Time is running out to register for the Association of Professional Behavior Analysts (APBA) 2nd Annual Convention in Tampa on April 12-14, which will offer informative sessions for both ABA practitioners and consumers. Autism Speaks is hosting an all-day pre-convention workshop on April 12, entitled “Implementation and Enforcement of Autism Insurance Reform.”
The workshop presenters will include Lorri Unumb, Esq., vice president of state government affairs and Judith Ursitti, director of state government affairs, along with Bryan Davey of ACCEL, Billy Edwards of Behavioral Innovations, Gina Green with APBA, and Dan Unumb, with South Carolina Legal Services.
To learn more about the Autism Speaks workshop, go here. To learn more about the APBA conference, go here. Early registration, including discounted hotel rates, ends March 23!
Hope and ideas are two things that always matter.
~ H. Jackson Brown, Jr.
by Judith Ursitti, Director, State Government Affairs
The 6th Annual Autism Law Summit convened this past weekend at a new location — the University of Utah’s Susan J. Quinney School of Law, but with the same underlying theme — the passage, implementation and enforcement of meaningful autism insurance reform across the nation. Lorri Unumb, Autism Speaks VP of State Government Affairs, facilitated the Summit, as she has for the past six years.
It’s worth noting that the Summit has evolved from an informal gathering of a handful of advocates passing around a hat to collect pizza money, to a capacity-level event, involving more than 100 registrants from 33 states. And once again, hope and ideas intersected with the blood, sweat and tears of parents, providers, lawyers, legislators and regulators, creating undeniable momentum in the effort to create a system where individuals diagnosed with an ASD can access coverage for the life-changing treatments they need.
A highlight of the event was the presentation of the 2011 “Speak Out” award to Lou Melgarejo for his YouTube video, “Fixing” Autism, which he produced in honor of his daughter Bianca and the difficulties faced by families in gaining insurance coverage for needed therapies.
Special guests, Utah Representative Merlynn Newbold and Professor Bonnie Mitchell from the S.J. Quinney College of Law, welcomed attendees prior to Lorri Unumb’s presentation,” Autism Insurance Reform Across America.” Honored as part of the presentation were the five states that passed legislation since the previous Summit: Arkansas, Virginia, West Virginia, Rhode Island and California.
Other highlights of the jam-packed agenda included:
· A “Politics 101” presentation by Missouri State Representative Jason Grill relating lessons learned from his experience in the Missouri legislature gaining passage of autism insurance reform
· A panel discussion on “Convincing Self-Funded Companies to Add an Autism Benefit.” The panel consisted of providers Bryan Davey, PhD, BCBA-D and Colleen Allen, PhD, CCC/SLP; employer representatives Doug Green of DTE Energy and Jeremy Shane of HealthCentral; as well as advocate Karen Fessel, Dr. PH (You can learn more about convincing your self-insured employer to add an autism benefit here.)
· An analysis of the provider credentialing issue by panelists Misty Bloom, JD of the Behavior Analyst Certification Board; Andrea Chait, PhD, BCBA-D, NCSP, and Jill McLaury, MS BCBA
· An update on litigation efforts against insurers provided by attorneys Dan Unumb, Ele Hamburger and Dave Honigman
· A presentation on implementation issues by panelists Billy Edwards, MS, BCBA, of Texas; Mike Wasmer of Kansas, and Amy Weinstock of Massachusetts sharing their experiences implementing autism insurance laws in their respective states
· A primer on developing successful grassroots advocacy at the state level to gain autism insurance reform by Shelley Hendrix, Autism Speaks, Director of Grassroots Development
· A robust discussion of “Enforcement of Coverage” by panelists Adam Cole, JD, General Counsel, California Department of Insurance; Jacqueline Eckert, MedClaims Liaison; Dan Unumb JD; and Angela Nelson, Director of Consumer Affairs, and Melissa Palmer, Legislative Director, from the Missouri Department of Insurance
· A mock legislative hearing on autism insurance reform, providing an opportunity for attendees to experience first-hand the challenges frequently experienced by advocates
· Insights by the Autism Speaks Government Relations team specific to grassroots development, communications, policy, implementation and enforcement
As attendees dispersed Sunday morning, heading back home to different parts of the country, smiles and hugs of encouragement were shared by colleagues old and new. Once again, the connection of hope and ideas had been sparked. Truly, 2012 is destined to be another year of hard-fought progress in the effort to ensure access to autism insurance coverage, step by step, state by state, plan by plan, family by family.
Special thanks to our sponsors: Utah Autism Coalition, Butterfly Effects, MedClaims Liaison and Autism Services Group.
This is a guest post by, Judith Ursitti, Regional Director State Advocacy Relations at Autism Speaks.
The message struck me as I tore off the page on my daily calendar. “If a miracle can happen at anytime, then why not today?” It was January 21st, the final day to file legislation in the Virginia House of Delegates for the 2011 session.
We had our champions in the Senate. Senator Janet Howell had been inspired by her grand nephew who had autism and had once again stepped up to lead the charge. Senate Majority Leader Dick Saslaw had been inspired as well, and under his leadership, autism insurance reform legislation actually passed the Senate in 2010, only to die in the place it had died for multiple years: the House Labor and Commerce subcommittee.
I breathed a heavy sigh, knowing that we would need nothing short of a miracle to make it out of that subcommittee in 2011. It was the same group of legislators who had refused to even take a vote on the bill the two prior years. There was no reason to believe our outcome would be any different this time around.
But we had to keep pushing. We just had to. Family after family had testified in Richmond about their struggle to pay for the most basic treatments for their loved ones with autism.
One mother spoke of her two preschoolers, both of whom had been recently diagnosed. Their doctor had prescribed Applied Behavior Analysis therapy for the boys, knowing early intervention was crucial. She blinked back tears as she held up photos of the two sweet faces, asking the legislators, “Tell me .. which one? Do I give them both just a little therapy, knowing that it’s not even close to enough? Or do I focus on giving the appropriate amount of therapy to just one?” These were the sort of choices Virginia families were being forced to make because health plans specifically excluded treatment for autism.
Another mom spoke about how health insurance had covered the treatment for her son with leukemia, but her son with autism was categorically denied. This was discrimination, plain and simple and legislative action was needed to end it.
You would think with such compelling testimony, legislators would move swiftly to correct the problem. But our opposition had a strong presence and created just enough confusion to convince them otherwise. They shrugged their shoulders and pointed to the educational system, saying autism was something that should be dealt with in the schools. They made outrageous claims about the cost, claiming that if autism were covered, Virginians would end up losing their healthcare because it would be too expensive. Businesses just couldn’t bear this additional burden.
Fortunately, not only did we have compelling family stories on our side, we also had facts. Actuarial studies and experience data from other states indicated that coverage would likely increase health insurance premiums less than half of once percent; mere pocket change. Another study commissioned by Virginia’s Joint Legislative Audit and Review Commission indicated that billions of dollars in special education services could be saved if children were provided intensive early intervention. The Virginia Chapter of the American Academy of Pediatrics stepped up to testify regarding the efficacy of the treatments included in the legislation.
So here we were, heading into yet another legislative session, the filing deadline looming. Even with the families and the facts in our arsenal, Virginia legislators had turned us away, year after year. We needed a breakthrough desperately.
On January 21st, that breakthrough came. I began the day, wearily tearing off the daily calendar page, knowing that miracles were something nice to think about, but just not reality in the world of autism. I ended the day on a very different note.
I’ve actually saved the e-mail that I sent to my colleagues at 5:30 pm that Friday. The subject line tells the tale. It simply reads, “Do you believe in miracles?” I went on to explain that an extraordinary development had occurred. Not only had our autism insurance legislation been filed in the Senate, but it had also been filed in the House. As anticipated, Senator Howell was listed as our patron in the Senate and Senate Majority Leader Saslaw’s name was there as well. What we didn’t anticipate was that, in addition to our two new sponsors in the House (Delegate Tim Hugo and Delegate Tag Greason) another patron’s name had been added to the list: Speaker William Howell.
This was the breakthrough we needed. With the Speaker on board, the House subcommittee where had died two years running finally voted us out of committee favorably. We quickly navigated through committees in both the House and Senate, eventually passing both chambers and heading to the Governor’s desk. Governor McDonnell initially protested, sending the bill back to the legislature with amendments. The legislature stood strong, rejecting the poison pill amendment and, thankfully, Governor McDonnell saw fit to sign the legislation into law on May 6th.
It is worth noting that this was not a miracle that happened in a vacuum. This miracle was the product of a great amount of blood, sweat and tears. It was the result of the commitment and determination of members of the Virginia Autism Project, a group of stakeholders who literally worked for years to see this effort through. It was the product of the leadership of legislative champions including Senators Howell and Saslaw, Delegates Greason and Hugo and Speaker William Howell. The members of Autism Speaks’ Government Relations team have been honored to work alongside this incredible group of miracle-makers over the past three years.
I’m happy to tell you that I now know the answer…
And it’s an unequivocal, “Yes. Absolutely… Why not today?”
On Monday, April 25, 2011 Capital One Financial Corporation held its 2011 Autism Awareness Education Session for its associates at its Richmond facility and broadcast to its offices nationwide. Don Busick and Nick Sladic, two Capital One associates who founded the associate affinity group called the Autism Spectrum Connection, kicked off the presentation by explaining how they formed the group at Capital One as a part of its corporate diversity program. A handful of Autism spectrum disorder parents got together informally at first, Don explained, and proved to be the best resource for each other. In partnership with the company’s HR team, they founded the group with three goals in mind: to create deeper connection for the families through membership; to provide as much useful and helpful information as possible; and, in the spirit of Capital One, to give back to the communities where they are doing business.
Judith Ursitti, Autism Speaks’ Regional Director for State Advocacy Relations, spoke on the autism insurance reform movement. She was joined on the panel by Virginia State Senator Janet Howell and Delegate Tag Greason, who were patrons of the Virginia autism insurance reform bill, which will become law at midnight on May 6, 2011. Robbie Maino, a college-bound high school senior who is the child of a Capital One associate, spoke movingly about how early intervention made a world of difference in his overcoming the difficulties he faced in his own struggles of autism.
In addition to providing information and support to its associates, Capital One has taken the step of electing to provide coverage for autism related behavioral therapies through their insurance carrier.
Rob “RJ” Paczkowski, Capital One’s Director of Health and Wellness, gave an overview of their autism health insurance benefit. Beginning January 2010 Capital One provided health insurance coverage for behavioral therapy for autism and other related disorders, with no dollar or age caps, as long as the treatment was pre-certified and provided under the supervision of a board-certified behavior analyst.
In addition to insurance coverage, Capital One associates can take advantage of flexible spending accounts to pay for alternative treatments or over-the-counter medications and supplements as long as they present a doctor’s letter of medical necessity. Capital One also worked with their Employee Assistance Plan to help organize special services and resources for special needs children and to connect its associates with government benefits available to disabled dependents which are based on the individual’s needs, not the parents’ income. Stephen Evanko and several other Capital One associates closed the session by sharing how the autism health insurance benefit made a difference in their children’s lives.
This is a guest post by Judith Ursitti. Judith is Regional Director of State Advocacy Relations at Autism Speaks and has been involved in advocacy since her son Jack’s autism diagnosis almost five years ago.
It was the time of day when I generally start to fade. The sun was setting, and I felt certain that my family, like most others, was probably sitting down to dinner right about now. Ron Marcellus, autism dad, and co-chair of the insurance committee of the Vermont Autism Task Force, and I were the final, weary two, sitting in the empty gallery of the Vermont House of Representatives in Montpelier.
It had been a marathon of a day. The autism insurance bill (S. 262) that we had been working on for months was destined to be sent to the place lawmakers send things when they don’t have the wherewithal to say “No”…
But Ron and his fellow Vermont advocates weren’t ready to give up just yet. So they made one last heartfelt push, and found a group of receptive legislators in the Vermont House Health and Welfare Committee. These dedicated stakeholders worked the halls of the capitol all day, educating legislators, spouting the numbers, personalizing the need, hoping for a miracle. After staying as long as they could manage, they had to get home to their families.
And so here we were. Just Ron and me, sitting in the gallery, waiting anxiously to see what the future held for S. 262. When our moment finally arrived, we both leaned forward and held our breath.
Would enough of the legislators understand the need for this sort of legislation? Would they understand it from both a fiscal and moral perspective? Would they truly recognize the discrimination? Would they believe in the potential of people with ASD? I swallowed the lump in my throat. Only time would tell.
The Speaker agreed to have a roll-call vote, which would require every representative to announce their vote aloud for the record.
“Good.” I thought to myself, “I want to be able to hold those accountable who vote against us.”
Ron and I glanced at each other as we heard the first vote. “Yes.”
And then another …“Yes.” And another … “Yes.”
I looked over at Ron, and saw the tears streaming down his cheeks.
And right then and there, I stood up. And I looked at Ron and told him to stand up too.
So we stood, shoulder to shoulder. One autism mom. One autism dad. Watching, waiting, wiping away tears.
We stood up straight, knowing the legislators down on the floor of the chamber couldn’t help but see us there.
One by one, as they cast their votes, they looked right at us. Some cried with us. Some smiled. They knew we stood there doing our best to represent the families who struggled to obtain coverage for even the most basic treatments for their loved ones with autism.
It was a moment, as an autism mom, and as a member of Autism Speaks’ Government Relations team, that I will never ever forget.
They saw the need. They weighed the evidence. They digested the numbers. They thought about their constituents.
They felt the momentum.
When all was said and done, they all voted “Yes.”
The same scenario is playing out in state after state across the country, as Autism Speaks works with advocates and legislators to pass meaningful autism insurance reform legislation.
In 2007, three states (Indiana, South Carolina and Texas) had laws in place requiring health insurance to cover autism treatment. Three years later, the landscape has changed dramatically. For years, determined parents of children with autism (like Ron Marcellus of Vermont, Mike Wasmer of Kansas, Josh Cobbs of Iowa, Bill Bolster of Missouri, Kirsten Murphy of New Hampshire and Anne Gregory of Kentucky) worked the halls of their state capitols, educating legislators, personalizing the need, hoping for a miracle.
Legislators from both sides of the aisle have decided to be more than mere supporters, but rather champions for the cause. Scott Rupp of Missouri advocated passionately on the Missouri Senate floor. Senator Daryl Beall of Iowa spoke poignantly about his grandson and inspiration, Drew.
So far, in 2010 alone, governors in Kentucky, Kansas, Iowa and Maine have signed autism insurance bills in their respective states. Bills in Vermont and Missouri are sitting on their governor’s desks, awaiting signature. And many, many states are working actively on similar legislation. To learn which ones are, please visit http://autismvotes.org/stateinitiatives.
Three years ago there were three states requiring health insurance to cover autism treatment. Now, there are 19. And soon there will be 21. And before we know it, the majority of states in the country will have meaningful autism insurance reform legislation on the books.
Lawmakers will see the need. They will weigh the evidence. They will digest the numbers. They will think about their constituents.
They won’t be able to help feeling the momentum.
And advocates and stakeholders will stand shoulder to shoulder, thankful for the progress.
Proving it’s about time …
Time for lawmakers to listen.