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Washington employees accuse aerospace giant of Mental Health Parity violations
(APRIL 20, 2014) --Aerospace giant Boeinghas been hit with a complaint in federal court by its Washington state employees who claim the company's denial of insurance coverage of applied behavior analysis (ABA) for their children withautism violates thefederal Mental Health Parity Act. Filed by two families whose sons have autism, "C.S." and "D.Z.",the suit seeks certification as a class action on behalf of Boeing's 81,000 Washington-based employees.
Listed #30 on the Fortune 500 list as the nation's largest aerospace and defense firm, Boeing reported earning $3.9 billion in profits last year on $81.7 billion in revenues. Headquartered in Chicago, half of Boeing's employees are based in Washington. The suit was filed in U.S. Dstrict Court in Seattle.
The case has added significance because Boeing self-insures its employee health plan and therefore isregulated under federal ERISA lawwhich is immune from state autism insurance reform laws, such asthe law in its headquarters state of Illinois. The suit was filed bySeattle attorneys Ele Hamburger and Richard Spoonemore who have been winning a series of similar federal class action suits in Washington over ABA denials. The complaint alleges Boeing's denial of ABA benefits violates the 2008 Wellstone Domenici Mental HealthParity and Addiction Equity Act as well as its fiduciary responsibilities under ERISA.
Boeingdoes not expressly exclude ABA coverage in its health plan, but ratherhas its claims administrators exclude all coverage of ABA therapy through internal policies and restricted provider networks, the complaint alleges.
Boeing's non-mental health claims administrator, Blue Cross Blue Shield of Illinois (BCBSIL), excludedABA therapy coverage.When a Boeingemployeeoverturned thedenial,according to the complaint,Boeingdirected BCBSIL to classify ABA therapy as a mental health service to be administered by Value Options, which administers Boeing's mentalhealthclaims.
Boeing directed Value Options to limit its provider network in Washington state to exclude licensed ABA agencies, the plaintiffs assert.
"The effect of Boeing/Value Option's failure to include in its network any licensed ABA agencies in Washington state is the same as a blanket exclusion," according to the complaint."It is impossible for plaintiffs and the proposed class to obtain coverage for the ABA therapy services they need because Boeing will not contract with any providers who can deliver it."
The Mental Health ParityActdoesnotrequire Boeing to cover mental health services; rather it requires employers if they do choose to provide mental health coverage -- as the Boeing plan does-- to cover the benefits“at parity” with medical benefits.ERISA requires Boeing to abide by the Mental Health Parity Act and other regulation in administering its plan.
"By applying a blanket, hidden exclusion of ABA therapy to treat (autism), in violation of the Parity Act and its regulations, Boeing is systemically and uniformly failing to properly administer its Plan," according to the complaint. "It is alsobreaching its fiduciary duties to plaintiffs and class members, who have not received the benefits to which they are entitled."
The suit seeks a court order stopping Boeing from denying ABA coverage in its health plan and requiring reimbursement for past claims
This lawsuit seeks remedies for Boeing's breach of fiduciary duty under ERISA and its failure to properly administer the terms of Plan, as modified by the Parity Act and its implementing regulations. It further seeks to recover the benefits that have been wrongfully denied to plaintiffs and the class they seek to represent. It also seeks a court order declaring Boeing's exclusion of coverage for ABA therapy to treat ASD through a restricted network of providers void and unenforceable. The lawsuit further seeks an injunction to prevent any future or ongoing efforts by Boeing to use and enforce any blanket exclusions of ABA therapy to treat ASD.
The class consists of all individuals who have been, are, or will be Washington state participants or beneficiaries under The Boeing Master Welfare Plan that have been, are or will be in effect or renewed
Denials followed by delays prompts new regulatory enforcement
(April 17, 2014) -- The California Department of Insurance has won the go-ahead to enforce toughnewrequirements to stop private insurers from denying and delayingcoverage forbehavioral health treatments, such as applied behavior analysis (ABA), for autism.
The department based the new regulations on its interpretation of the state's 1999 Mental Health Parity Actand won approval Wednesday from the Office of Administrative Lawto begin enforcement. California is one of 35 states to require certain commercial insurers to cover behavioral health and other treatments for autism by law, yet still encounters widespread non-compliance by the industry.
"Approval of the mental health parity regulation will help end improper insurer delays and denials of medically necessary treatments for autistic individuals," said Insurance Commissioner Dave Jones. "This regulation provides clear guidance to the industry, stakeholders and consumers on the requirements of the Mental Health Parity Act from 1999."
The department proposed the newregulations when it found insurers were able to delay or deny medically necessary treatment for individuals with autism as required under California's 2011 auitism insurance reform law. The regulations further define the circumstances in which insurers must cover behavioral health treatment by specifically applying the requirements under the Mental Health Parity Act.
Since 2009, the Insurance Departmenthas referred23 cases related to denials of behavioral health and other autism treatment to external clinicians for Independent medical review. Of those, 19were overturned.
In another 40 cases that have been closed, the individual delays in obtaining treatment averaged nearly half a year; delays currently average over 10 months, or almost a year, for those cases which are still open. The cumulativedelays on open and closed casestotal 12,864 days, or 35.2 years.
"These lengthy delays all involve treatment that experts agree is most effective when provided in early childhood," the department argued in its regulatory proposal. "The benefits anticipated from the proposed regulation include significantly lessening or eliminating these delays and denials of treatment and substantially improving treatment efficacy and outcomes."
Gov. Brownback enacts law making Kansas 10th state to expand coverage
OVERLAND PARK, KS(April 16, 2014) -- Governor Sam Brownback today signed legislation expanding autism insurance coverage beyond the state employee health benefit program, culminating a six-year campaign to enact more meaningful reform in Kansas. Enactment of the law also made Kansas the 10th state to amend its original autism insurance law to make it stronger.
“Autism Speaks applauds Governor Brownback's support of the autism community," said Mike Wasmer, a Kansas resident who serves as Autism Speaks' director of state government affairs. "This bill is an important step toward providingaccess to medically necessary treatment for allindividuals with autism in Kansas.”
Sponsored by Rep. John Rubin (R-Shawnee), the new law,HB.2744, will require state-regulated large group and "grandfathered" small group individual health plans to cover medically necessary treatments, including applied behavior analysis (ABA), for autism for children up to age 12.
The bill as initially proposed by the House Insurance Committee would have limited ABA coverage to 10 hours per week, but was raised after vigorous opposition from the state's autism community. As enacted, the new law allows for 25 hours per week of ABA for four years from the time of diagnosis and then reduces to 10 hours per week.
The new law is spearate from the state's 2010 autism insurance reform law which applies only to state employees. The 2010 legislation when introduced would have covered the private market, but was amended into a pilot program limited to state employees to gauge the impact on health care costs. When the 2010 law was enacted, Wasmer, then president of the Kansas Coalition for Autism Legislation (KCAL), said, "This is not the end, but rather the start of getting autism treatment to all in need in the state of Kansas."
After being judged a success, the program was made permanent for state employees, but Kansas lawmakers continued to resist efforts to expand the coverage to the private market. In 2012, efforts to force a bill out of a committee fell one vote shy of success.
After Rubin introduced a bill this year that would have provided broader coverage, the insurance lobby filed a second version with much more restrictive terms and would have cut back existing benefits for state workers. After heated opposition from the state's autism community, HB.2744 was introduced as a compromise measure.
Wasmer said the new law marks a step forward, but that efforts will continue to provide the best coverage for the most children. The existing state employee autism benefit will continue unaffected by the new law.
House, Senate members briefed on needed changes in ABA coverage for military kids
WASHINGTON, DC (April 9, 2014) -- Military families raising children with autism and Down syndrome today called on Congress to overhaul insurance coverage provided under TRICARE for applied behavior analysis (ABA) during Capitol Hill briefingsorganized by Autism Speaks.Reps. John Larson (D-CT) and Tom Rooney (R-FL), who have championed TRICARE reform bills in the past, said they remain committed to improving ABA coverage for military kids and will soon introduce new legislation.
Kimberly Kapacziewski [left], whose son Cody, has been diagnosed with autism, came to Washington from Fort Benning, Georgia, where her husband, Joe, serves as a sergeant first class with the Army Rangers. Kapacziewski lost the bottom part of a leg to a hand grenadewhile serving his fifith tour in Iraq in2005, but later returned six times to active duty with the Rangers as an amputee.
Patricia Heath [right], whose daughter Marissa has been diagnosed with Down syndrome, is stationed at Eglin Air Force Base in Pensacola, Florida with her husband, Brandon, an Army master sergeant.
They were joined by Dr. Paul Wang, Autism Speaks' head of medical research, and Karen Driscoll, Autism Speaks' associate directorforfederalgovernment affairs and military relations. The wife of a retired Marine, her son has autism.
Kapacziewski said she and her husband had to travel to an Army base in Texas simply to find a pediatric specialist who could diagnose their som with autism. Medical professionals said Cody needed a minimum of 25 hours a week of ABA therapy, but TRICARE caps benefits at 12 hours.
"Her husbandhas already sacrificed a leg for his country, does he have to sacrifice a child too?" Larson said.
Heath said her daughter received three years of ABA therapy and was making tremendous progress when TRICARE cut off all benefits in 2012 by limiting coverage to children with autism, excluding those with Down syndrome, Fragile X, Angelman syndrome and other developmental disabilities. Her daughter soon regressed and once briefly wandered from home.
Driscoll said advocates or TRICARE reform are calling for ABA coverage to be made permanent for all children with disabilities, expanded access to treatment by allowing more trained providers to deliver reimbursable services, and continued vigilance over the Department of Defense to insure military dependents receive care that is consistent with best practices.
Wang cited the continued growth in the prevalence of autism which now affects an estimated 1 in 68 children. The benefits ofABAin treating autism and other developmental disabilities has been amply documented, he said, noting a recent endorsement before Congress by the American Academy of Pediatrics.
Gov. Gary Herbert signs bill requiring ABA, other coverages
SALT LAKE CITY (April 3, 2014) -- -- Gov. Gary Herbert today signed legislation making Utah the 35th state to enact autism insurance reform. Utah has one of the nation's highest rates of prevalence for autism at 1 in 54, or about 2 percent of the state population.
Sponsored by Sen. Brian Shiozowa, the bill (SB.57) was fiercely opposed by the insurance industry. The enactment of the law culminated six years of effort by the Utah Autism Coalition, providers and families to end insurance company discrimination against people with autism.
"Autism Speaks commends Senator Brian Shiozawa for his leadership in delivering for the Utah autism community," said Mike Wasmer, Autism Speaks' associate director of state government affairs. "The Utah Autism Coalition has fought hard to make this day happen and we were proud to be their partner."
The law requires many state-regulated health plans to cover speech, occupational and physical therapy, psychological and psychiatric care, and behavioral health treatments, including applied behavior analysis (ABA).
6-year effort to require insurers to cover treatments clears Legislature
TOPEKA (April 2, 2014) -- The Kansas Senate marked 2014 World Autism Awareness Day by ending years of legislative debate and approvinga bill that would expand insurance coverage ofmedically necessary treatments of autism. The measure heads to Gov. Sam Brownback.
Sponsored by Rep. John Rubin (R-Shawnee), the measure, HB.2744, was approved 38-2. The 'no' votes were cast by Senators Mary Pilcher-Cook (R-Shawnee) and Caryn Tyson (R-Parker). Brownback [left], meanwhile, announced he was participating in today's Light It Up Blue celebrations byilluminatingCedar Crest, the Kansas Governor's Residence.
The legislation is the latest in a series of attempts to expand Kansas' 2010 autism insurance reform law which is now restricted to state employees.The bill would require state-regulated large group and individual health plans to cover autism treatment for children up to the age of 12.
The 25-hour per week requirement for ABA would apply to the first four years following diagnosis then diminish to 520 hours per year afterwards.
Rubin earlier had introduced a bill proposing stronger coverages, but under intense insurance lobby pressure a compromise bill emerged from the House Insurance Committee.During committee debate on the bill, Rep. Scott Schwab of Olathe said he opposed mandates and that he was averse to "dealing with other people's health insurance."
If signed by Brownback, the bill would enable Kansas tojoin nine other states that have amended their original autism insurance laws to make them stronger.
Cites contributions of Americans with autism
WASHINGTON, DC (April 2, 2014) -- President Barack Obama today issued a White House proclamation recognizing World Autism Awareness Day,noting thatAmericans with autism are "an essential thread in the diverse tapestry of our Nation."
Obama cited the Affordable Care Act which prevents insurers from denying coverage to people because they have autism and requires preventive childhood screenings to detect autism at no out-of-pocket cost to parents.
The President also noted efforts to improve understanding of the autism spectrum and made reference to continued efforts, such as the Combating Autism Act [2011 reauthorization signing left] which will have dedicated over $690 million for autism research, monitoring and professional training by the time it expires September 30.
"Last year, I launched the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, a program that aims to revolutionize our understanding of the human mind," the proclamation reads. "By unlocking new knowledge of the brain, we can pave the way for myriad medical breakthroughs, including a greater appreciation for the science of autism."Read the proclamation HERE.
Families urging Legislature to restore funding
(March 31, 2014) -- Four autism centers providing early intervention services for Oklahoma children are in danger of closing due to a threatened $600,000 state budget cut.
Families across the state are now appealing to Oklahoma House Speaker Jeff Hickman who has expressed support for restoring the funding, according toKathy McCracken, executive director of the state's Children's Hospital; Foundation. The foundation has been financially supporting the program through the Oklahoma University Child Study Center which set up the centers in 2007 in Norman, Oklahoma City, Tulsa and Mustang.
The state Department of Education has said it plans to cut the $600,000 annual base funding for the centers, an act that would force them to close, McCracken said. The stateattibuted the cut tothe federal budget "sequester" whichcreated across-the-board reducations in funding support, she said.
The cut is particularly harsh for Oklahoma, one of only 16 states yet to require private insurers to covermedically necessary treatments, leaving parents fewoptions to affordintensive early intervention services for their children with autism.
"Oklahoma's children with autism and their families, who are currently enrolled, will lose an incredible opportunity to learn and grow to be productive citizens," McCracken said. "Current parents in the program will become desperate for help, some will move to other states.Parents on the waiting list will know there is no help in the future for them in Oklahoma."
In addition, she said, "Oklahoma will lose a nationally recognized research program which has created jobs for new researchers, and Oklahoma may lose these talented scientists to other states."
The four centersintegrate toddlers and preschoolers with autism and their peers in community daycareand "mother's day out" programs, offeringhome-based and center-based specialized services needed by children with autism.More than32 children withautismunder the age of 4 have completed the intervention and at least that many are currently receiving services in these “model” pre-school centers," McCracken said.
The centersemploy 28 teachers who work directly with the children, she said.In addition,a team of specialistshelps traineducators and other professionalsacross Oklahoma.
"Andyes, there is a waiting list of children and teachers wanting to participate," McCracken said.
More Senate, House cosponsors sign on to bill
WASHINGTON, DC (March 28, 2014) --Responding to yesterday's release ofthe new 1 in 68 autism prevalence estimate, Congressional leaders said the ABLE Act must bepart of a national plan to address the public health crisis of autism. Four more House members signed on as cosponsors to the bill, raising the total to 351, while Sen. James Inhofe (R-OK) became the 70th Senator to become a cosponsor.
Sponsored by Sen. Robert Casey (D-PA) [left]and Rep. Ander Crenshaw (R-FL), the Achieving a Better Life Experience (ABLE) Act, would allow the creation of tax-exempt savings accounts for individuals with disabilities. The funds could be used for housing, transportation, job support, education and other services without jeopardizing eligibility for Social Security or Medicaid benefits.
"These alarming statistics underscore the need to address the long term needs of families caring for those with autism," said Casey. "Parents of children with disabilities face daily struggles that we can't even begin to imagine. The ABLE Act will provide families with the financial peace of mind they need, and Congress should pass it immediately.”
At an Autism Speaks press conference, Casey noted the overwhelmingnumber of cosponsors and said President Obama was supportive when he raised the issue.He credited Senator Richard Burr (R-NC) with raising the issue with Senate Minority Leader Mitch McConnell (R-KY). McConnell signed on as a cosponsor and within hours Senate Majority Leader Harry Reid (D-NV) signed on as well.
Casey credited the advocacyof Autism Speaks, which is part of a national coalition with the National Down Syndrome Society,for building support.
"I'm not sure anything else in the Senate has that many cosponsors," he said. "That's because of a really unified effort led by Autism Speaks."
Crenshaw said theCDC announcement"further underscores the need for Congress to take up and pass the ABLE Act to provide individuals with disabilities with the financial planning tools they need and deserve. Those living with autism, Down syndrome, and other disabilities face enormous financial difficulties, yet they cannot benefit from the same IRS-sanctioned tools that other Americans enjoy to use in planning for their future."
Burr said, "Children and adults with autism face enormous daily challenges, and it is important that we do what we can to support these individuals and their families as they deal with the day-to-day struggles presented by autism spectrum disorders. That's why SenatorCasey and I introduced the ABLE Act."
Federal, state leaders from both parties respond to new CDC prevalence numbers
WASHINGTON, DC (March 28, 2014) -- Members of Congress and state governors are demanding a concerted national response to autism in America following yesterday's release of new autism prevalence numbers by the Centers for Disease Control and Prevention (CDC).
"Today's announcement by the CDC highlights not only the very real, lived experience of families affected by autism, it also speaks to the need for a national strategy to address this issue," said House Majority Leader Eric Cantor(R-VA). "I stand with the autism community today and look forward to working with my colleagues on both sides of the aisle to respond to this urgent public health crisis."
During a press conference hosted by Autism Speaks following the CDC announcement, Senate and House leaders called for the reauthorization of the Combating Autism Act (CAA) and enactment of the ABLE Act to help address the "aging-out"issue as an estimated 500,000 children mature into adulthood over the next 10 years.
Enacted in 2006 and reauthorized in 2011, the CAA has dedicated $1.7 billion in federal funding for research through the National Institutes of Health, the prevalence monitoring conducted by the CDC, and detection training through the US Department of Health and Human Services. The law will expire September 30 unless Congress acts.
The ABLE Act, (Achieving a Better Life Experience Act), would allow the creation of tax-free savings accounts for individuals with disabilities to provide for their housing, transportation, job support, education and other needs. The legislation has extraordinary support with 70 cosponsors in the Senate and 350 of the 435 House members.
"To my mind, it's a clarion call to continue -- in fact increase -- our efforts on the federal level into research and services and support for individuals with autism and their families," said Sen. Robert Menendez (D-NJ), the Senate sponsor of the 2011 CAA reauthorization, during the Autism Speaks press conference.
"I hope we can think aboutat least creating some new opportunities" in the new CAA reauthorization legislation, Menendez said. "This aging out question is a critical question for families across (New Jersey) and across the country. The challenge on the autism disorder spectrum doesn't stop at age 18 or 21. It continues."
The House sponsor of the 2011 reauthorization bill, Rep. Chris Smith (R-NJ), also demanded action
"The information is not just disturbing, it is numbing," Smith said."Statisticsare sometimes bandied aroundWashingtonand people pay scant notice to it. Butthis ought to mobilize not just the federal government,but state governments and local governments to work in partnership."
Smith also addressed the aging out issue.
"As aging parents can no longer take care of their children and are worried they don't have that many years left on earth, they are frightened about what happens to their beloved child," he said. "We need the aging out issue to be addressed and we need it now."
Sen. Robert Casey (D-PA), the Senate sponsor of ABLE, said the response to the legislation is universally supportive in Washington, including President Obama. He credited Senator Richard Burr (R-NC) with raising the issue with Senate Minority Leader Mitch McConnell (R-KY). McConnell signed on as a cosponsor and within hours Senate Majority Leader Harry Reid (D-NV) signed on as well.
"So now you have the leaders in the Senate both cosponsoring a bill, that almost never happens," Casey said.
In addition to Menendez, Smith and Casey, Sen. Ed Markey (D-MA) and Rep. Pat Meehan (R-PA) attended the Autism Speaks press conference.
The chairs of the Democrat and Republican Governors Conferences, Democrat Pete Shumlin of Vermont and Republican Chris Christie of New Jersey, also issued statements.
"The numbers on the prevalence of autism released today by the (CDC)are another reminder of the great responsibility and urgent opportunity America's governors have to advocate for the autism community," Shumlin said.
“As government leaders, we have a moral obligation to recognize the individual and unique needs of our residents who have a developmental disability and provide them with the tools necessary to lead fuller, more productive lives," Christie said.
For statements from Senators Menendez, Burr, Casey, Kirsten Gillibrand (D-NY), Marco Rubio (R-FL), Charles Schumer(D-NY) and Tammy Baldwin (D-WI), go HERE.
For statements from Reps. Cantor, Smith, Mike Doyle (D-PA), Cathy McMorris Rodger (R-WA), Ander Crenshaw (R-FL) and Steve Stivers (R-OH), go HERE.
For statements from Governors Pete Shumlin of Vermont and Chris Christie of New Jersey, go HERE.
Governors respond to new autism prevalence numbers
(March 28, 2014) -- State leaders issued the following statements in response to the new autism prevalence estimates made by the Centers of Disease Control and Prevention. (Statements from U.S. Senate members are here; U.S. House of Representatives here.)
Vermont Governor Pete Shumlin
(Signed one of nation's strongest autism insurance reform bills into law; chair Democratic Governors Association)
"The numbers on the prevalence of autism released today by the Center for Disease Control are another reminder of the greatresponsibility and urgent opportunity America'sgovernors have to advocate for the autismcommunity.Istand with them today and look forward toworking with governors in statesacrossthecountrytorespondto this urgent public health crisis."
New Jersey Governor Chris Christie
(Presides over state with nation's highest autism prevalence; chair Republican Governors Association)
“As government leaders, we have a moral obligation to recognize the individual and unique needs of our residents who have a developmental disability and provide them with the tools necessary to lead fuller, more productive lives. That said, New Jersey has one of the best systems in the nation for identifying, diagnosing and caring for children and adults with Autism Spectrum Disorders (ASD). My Administration remains firmly committed to continuing our efforts to find new and innovative ways that help New Jersey families impacted by ASD and improving the lives of their loved ones.”
Members of the U.S. House of Representatives respond to new autism prevalence numbers
WASHINGTON, DC (March 27, 2014) -- Members of the U.S. House of Representatives issued the following statements today in responseto the new autism prevalence estimatesmade by the Centers of Disease Control and Prevention. (Statements from Senate members are here.)
Rep. Chris Smith (R-NJ):
(House sponsor of the 2011 Combating Autism Reauthorization Act; co-chair of the Congressional Autism Caucus)
“The continued increase in children affected by autism—a 30 percent rise from previous figures—shows the magnitude of the problem. It's alarming. We have to continue the work to determine the cause of ASD, identify autistic children as early as possible to begin treatment, and press ahead with research, new therapies and effective services. The quality of life of many children is at stake, as it is with young adults who age out of the support services in educational systems.”
Rep. Mike Doyle (D-PA):
(Co-chair of the Congressional Autism Caucus)
“The CDC results are more evidence, if any is necessary, that the prevalence of Autism Spectrum Disorders is greater than we thought just a few years ago. These results emphasize just how essential it is that the federal government increase our investments in research on autism spectrum disorders – along with services to diagnose and treat individuals with autism and help them and their families.”
Rep. Cathy McMorris Rodgers (R-WA)
(Chair of the House Republican Conference; special needs parent)
“As the mom of a 6-year old son with Down syndrome, I know firsthand the challenges those with disabilities – and their families – face. When our son Cole was diagnosed with Down syndrome – just three days after he was born – the doctors informed us his life would be full of medical complications. They focused on his limits, not on his abilities. Years later, as an advocate for the disability community and a proud supporter of the Achieving a Better Life Experience (ABLE) Act, I am confident we can expand long-term opportunities for those with disabilities. The prevalence of Autism very much concerns me, which is why I will continue to make sure those with special needs can help save for their futures and have endless opportunities to reach their full potential.”
Rep. Ander Crenshaw (R-FL)
(House sponsor of the ABLE Act which would allow tax-exemopt savings accounts for people with disabilities)
“The increase in the prevalence of autism in children announced by the CDC further underscores the need for Congress to take up and pass the ABLE Act to provide individuals with disabilities with the financial planning tools they need and deserve. Those living with autism, Down syndrome, and other disabilities face enormous financial difficulties, yet they cannot benefit from the same IRS-sanctioned tools that other Americans enjoy to use in planning for their future.ABLE opens the door for them to live their lives to their highest potential by making tax-free savings accounts available to cover qualified expenses in areas such as education, housing, medical, and transportation.ABLE is about leveling the playing field for all those who live with disabilities, and the time is now to turn this legislation into law.”
Rep. Steve Stivers (R-OH)
(Champion of improved TRICARE coverage for military kids with autism)
“Today's announcement by the CDC highlights not only the everyday experience of families affected by autism, it also addresses the need for a national plan to tackle this issue. With the release of data today, I look forward tocontinuing my efforts to work with mycolleagues on an actionable response tothis health crisis."
Official statements issued in reponse to new prevalence numbers
WASHINGTON, DC (March 27, 2014) -- Members of the U.S. Senate today issued the following statements in response to the new autism prevalence numbers issued by the Centers for Disease Control and Prevention. (Statements from House members are here.)
Senator Robert Menendez (D-NJ)
(Senate sponsor of the 2011 Combating Autism Reauthorization Act)
“This newly released data should serve as a clarion call to not just continue – but to increase – our efforts on the federal level into research and services and supports for individuals with autism and their families.We must pass our Combating Autism Reauthorization which is the only way to ensure critical autism programs aren't shuttered, leaving individuals with autism and their families wondering what could have been -- what new diagnostic tools, early intervention techniques, therapies and lifelong supports and services could have been discovered to improve lives and ensure individuals with autism can fulfill their God-given potential.“
Senator Richard Burr (R-NC)
(A critical early cosponsor of the 2011 Combating Autism Reauthorization Act and the ABLE Act)
“Today's news on the prevalence of autism is substantially worse than we ever thought. Children and adults with autism face enormous daily challenges, and it is important that we dowhatwe can tosupport these individuals and their families as they deal with the day-to-day struggles presented by autism spectrum disorders. That's why Senator (Robert) Casey and I introduced the ABLE Act. It would allow families to use a 529 college savings account to save for ‘disability expenses' – such as housing, education and medical expenses -- for a disabled child, including children living with autism.”
Senator Robert Casey (D-PA)
(Lead Senate sponsor of the ABLE Act which would create tax-free savings accounts for people with disabilities)
"These alarming statistics underscore the need to address the long term needs of families caring for those with autism. Parents of children with disabilities face daily struggles that we can't even begin to imagine. The ABLE Act will provide families with the financial peace of mind they need, and Congress should pass it immediately.”
Senator Kirsten Gillibrand (D-NY)
(Senate champion of improved care for military kids with autism under TRICARE)
“The rate in which autism is increasing is alarming,” said U.S. Senator Kirsten Gillibrand. “It is vital that we make investments in new research that will benefit the lives of millions. We know that early intervention is one of the best ways to ensure a child's long term success, but thousands of families simply cannot afford the cost of treatment and programs needed to help those with autism. I will continue to push for legislation that will help provide essential services, treatment and support for families.
Senator Tammy Baldwin (D-WI)
(Member of the Congressional Autism Caucus)
“I am a strong supporter of investing in medical research to help improve treatments, as well as increasing education surrounding serious diseases like autism. In 2013, Sequestration cut $18.9 million in federal funding for autism programs, which has disproportionately harmed American families across the country. To help individuals with autism and their families, I will continue my fight to protect funding for the NIH, CDC, and other health programs. Smart and strong investments in research, treatments, and services is critical to address the public health emergency posed by autism spectrum disorders.”
VP Jamitha Fields testifies on Capitol Hill
WASHINGTON, DC (March 25, 2014) -- Testifying before a Congressional panel today, Autism Speaks' Vice President for Community Affairs Jamitha Fields, urged our nation's leaders to do more for people affected by autism in the African American and Latino communities.
Effective tools have been developed for screening children for autism risk as early as one year, yet the average age of diagnosis is four-to-five years, Fields said, referencing data from the national Centers for Disease Control and Prevention (CDC).
"The situation in some ethnic and low income communities is even more troubling," Fields said. "Multiple studies have shown that black and Latino children are under identified, diagnosed significantly later, and once diagnosed, they receive poorer quality of care."
Fields testified before a House Appropriations Committee panel weighing budget issues relating to health, human services and labor issues.
She highlighted the Early Access to Care partnership between Autism Speaks, the CDC, the American Academy of Pediatrics and others toraise awareness and reverse the disparities in the diagnosis and treatment of autism among Latinos and African Americans.
"Improving this unacceptable situation will take the combined efforts of public and private partners including families, healthcare professionals, educators, autism advocates in every community and leaders like all of you who can help focus public attention on issues like this," Fields said.
"The earlier children are identified, the earlier they are able to receive early intervention services," she added. "Evidence-based early intervention services have been shown to reduce the core symptoms of autism; improve IQ and daily functioning; and reduce the cost of lifelong care by two-thirds. Considering the cost of autism over the lifespan is estimated at $2.3 million, those are significant savings."
Read her full testimony here.
In rare step, Senate's top 2 leaders cosponsor major disabilities legislation
WASHINGTON, DC (March 25, 2014) -- The Senate's top twoleaders--Majority Leader Harry Reid (D-NV) and Minority LeaderMitch McConnell (R-KY)--have signedon as cosponsors ofthe ABLE Act, a virtual green light forefforts in Congress to create tax-free savings accounts for Americans with disabilities.
Theaction was doubly unusual in that members of Congress serving in leadership positions rarely sign on to sponsor or cosponsor individual pieces of legislation. Within hours, both Reid [below left], the Senate's top Democrat, and McConnell, the chamber's top Republican, cosponsored S.313, the Achieving a Better Life Experience (ABLE) Act, which is a top priority of disability organizations nationally, including Autism Speaks.
"This is a dramatic and joyous development in the years-long campaign to get this bill out of Congress," saidAutism Speaks President Liz Feld. "We commend Senators Reid and McConnell for their leadership and look forward to expeditious passage of this critical legislation."
Sponsored by Senators Robert Casey (D-PA) and Richard Burr (R-NC), ABLEwouldallow the creation of tax-exempt savings accounts to help provide forhousing, educational, job support, transportation and other needs of people with disabilities. The Senate bill now has 68 cosponsors; a companion House bill sponsored by Rep. Ander Crenshaw (R-FL) has 345 cosponsors in the 435-member House of Representatives.
Casey and Burr announced the addition of Reid and McConnell as cosponsors in a joint release.
In 1996, McConnellhelped lead the bipartisan campaign that created section 529 tax-free college savings accounts, which serves as the model for the ABLE bill. In addition, he credited advocacy by Autism Speaks' Kentucky coordinator, Anne Gregory of Louisville, for encouraging him to sign on to ABLE.
“I have heard from many parents across Kentucky who have children with disabilities who find it difficult to encourage their independence and save money for the future,”McConnell said. “I proudly support the ABLE Act on behalf of the Kentucky families, children, and individuals living with disabilities, and I look forward to working with Kentucky families and organizations to help get this legislation through the Senate.”
Autism Speaks is one of 50 disability groups that is championing the bill. The New York Times in a recent editorial urged Congress to move the bill which is currently being "scored" by the Congressional Budget Office to assess its cost impact on the federal budget.
“I am so pleased to learn that Senator McConnell is co-sponsoring this criticallegislation benefiting families affected by autism and other disabilities," said Gregory of Autism Speaks. "A family can save tax-free college funds for their children under a 529 plan; it isonly equitable they should be able to do the same for the life-long expenses of their loved ones with disabilities, which typically far exceed the average college tuition."
Thousands receiving treatments, cost impact is 0.2%
(March 21, 2014) --Missouri Department of Insurance Director John M. Huff said over 3,000 individuals accessed autism-related treatment in 2013 because of the state's autism insurance reform law, a 22 percent increase over 2012.
"Missouri's landmark autism insurance law continues to deliver benefits for families impacted by autism,"Huff said in an address to the St. Louis Autism Partners. "Especially encouraging is the low impact these benefits have had on overall health claim costs. I again applaud Gov. Jay Nixon and members of the General Assembly for passing this common-sense legislation to improve health care for thousands of Missouri familes."
Huff noted that thedepartment's annualAutism Reportfound thatinsurance claims for autism-related treatments totaled $8.2 million in 2013, representing 2/10 of 1 percentof the more than $4 billion in health claims paid by Missouri health insurers. Although Missouri law does not require health insurers to submit their rates to the state,Huff said theclaims data suggest minimal, if any, impact on the premiums consumers pay.
Nixon signed the 2010 law which requires state-regulated health plansto cover specific autism therapies, including applied behavior analysis (ABA). Thereportfound autism treatments have increased more than 92 percent since 2011.
Otherfindings from the report include:
- Across all market segments, the average per member, per month cost in 2013 for all autism-related claims was 48 cents, and22 cents for ABA treatments
- More than 1.3 million individuals received coverage from a licensed insurer. Adding public employees and other self-insured entities, the department estimates that as many as 1.6 million individuals have benefited from the autism mandate
- All policyholders in the large- and small-group markets now have insurance coverage for autism
- The law allows insurers in the individual market to offer extra coverage for autism for an additional cost. Some companies offer it as a standard provision in every policy. As a result, about one-third of consumers enrolled in the individual market have this coverage.
The Department of Insurance offers online resourcesfor families and health care providers. Consumers and providers with complaints or questions are encouraged to call the department's Insurance Consumer Hotline at 800-726-7390 orfile a complaintat insurance.mo.gov.
St. Louis Autism Partners is composed of executive directors of autism organizations in theSt. Louis metro area.
Compromise bill requiring up to 25 hours per week of ABA goes to Senate
TOPEKA (March 20, 2014) -- The Kansas House of Representatives approved a compromise autism insurance reform bill 125-0 and sent the measure to the Senate.Sponsored by Rep. John Rubin (R-Shawnee) below, the bill, HB.2744, was amended to increase required weekly coverage for applied behavior analysis (ABA) from10 hours to 25 hours.
The legislation is the latest attempt to expand Kansas' 2010 autism insurance reform law which now applies only to state employees. As amended, the bill would require state-regulated large group and individual health plans tocover autism treatment for children up to the age of 12. The 25-hour per weekrequirement for ABA would apply to the first four years following diagnosis then diminish to 520 hours per year afterwards.
During debate on the bill, Rep. Scott Schwab of Olathe said he opposes mandates and thathe was averse to"dealing with other people's health insurance." Schwab is chairman of the House Insurance Committee.
Rubin, as reported by The Wichita Eagle, suggested thatany lawmaker who opposes mandates should find other work.
“In case you haven't noticed, virtually everything we do up here is a mandate. ... We're in the mandate business,” Rubin said. “Hopefully, we can improve the lives of these kids.”
Bill requiring benefits up to age 10 goes to House
(March 19, 2014) -- The Maine Senate has approved a bill requiring state-regulated health plans to cover autism benefits up to age 10 and sent the bill to the House. Maine's 2010 autism insurance reform law currently caps benefits atage 5.
Sponsored by Sen. Colleen Lachowicz (D-Kennebec), the bill, LD.347, originally would have raised the age of eligibilty for benefits from 5 under current law to 21, but was amended to age 10 in committee.
The current Maine law took effect in 2011 and requires state-regulated health plans to cover the diagnosis and treatment of autism through age 5. The coverage includes speech, occupational and physical therapy, as well as behavioral health treatment, such as ABA, up to $36,000 per year.
Maine was the 16th of the current 34 states to enact autism insurance reform. Three other states--Vermont, Louisiana and Texas (twice)--have amended their original laws to raise the age cap.
Bill would allow tax-exempt savings for adult needs of persons with disabilities
NEW YORK (March 14, 2014) -- The New York Times today urged Congress in an editorial to get moving on the ABLE Act, a proposal to create tax-exempt savings accounts for people with disabilities, noting that three-quarters of the House of Representatives and two-thirds of the Senate have signed on as cosponsors.
"Back in the old days, when Congress did crazy things like pass legislation, a sensible bill like the ABLE Act might have sailed to the president's desk," The Times editorialized. "But today, even with a long list of positives — it's a good idea, solves a pressing problem and has lots of bipartisan support — it's not a slam dunk, because there's always a way in Washington to squelch good ideas, especially those that involve tweaking the tax code and spending a little money."
Sponsored in the House by Rep. Ander Crenshaw (R-FL) and the Senate by Sen. Bob Casey (D-PA),ABLE(the Achieving a Better Life Experience Act)would authorize the creation of tax-exempt Section 529 accountsfor persons with disabilities to provide for their adult housing, transportation,job support and other needs. More than 50 disabilities groups, includingAutism Speaks, have spent years rallying support for the bill.
The Congressional Budget Office is now "scoring" the bill to assess its cost impact on the federal budget. The House version, HR.647, has 345 cosponsors; the Senate bill, S.313, has 67 cosponsors.See the full list of cosponsors here.
Measure would allocate $126 million over 10 years for pediatric research
WASHINGTON, DC (March 13, 2014) -- The Senate by unanimous consent has approved theGabriella Miller Kids First Research Act providing $126 million over 10 years to the National Institutes of Health (NIH)for research on pediatric conditions, including autism. The bill goes to President Obama for his signature.
Announcedby House Majority Leader Eric Cantor (R-VA) lastyear on World Autism Awareness Day, the measure picked up bipartisan sponsorship in the Senate led by Virginia's Democratic Senators Mark Warner and Tim Kaine, and Utah Republican, Sen. Orrin Hatch. The bill (HR.2019) was named in honor of Gabriella Miller [left], a 10-year-old Virginia girl who died last October following an 11-month battle with an inoperable brain tumor. Over 100 advocacy groups, including Autism Speaks,endorsed the bill.
The bill would eliminate public funding for the presidential nominating conventions and redirect the fundingto the NIH for pediatric research. About $12.6 million a year would be made available.
"Autism Speaks commends Leader Cantor for forging this bipartisan commitment to funding research for autism and pediatric conditions," said Autism Speaks President Liz Feld. "This shows sound leadership and sets an important example about how to establish priorities in Congress."
“This bipartisan effort is about making sure pediatric disease research is a high priority,” said Kaine. "I applaud the leadership of my fellow Richmonder Eric Cantor in moving this bill through the House.”
Warner said he saw consensus thatpediatric research "should be a higher national priority.”
“Our children are our future, and furthering our efforts to fight against pediatric cancer and other diseases impacting our youth should be among our nation's top priorities," said Hatch. "I'm proud the House and Senate were able to come together in a bipartisan manner and pass this important bill, and I hope the President signs into law as soon as possible.”
New state regulations require minimum coverages
BALTIMORE (March 10, 2014) --A Marylandagency has directed many of the state's private health plans to start covering treatments for individualswith autism through age 18.The Maryland Insurance Administration(MIA) finalized regulations that willrequire insurers to cover at least 25 hours a week of habilitative care for children with autism aged 18 months through 5 years, and a minimum of 10 hours a week of therapy for ages 6 though 18.
The new regulations culminate years of work by the MIAto clarify how Maryland's habilitative care law applied to autism treatment. Rather than enact autism insurance reform legislation, the Maryland Legislature in 2012 directed the state agency to undertake the review and implement new regulations.
Autism Speaks worked closely with Pathfinders for Autism and other Maryland advocates to help shape the new regulations to require the best coverage.
Still remaining to be completed is the enactment of a newlicensing statute to regulate ABA providers. Bills have been introduced in the House by Delegate Kirill Reznik(HB.150) and in the Senate by Senator Katherine Klausmeier (SB.694).
To learn more, go here.
Measure moves to House
HONOLULU (March 7, 2014) -- The Hawai'i Senate voted 24-1 for SB.2054, an autism insurance reform bill, and sent the measure to the House. The first hearing is scheduled Wednesday before the House Health Committee.
Introduced by Senators Josh Green,Suzanne Chun Oakland and Russell Ruderman, the bill would require state-regulated health plans to coverthe screening, diagnosis and evidence-based treatment of autism up to age 21, including up to $50,000 for behavioral therapy. Lifetime benefits for behavioral health therapy, such as applied behavior analysis (ABA), would be capped at $300,000.
The bill is similar to a measure that passed both houses of the Legislature last year, but then failed to clear conference committee. In addition to Autism Speaks, the measure is supported by the Hawaii Medical Association, the Hawaii Disability Rights Center, and other groups.Opposition has been raised from theHawaii Medical Service Association and Hawaii Association of Health Plans.
In addition to behavioral health ABA treatment, the bill would require coverage for autism-related psychiatric, psychological, pharmaceutical and therapeutic care, such as speech, occupational and physical therapy.
Hawaii is one of 16remaining states yet to require state-regulated health plans to cover essential autism treatments and services.
Senate President Steinberg suggests possibility of funding Medi-Cal coverage
SACRAMENTO (March 5, 2014) --The leader of the California Senate has raised the possibility of funding coverage for applied behavior analysis (ABA) for autism through Medi-Cal, the state's Medicaid program.
Senate President pro Tem Darrell Steinberg raised theMedicaid funding issue at the conclusion of a hearingby the Senate Select Committee on Autism & Related Disorders on the effectiveness of SB.946, the state's 2011 autism insurance reform law.Steinberg, who authored the law, said the law on balance has been a "tremendous success."
"The next step, of course, is extending (applied behavior analysis) therapy to families who are on Medi-Cal," Steinberg said, according to California Healthline. "It's equal protection. If it's good for some kids, then why isn't it good for all kids?
"It's an issue of money, and we intend to take that up during the budget session," Steinberg said. "We ain't done yet. There's one more budget cycle."
Last year, the Legislature and Governor Jerry Brown failedto reach a funding agreement to continue autism therapies for 900,000 children who transitioned out of the Healthy Families Programinto Medi-Cal. The transition was supposed to have resulted in no loss of services, but instead many families said their children lost access to ABA once in Medi-Cal.
KXTV-10,Sacramento's ABA affiliate station, reported on the hearing:
Jon Owen with Utah Autism Coalition makes case for SB.57
SALT LAKE CITY (March3, 2014) -- The Salt Lake Tribune conducted a live webchat on two autism insurance bills before the Legislature featuring reporter Kirsten Stewart, Jon Owen, president of the Utah Autism Coalition, Rep. Ronda Menlove and Kelly Atkinson, executive director of the Utah Health Insurance Association.
Menlove is sponsoring HB.88, which would makea pilot state program that serves 300 children with autism permanent. Menlove has said the program would address about 10 percent of the state's need.
Owen said his group supports SB.57, sponsored by Sen. Brian Shiozawa, which would require state-regulated health insurers to cover medically necessary treatments for autism, including applied behavior analysis (ABA). Owen said the bill, which passed the Senate last week, would complement Menlove's initiative by enabling families with insurance to use those benefits rather than join in the competition for benefitsprovided through the pilot program.
State with highest autism prevalence in the nation moves step closer to requiring treatments
SALT LAKE CITY (February 28, 2014) -- The Utah Senate has approved SB.57,thefurthest an autism insurance reform bill has progressed in the state Legislature since efforts began in 2009. Utah has the highest prevalence of autism in the nation at 1 in 47, yet is one of of only 16 states not to require private insurers to cover medically necessary treatments.
The vote was 18-7.
"Autism Speaks commends Senator Brian Shiozawa [left] for his leadership in steering this urgently needed legislation through the Utah Senate," said Mike Wasmer, Autism Speaks' associate director of state government affairs. "We join with the Utah Autism Coalition and the state's autism community in urging the House to now do what's right and pass this bill."
Shiozawa's bill would require state-regulated health plansto coverspeech, occupational and physical therapy, psychological and psychiatric care, and behavioral health treatments, including applied behavior analysis (ABA).Behavioral health treatment benefits would be capped annually at $36,000 throughage 9 and $18,000 from ages 9 through 18.
During debate on the bill Thursday, Shiozawa said autism is "in epidemic proportions, the insurance companies themselves say that autism is in epidemic proportions in the state of Utah. They acknowledge that this is a real condition, they also acknowledge that there is a best therapy for this.
"We're asking that they simply cover this condition," Shiozawa said.By supporting the bill, Shiozawa told his colleagues, "You give the children and their families, the thousands of children in the state of Utah a voice, a voice to be heard by the insurance companies, a voice that says to them we faithfully pay our premiums, please cover our condition."
Shiozawa said he had attempted to craft a workable bill by working with two major Utah insurers.
"I have gone to their offices, I have sat down with them, I have offered that we will do whatever we need to do to negotiate on this, on dates of services, on the ages, on the caps," he said. "Make this your bill, this is your opportunity. And their response is, no, we're going to fight this and we're not going to pay for this."
Senator Scott Jenkins of Plain City spoke against the bill, calling it a form of socializing costs. "This is making it a mandate for the insurance companies to cover their insured," he complained.
However, Senator Todd Weiler from Woods Cross said the autism debate had changed his views on insurance after a constituent explained how his son with autism was initially denied coverage for a broken arm.
"The insurance company denied the bill using as an excuse the child had been diagnosed with autism and that the broken arm most likely was caused because the child was autistic," Weiler said."That is discrimination. And if that's how insurance companies are going to treat children in my district, that's going to change my opinion about insurance mandates."
Senator Deidre Henderson of Spanish Fork said the insurance lobby had indicated that the billing was later resolved after an investigation determined the original denial was the result of a "miscode." She voted against the legislation.
Senator Karen Mayne, a retired para-educator from West Valley City, said when she began her career, no more than one or two children in the school had autism."When I left we had just about one in every class...This is an epidemic, this is divorce city, this is crisis city and there is only so much energy in a family and it does more than harm the child, it harms the family, it harmssociety."
Agency shows progress made under Combating Autism Act
WASHINGTON, DC (February 28, 2014) -- The U.S. Department of Health and Human Services (HHS) has reported to Congress on how funding dedicated to autism research and services under the Combating Autism Act (CAA) has been allocated and theprogress that has been achieved under the law.
"Since the enactment of the Combating Autism Act in 2006, and its reauthorization under the Combating Autism Reauthorization Act of 2011, federal agencies, in partnership with the community, have made significant strides in addressing many of the pressing needs of individuals and families affected by autism spectrum disorder,"HHS reported.
The 2011 law dedicated $231 million a year in federal funding for autism research and services through September of this year to HHS, allocated primarily to the National Institutes of Health, the Centers for Disease Control and Prevention, and the Health Resources and Services Administration.
"Autism Speaks is actively working with our champions in Congress to reauthorize the CAA before September 30, and we will again demand this accountability over how federal dollars are spent on autism activities," said Liz Feld, president of Autism Speaks. "Progress has been gained in our understanding and treatment of autism, but much more needs to be done. The law should continue to provide structure and transparency for the most efficient and effective use of federal dollars.
"Autism Speaks has provided nearly $200 million for autism research and is funding breakthrough science that can make a difference for our community," she said, "but autism is an issue that covers the lifespan and we need a national strategy now to meet the employment, housing and community integration needs of all those affected.
"But we can't do this alone. We need a strong federal partner to address what is a national epidemic."
Among the advances cited by HHS between 2010 and 2013 were:
- the new prevalence estimate of 1 in 88 children, along with a finding that more children are being diagnosed by age 3, creating critical opportunities forearly intervention
- expanded outreach to underserved populations to access diagnoses
- new findings on risk factors, including environmental risk factors such as nutrients, air pollutants, pesticides, and paternal age
- studies of conditions that often co-occur with ASD, such as gastrointestinal disorders, sleep disruptions, and epilepsy, are contributing to intervention strategies
- efforts to develop and evaluate educational interventions, as well as provide guidance for schools on how to make school environments safe and conducive to learning for students with disabilities
"While the collaborative efforts of federal and state agencies and community partners have resulted in many research advances and improvements in services over the pastseven years, all acknowledge the growing needs of the community and the work that remains to be done,"HHS concluded. "Continued collaborative efforts between the public and private sectors will be essential to drive the innovations that will lead to improved identification, interventions, services, and policies that will enhance the lives of people with ASD and their families."
Measure would provide coverage through age 6
ATLANTA (February 25, 2014) -- The Georgia Senatevoted unanimously fora compromise autism insurance bill after hearing several lawmakers, some in tears and onequoting fromthe Gettysburg Address, argue for passage of the bill. It goes now to the House of Representatives.
Sponsored by Senator Tim Golden of Valdosta, the chair of the Senate Insurance Committee, the bill, SB.397, would require state-regulated health plans to cover the screening, diagnosis and treatment of autism through age six. Coverage of applied behavior analysis (ABA) treatment would be covered up to $35,000 a year.
"This is a finely crafted bill," said Golden. "If it is to have any chance at all (in the House), it needs to come out of the Senate with no changes."
Several speakers credited Lt. Gov. Casey Cagle for breaking an impasse in the Senate by helping to broker the new bill. Cagle spoke for the bill before the Insurance Committee last week, the first time he has ever appeared beforea legislative committee.
The Senate voted 51-0 for the bill, whichisa newcompromise version ofAva's Law. Sen. John Albers, the sponsor of the original Ava's Law bill, spoke in favor of the compromise version.
"This is a great day for Georgia," said Albers. "This helps children,it helps people with specialneeds and it saves the state money, allat the same time. If you every voted for a bill like that, I would like to know what it is."
Ava's Law was named after Ava Bullard of Lyons, whose mother Anna has helped rally advocates around the state for better insurance. Her uncle, Senator Tommie Williams, spoke passionately for the bill on the Senate floor and took on the National Federation of Independent Business, a lobbying arm for small businesses.
"I own five businesses and I've started other businesses that failed," Williams said. "When I buy something I'm not just interested in the lowest price, I'm interested in quality at the best price.
"That's what they (NFIB) should be doing for me as a small businessman, and not just saying every mandate is bad."
Bill moves to Senate with no caps on age, visits, or dollars
PIERRE, SD (February 24, 2014) -- The South Dakota House of Representatives yesterday approved an autism insurance reform bill 57-12 and sent the measure to the Senate. As amended by a House committeee, the bill, HB.1257,sets no dollar or visit caps on treatments, or age limits forreceiving treatment, which includes applied behavior analysis (ABA).
Rep. Scott Munsterman, the chair of the House Health and Human Services Committee, said the bill would apply to health plans covering 60,000 to 90,000 South Dakotans. In response to criticisms the legislation would not cover more indviduals, he said it could be amended in the Senate to be broader.
Much of the floor debate on the bill involvedcriticisms of the insurance industry. In response to an industry claim that autism coverage would raise premiums as much as $7 per person per year, one Representative said, "$7 a year? That's peanuts, we blow that out our gas tank every day."
Rep. Scott Ecklund [left], a Sioux Falls physician, said the state has only two developmental pediatricians, both of whom practice inSioux Falls. One told him that ABA has over 30 years of evidence to support its use as a medical treatment for autism, but that without insurance coverage too few families can access the therapy for their children.
Ecklund went on to mock the insurance industry's complaints about mandates."As a physician, the insurance companies mandate me all the time with their requirements," he said.
Select Committee on Autism will focus on implementation
SACRAMENTO (February 21, 2014) -- California Senate President pro Tem Darrell Steinberg has scheduled a March 4 hearing to examine the impacts of the state's 2011 autism insurance reform law, including a review of how the Regional Centers have been affected.
The hearing before the Senate Select Committee on Autism & Related Disorders will take place at the State Capitol in Room 4203starting at 1:30 pm. A preliminary agenda is HERE.
Steinberg, who sponsored the 2011 law (SB.946), said the informational hearing will focus on four areas:
A significant portion of the hearing is expected to fous on the law's impact on the Regional Centers. Kristin Jacobson, representing the Alliance of California Autism Organizations, will present the findings of a statewide surveyof consumers conducted by the Autism Society.
Lt. Gov. Cagle attends hearing to support bill
ATLANTA (February 20, 2014) -- The Georgia Senate Insurance Committee yesterday unanimously approved a new autism insurance reform bill that had been introduced just hours earlier. During the hearing, Lt. Gov. Casey Cagle [below], making his first-ever appearanceat a committee meeting, offered support for the state's autism community.
Sponsored by Senate Insurance Committee Chairman Tim Golden, the new bill (SB.397) now moves to the Senate floor where a vote could come as early as Tuesday. The bill differs in a number of respects from Ava's Law (SB.191), requiring:
- Assessments, evaluations or tests by a licensed physician or licensed psychologist to diagnose whether an individual has an autism spectrum disorder
- Applied Behavior Analysis up to $35,000 per year provided or supervised by a BCBA
- Counseling services provided by a licensed psychiatrist, psychologist, clinical professional counselor or clinical social worker
- Therapy services provided by a licensed or certified speech therapist, occupational therapist or physical therapist
- Coverage throughage six
"Autism Speaks commends Lt. Gov. Cagle, Senator Golden and Senator Renee Unterman for persevering on this issue to find a workable bill," said Judith Ursitti, Autism Speaks' director fo state government affairs. "This is a bittersweet moment as the new bill would provide less coverage than Ava's Law, but this is an important first step as we continue to seek the best coverage for the most families."
Sen. John Albers, the sponsor of Ava's Law, urged advocates to support the new bill. Neither the Albers bill nor its House companion bill, sponsored byRep. Ben Harbin, have received committee hearings with time starting to run short in the current Georgia legislative session.
On Monday, the House approved Gov. Nathan Deal's proposed new state budget which would extend autism insurance coverage for state employees and teachers.
Committee votes unanimously to require coverage of autism treatment
PIERRE, SD (February 20, 2014) -- The South Dakota House Health and Human Services Committee today strengthened then unanimously approved HB.1257, the autism insurance reformbill, sending the measure to the House floor. The floor vote is expected early next week.
"Autism Speaks joins the South Dakota autism community in thanking Rep. Scott Munsterman [left], the committee chair, for moving the bill so quickly," said Mike Wasmer, Autism Speaks associate director of state government affairs. "Because of his leadership, the bill has also been significantly strengthened through his committee amendments which impose no age, dollar or visit limits."
The bill would require state-regulated health plans to cover the screening, diagnosis and treatment of autism. Covered treatments would include applied behavior analysis (ABA), psychiatric, psychologicaland pharmaceutical care, and speech, occupational and physical therapy.
South Dakota is one of just 16 remaining states yet to enact autism insurance reform, but is among a host of those states which are actively moving legislation to enact reform. Among its neighboring states, Minnesota, Montana and Iowa have enacted reform laws, and Nebraska advocates will kick off their 2014 campaign next Tuesday in Lincoln with Gov. Dave Heineman and state Senator Colby Coash.
Mike Wasmer explains why advocates should oppose HB.2704, support Rubin bill
TOPEKA (February 19, 2014) -- Autism Speaks is urging Kansas lawmakers to reject HB.2704, a bill introduced late last week in the House Insurance Committee and misrepresented as a "compromise" bill by its proponents. Neither the autism community nor Rep. John Rubin, the sponsor of HB.2531, have endorsed this new bill.Take action HERE to stop HB.2704 and move the Rubin bill instead!
Mike Wasmer, a Kansas resident and Autism Speaks associate director of state government affairs, explains why HB.2704 would be bad for Kansas:
For six years, parents of children with autism in Kansas have put their trust in their elected officials to do the right thing. Sadly, those in power in the Kansas legislature continue to ignore their constituents to the detriment of our most vulnerable citizens. HB. 2704 is just the latest in a series of bad jokes being played on the autism community of Kansas.Rather than improving access to medically necessary treatment for autism, HB.2704 proposes cutting existing autism services for state employees and offers a meaningless benefit to a mere fraction of the rest of us.
In response to public outcry over another year of political gamesmanship during the 2013 legislative session that prevented a hearing on the autism insurance bill, the Kansas City Star reported that “House Speaker Ray Merrick, who was accused of bottling up the autism bill this year, has vowed to push a bill through himself next session if the insurance industry won't compromise on the issue.”While Speaker Merrick promised to facilitate negotiations between autism advocates and the health insurance industry, these negotiations were not undertaken in good faith.
Hearing nothing from the Speaker's office regarding possible negotiations over the legislative interim, Representative John Rubin and 34 House co-sponsors filed HB.2531. The bill would preserve existing coverage for medically necessary treatment of autism provided under the 2010 state employees “pilot project” and extend that coverage to hundreds more children with autism covered by state-regulated health plans. The response? House leadership promptly sent a clear message that HB.2531 would not get a hearing and instead called a meeting between autism advocates and representatives from the health insurance lobby.
Before those discussions were complete, the insurance lobby filed HB.2704 in the House Insurance Committee. The committee chair, Representative Scott Schwab, has announced that HB 2704 is “the compromise bill.”HB 2704 is NOT a compromise between autism advocates and the insurance lobby
Autism advocates will not support a bill that cuts hard-won autism services for state employees.Autism advocates will not support a bill that imposes caps on services that would be among the lowest in the country, impeding the provision of medically necessary treatment.
Rather than supporting a bill that would help our children, autism advocates now find themselves in a position opposing a bill that would cut services for the lucky few who are covered by a State Employee Health Plan.Are Speaker Merrick and others in a position of leadership in the legislature punishing parents of children with autism for simply not going away?
The prevalence of autism has increased 1,000 fold in the past 40 years.According to the Centers for Disease Control at least 1 in every 88 children have autism.We are not going away, Mr. Speaker - there will be more of us every year.
Autism is treatable.Many of our children can lead independent, productive lives if provided access to medically necessary treatment. Continued opposition to meaningful autism insurance reform kills hope, robs futures and costs the State of Kansas millions of dollars in special education and taxpayer-funded adult disability services.
As mayor develops first budget, schoools funding urged for training, awareness
NEW YORK (February 14, 2014) -- Autism Speaks President Liz Feld today urged New York Mayor Bill DeBlasio to address the problem of wandering by children with autism as he prepares his first budget.
"Keeping our most vulnerable children safe is our first responsibility," said Feld. "One step towards that is providing sufficient support for programs to raise awareness and increase training in our public schools to address the problem of wandering by children with autism.
"In partnership with the National Center for Missing & Exploited Children, Autism Speaks is devoting tools and resources to educate the community, including school staff, to better protect our children across America," she added. "We look to Mayor Bill DeBlasio in crafting his first budget to devote sufficient resources to that task in New York City.”
To learn more about the Autism Speaks partnership with the National Center for Missing & Exploited Children go here
House panel hears from families, plans vote next week
PIERRE, SD (February 14, 2014) -- South Dakota families and autism advocatestestified beforea House committee yesterday of the financial struggles providing care forchildren with autism when their state does not require insurance companies to provide coverage.
The House Health and Human Services Committee will reconvene Tuesday to take action onHB.1257, a bill that would make South Dakota the 35th state to enactautism insurance reform.
"We have to find a solution for these families, because this is devastating to the families,"Rep. Manny Steele of Sioux Falls, a committee member, told KDLT-TV after the hearing. "The longer we wait on these autistic kids, the harder it will be to help them."
Autism Speaks has endorsed the bill whichwould require state-regulated health plans to cover therapies for individuals diagnosed with autism in locations including a provider's office, a clinic, or "in a setting conducive to the acquisition of the target skill." Treatments provided in schools would also be covered if they do not duplicate what services provided by the school.
Committee clears bill requiring coverage of ABA, basic therapies
SALT LAKE CITY (February 14, 2014) -- The 2014 Utah autism insurance reform bill is headed to the Senate floor following passage today by the Senate Business and Labor Committee on a 6-1 vote. Utah has the highest prevalence of autism in the nation, yet is one of only 16 remaining states yet to bar insurers from refusing to cover basic therapies on the basis of anautism diagnosis.
Sponsored by Sen. Brian Shiozawa, the bill, SB.57, would require state-regulated health plans to cover applied behavior analysis (ABA) treatment for autism up to $36,000 a year for children through age 8, then up to $18,000 a year though age 17. Thebill mirrors a coverage plan Salt Lake Mayor Ben McAdams proposed for county employees in his 2014 budget proposal.
In addition, coverage would be required forspeech, occupational and physical therapy, as well as pharmaceutical benefits.
Small businesses with fewer than 50 employees would be exempt from providing the coverage if they could demonstrate it raised the cost of their health plans by 2.5 percent or more. A new study in Missouri showed the impact of its autism insurance reform law during 2013 on total health care costs was 0.2 percent.
According to a 2012 Centers for Disease Control study, 1 in every 47 Utah children has autism, the highest rate in the nation and significantly higher than the 1 in 88 national average. The University of Utah calculated that between 2002-2008, autism prevalence increased twice as fast in Utah than nationally (157 percent versus 78 percent.)
The 2014 bill marks the third attempt in three years Utah legislators have taken on the issue. Jon Owen, president of the Utah Autism Coalition,relatesin a blog how his son Ben's autism diagnosisled to insurance claims getting rejected "for anything from well-child visits to a broken arm."
Andrea Griggs of Murray reported how paying the cost of just one year of ABA therapy for her son Jaxon forced her family to sell their homeand downsize to a house half the size. Her family's insurance also refused to cover treatment because of Jaxon's autism diagnosis.
Autism Awareness Rally at the Capitol will feature Sen. Coash
LINCOLN (February 13, 2014) -- An Autism Awareness Rally at the Nebraska capitol has been set for February 25 to kick offthis year'slegislative push for autism insurance reform.
The rally will feature Sen. Colby Coash [left], who introduced an insurance reform bill,LB-505, last year. The bill received ahearing in the Banking, Insurance and Commerce Committee, but was deferred for further action action until this year.Nebraska is nowone of just 16 remaining states yet to enact reform through legislation.
The rally is scheduled for Room 1023, located on the first floor of the west side of the capitol building between 9 and 11 am. In addition to Coash, speakers will include Mike Wasmer, Autism Speaks' associate director of state government affairs; Cathy Martinez, of the Autism Family Network, and; Melissa Schop, of the Autism Society of Nebraska. For more details, go here.
The Coash bill would require up to $70,000 a year in coverage for behavioral health treatment, such as Applied Behavior Analysis, for the first three years of treatment. The limit would be $20,000 annually thereafter until the age of 21.
Colorado, Kansas and Iowa are among the 34 states that already require some form of autism insurance coverage. Legislation is moving in Kansas to expand itslaw and a reform bill has begun moving through the South Dakota legislature.
Limited to federal contracts, the minimum hourly wage would rise to $10.10
WASHINGTON, DC (February 12, 2014) -- President Obama signed an executive order today raising the hourly minimum wage for federal contracts from $7.25 to $10.10,including for workers with disabilities.
The President was fulfilling a promise he made in his 2014 State of the Union address in signing the order, which affects only workers paid under federal contracts. An across-the-board minimum wage increase would require action by Congress.
"Under current law, workers whose productivity is affected because of their disabilities may be paid less than the wage paid to others doing the same job under certain specialized certificate programs," the White House said. "Under this Executive Order, all individuals working under service or concessions contracts with the federal government will be covered by the same $10.10 per hour minimum wage protections."
Among those workers with disabilities who could see a pay raise, the White House cited groundskeepers at military bases.
According to the White House statement, the Executive Order "will benefit hundreds of thousands of people working under contracts with the federal government who are making less than $10.10 an hour. It will also improve the value that taxpayers are getting from the federal government's investment.
"Studies show that boosting low wages will reduce turnover and absenteeism, while also boosting morale and improving the incentives for workers, leading to higher productivity overall," it said. "These gains improve the quality and efficiency of services provided to the government."
House of Representatives sends Senate a bill requiring autism coverages
JACKSON, MS (January 11, 2014) -- The Mississippi House of Representativesapproved an autism insurance reform billHB.542, sending it to the Senate by unanimous 120-0 vote.
"I feel we have done a good job educating the 120 members of the House," said Quess Hood [left] of Ripley, who has helped lead the grassroots campaign for the bill. "Now we wantthe opportunity to do thatwith the Senate. It's going to be hard to ignore such a strong message when we passed it unanimously.
"The resistancehas beenlegislators not being educated in what people go through with a child with autism," he said.
Thebill would require coverage of the screening, diagnosis and treatment, including applied behavior analysis (ABA), of autism for state employees and teachers. The legislation would take effect July 1 if enacted. The Mississippi State and School Employees Health Insurance Plan covers 31,000 enrollees.
"Autism Speaks thanks our bill sponsor, Rep. Steve Massengill, of Hickory Flat, and Rep. Charles Busby of Pascagoula, who led the vote on the House floor,"said Shelley Hendrix, Autism Speaks' director of grassroots advocacy. "We look forward to quick Senateconsiderationof our bill."
TheSenateversion of the bill, SB.2679, is sponsored Sen. Rita Potts Parkof Corinth.
In addition to ABA treatment, the bill would require coverage for autism-related psychiatric, psychological, pharmaceutical and therapeutic care, such as speech, occupational and physical therapy. The bill was amended in committee to assure that any pharmaceuticals used in treatment are approved by the Food and Drug Administration.The bills set no dollar caps or limits on visits.
Mississippi is one of four southern states considering autism insurance reform legislation this year. In Georgia,the state's autism insurance reform bill, Ava's Law, awaits a hearing in Senate committee.In Tennessee, legislative action is expected to kick off shortly, while the North Carolina Senate is expected this spring to take up an autism insurance reform bill that passed the House 105-7 last year.
Award Ceiling: $4,000
The Aspen Institute Program on Philanthropy and Social Innovation (PSI) in Washington, DC, offers the William Randolph Hearst Endowed Fellowship three times annually. The fellowship, which is based on academic excellence and need, is open to both undergraduate and graduate students of color. The Hearst Fellow serves as an intern with PSI in the Washington, DC office of the Aspen Institute. Through this fellowship, PSI seeks to introduce a diverse group of students to issues and challenges affecting philanthropy, social enterprise, nonprofit organizations, and other actors in the social sector. Recipients may arrange with their colleges or universities to receive academic credit for this experience.