Arc would receive an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities.

The Arc, in collaboration with several key partners will implement an innovative and dynamic initiative, called Autism NOW: The National Autism Resource and Information Center to engage and leverage a national network of disability, aging, military, and family organizations to deliver information and resources relevant to individuals with ASD and other developmental disabilities.

“The Arc and our partners are primed and ready to build a dynamic resource to address the needs of people with ASD and other developmental disabilities through this national network. We are proud to have the opportunity to launch Autism NOW, a much needed resource. It is especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of this innovative project,” said Peter V. Berns, CEO of The Arc.

Other partners include the Autistic Self Advocacy Network (ASAN), and Self Advocates Becoming Empowered (SABE) to provide expertise from the self-advocate perspective. For research expertise in key areas across the lifespan in ASD and other developmental disabilities, The Arc has partnered with members of the Association of University Centers on Disabilities (AUCD) Network, also referred to as UCEDDs (University Centers on Excellence in Developmental Disabilities), the Institute for Community Inclusion from the University of Massachusetts, the Developmental Disabilities Institute from Wayne State University, and the Center for Community Inclusion and Disability Studies from the University of Maine.

First Autistic Presidential Appointee Speaks Out

7 Oct

Wired Magazine has an interview with Ari Ne’eman, Exclusive: First Autistic Presidential Appointee Speaks Out. Mr. Ne’eman has been appointed by the Obama administration to to positions: a seat on the Interagency Autism Coordinating Committee (IACC) and a seat on the National Council on Disability (NCD).

The author of the Wired piece, Steve Silberman, also blogs at PLoS. His piece there is No More Pity: The First Openly Autistic White House Appointee Speaks Out.

The Wired piece does touch on the opposition to Mr. Ne’eman’s appointment. I am grateful that this an other side issues are also met with a real discussion of what Mr. Ne’eman’s views are. I wish there even more of that discussion. Here is a small sample:

Very few of us wake up in the morning and think, “Have they developed a proper mouse model for autism yet?” Instead, autistic people and their parents worry about finding the educational and support services that they need.

As a parent, I appreciated this question and answer:

Wired.com: What advice would you give to neurotypical people who want to become effective allies of the autistic community?

Ne’eman: At the political level, watch where your money is going. There are a lot of well-meaning people who think they’re helping us by donating to Autism Speaks or other groups looking for a cure. It would be better for people to get involved in their local communities and ask tough questions like, “Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?”

Given Mr. Ne’eman’s recent appointments, I felt this was probably the key question of the interview:

Wired.com: What do you hope to accomplish in Washington?

Ne’eman: All across the country, we have hundreds of thousands of people on waiting lists for access to community services. People with disabilities don’t have the support we need to live independently, be employed, and participate in civic life. Instead, because of a bias in the way Medicaid is structured, many of us are segregated in institutions, which offer a much lower quality of life to disabled people at the same time that it works out to be much more expensive. It’s easier to get states to pay for an institution than to get them to allow people to access services in their homes. Making community services more accessible would be a huge game changer for all kinds of people with disabilities.

Passing one particular piece of legislation — the Community Choice Act — would accomplish that. The Community Choice Act would make it so that states would be required to pay for supports and services at home or in the community, but it would actually save money, because institutional placements are very expensive. There’s no reason not to do this.

ASAN Update on IACC Public Comment Deadline

27 Jul

The Interagency Autism Coordinating Committee (IACC) has the job of creating a strategy for the U.S. government’s research in autism. They are made up of government officials, professionals, parents and, most importantly, autistics. The IACC creates their Strategic Plan with input from the public.

One of the big opportunities to submit input is this week. The IACC has an “RFI“, request for information. This is your chance to tell the IACC what you think should (and should not) be stressed in autism research.

I was reminded of this deadline when I received an email from the Autistic Self Advocacy Network (ASAN), which I quote below:

This is another ASAN Update for bloggers in the Autistic and disability rights communities. The public comment period for the Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research closes this Friday, July 30, 2010, as stated in the IACC’s reminder notice set forth below. The IACC is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism. The Autistic Self Advocacy Network encourages public participation in the IACC’s proceedings.

As always, please feel free to contact us if you have any questions or feedback, and let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network

The RFI announcement is below:

Reminder: IACC 2010 RFI to Inform the 2011 Update of the IACC Strategic Plan Closes This Friday, July 30, 2010

The IACC has issued a formal Request for Information (RFI) to solicit public input to inform the 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research. During the six-week public comment period (June 18 – July 30, 2010), members of the public are asked to provide input to the committee on what has been learned in the past year about the issues covered in each of the seven chapters of the IACC Strategic Plan, and on what are the remaining gaps in the subject area covered by each chapter. In addition, the committee is seeking input on the introductory chapter and other general comments about the Strategic Plan. Comments collected through this RFI will be posted to the IACC web site after the closing date.

If you would like to respond to the RFI, please go to: http://www.acclaroresearch.com/oarc/2010rfi/. Responses will be accepted until this Friday, July 30, 2010.

Take the time to comment. You don’t have to give them permission to use your name. You don’t have to respond to every section. You can give a short comment or two (or more) and be done.

Now is the time!

Ari Ne’eman’s previous work with the National Council on Disability

23 Jun

Ari Ne’eman has been appointed as a full member of the National Council on Disability. With that announcement came some criticism of the appointment, including comments on this blog indicating that Mr. Ne’eman’s doesn’t have the experience necessary to serve.

Given that, I thought I would share a couple of things I found on the NCD’s website. I was searching for an announcement of the Senate confirmation of his appointment. What I found was a surprise to me: Mr. Ne’eman has been working with the NCD since 2007 in the Youth Advisory Council.

This recent announcement acknowledges some of Mr. Ne’eman’s work bringing together a coalition of disability organizations:

Advisory Committee Member Achievement

NCD’s Youth Advisory Committee policy workgroup leader, Ari Ne’eman (NJ), received recent accolades for his successful leadership of advocacy work that mobilized the broader disability community on an international scale. In his thank-you note to the 22 disability rights organizations and countless individuals whose combined efforts resulted in withdrawal of an ad campaign depicting people with disabilities in a negative way, Ari noted “this is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world” (www.autisticadvocacy.org).

Mr. Ne’eman was a leader of the NCD’s Youth Advisory Council policy workgroup starting in 2007.

With its charter renewed until October 2009, NCD’s YAC met on November 15, 2007, after welcoming seven new members, new officers (Amy Doherty-chair; Carly Fahey -vice chair; Matt Cavedon -Secretary), procedural workgroup leaders (Ari Ne’eman-Policy; Daman Wandke-Outreach and Networking), and mentors (Stephanie Orlando and Miranda Pelikan). The committee reported topics and issues of interest such as aversives and restraints, healthcare accessibility, expanding ways of gathering youth and young adult perspectives, and planning to make a new proposal to NCD about disability history awareness-raising. We welcome aboard in FY2008 Jesutine Breidenbach (MN), Brett Cunningham (OK), Paul Fogle (PA), Eddie Rea (CA), Nicole Schneider (FL), Nathan Turner (OH), and Bryan Ward (DE). YAC meets again on January 17, 2008, at 4:00 p.m. EST. Please e-mail your questions about YAC to Dr. Gerrie Hawkins

Maybe it is time to give Mr. Ne’eman credit for years of service and welcome him to the NCD?

ASAN Update on NCD Confirmation

23 Jun

I received this email update this morning. I wrote a brief piece about the appointment yesterday.

This is another ASAN Update for bloggers in the Autistic and disability rights communities. The Autistic Self Advocacy Network would like to thank President Obama and the U.S. Senate for the nomination and confirmation of ASAN President Ari Ne’eman to serve as a member of the National Council on Disability (NCD). He will be the first Autistic person to serve as a member of NCD. An independent federal agency, NCD makes recommendations to the President and Congress on issues of importance to Americans with disabilities. To learn more about NCD, go to http://www.ncd.gov

An article about the confirmation can be found on Disability Scoop:

http://www.disabilityscoop.com/2010/06/22/neeman-confirmation/9133/

As always, we encourage you to contact us with your comments, and please let us know if you would prefer to receive these announcements at a different address or to be removed from the list.

Best regards,

Meg Evans, Director of Community Liaison
Autistic Self Advocacy Network

Ari Ne’eman appointed to National Council on Disability

22 Jun

Ari Ne’eman has been appointed to the National Council on Disability. This will make him the first autistic member of the Council. Mr. Ne’eman is the Founding President of the Autistic Self Advocacy Network (ASAN).

I have been checking the Senate Calendar periodically to monitor the status of his nomination, which was on hold. When I found his name was no longer on the calendar, I did a quick google search and round Senate Confirms Controversial Autism Self-Advocate To National Disability Council. Disability Scoop notes that Mr. Ne’eman’s appointment was unanimously approved by the Senate.

Earlier this year, Mr. Ne’eman was appointed to the Interagency Autism Coordinating Committee.

Joint Letter on Cross-Disability Representation in Designating Medically Underserved Populations

10 Jun

A very broad coalition of disability groups has sent a letter to the secretary of the U.S. Department of Health and Human Sevices, Kathleen Sebelius. Amongst those groups is the Autistic Self Advocacy Network (ASAN). A statement from ASAN in an email announcing this letter is below:

In the United States, people with disabilities often face barriers to obtaining adequate health care, and one of the major difficulties is a lack of adequately trained primary care providers. The Autistic Self Advocacy Network has signed a joint letter from cross-disability organizations calling on the U.S. Health Resources and Services Administration to include representation of the cross-disability community in designating medically underserved populations. The letter has been published on the main ASAN website

The letter in full is reproduced here:

June 9, 2010

To:

Kathleen Sebelius
Secretary
Health and Human Services

Mary Wakefield
Administrator
Health Resources and Services Administration

Pam Hyde, JD
Administrator
Substance Abuse and Mental Health Administration

We the undersigned disability advocacy groups urge you to include representation of the cross-disability community on the Negotiated Rulemaking Committee (NR) that will establish a comprehensive methodology and criteria for designation of “Medically Underserved Populations” (MUPS) and Primary Care Health Professions Shortage Areas. As a cross-disability community, we are stakeholders in the task you will undertake. However, we do not fit within the geographic census track data that has been used in the past to designate medically underserved populations. More than 54 million Americans with disabilities, including individuals with physical, mental health, sensory, environmental, cognitive, intellectual, and developmental disabilities experience inadequate health care because of a lack of primary care providers trained to treat them. In 2000, Healthy People 2010, cautioned that “as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population.” They have and the data is startling.

Basic primary care is not a guarantee for anyone in the disability community. (Drainoni M, Lee-Hood E, Tobias C, et al., 2006) Three out of five people with serious mental illness die 25 years earlier than other individuals, from preventable, co-occurring chronic diseases, such as asthma, diabetes, cancer, heart disease and cardiopulmonary conditions. (Colton & Manderscheid, 2006; Manderscheid, Druss, & Freeman, 2007) Inaccessible medical equipment and lack of trained physicians, dentists, and other health professionals prevent individuals with disabilities from receiving the basic primary and preventive care others take for granted, such as getting weighed, preventative dental care, pelvic exams, x-rays, physical examinations, colonoscopies, and vision screenings. (Kirschner, Breslin, & Iezzoni, 2007; Chan, Doctor, MacLehose, et al. (1999); Manderscheid R., Druss B., & Freeman E . 2007).

People who are deaf or experience significant problems hearing report they were three times as likely to report fair or poor health compared with those without hearing impairments. (NCD, 2009). They have difficulty communicating with primary care providers who don’t want to pay interpreters or “bother” with a Telecommunication Device for the Deaf (TDD). Children with ADD may have difficulty getting examined by primary care providers untrained to treat them. People with significant vision loss are more likely to have heart disease and hypertension, experience a greater prevalence of obesity, and smoke more than the general population. (NCD, 2009). Further, people who are blind often miss out on the prevention handouts and booklets given to patients by primary care providers. Even providers report they have difficulty communicating with patients who are deaf or have severe visual impairments. (Bachman S., Vedrani, M., Drainoni, M., Tobias, C., & Maisels L., 2006)

27% of adults with major physical and sensory impairments are obese, compared with 19% among those without major impairments (Iezzoni, 2009). Research shows that individuals with intellectual disabilities must contact 50 physicians before they can find one trained to treat them. (Corbin, Holder, & Engstrom, 2005)

According to the National Council on Disability (NCD), 2009 report, The Current State of Health Care for People with Disabilities, “[p]eople with disabilities experience significant health disparities and barriers to health care, as compared with people who do not have disabilities.” Further, “[t]he absence of professional training on disability competency issues for health care practitioners is one of the most significant barriers preventing people with disabilities from receiving appropriate and effective health care.”

Members of the disability community experience a broad spectrum of functional limitations that result from their disabilities. Many experience secondary chronic conditions. As the recent draft “A Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions “ by the HHS Working Group on Multiple Chronic Conditions” (May, 2010) reported, functional limitations can often complicate access to health care and interfere with self-management. The Institute of Medicine noted there is evidence that patients actively receiving care for one chronic condition may not receive care for other unrelated conditions.

The 1997 IOM report Enabling America bluntly stated that federal research effort in the area of disability was inadequate. On July 26, 2005, the U.S. Surgeon General issued a Call to Action warning that people with disabilities can lack equal access to health care. Though some funds are available for developmental and intellectual disabilities through the CDC, Maternal and Child Health, and the Developmental Disabilities Act, the 2007 IOM report, The Future of Disability in America states that research spending on disability is miniscule in relation to current and future needs. In this Report the IOM also warns that the number of people with disabilities is likely to rise, fueled by aging baby boomers.

We need to assure adequate numbers of primary care providers are trained to treat the population of people with disabilities; people with disabilities from across the disability community have access to adequate primary care; and funding is available for research and programs to end the health disparities people with disabilities face. With the passage of health care reform and the formation of the NR Committee to redefine “medically underserved populations,” HRSA can finally work to rectify the problem for all people with disabilities. Collectively, we are an underserved population and we are not adequately represented on the proposed NR Committee. We urge you to appoint someone to represent the cross-disability community, recognize people with disabilities as a constituency stakeholder within the definition of medically underserved populations, and include subject matter experts who represent the health care needs of the cross-disability community. Our groups are glad to serve as resources for HRSA. Thank you. (References below signatures.)

Sincerely

Access Living
ADAPT
ADAPT Montana
Alpha-1 Association
Alpha-1 Foundation
American Association of People With Disabilities
American Association on Health and Disability
Amputee Coalition of America
American Medical Rehabilitation Providers Association
American Network of Community Options and Resources
American Speech-Language-Hearing Association
The Arc of the United States
Association of Maternal & Child Health Programs
Autistic Self-Advocacy Network
Bazelon Center for Mental Health Law
Brain Injury Association of America
Bronx Independent Living Services
California Foundation Independent Living Centers
Center for Disability Rights (Rochester)
Center for Independence of the Disabled, NY.
Center for Self-Determination
Center for Women’s Health Research at UNC
CHADD – Children and Adults with Attention-Deficit/Hyperactivity Disorder
COPD Foundation
Council for Exceptional Children
Disability Health Coalition
The Disability Network
Easter Seals
The Epilepsy Foundation
First Signs
Hearing Loss Association of America
Life Skills Institute and Life Skills, Inc
Little People of America
Mental Health America
National Association of County Behavioral Health and Developmental Disability Directors
National Association of Head Injury Administrators
National Association of Councils on Developmental Disabilities
Khmer Health Advocates, Inc.
National Coalition for Mental Health Recovery
National Council on Independent Living (NCIL)
National Down Syndrome Society
National Organization of Nurses with Disabilities
National Association of Private Special Education Centers
National Association of the Deaf
National Center for Environmental Health Strategies, Inc.
National Multiple Sclerosis Society
National Spinal Cord Injury Association
New York Association of Psychiatric Rehabilitation Services
Not Dead Yet
Physician-Parent Caregivers
Regional Center for Independent Living (Rochester, NY)
Rochester ADAPT
Spina Bifida Association
Statewide Independent Living Council of GA, Inc.
Stop CMV – The CMV Action Network
Substance Abuse Resources and Disabilities Issues Program (SARDI), Boonshoft School of Medicine
TASH
Tourette Syndrome Association
Tuberous Sclerosis Alliance
Master of Public Health Program, Tufts University School of Medicine
United Cerebral Palsy
United Spinal Association
Center on Independent Living, University of Kansas

References:
Bachman S., Vedrani, M., Drainoni, M., Tobias, C., Maisels L., , Provider Perceptions of Their Capacity to Offer Accessible Health Care for People With Disabilities J Disabil Policy Stud.; Winter 2006; 17, 3; 130-136
Chan L, Doctor JN., MacLehose RF., et al. (1999) Do Medicare patients with disabilities receive preventive services? Arch Phys Med Rehabil. 80:642-646
Colton CW., Manderscheid RW.. (2006, April). Congruencies in increased mortality rates, years of potential life lost, and causes of death among public mental health clients in eight states. Preventing Chronic Disease: Public Health Research, Practice and Policy. 3(2), 1-14. Available at http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=16539783.
Corbin S., Holder M., Engstrom K. (2005) Changing attitudes, changing the world: the health and health care of people with intellectual disabilities. Washington, D.C.: Special Olympics International.
Drainoni M, Lee-Hood E, Tobias C, Bachman S, Andrew J, Maisels L. (2006) Cross-disability experiences of barriers to health-care access. J Disabil Policy Stud. 17:101-115.
HHS Working Group on Multiple Chronic Conditions. (2010, May) Strategic Framework 2010-2015 – Optimum Health & Quality of Life for Individuals with Multiple Chronic Conditions. (Draft) Available online at:
Iezzoni, L.I., (2009, January 27) Testimony before the Senate Health, Education, Labor, and Pensions Committee, by Lisa I. Iezzoni, MD, Professor of Medicine, Harvard Medical School and Associate Director, Institute for Health Policy, Massachusetts General Hospital, Boston, MA.
Iezzoni LI, McCarthy EP, Davis RB, Siebens H. Mobility impairments and use of screening and preventive services. Am J Public Health. 2000;90:955-961.
Institute of Medicine, (1997) Enabling America, National Academies Press, Washington, DC
Institute of Medicine, (2007) The future of disability in America. National Academies Press, Washington, DC.
Kirschner K.L., Breslin, ML., Iezzoni, LI., (2007, March 14) Structural impairments that limit access to health care for patients with disabilities. JAMA,. 297:10:1121-1125
Manderscheid R., Druss B., Freeman E . (2007, August 15). Data to manage the mortality crisis: Recommendations to the Substance Abuse and Mental Health Services Administration. Washington, D.C.
National Council on Disability (NCD), (2009) The Current State of Health Care for People with Disabilities. Available online at: http://www.hhs.gov/ophs/initiatives/mcc/federal-register051410.pdf
US. Department of Health and Human Services. Health People 2010. 2nd ed. With Understanding and Improving Health, and Objectives for Improving Health. 2 Vols. Washington, DC: U.S. Government Printing Office, November 2000

Finding common ground at the IACC

1 May

The Interagency Autism Coordinating Committee (IACC) met Friday. New members were introduced, including Ari Ne’eman of the Autistic Self Advocacy Network.

The autism communities are far from unanimous in goals and methods. Given the makeup of the IACC, consisting as it does of governmental agencies plus public members of organizations that have been highly critical of each other, one might wonder if it anything could get accomplished.

But, in the end, most groups have more than a single goal. And, if you remember back to your set theory lessons, that leads to intersections–overlap–common ground.

I was reminded of this watching the IACC meeting. I could only watch bits and pieces during the day. One standout part of the morning came when Jim Moody of the National Autism Association gave a public comment talking about issues of safety, elopement, drownings–preventable deaths of autistics young and old.

Towards the end of the meeting I listened to a number of people refer back to this presentation. Amongst these commenters was Ari Ne’eman. Mr. Ne’eman obviously took the idea seriously and was calling for serious consideration of how this could be implemented into the Strategic Plan, calling for input from the services subcommittee.

I know the idea of safety are not new to Mr. Ne’eman. I contacted him recently when I was preparing a piece, Search and Rescue and autistics.

The members of the IACC span a wide diversity of ideas and viewpoints. Diversity, that’s a good thing.

But, working together for the common good: that’s common ground. Ideas that span diverse organizations and viewpoints. That is a very good thing.

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