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Autism Speaks to Host Workshop at APBA Convention
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!
When an Autism Diagnosis Brings Relief
Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.
Vincent Randazzo explains how his family’s connection with autism runs even deeper.
When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.
Michael has a brother and a sister who would love him and care for him like any other sibling. At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs. We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.
I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation. But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.
Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing. He became less talkative, developed verbal tics, and made eye contact less often. He would obsess about movie videos, ceiling fans, and where we placed his food on the plate. We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children. He didn’t play or interact with his peers the way a typical child with Down syndrome did.
During family vacations or visits with friends and relatives, Michael would be irritable and disruptive. He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground. We were always being told that people with Down syndrome were so lovable and good-natured. Why wasn’t that the case with our son?
Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability. During one medical visit, we were told “so what if he had autism, what difference would it make?” One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.
At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility. We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.
The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.
We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally. After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best. The medicines he took and the way his medical providers approached his care significantly changed. With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.
The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges. In fact, as he has grown older, those challenges have only increased. But the diagnosis has provided relief to our family because we now understand him better. We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them. And I am no longer constantly frustrated and angry with his inability to do simple tasks.
Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.
Transcript for “My Child Has Autism: How Do I Get Insurance?” Webchat
On Monday February 27th the Government Relations team hosted their first webchat, “My Child Has Autism: How Do I Get Insurance?” The webchat was hosted by Lorri Unumb, Esq., Vice President for State Government Affairs.
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Lorri Unumb to Host “My Child Has Autism: How Do I Get Insurance?” Webchat
Please join us Monday February 27th for our first webchat featuring the Government Relations team: “My Child Has Autism: How Do I Get Insurance?” The webchat will be hosted by Lorri Unumb, Esq., our Vice President for State Government Affairs.
Held at 8 p.m. Eastern (7 Central/6 Mountain/5 Pacific), this “office hour” will connect families looking for answers about their health insurance with Ms. Unumb, who is regarded as one of the nation’s pre-eminent experts on health insurance and coverage for the diagnosis and treatment of autism. Ms. Unumb wrote groundbreaking autism insurance reform legislation enacted in her home state of South Carolina in 2007 and has since led the way for the enactment of similar laws in 27 other states. Her most recent honor was the 2012 Leadership in Advocacy Award presented by the California Association for Behavior Analysis.
Ms. Unumb welcomes your questions about how autism insurance coverage works in your state, understanding self-insured policies and the impact of the new federal health care law on autism coverage. However, the guidance provided on the webchat is not meant to substitute for the information provided by your employer’s human resources department, your insurance agent or attorney.
Disability Advocates Press Case for ABLE with Congress
Autism Speaks joined with advocates from the nation’s other leading disability organizations today to make the case before Congress for ABLE—a bill that would allow families raising children with disabilities to save tax-free for their future needs.
The briefing was organized by Reps. Ander Crenshaw (R-FL), Chris Van Hollen (D-MD), and Cathy McMorris Rodgers (R-WA) all cosponsors of HR.3423, the House version of the Achieving a Better Life Experience (ABLE) Act. A panel of disability experts, including Stuart Spielman, senior policy counsel with Autism Speaks, addressed the briefing.
The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment.
Spielman noted the 600 percent increase in the prevalence of autism over the past two decades and the financial hardship encountered by many families caring for loved ones with autism. The ability to plan for the future needs of loved ones with autism would offer another resource for some families, he said.
John Ariale, Rep. Crenshaw’s chief of staff, said the bill was drafted so that SSI and Medicaid benefits would not be negatively impacted by opening an ABLE account. If the account balance reaches $100,000, SSI benefits would be suspended, he said. SSI benefits would resume if the account balance drops below $100,000.
Crenshaw and Van Hollen said the bill enjoys strong bipartisan support in both the House and the Senate, and already has over 90 House sponsors.
Qualified disability expenses under ABLE would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.
Spielman noted that he and his wife were able to establish a traditional 529 account for their typically developing son to save for his college expenses, but are unable to do so for their other son who has autism to save for his future life needs. The ABLE act would improve the quality of life for individuals with disabilities, he said.
Are You ABLE to Support Tax-free Savings Accounts?
Do you want to be “ABLE” to save tax-free for the future needs of your child with autism? Then come join Autism Speaks and advocates from 48 other national disability organizations tomorrow in Washington, D.C. for a Capitol Hill briefing on the Achieving a Better Life Experience (ABLE) Act. The briefing will be held from noon to 1:30 pm in Room B-339 of the Rayburn House Office Building.
The Achieving a Better Life Experience Act would level the playing field for individuals with autism (and other disabilities) and their families to save for disability-related expenses. Just as families can put away savings in tax-exempt accounts for children to go to college, the ABLE Act would allow such accounts for individuals with disabilities to cover their future education, housing, transportation and related expenses. ABLE Accounts would resemble existing 529 college savings plans and would supplement, not replace, benefits provided through Medicaid, private insurance or employment.
The briefing has been organized by Reps. Ander Crenshaw (R-FL), Cathy McMorris Rodgers (R-WA) and Chris Van Hollen (D-MD), all cosponsors of HR.3423, the House version of ABLE. A panel of experts, including Stuart Spielman of Autism Speaks, will address the briefing.
According to a Harvard School of Public Health study, the cost of caring for a person with autism will exceed $3 million over their lifetime. Providing care for adults with autism is often far more expensive than for children, yet there are fewer funding resources. As more and more children with autism age to adulthood, their families are growing increasingly frustrated over how to plan for their future. The need for new resources to provide them with necessary care and services is imperative.
Qualified disability expenses would include: school tuition and related educational materials; expenses for securing and maintaining a primary residence; transportation; employment supports; health prevention and wellness costs; assistive technology and personal support; and various miscellaneous expenses associated with independent living. Eligibility would extend to any individual who is receiving supplemental security income benefits or disability benefits under Title II of the Social Security Act, or “who has a medically determined physical or mental impairment, which results in marked and severe functional limitations” that can be verified by a physician.
Shedding Light on the “Black Box” of Healthcare Expenses: Planning for Autism Health Care Costs
This blog is provided for informational purposes. Autism Speaks is not affiliated with FAIR Health nor are we offering an endorsement of their services.
Parents and caregivers of children with autism know only too well the difficulty of predicting the need for healthcare services and high cost of providing this care for autism treatment and related health issues. Planning for medical expenses in advance can help relieve some of the stress and allow you to focus on getting your child the care he or she needs.
A new, independent not-for-profit can help shed light on what has often been considered a “black box” of healthcare costs and help families to better prepare to manage expenses. FAIR Health, whose mission is to bring transparency to healthcare costs and health insurance information, offers a variety of free online services. Now families can look up the cost of healthcare services on the consumer website, www.fairhealthconsumer.org. The FH Consumer Cost Lookup on the site is based on a database of billions of billed medical and dental services.
The FH Consumer Cost Lookup includes medical and dental cost data for every area in the United States. Families or caregivers of children with autism can use the service to estimate what they may be charged along with estimates of what their insurers might reimburse for out-of-network services. Now it is possible to estimate how much you will have to spend before you decide whether to go outside your insurer’s network for a medical or dental service.
For example, several tests and procedures must be performed before a diagnosis of autism can be determined. One very common diagnostic procedure is a developmental behavioral screening ‒ CPT code 96110. A family in Los Angeles with a child undergoing screening for autism can use the FH Consumer Cost Lookup to find out the potential cost of this procedure by entering the zip code for the area where the procedure will be performed and the CPT code (or name of the procedure), as illustrated in the screen shot below.
In the next screen, an estimate of the total charges is shown, with a breakdown of the estimated reimbursement and out-of-pocket costs. For a developmental behavioral screening provided in Los Angeles, it is estimated that the provider will charge $124.99. If the procedure is covered by insurance at a 70 percent rate and is performed by an out-of-network provider, the estimated out-of-pocket cost to the consumer is $37.50.
If you know the terms of your insurer’s plan, you can use the FH Consumer Cost Lookup to obtain an estimate of what you may be responsible for paying for medical services from an out-of-network provider. While this estimate is based on FAIR Health’s extensive data on the fees that providers in your area bill for healthcare services, a variety of other factors, such as deductibles or copays, may influence the exact amount that you will have to pay for services received out-of-network.
The website features an easy-to-use slider tool that allows you to personalize the cost estimate by adjusting the level of reimbursement based on the provisions of your health insurance plan.
The website also offers clear, unbiased educational articles and videos about healthcare insurance. For instance, the educational series, “Reimbursement 101,” can help consumers better understand healthcare insurance and the many variables that affect reimbursement.
NBC’s Andrea Mitchell Airs Plight of Military Families
NBC correspondent Andrea Mitchell examined the plight of military families raising kids with autism, interviewing military spouse Rachel Kenyon, whose husband has served multiple deployments to Afghanistan, and Peter Bell, Autism Speaks executive vice president for programs and services. On MSNBC’s Andrea Mitchell Reports, Kenyon described the difficulties military families encounter in finding services for their children and the disruption caused by multiple deployments.
Bell discussed the Caring for Military Kids with Autism Act (HR.2288) which would ensure that the military’s TRICARE insurance program covers all military personnel, regardless of their duty status. As now structured, members of the military lose autism benefits for their children when they retire, even when wounded in action and medically retired. At a Congressional briefing Tuesday on the issue, Rep. John Larson of Connecticut, the sponsor of HR.2288, called the treatment of military families raising loved ones with autism “immoral.”
Military Families Tell Their Stories at Congressional Briefing
Military families finally got their say before Congress today about the injustice of losing autism benefits for their children when they retire, even when due to being wounded in action. More than 100 members of the military and their supporters jammed into a Capitol Hill briefing today to talk about the special difficulties military families face caring for children with autism.
Hosted by Sen. Kirsten Gillibrand of New York and Congressman John Larson of Connecticut, the briefing also provided military families an opportunity to explain how they lose autism benefits once they or their spouse leaves active duty because of the current operation of the military’s TRICARE insurance program. A bill now before Congress, the Caring for Military Kids with Autism Act (HR.2288), would right that wrong by assuring that members of the military, regardless of their duty status are covered
Stuart Spielman, senior policy advisor and counsel for Autism Speaks, said many of the challenges faced by military families “do not have simple solutions. There are good and bad school districts for special education. Moving from one place to another may mean going to the back of a waiting list for Medicaid or some other program. With access to behavioral treatments like applied behavior analysis, however, there is something we can do right now,” he said, in urging support for HR.2288.
Military members and their spouses at the briefing spoke of the difficulties they face accessing care and sufficient treatments for their children while on active duty, and their fears of losing all autism benefits when they retire.
Rachel Kenyon, the wife of a Connecticut Army Reserve platoon sergeant, related how her husband learned that their daughter had been diagnosed with autism while he was on his second tour of duty in Afghanistan.
“‘What does that mean?’ he said. ‘Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.’ But I had no answers for him. I had no hope to offer.”
Jeremy Hilton, a Navy veteran whose wife serves in the Air Force, explained how frequent redeployments and being stationed in areas with few available providers frustrated their efforts to provide care for their daughter.
Karen Driscoll, the wife of a Marine Corps helicopter pilot with 27 years of service, questioned how members of the military can focus on their mission when worried about uncertain care for their children with autism back home. “Our family is in debt because of TRICARE limitations on ABA therapy,” she said. “We are struggling. And my husband is a Colonel.”
Geri Dawson, Ph.D., chief science officer for Autism Speaks, provided background about autism, the rapid rise in prevalence and the special challenges faced by military families. “Studies show that…families of children with autism experience high levels of stress. For military families, this is compounded by the stresses associated with their service. When one parent is on active duty, the other may be facing these responsibilities alone. When a parent returns from active duty, their families may have the additional challenges of a parent with service-related mental or physical health problems.”
Leading up the briefing, Autism Speaks reached out to the military community to submit their stories by video. You can watch these compelling stories below. In addition, many others posted their comments through Facebook or in reply to blogs.
“There is almost nothing more stressful than the combination of military life and a child with special needs,” said Melanie Pinto-Garcia.
Janice Allmann McGreevy, posted: “The government needs to understand that our heroes are not automatons. They are subject to emotions. They need to be supported, and that means knowing that their families are not fighting nonsensical battles here at home.”
You can help our brave members of the military. Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here. Read more about this issue from the Huffington Post.
Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here.
Troops in Contact
The following blog post by an Army Sergeant Major deployed to Afghanistan, who must remain otherwise anonymous, demonstrates vividly the extraordinary challenges faced by our military members raising children with autism. Visit ‘Welcome to Stim City‘ to follow Mrs. Sergeant Major’s Blog and to read original post.
Military families will finally get a chance to tell their stories to Congress on Tuesday, January 31. Learn more here.
The satellite radio crackles to life; “Iron Gray TOC, this is Butcher 6 receiving indirect fire at this time”. The radio operator answers the call; “This is Iron Gray TOC. Roger, requesting air support at this time.”
Troops in Contact (yes that means what you think it does) were a daily occurrence as an Infantry Battalion Operations Sergeant Major in Afghanistan. I had dealt with quite a few of these by February 2010 while working the Tactical Operations Center (TOC) in theater. I had learned to deal with them in a cold, detached manner dispensing assets such as artillery, air support and helicopter support to assist in the fight against the Taliban.
So when I heard those words “[RM] has autism” through a poor overseas cellphone connection I was initially unmoved. My training kicked in. Clear the airspace and give me a fire mission of 155mm artillery.
It wasn’t until I got back to my bunk after a 17-hour shift did the words sink in. AUTISM!? Artillery isn’t going to help that.
Maybe it was the distance from home or the 130-degree Afghanistan heat that removed me from the reality of what I had heard. I just could not believe my little girl had autism. Yes, she was born with multiple disabilities but autism was never on the radar. Having a nephew on the spectrum, I knew the very broad and somewhat vague meaning of an autism diagnosis, but stumbling through one in a war zone left me asking what is autism? Probably not a good idea to sidetrack my Intelligence Section asking them to research that one for me. To say I was busy during this deployment would be a gross understatement. The TOC was the heart of the Battalion’s operations and the heart never stopped beating. However, I had managed to find a few spare moments to Google “autism” which confirmed my suspicion that artillery was not the kind of support needed to be called in this time around. Instead, my Googling from Afghanistan proved that the primary assets for this mission would include treatments such as Applied Behavior Analysis (ABA), speech, occupational and physical therapies. I assumed RM’s school would be all over that. Evidently, as it turned out the school system in our town was not a “Friendly” element.
Never leave a fallen comrade.
Failure in my business is not an option and it would appear that my town was accepting defeat and leaving my little girl behind. I was appalled. Months went by with frequent calls from Mrs. SGM sharing the emotional and often fruitless results of meetings with the town, special education lawyers and one very rude town special education administrator. It began to affect my performance. I struggled to focus on my daily responsibilities and at times had to force the issue of autism out of my mind. Staying focused meant ignoring my family so that I didn’t get a soldier killed in theater.
I decided to weigh in on the issue with the town. Lucky were the town personnel who were failing my child that were out of range of my artillery support. I think one of the frustrating things for me was the inability to affect how the fight with the town was going from Afghanistan. Mrs. SGM gave updates almost daily. I cannot take credit for the battle that was fought and won in regards to getting RM her required therapies at an outplacement school. Mrs. SGM led that assault and is now deep in the trenches to change TRICARE military insurance to make autism benefits accessible to all dependents as standard care. Doing so will not take the shock, fear and disbelief out of receiving an autism diagnosis, but it will help diminish the confusion, frustration and roadblocks to success in getting our kids what they need.
TRICARE should be like Combat Support. It should be there when you need it with no questions asked or forms to fill out and should be ready to provide cover for all Troops in Contact including our precious military children with autism.
