Archive
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.
‘Aging Out’: How Does the New Federal Health Care Law Impact Coverage for Young Adults?
The Patient Protection and Affordable Care Act (ACA) signed into law in 2010 by President Obama enables parents to carry their children on their health insurance policies up to age 26. How will this impact children with autism? Autism Speaks Government Relations intern Sara Baldwin offers an assessment.
As children with autism become young adults, many parents have concerns and confusion about their child’s health insurance coverage. The ACA will further change the landscape as its provisions are implemented over the next few years.
The age at which adults living with autism are no longer considered a “dependent” on their parents’ health insurance policy can have significant impact. Traditionally, once children reached the age of 19 they were no longer considered a “dependent” on their parents’ health insurance plan and coverage terminated. The only exception was for children who remained full-time students. For children with autism, though, traditional post-secondary education often might not be their next step, thus eliminating their ability to remain on their parents’ policy.
The ACA provides for young adults in any state to be covered on their parents’ health insurance until the age of 26 – and there is no requirement that the child remain in school or even live at home. But as the language of the ACA continues to be interpreted and applied, it is still important for parents to know what is available in their home state.
Prior to the enactment of the ACA in 2010, many states had already recognized the need to cover young adults and amended their laws to require that state-regulated health insurance plans cover dependents past age 19. While the ACA is a great advancement in addressing uninsured young adults – particularly those struggling with intellectual disabilities such as autism – some states provide more favorable coverage. Under the ACA, states are required only to change their laws to be in line with its requirements. Put another way – the ACA represents the minimum of what states must provide, but states can still provide coverage that is more favorable.
While most state laws establish a top age that is equal to, or slightly younger than, the ACA’s requirement, at least four states have more favorable coverage (with some restrictions):
| State |
“Up to” Age |
Limits on Dependent: |
| New Jersey |
30 |
Must have no dependents and reside in New Jersey |
| New York |
30 |
Must be unmarried and reside in New York |
| Ohio |
28 |
Must be unmarried and reside in Ohio |
| Pennsylvania |
30 |
Must have no dependents and reside in Pennsylvania |
Policy owners should be aware that state regulations apply only to fully funded insurance plans. If your company has a self-funded insurance policy, dependent coverage requirements will be governed by the ACA rather than state law. If you are unsure which type of policy your employer provides, you should contact your human resources department.
Disabled Dependents
Nearly all state laws allow dependents to remain covered indefinitely as long as they remain mentally or physically dependent, regardless of age. When looking into your state laws, you may find one of the following statements:
1. The most common version, found in over 30 states, includes something similar to the following:
“…attainment of limiting age shall not operate to terminate the coverage of the child if at such date the child is and continues thereafter to be both (1) incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child’s physician… and (2) chiefly dependent upon such employee or member for support and maintenance.”
See, e.g., Con. Gen .Stat. Ann. § 38a-515.
2. Other states include the following language within the statutory definition of a “dependent:”
“…an unmarried child of any age who is medically certified as disabled and dependent upon the parent.”
See, e.g., Colo. Rev. Stat. Ann. § 10-16-102.
3. Yet another simpler (and vaguer)version lists the limiting age and requirements for young adults and then says that coverage will also be extended to:
“…any other person dependent upon the policyholder.”
See, e.g., Del. Code Ann. Tit. 18, § 3303.
To whom, and how far, this “any other person” language extends is unclear. And despite the inclusion of “disabled dependent” language, the statutes alone do not tell parents how this language is interpreted or how the polices are implemented.
If you have questions about coverage of your adult child with autism, contact your human resources department. If they cannot answer your questions or if you lack confidence in their answers, call your state department of insurance.
2011: A Year of Advocacy Accomplishments
Tis the season to reflect back on the year’s achievements.
2011 was a banner year for Autism Speaks – and for the autism community in general. Some of the most significant milestones were reached in the area of public policy.
This year, incredible strides forward were made when Congress passed the Combating Autism Reauthorization Act (CARA), authorizing an additional $693 million in federal funding for autism research, treatments and services over the next three years. In September, President Obama signed the bill with Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann and his family attending the Oval Office ceremony.
Needless to say, this is an incredible win for the autism community which will help advance the support for individuals with autism.
2011 also ends with autism insurance reform laws on the books in 29 of the 50 states, with the addition of California, New York and four other states this year. This means that more health services will be covered for more people living with autism.
Our fight is far from over. We won’t be satisfied until all 50 states have enacted autism insurance reform so families no longer have to worry about how to pay for the instrumental development and medical needs of their family members.
Join the fight and support Autism Speaks advocacy efforts to help us hit the ground running in 2012.
(l to r) Rep. Chris Smith (R-NJ); Scott Badesch, president, Autism Society of America; George Jesien, executive director, Association of University Centers on Disabilities; President Obama; Suzanne and Bob Wright, Autism Speaks Co-founders; Gena, Jasper and Billy Mann, Autism Speaks.
Enzo’s mom talks insurance
This blog post is by Jeanie Caggiano. Her son Enzo has autism and she is an Allstate customer.
My little boy, Enzo, is 7 years old. He was diagnosed at age 3 with pervasive developmental delay. Last year, they gave us a more specific diagnosis that I am still coming to terms with: autism.
Enzo is apparently on the mild end of the spectrum. But that’s not much of a consolation when I get the call from school that he lost it again today and bit a classmate. Or when I go to volunteer at school and a boy in his class comes up to me and says, “You know, Enzo’s crazy.” Or when I call and call and call the other moms in his class to set up a play date and they don’t return my calls. For the parents of a kid with autism, there’s a new opportunity every day for your heart to break.
It’s why Autism Speaks is so essential. Every day, they’re helping families like ours cope with this disability by researching causes and treatments – and advocating for those who can’t speak for themselves.
I’m writing this because I want to tell you about an easy way to help raise money for Autism Speaks. Now through December 31 (we extended the deadline!) December 14th, when you get any Allstate insurance quote, Allstate will donate $10 to Autism Speaks.
They’ve made a pledge to donate up to $500,000. It’s really easy. You just call 866-998-4488 or visit AutismSpeaks.org/Allstate. Get a free quote on any kind of insurance: car, home, boat, life, motorcycle, business, anything.
Everybody needs insurance. I feel better about getting mine from a company that supports a cause I believe in so much. So please get a quote now through December 31 (we extended the deadline!) December 14th, and tell your family and friends about it, too.
Allstate Partnering with Autism Speaks
This post is by Mark LaNeve, the father of twins with autism and Allstate Executive.
I admit it. I have a couple of very personal reasons for wanting Allstate to support Autism Speaks. Their names are Jake and Drew, and they’re my twin sons. They were diagnosed when they were three. They’re now 19 years old. Jake has full-blown autism while Drew copes with a learning disability and autistic-like tendencies. So I understand life with autism.
When a child has autism, their parents, grandparents, aunts, uncles, brothers, sisters, friends and schoolmates are also affected. It sometimes makes people feel helpless, like they can’t do anything.
But you can do something to help. And it couldn’t be easier. From now through December 15 when you get any Allstate insurance quote, they’ll donate $10 to Autism Speaks. Get a quote on coverage for your car, home, life, motorcycle…whatever. You could save money on quality Allstate protection. And your quote will help fund research to treat this growing disorder.
Allstate has committed to donating up to $500,000 to this worthy cause. The more people who quote, the more money gets raised. So please, encourage friends and family to get a free, no-obligation quote. Continuing education and research is desperately needed, so your quote will make a difference. Just call 866-998-4488 or visit AutismSpeaks.org/Allstate today.
On behalf of those who can’t always say it for themselves – thank you!
Puzzle Pieces of Our Community Honorees
By Daniela Foley
The inaugural Puzzle Pieces of Our Community event was held to honor those individuals and corporations who have supported the autism community. The main honoree and keynote speaker was Senator Marco Rubio who gave an incredible address about his experience with autism both politically and personally. He spoke about his involvement in the process of passing insurance reform here in Florida. He touched on his personal connection through members of his staff with children on the spectrum. I think the most impactful part of his address was his passion for wanting to take swift and bold action because of the staggering number of people in the United States living with autism in the United States today. He is resolute in his desire to ensure that we take notice as a nation as the disorder will impact us as a nation. (I’m not sure we could have written it better if we did his speech ourselves). He moved everyone in that room.
The other honorees included:
Baptist Health of South Florida for their South Miami Hospital Child Development Center which offers comprehensive diagnostic and early intervention services which is the greatest example of their commitment to helping families living with Autism.
CBS4 for excelling at creating awareness about autism research, disseminating important information to the community about services.
Greenburg Traurig for 10 years of support for the Miami Walk Now for Autism Speaks. Their role is instrumental in providing families with a day of sharing, support and hope.
Univision for being a social worker to the Spanish speaking minority that desperately needs vital information regarding services, resouces and treatments.
The evening was a success on all levels. The Senator confirmed his attendance only 4 weeks prior to the event but we sold enough tickets and tables to fill the room in that short time period. His keynote speech was both informative and inspiring! The silent and live auctions combined a significant portion of the fundraising effort and “Fund the Mission” was particularly successful raising more than $10,000 in a period of about 10 minutes. Most importantly, awareness was raised within the corporate community with individuals giving after the event and asking how to get involved with future events including the Walk. There is no greater reward than seeing how people are touched by the cause.
This event grossed over $100,000 which is a tremendous success for an inaugural event and I think a testament to the incredible efforts of a committee determined to reach our goals. None of which is possible without the fearless leadership of Lula Folgosa. It is her selfless giving of time, energy and love that we were able to have this event and lay such a strong foundation for the future of events like this here in Miami.
Update: Autism, ‘Essential Benefits,’ and the New Federal Health Care Law
By Stuart Spielman
Since President Barack Obama signed the Patient Protection and Affordable Care Act (ACA) last year, the impact on coverage for autism benefits has slowly begun to take shape. As federal agencies implement the new law, three U.S. Courts of Appeals have ruled on theconstitutionality of the ACA.The U.S. Supreme Court is expected to weigh in by next summer.
Last week, the Institute of Medicine (IOM), the health arm of the National Academy of Sciences, proposed a set of guidelines for the U.S. Department of Health and Human Services (HHS) to follow in deciding what benefits should gain coverage.The IOM report does not define an autism benefit, but rather lays the groundwork for HHS to issue regulations that may determine autism coverage for affected individuals. Entitled “Essential Health Benefits: Balancing Coverage and Cost,” the report was requested by HHS.
As noted in an earlier blog, words do matter in implementing the ACA. HHS should not ignore congressional intent that the ACA make effective, evidence-based care available to people with autism. Nor should HHS ignore the difficulties families have experienced in accessing proper treatment and the consequences of inadequate care.
The ACA requires certain insurance plans to cover an “essential health benefits” package — a set of services, treatments, and care defined by HHS.The essential benefits package must include at least 10 general categories of benefits, including “behavioral health treatment” and “habilitative services and devices,” and it must be equal to the scope of benefits provided under a typical employer plan.
The IOM recommends that HHS use the following process to establish the initial essential health benefits package:
1. Start with the scope of benefits provided under a typical small employer plan in today’s market, then modify those benefits to reflect the ACA’s 10 general categories of benefits and a framework developed by the IOM that accounts for economics, ethics, evidence-based practice, and population health
2. Adjust this preliminary package by a cost target based on what small employers and their employees can afford
3. Weigh possible trade-offs through public discussion of benefit costs
4. Define the essential health benefits package as specifically as possible. If a service can reasonably be construed to fall into any general category and is not expressly excluded, it should be considered eligible for coverage as long as judged medically necessary for a particular patient
The IOM concluded that state-mandated benefits should not receive any special treatment in the definition of the essential health benefits, but rather be evaluated by this process.Implementation will begin in 2014, and by 2016 the essential health benefits are expected to apply to 68 million people.
With the release of the report, it is now up to HHS to act upon the IOM’s recommendations. In doing so, HHS should bear in mind these findings from the 2005/06 National Survey of Children with Special Health Care Needs:
- 48.6% of children with autism have inadequate insurance (as compared to 32% of children with special health care needs other than autism)
- 31.1% of children with autism have an unmet need for a specific health care service (14.8%)
- 38.6% of families who have a child with autism have financial problems (16.7%)
- 57.2% of families who have a child with autism cut back or stop working (21.7%)
As the IOM recommends, HHS should be guided by a duty to protect the most vulnerable members of society.HHS Secretary Kathleen Sebelius has promised to issue regulations soon.
“But before we put forward a proposal, it is critical that we hear from the American people,” Sebelius said. “To accomplish this goal, HHS will initiate a series of listening sessions where Americans from across the country will have the chance to share their thoughts on these issues. These conversations will help us ensure that every American can access quality, affordable health coverage they can rely on.”
Autism Speaks will announce the listening sessions once they are scheduled. It will be critical to make your voice heard.
Countdown to CARA: Step One on Sept. 7
With just a month to go, time is running short for Congress to renew the landmark Combating Autism Act of 2006. A critical first step arrives Wednesday September 7 when the U.S. Senate’s Health, Education, Labor and Pensions (HELP) Committee takes up S.1094, the Combating Autism Reauthorization Act of 2011(CARA.)
It is essential that a sufficient number of committee members attend the September 7 meeting and then vote to send the CARA bill on to the full Senate for a floor vote. Visit our CARA Champions page here to:
1) find out if your Senator is a member of the HELP Committee
2) make sure they have RSVP’d to attend this critical hearing and
3) find out how to encourage them to RSVP if they have not.
Meanwhile, the U.S. House of Representatives must also vote its version of the CARA bill (HR.2005) out of the Energy & Commerce Committee and on to a floor vote. Once these steps are taken, the House and the Senate must agree on a final version of the CARA bill before it can be sent to President Obama for his signature. This is a lot of work! And it all has to get done by September 30!
Why is this so important? The enactment of the Combating Autism Act (CAA) in 2006 was an historic moment for our community as it has guided the federal government’s response to the staggering rise in autism across the United States. Because of the CAA, Congress was able to invest nearly $1 billion in federal resources through 2011 on biomedical and treatment research on autism. The law required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted and critical studies are underway. Promising new interventions are making a difference in our children’s lives. For more CAA success stories, click here.
The CARA bill is sponsored in the Senate (S.1094) by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY,) and in the U.S. House of Representatives (HR.2005) by Congressmen Chris Smith (R-NJ) and Mike Doyle (D-PA.) CARA would continue the work started under the CAA for another three years and authorize Congress to dedicate another $693 million exclusively to autism research and treatment. To date, 23 other Senators and 61 House members have signed on as cosponsors, and President Obama has promised to sign a reauthorization bill this year.
Visit our CARA Action Center to find if your Senators and Representative are cosponsors. If they are not cosponsors, find out how you can get them to sign on.
Since the original Combating Autism Act was approved in 2006 with near-unanimous support in Congress and signed into law by then President George W. Bush, the prevalence of autism spectrum disorders (ASDs) has risen to 1 in 110 American children – including 1 in 70 boys. An estimated 1.5 million individuals in the U.S. are affected by autism, and government statistics suggest the prevalence rate is increasing 10-17 percent annually. America clearly must step up its response to autism. The responsibility lies with Congress and the answer is passing CARA.
Autism Votes 100,000 Advocates Strong
This is a guest post by Shelley Hendrix, the Director of State Based Advocacy at Autism Speaks.
It was four summers ago that Autism Speaks recruited me to help build a network of autism advocates across the United States, an assignment that recalled my earlier days growing up in the South where summertime activities always included gardening. My parents planted their garden in the spring while my grandmother had a large garden year round at her home in Alabama.
Productive gardening takes diligence – Preparing the ground by tilling and fertilizing the soil. Plowing rows. Placing stakes and strings to support tomatoes and string beans. Planting the seeds or seedlings. And putting up scarecrows. The garden must be watered daily, soil nutrition levels maintained and yes, weeds must be pulled.
As kids, my brothers and I would grow so impatient after planting the seeds. Why did it take so long to notice any change? We would run out every morning to see if anything had popped through the soil or if a flower had formed. Did we see any sign of a fruit or vegetable on the plant? No,just dirt.
But magic was happening below the soil’s surface.
Our mother and grandmother would hand us a bag and instruct us to start pulling the weeds before they got out of hand. Sometimes it was difficult to tell the difference between a weed and a seedling. Sometimes we made mistakes. We rolled up our sleeves for this boring, hot chore, but learned that in order to have a vibrant garden, patience was a prerequisite.
Wait. Wait. Wait. Weed. Weed. Weed.
Somewhere around mid-summer the plants would take off! Delicious vegetables would start coming in – different plants at different times – but just as our mom and grandmother advised us year after year, our patience and care paid off. Our garden was practically bursting!
As the Director of Grassroots Development for Autism Speaks, I have worked with colleagues and volunteers to carefully prepare, till and fertilize the soil for autism advocacy, to plant seeds of change in communities nationwide, to nourish budding plants of reform and from time to time, roll up my sleeves and pull out weeds. All the while, teaching each new gardener, one at a time, how to get to work on tedious, boring tasks while keeping focused on the dream of a beautiful harvest.
This summer, our effort blossomed – we are now 100,000 gardeners strong. 100,000 advocates affiliated with the autism community planted in every state, in communities large and small. These gardeners are dedicated – determined to make a difference for all people with autism, children and adults alike, on a myriad of issues from health insurance coverage, to securing federal research funding, to educational reform and services.
Over the last three years, our community has harvested a total of 25 states that have enacted autism insurance reform and the gardeners there continue to work hard to maintain their patch through implementation. We have planted seeds and are nurturing seedlings in the remaining states to end autism insurance discrimination. We have secured an additional $125M in research funding through the American Recovery and Restoration Act. And we inserted four very important words – “including behavioral health treatment” – into the Patient Protection and Affordability Care Act to cover applied behavior analysis therapy in the essential benefits package for those eligible for health insurance coverage under this law. We are hard at work to maintain the plants that fund autism research and treatment networks by fighting for the Combating Autism Reauthorization Act.
Sometimes, the plants of our garden are on different rows. These different plants produce different fruit and each plant requires different soil conditions and care. But the fruit of each plant is essential to a balanced diet of change within the autism community. We cannot let any of them wither on the vine.
In the end, I learned life lessons from my mother and grandmother’s teachings. I may have one big black thumb when it comes to raising a real garden of my own, but I love to plant, grow and nurture people and will help you become a strong, healthy advocate for change.
If you want to learn how to roll up your sleeves and make a difference in a community garden, please join our Autism Votes program at www.autismvotes.org. We provide you with easy steps to participate so you can obtain health insurance coverage, federal funding for autism research, secure tax deferred savings plans for your child’s adult needs, services for people with autism and education system improvements. If you are interested in becoming a gardener or district leader in your area, please email us at advocacy@autismspeaks.org .
