Archive | Advocacy RSS feed for this section

ASAN Statement On Dr. Phil Episode Featuring K. Stapleton

20 Sep

Below is a statement by the Autistic Self Advocacy Network.

The Autistic Self Advocacy Network issued a statement on Friday, September 19th, condemning Dr. Phil for recent segments featuring Kelli Stapleton.

Stapleton is currently standing trial and has pled guilty to the charge of first-degree child abuse for the attempted murder of her autistic daughter, Issy Stapleton, age 14. The Dr. Phil segments are consistent with the broader media coverage in the year since the attempted murder; rather than rallying with sympathy and support for a child victim of attempted filicide, there have been near-constant attempts to excuse and justify her murderer and paint the person who tried to kill her–her own mother–as the “real” victim. But this abhorrent and retraumatizing brand of violence found a new voice and a new vigor on Dr. Phil.

In the segments, K. Stapleton has been granted new means to exploit her victim. Whether this comes in the form of violating her daughter’s privacy by sharing some of her most vulnerable moments with the world; crafting a sensationalized and dehumanizing narrative of her daughter’s life; using this narrative to solicit dubious donations; or committing character assassination by emphasizing her daughter’s “violence” and painting her as monstrous, Dr. Phil offered an abusive and murderous parent a platform, with no regard for the consequences to her victim–or the potential copycat effects.

“We see a pattern of copycat crimes whenever there is a well-publicized case of a parent murdering, or attempting to murder, their disabled child” said Julia Bascom, ASAN’s Director of Programs. “Every time this happens, commenters come out of the woodwork offering every possible excuse, and nothing could be more dangerous. As disabled people, our lives aren’t valued, and we see the consequences in every one of these headlines. Stapleton attempted to kill her daughter one year ago in the wake of an extremely well-publicized and extraordinarily hateful hatchet job about the murder of another autistic teenager, Alex Spourdalakis. Dr. Phil had an opportunity to shut down this cycle of violence, and instead he chose to perpetuate it, as loudly and widely as possible.”

The victim of child abuse is not the adult abuser. The victim of murder is not the murderer. K. Stapleton is not the victim of her attempted filicide, but she has been allowed to re-victimize her target. The Autistic Self Advocacy Network forcefully denounces Dr. Phil for facilitating this violence, and urges the disability community to join us in breaking the cycle of violence and copycat murders we see year in and year out. Join us in sending this message: it is always wrong for a parent to murder their child. There is never a justification. There are always other options. The only victims here are disabled people murdered by those we should have been able to trust the most.

And to Issy Stapleton, the only victim of this tragedy, the only person whose voice deserves to be heard here, we say: what your mother did was not okay, and it wasn’t your fault. There is a whole world of people who support you. We are sorry this happened to you, and we are doing everything in our power to make sure it can never happen to anyone, ever again. You deserve nothing less.

Combating Autism Reauthorization Act of 2014

17 May

The text of the bill to reauthorize the Combating Autism Act is below.

A few notes:

The bill does include the “Combating” term that is the topic of controversy. This is contrary to what I wrote in my previous article on the reauthorization.

There are not two legislatively appointed representatives to the IACC as previously reported but four. Two from the House. Two from the Senate.

There is a strong emphasis on focusing on adult autistics. Consider the last section “REPORT TO CONGRESS ON DEMOGRAPHICS AND NEEDS OF ADULTS WITH AUTISM SPECTRUM DISORDER”

Much as I desperately would love to see this work done, I do not generally support legislative mandated research. This is a report to congress to inform them on an area which, frankly, they need to hear about.

The demographics and needs of autistic adults is a huge hole in the body of knowledge we have about autism. And while politically active groups are wasting their time and money on congressional hearings to validate their failed views on vaccines,


By Matt Carey
note: I serve as a public member to the IACC but all comments and views here and elsewhere are my own.

text of the proposed bill:

A BILL

To reauthorize certain provisions of the Public Health Service Act
relating to autism, and for other purposes.

Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the “Combating Autism Reauthorization Act
of 2014”.

SEC. 2. REAUTHORIZATION OF PROGRAMS RELATING TO AUTISM.

(a) National Autism Spectrum Disorder Initiative.–Part R of title
III of the Public Health Service Act (42 U.S.C. 280i et seq.) is
amended–
(1) by redesignating sections 399AA through 399EE as
sections 399BB through 399FF, respectively; and
(2) by inserting before section 399BB, as redesignated, the
following:

“SEC. 399AA. NATIONAL AUTISM SPECTRUM DISORDER INITIATIVE.

“(a) Establishment.–For the purposes described in subsection (b),
the Secretary shall designate an official within the Department of
Health and Human Services to establish and oversee a National Autism
Spectrum Disorder Initiative (in this section referred to as the
`Initiative’).
“(b) Purposes.–The purposes of the Initiative shall be–
“(1) to implement a strategic plan for the conduct of, and
support for, autism spectrum disorder research, taking into
account the strategic plan developed by the Interagency Autism
Coordinating Committee under section 399DD(b); and
“(2) to ensure that autism spectrum disorder research
programs and activities of the Department of Health and Human
Services are not unnecessarily duplicative of other Federal
research programs and activities.”.
(b) Developmental Disabilities Surveillance and Research Program.–
Section 399BB of the Public Health Service Act (42 U.S.C. 280i), as
redesignated, is amended–
(1) in subsection (a), by inserting “for children and
adults” after “reporting of State epidemiological data”;
(2) in subsection (b)(1), by striking “establishment of
regional centers of excellence” and inserting “establishment
or support of regional centers of excellence”;
(3) in subsection (b)(2), by striking “center to be
established” and inserting “center to be established or
supported”; and
(4) in subsection (e), by striking “2014” and inserting
“2019”.
(c) Autism Education, Early Detection, and Intervention.–Section
399CC(g) of the Public Health Service Act (42 U.S.C. 280i-1), as
redesignated, is amended by striking “2014” and inserting “2019”.
(d) Interagency Autism Coordinating Committee.–
(1) Appointment of members by congressional leaders.–
Section 399DD(c)(1) of the Public Health Service Act (42 U.S.C.
280i-2(c)(1)), as redesignated, is amended–
(A) in subparagraph (D), by striking “and” at the
end;
(B) by redesignating subparagraph (E) as
subparagraph (I); and
(C) by inserting after subparagraph (D) the
following:
“(E) one member appointed by the Speaker of the
House of Representatives;
“(F) one member appointed by the majority leader
of the Senate;
“(G) one member appointed by the minority leader
of the House of Representatives;
“(H) one member appointed by the minority leader
of the Senate; and”.
(2) Preventing duplication.–Section 399DD(b) of the Public
Health Service Act (42 U.S.C. 280i-2(b)), as redesignated, is
amended–
(A) in paragraph (5), by striking “and” at the
end;
(B) by redesignating paragraph (6) as paragraph
(7); and
(C) by inserting after paragraph (5) the following:
“(6) include in such strategic plan recommendations to
ensure that autism spectrum disorder research programs and
activities of the Department of Health and Human Services are
not unnecessarily duplicative of other Federal research
programs and activities; and”.
(3) Extension of sunset provision.–Section 399DD(f) of the
Public Health Service Act (42 U.S.C. 280i-2), as redesignated,
is amended by striking “2014” and inserting “2019”.
(e) Report to Congress.–Section 399EE of the Public Health Service
Act (42 U.S.C. 280i-3), as redesignated, is amended–
(1) in subsection (a), by striking “Combating Autism
Reauthorization Act of 2011” and inserting “Combating Autism
Reauthorization Act of 2014”; and
(2) in subsection (b)–
(A) in paragraph (1), by striking “provisions of
the Combating Autism Act of 2006” and inserting
“provisions of this part, section 404H, and section
409C”;
(B) in paragraph (2), by striking “provisions of
Combating Autism Act of 2006” and inserting
“provisions of this part, section 404H, and section
409C”;
(C) in paragraph (3), by striking “Combating
Autism Act of 2006” and inserting “Combating Autism
Reauthorization Act of 2011”;
(D) in paragraphs (4) and (5), by striking “over
the 6-year period beginning on” each place it appears
and inserting “since”;
(E) in paragraph (8), by striking “and” at the
end;
(F) in paragraph (9), by striking the period at the
end and inserting “; and”; and
(G) by adding at the end the following:
“(10) a description of the actions taken to implement, and
the progress made on implementation, of the strategic plan
developed by the Interagency Autism Coordinating Committee.”.
(f) Authorization of Appropriations.–Section 399FF of the Public
Health Service Act (42 U.S.C. 280i-4), as redesignated, is amended–
(1) in subsection (a)–
(A) by striking “399AA” and inserting “399BB”;
and
(B) by striking “fiscal years 2012 through 2014”
and inserting “fiscal years 2015 through 2019”;
(2) in subsection (b)–
(A) by striking “399BB” and inserting “399CC”;
and
(B) by striking “fiscal years 2011 through 2014”
and inserting “fiscal years 2015 through 2019”; and
(3) in subsection (c)–
(A) by striking “399CC” and inserting “399DD”;
and
(B) by striking “$161,000,000 for each of fiscal
years 2011 through 2014” and inserting “$190,000,000
for each of fiscal years 2015 through 2019”.

SEC. 3. REPORT TO CONGRESS ON DEMOGRAPHICS AND NEEDS OF ADULTS WITH
AUTISM SPECTRUM DISORDER.

(a) In General.–Not later than 24 months after the date of
enactment of this Act, the Comptroller General of the United States
shall complete a study and submit to the Congress a report on the
demographics and needs, if any, of individuals in the United States
with an autism spectrum disorder (in this section referred to as
“ASD”).
(b) Issues To Be Addressed.–The study and report under subsection
(a) shall–
(1) address the demographics of individuals with ASD making
the transition from a school-based support system to adulthood;
(2) address the needs, if any, of adults with ASD with
respect to–
(A) community integration;
(B) housing and residential supports;
(C) employment;
(D) transportation;
(E) vocational training and rehabilitation;
(F) continued education;
(G) health care and social services;
(H) speech therapy;
(I) public safety; and
(J) day habilitation activities, including those to
provide a safe, respectful, and stimulating environment
that allows participants to become active members of
their community;
(3) provide an overview of Federal, State, and local
government policies and programs, and any available private
(including private nonprofit) sector assistance, for addressing
the needs identified in paragraph (2); and
(4) provide policy recommendations to–
(A) improve outcomes for adults with ASD making the
transition from a school-based support system to
adulthood;
(B) enhance the effectiveness of the policies,
programs, and assistance described in paragraph (3);
(C) ensure integration of and collaboration among
services for addressing the needs of adults with ASD;
and
(D) encourage independent living, equal
opportunity, full participation, and economic self-
sufficiency.
(c) Survey.–
(1) In general.–In carrying out this section, the
Comptroller General shall conduct a survey of public and
private sector stakeholders on–
(A) the needs, if any, of adults with ASD;
(B) the services and resources available for
addressing such needs; and
(C) the effectiveness of such services and
resources.
(2) Stakeholders.–The stakeholders to be surveyed under
paragraph (1) include the following:
(A) Individuals from the business community
representing both large and small businesses.
(B) Institutions of higher education, community
colleges, vocational schools, and university centers
for excellence in developmental disabilities.
(C) Social service providers, including case
management experts and health care providers.
(D) Vocational rehabilitation experts.
(E) State and local housing departments and
nonprofit organizations that provide housing services
for individuals with disabilities.
(F) Individuals with ASD, parents of individuals
with ASD, and representatives from advocacy groups that
focus on individuals with ASD.
(G) Officials or employees of the Federal
Government responsible for overseeing disability
services at each of the following departments and
agencies:
(i) The Department of Health and Human
Services, including the Administration for
Children and Families, the Centers for Disease
Control and Prevention, the Centers for
Medicare & Medicaid Services, the Health
Resources and Services Administration, and the
Administration for Community Living.
(ii) The Department of Education.
(iii) The Department of Housing and Urban
Development.
(iv) The Department of Labor.
(v) The Department of Justice.
(vi) The Department of Transportation.
(vii) Any other Federal departments and
agencies determined appropriate by the
Comptroller General.

IACC meeting Agenda for 9 April, 2013

9 Apr

Tomorrow is a meeting of the U.S. Interagency Autism Coordinating Committee. Full information is on her IACC website. This includes the agenda.

9:00 AM Welcome and Roll Call    
Thomas Insel, M.D.   
Director, National Institute of Mental Health (NIMH) and Chair, IACC   
Susan Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination, NIMH and Executive Secretary, IACC   

9:05  Update from Administration for Children and Families   
Linda Smith
Deputy Assistant Secretary and Inter-Departmental Liaison for Early  Childhood Development Administration for Children and Families (ACF)   

9:15 Changes in Prevalence of Parent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011-2012     
Stephen Blumberg, Ph.D. 
Acting Associate Director for Science Division of Health Interview Statistics National Center for Health Statistics   Centers for Disease Control and Prevention (CDC)     
Michael Kogan, Ph.D 
Director, Office of Epidemiology and Research   Health Resources and Services Administration (HRSA)

9:45  Project SEARCH at the National Institutes of Health (NIH)   
Maureen Gormley, M.P.H., M.A., R.N.  
Chief Operating Officer, NIH Clinical Center 

10:15  Break 

10:30  Panel on Minimally Verbal Children with Autism    

10:30  NIH Autism Centers of Excellence Update 

Alice Kau, Ph.D.
Program Director, Autism Spectrum Disorders Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) 

10:40  NIH Workshop on Nonverbal School-Aged Children with Autism 

Connie Kasari, Ph.D. 
Professor of Psychological Studies in Education and Psychiatry University of California, Los Angeles 
Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program Boston University 

10:55 Communication Growth in Minimally Verbal Children with Autism 
Connie Kasari, Ph.D.
Professor of Psychological Studies in Education and Psychiatry University of California, Los Angeles  

11:20 Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions 
Helen Tager-Flusberg, Ph.D.
Director, Developmental Science Program Boston University 

11:45 Q&A with Committee 

12:00  Autism NOW Website 
Katherine Cargill-Willis
Program Specialist Administration on Intellectual and Developmental Disabilities (AIDD) Administration for Community Living (ACL)   

Amy Goodman, Kevin Wenzel, and Karen Wolf-Branigin  
The Arc

12:20 PM Lunch 

1:00  Oral Public Comments Session 

1:30  IACC Member Discussion of Public Comments  

2:00   IACC Business     

2:00 Science Update       
Thomas Insel, M.D.    
Director, National Institute of Mental Health (NIMH) and Chair, IACC     

2:10 Introductory Comments and OARC/IACC Update 
Thomas Insel, M.D.    
Director, NIMH and Chair, IACC    
Susan Daniels, Ph.D.   
Acting Director, Office of Autism Research Coordination, NIMH and  Executive Secretary, IACC 

2:25 Update from Subcommittee for Basic and Translational Research  

Question 1 Planning Group 
DSM-5 Planning Group   

2:45 Update from Subcommittee for Services Research and Policy 

3:00 Break 

3:15 Committee Discussion     

5:20  Wrap-Up 

5:30  Adjournment

I am extremely pleased to see this focus on minimally verbal autistics in this meeting. This is a focus area I and others have asked for.


By Matt Carey

Note: I serve as a public member to the IACC but my comments here and elsewhere are my own.

IACC Recommends Public and Private Insurance Coverage of Early Behavioral Interventions for Children with Autism

8 Apr

The U.S. Interagency Autism Coordinating Committee (IACC) sent a letter recently to Kathleen Sebelius, the Secretary of Health and Human Services calling for public and private health insurance coverage for behavioral interventions for autistic children. The letter and the press release are below:

IACC Recommends Public and Private Insurance Coverage of Early Behavioral Interventions for Children with Autism (PDF – 79 KB)

Today the Interagency Autism Coordinating Committee (IACC) submitted a letter to the Secretary of Health and Human Services, Kathleen Sebelius, recommending public and private insurance coverage of early behavioral interventions for children with autism spectrum disorder (ASD). The Committee developed the recommendations following discussions in early 2013 concerning the Affordable Care Act (ACA). While the IACC heard about the gains made toward meeting the needs of people with ASD through the first steps of the implementation of the Act, concerns were also voiced by the community about remaining gaps, including the lack of access to insurance coverage for early behavioral interventions.

As a part of the implementation of the ACA, States are in the process of defining “essential health benefits” (EHB) that will be covered by private insurers. The IACC was particularly concerned about the benefit for “mental health and substance use disorder services, including behavioral health treatment.” Under this benefit, the Committee considered it to be critically important that the benchmark plans in all States provide the robust and consistent coverage for behavioral therapy that has been shown to be effective for children with ASD.

Currently, only approximately half of States have decided to offer private insurance plans that provide autism-specific behavioral interventions, while others are still in the process of making decisions. Even less is known about what type of coverage for early behavioral interventions may be available through Medicaid, a publicly-funded insurance program that is the single largest funder of medical care for children with ASD.

In light of increasing evidence for the effectiveness of early interventions, including a recent study funded by the Health Resources and Services Administration (HRSA)1 and a Cochrane analysis,2 the IACC drafted a letter to Secretary Sebelius recommending support for coverage of and broad access to early behavioral interventions for children diagnosed with ASD, including children covered under both private and publicly-funded (Medicaid) health plans. The IACC also recommended a Federal minimum standard of autism coverage through the essential health benefits for all health plans offered in the individual and small group markets and that minimum coverage include early intervention for children with ASD at a level of intensity indicated by the evidence.

The IACC considers access to early behavioral interventions for those with autism to be a critically important issue and hopes that this letter will provide helpful information to Secretary Sebelius as well as to the larger community as they consider the best ways to address the needs of all people with disabilities. The Committee believes that broadening access to evidence-based early behavioral interventions has the potential to improve outcomes and the quality of life for people with autism and their families.

References
1 Maglione MA, Gans D, Das L, Timbie J, Kasari C; Technical Expert Panel; HRSA Autism Intervention Research – Behavioral (AIR-B) Network. Nonmedical interventions for children with ASD: recommended guidelines and further research needs. Pediatrics. 2012 Nov;130 Suppl 2:S169-78. [PMID: 23118248]

2 Reichow B, Barton EE, Boyd BA, Hume K. Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. 2012 Oct 17. [PMID: 23076956]

***

The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.


By Matt Carey

note: I serve as a public representative to the IACC but all comments here and elsewhere are my own.

Via Autistic Hoya: Judge Rotenberg Center Survivor’s Letter

10 Feb

The Judge Rotenberg Center (JRC) is a school for autistic students which incorporates aversives into the program for some of their students. These aversives are electric shocks delivered via remote-control to packs the students wear 24/7.

The JRC has been the focus of a great deal of criticism. To put it mildly. JRC has repeatedly described the shocks in relatively mild terms. Autistic Hoya (whose blog I highly recommend) has an article which includes a letter from a JRC survivor. I do not have permission from the author to copy the letter here, so I will send you to her site. With the warning that this is not an easy letter to read:

Judge Rotenberg Center Survivor’s Letter


By Matt Carey

Princeton families make $1.5M donation to Rutgers to study adult autism

2 Feb

NJ.com is reporting Princeton families make $1.5M donation to Rutgers to study adult autism. Two families donated $750,000 each, matched by another gift to the university to endow a chair in the psychology department:

Located at the Graduate School of Applied and Professional Psychology, the Karmazin and Lillard Chair in Adult Autism will pay for research and training future professionals to work in the growing field.

I find it very encouraging that the donors are parents of adolescent autistics.


By Matt Carey

A Decade of Left Brain/Right Brain

1 Jan

2013 marks the 10 year mark for Left Brain/Right Brain. The blog actually started in June, as I recall, but June of 2003. The blog started out as a place for Kev Leitch to write about his life and his work. Most of his writing about his life was about events pertaining to his autistic child. I found the blog a few years later and it had already evolved significantly from its early days. It has evolved since then as well.

In a time when the online and public discussion was dominated by groups of parents willing to characterize autistics as “train wrecks” and “empty shells” who had “descended into the hell of autism”, Kev stood up to counter the message. Kev put together the autism hub to band together autistics and allies who were writing from a perspective of respect. Kev hosted an online forum and at one point this blog was home to about 10 writers, autistic and allies.

Kev has moved on to other ventures. I wish him well. He did a lot of good here.


By Matt Carey

Follow

Get every new post delivered to your Inbox.

Join 1,132 other followers