Archive
Military Families: Let Congress Hear Your Voice!
On January 31, military families will get their chance to tell Congress about the special challenges they face raising children with autism. Many military parents will be in the audience.
But many more will be unable to make it to Washington for the briefing.
Autism Speaks believes their voices need to be heard as well. We are making it possible for these military families to record a brief story about their experiences and upload it to our YouTube page. We will share as many of these videos as possible with Congress, including airing portions of them during the meeting.
Visit our YouTube page to find out how you can participate!
FEDERAL HEALTH CARE LAW ALLOWS STATES TO DECIDE AUTISM BENEFITS PACKAGE
The U.S. Department of Health and Human Services (HHS) recently announced that states could define benefits under the Affordable Care Act (ACA), the federal health care law enacted in 2010, by choosing one of several state and federal health care plans as a reference. The plan each state chooses could have significant impact on the coverage of autism interventions.
HHS is encouraging public input on its intended approach. To help the autism community respond, Autism Speaks has analyzed the HHS proposal as it relates to autism coverage. Comments should be directed to HHS by January 31, 2012, to EssentialHealthBenefits@cms.hhs.gov.
Under the HHS proposal, the health care plan a state chooses would serve as its standard for all health care plans, whether they operate inside the health insurance exchange created in the state, or in individual and small group health care plans offered outside the exchange. The benchmark plan would set benefits for all health care services, including autism interventions.
The ACA directs HHS to define essential health benefits (EHB) – a set of core health services. Certain health plans would then have to cover those benefits beginning in 2014. Those plans include: individual and small group health plans that were not in effect the day the law was signed in 2010; Medicaid benchmark and benchmark-equivalent; and Basic Health Programs (optional state programs for individuals and families with incomes between 133 and 200 percent of the federal poverty limit).
The law provides that the EHB include items and services within the following 10 benefit categories:
1. Ambulatory patient services
2. Emergency services
3. Hospitalization
4. Maternity and newborn care
5. Mental health and substance use disorder services, including behavioral health treatment
6. Prescription drugs
7. Rehabilitative and habilitative services and devices
8. Laboratory services
9. Preventive and wellness services and chronic disease management
10. Pediatric services, including oral and vision care
States must pay the cost of any benefits required by state law that go beyond the EHB. In a challenging economy, states may be reluctant to assume the cost of additional services, so what is covered in the EHB really matters.
With the stated aim of balancing “comprehensiveness, affordability, and state flexibility while taking into account public input throughout the process of establishing and implementing EHB,” HHS for 2014 and 2015 gives states a choice of four benchmark plan types:
1. the largest plan by enrollment in any of the three largest small group insurance products in the state’s small group market
2. any of the three largest state employee health benefit plans by enrollment
3. any of the three largest national Federal Employees Health Benefits Program plan options by enrollment
4. the largest insured commercial non-Medicaid health maintenance organization (HMO) operating in the state
If a state chooses a benchmark subject to state mandates, that benchmark would include those mandates in the state EHB package. HHS intends to assess the benchmark process for 2016 and beyond and may exclude some state benefit mandates from the state EHB package.
HHS will require states to supplement coverage if a benchmark plan is missing one of the 10 categories of benefits. For example, if a state’s benchmark plan does not cover habilitative services, such as speech therapy for a child with autism who is not talking at the expected age, HHS could require the plan to add that care.
HHS is considering two specific options for benchmark plans that do not include coverage for habilitative services:
1. requiring habilitative services to be offered at parity with rehabilitative services, or
2. letting plans decide which habilitative services to cover
Under the second option, plans would report their coverage decisions to HHS, which would evaluate them and further define habilitative services in the future. This option might give plans discretion to refuse coverage for autism.
Another concern is applied behavior analysis (ABA). All plans must cover mental health and substance use disorder services, including behavioral health treatment, and HHS acknowledges that mental health parity applies in the context of EHB. Many of the benchmark plans will follow state law that makes ABA a covered benefit. But what if a benchmark plan does not cover ABA? HHS has provided no guidance, even though the ACA demands this care. (Reference A, B)
HHS intends to require that a health plan offer benefits that are “substantially equal” to the benefits of the benchmark plan selected by the state and modified as necessary to reflect the 10 coverage categories. In other words, HHS will allow insurance companies some flexibility to adjust benefits, including the specific services covered. Allowing substitution within or across coverage categories introduces more uncertainty – it could either enhance or dilute autism services.
To respond to the HHS proposal, send your comments by January 31, 2012, to EssentialHealthBenefits@cms.hhs.gov.
‘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.
Autism Speaks Recognizes Pearl Harbor Day and our Military Families
President Franklin D. Roosevelt’s powerful and iconic speech following the Pearl Harbor Attacks.
As we honor our military on this special day in our nation’s history, the Caring for Military Kids with Autism Act (HR.2288) continues to languish in Congress. Did you know that our service members lose all autism benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat?
The Caring for Military Kids with Autism Act would end that injustice against those who do so much for our country. HR.2288 would make clear that all military members, whether on active duty or retired, qualify for autism insurance benefits for their dependents. Take time today to help our military families.
Write your Member of Congress below and ask them to co-sponsor HR.2288! If they have already signed on, send them your thanks!
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Here is How YOU Can Help: |
| 1) PLEASE ASK YOUR MEMBER OF CONGRESS TO CO-SPONSOR THE CARING FOR MILITARY KIDS WITH AUTISM ACT BY SENDING THEM AN EMAIL HERE. NOTE: We have it preloaded in the system so if your Member of Congress has already sponsored this legislation they will receive a thank you note; if not, they will receive a request to sign on as a co-sponsor. You can take action here.2) SPREAD THE WORD ON FACEBOOK. Post the following suggested message on your Facebook page:“SUPPORT OUR MILITARY FAMILIES! Email your Member of Congress to ask them to co-sponsor the Caring for Military Kids with Autism Act. Military members now lose their autism insurance benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat. Help end this injustice against those who matter most to our country by taking action with your Member of Congress on the link below. Repost. Then write DONE so I can thank you!”LINK TO: www.autismvotes.org/Military Kids |
To learn more about the Caring for Military Kids with Autism Act, please visit our Military Families page.
Please stay alert as we guide the autism community in ways that can help make this a reality for our military families. Let’s serve those who serve us! They have put their lives on the line to preserve our freedom, right to vote and opportunity to approach our political leaders every single day. Their children deserve appropriate coverage.
See how many people YOU can activate to help!
Tribute to Matthew P. Sapolin (1970 – 2011)
This blog post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.
Matthew P. Sapolin
My heart is heavy today. A few hours ago, I learned that one of my favorite disability advocates passed away on Tuesday. His name was Matthew P. Sapolin and he was the commissioner of the Mayor’s Office for People With Disabilities in New York City. He lost his fight against cancer, a disease he had been battling most of his life. He was only 41. But cancer wasn’t his disability. He was also blind. According to his friends and colleagues, his blindness informed his life, it did not narrow it. As a dad of a young man with autism, I like that description. The New York Times published a wonderful article about Matthew’s life, his accomplishments and the mark he left on the disability community. I would like to dedicate this tribute to the mark he left on me.
I first met Matthew at a disabilities housing conference in 2010 at the Federal Reserve in Washington, DC. We sat next to each other and although we didn’t talk much, I was impressed with his ability to navigate all aspects of his life. I did get to know his service dog quite well. He was kind and gentle just like his owner.
In April of that year, Commissioner Sapolin hosted a special ceremony at City Hall to commemorate Autism Awareness Month. He personally attended the event, which honored several advocates from the autism community, and spent considerable time talking with the attendees. He also delivered a speech that made it clear he understood the many challenges people with autism face. His compassion for others was palpable.
Two months later, I joined Autism Speaks co-founder Suzanne Wright for a meeting at City Hall where we talked with the Commissioner about our awareness initiatives and family services programs designed to help people with autism in New York City and beyond. He listened, gave us advice, showed that he cared and importantly offered to help. Exactly the kind of meeting one would like to have with every administrative official!
My fondest memory of Matthew, however, was spending time with him on the South Lawn of the White House in July, 2010. We were there to commemorate the 20thanniversary of the American Disabilities Act (ADA). It was a beautiful day, not a cloud in the sky. Temperatures hovered close to 100 degrees, most of us were sweating profusely. We talked about how fitting it was for the occasion. When it came time for President Obama to walk a line to shake hands with the attendees, it was obvious that only a few would be able to personally greet the President. Suddenly, we were in a “disability mosh pit” vying for our moment of fame.
Matthew’s beautiful wife Candra was at his side but they got separated as the President made his way to our section of the line. I was in the front row and about 30 seconds from my chance to meet the President of the United States. But suddenly I decided that it was more important for Matthew to meet the President than me. That day was about him more than it was about me (or my son with a disability who couldn’t be there). So I turned around, gently grabbed Matthew by the shoulders and guided him to the front of the line where he got his 15 seconds to personally talk with President Obama. I wish I knew what they said to each other.
As soon as they were finished, Matthew swung around and had the most incredible look of joy on his face. I can still see that expression now, it will never leave my memory. He didn’t know where I was standing; he shouted my name and when I told him where I was, he gave me a big ol’ hug. Candra handed me a camera (or maybe it was a phone) and asked me to take a picture of them. Shortly thereafter, I managed to get my Blackberry to snap a picture of the President (see attached) as he made his way down the line. It was a surreal moment for all of us and one that will probably last with me forever. And Matthew Sapolin was a part of it.
I haven’t seen or talked with Commissioner Sapolin since. I didn’t know that his cancer had returned. I knew Autism Speaks was working with his office on some autism awareness initiatives but his death came as a complete surprise to all of us. His passing is a huge loss to our community. Not just to Autism Speaks, or the autism and disability community but our community at large. He represented all of us. He showed us how to live courageously as well as compassionately. He stood for those who can’t always stand for themselves. I learned valuable lessons from him and hope to carry these forward as an advocate for the disabled. Thank you for modeling these qualities for us. Rest in peace, Matthew.
(l-r) Matthew Sapolin, New York City Mayor Michael Bloomberg, Autism Speaks President Mark Roithmayr
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.
The Month in Review: Autism Speaks November 2011 Impact
Happy Thanksgiving and Happy Holidays to you and your family! This past month has been a whirlwind of activity here at Autism Speaks and we wanted take the opportunity to give thanks to the many collaborators who work with Autism Speaks in a variety of ways; from content partners to research providers to corporate sponsors and marketplace vendors – you all help us every day accomplish our vision and mission. Thank you from the bottom of our hearts and from the Autism Speaks staff and board.
Meanwhile, November was a busy month that featured global science outreach, an update to the resource guide and much more.
One of the common (and terrific!) questions we get is how does research help your child today. We recently posted a terrific blog about just that topic that we highly recommend you read!
“When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.”
Have a wonderful holiday season with your family!
Science
Autism Speaks in Shanghai
- To China, and Beyond! The science department’s highlights for November begin with the science leadership’s historic trip to Shanghai, China. Our colleagues there were eager to hear about new research and treatments being developed in North America. We were impressed with their technological prowess. In the coming year, the Beijing Genome Institute will be sequencing the DNA of families participating in our Autism Genome Resource Exchange (AGRE) program, allowing us to create the world’s largest whole genome sequence library for autism research.
- Neuroscience Conference Update Our VP of Translational Research, Rob Ring, Ph.D., and Assistant VP Head of Medical Research Joe Horrigan, M.D., attended the annual conference of the Society for Neuroscience, which began with a special three-day satellite symposium on Autism Spectrum Disorders—from Mechanisms to Therapies. As part of the this symposium on translational research, Autism Speaks co-sponsored the publication of two watershed documents: SnapShot: Autism and the Synapse richly illustrates how 16 autism risk genes interact within and between cells that convey vital brain messages; SnapShot: Genetics of Autism summarizes knowledge on scores of autism-risk genes—both their normal functions and how their mutations increase the risk of certain autism sub-types and syndromes. Both documents are now available for free download from our science page.
- Research Results A number of our research grants came to fruition this month with high-profile papers in major publications. Among them were Eric Courchesne’s findings on altered prenatal brain development in children with autism (Journal of the American Medical Association) and Schahram Akbarian’s association of “epigenetic” changes with autism (Archives of General Psychiatry). Both studies were made possible by a combination of donor dollars and family participation in our Autism Tissue Program.
- Awards We are pleased to share the news that the American Public Health Association has bestowed the Rema Lapouse Award for exemplary work in psychiatric epidemiology to longtime scientific advisory committee member Ezra Susser. Ezra is also one of the powerhouses behind our initiative for Global Autism Public Health (GAPH). Congratulations Ezra!
Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.
Family Services
Enzo’s mom talks insurance
- Updated… Autism Speaks Resource Guide This month, Autism Speaks launched the updated version of the Resource Guide, one of the most popular and valuable tools on our website that makes it easier for families to search for resources in their areas from early intervention services, to employment programs, to social skills groups, and much, much more!
- The new version contains better URLs, updated resources, a bigger map, and the ability for families to share resources on Facebook and Google+.
- Do you provide or are you aware of services in your area for individuals with autism? Let us know! The new Submit A Service form allows service providers to add their information to the Resource Guide, and gives families the opportunity to input information about resources they have found helpful in a simple and organized way.
- Autism Speaks Live! Announced here for the very first time, we’re “re-branding” our live chats as “Autism Speaks Live” and developing even more exciting programming in 2012 for you to get educated, be entertained and to join the conversation. This past month we had several live chats including some new topics.
- Office Hours: Family Services style Each Wednesday at 3PM EST, the Family Services team is available for Office Hours sessions to answer all questions from the Autism Speaks community. Join the conversation!
Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.
The Autism Response Team continues to answer hundreds of emails and phone calls each month from families and individuals with autism. If you have any questions or need assistance or information, please feel free to call us at 888-AUTISM2 or email us at familyservices@autismspeaks.org.
Advocacy
Autism Law Summit
- A Better Life Parents saving for their child’s college education can take advantage of tax-free “529” accounts to prepare for the future. Parents raising children with autism or other disabilities could soon take advantage of the same tax-free mechanism if newly introduced bipartisan legislation is enacted by Congress. The Achieving a Better Life Experience (ABLE) Act was introduced in the U.S. Senate and U.S. House of Representatives with the support of Autism Speaks, The Arc, the National Down Syndrome Society and other leading disability advocacy groups. Under current federal law, individuals with autism risk losing all of their benefits if they have more than $2,000 in assets in their name.
- Washington Watch The U.S. Department of Health and Human Services has begun the process of implementing the sweeping federal health care reform law enacted in 2010, a process that could have profound consequences on how autism treatments are covered through insurance. The HHS is determining what services should be included in the “essential benefits” that health plans will be required to cover. Meanwhile, the Congressional “Super Committee” that was to recommend federal budget cuts collapsed without an agreement, placing in jeopardy significant future funding for autism research and services. Autism Speaks is closely monitoring these developments. You can too at our Federal Initiatives page.
- And they’re off! The candidates vying for the presidency in 2012 have begun debating and preparing for the primaries. Autism Speaks has made available its four-part Blueprint for an Appropriate Federal Response to Autism to interested candidates. In addition, we are tracking notable statements and campaign developments as they relate to autism.
Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.
Awareness
- New PSAs features Tommy Hilfiger and Jamie McMurray In early November, we launched our latest “Odds” PSAs with the Ad Council. Created pro bono by BBDO, the PSAs feature fashion icon Tommy Hilfiger and NASCAR driver Jamie McMurray, who both generously donated their time to help further the cause of autism awareness. Viewers are taken on voyages through Hilfiger and McMurray’s lives that highlight the extraordinary statistical odds they each overcame on the road to success compared to the startling one in 110 odds of having a child diagnosed with autism. The PSAs end by encouraging parents to visit autismspeaks.org/signs to learn the signs of autism and to seek early intervention if a delay is suspected.
- Quotes for Autism Thanks to Allstate, you can get a no obligation, FREE quote on any insurance product Autism Speaks gets $10!
- Light It Up Blue in November! On November 29th San Francisco 49er Running Back Frank Gore and recording artists Pia Toscano & Andy Grammer participated in a holiday tree lighting at San Francisco’s famed 555 California Street. The free event was open to the public and benefited Autism Speaks.
- Google+ Already a fan on Facebook, and a follower on Twitter? Circle us up on Google+ to complete the trilogy! We’re just getting started on Google+ and love how it even further connects us to you, our community!
Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!
Collapse of ‘Super Committee’ Could Trigger Major Cuts to Disability, Autism Programs
The collapse this week of the Congressional “Supercommittee” to come up with a deficit reduction plan could lead to automatic cuts in the federal budget totaling at least $1.2 trillion over 10 years. Unless Congress acts, the cuts will begin to take effect in January 2013. Medicaid and Social Security will not be cut, but autism activities at the National Institutes of Health, the Centers for Disease Control and Prevention, and the Health Resources and Services Administration could be cut by as much as 9.3 percent.
Autism Speaks is a member of the Consortium for Citizens with Disabilities, which released the following statement on the deadlock of the Super Committee from Donna Meltzer, CCD Board Chair:
The Consortium for Citizens with Disabilities (CCD), a coalition of approximately 100 national disability organizations, shares its disappointment today that the Joint Select Committee on Deficit Reduction has failed to come up with a deficit reduction package that addresses the nation’s debt in a manner that is balanced and fair. While the CCD is very pleased that members of the Super Committee worked to protect entitlement programs that are critically necessary for people with disabilities such as Medicaid and Social Security, the failure to complete a comprehensive package leaves consortium member organizations very concerned about how sequestration will impact the nation’s 54 million Americans who live with disabilities and their families.
CCD knows that people with disabilities and their families depend on a safety net of programs that include both entitlement and discretionary spending. Because the Committee was unable to enact a thoughtful, balanced and collaboratively developed deficit reduction package, we now face devastating mandatory cuts to many critical programs serving people with disabilities in sequestration. The nation’s budget cannot be balanced on the backs of those with disabilities and chronic health conditions.
A new report released this month by the Census Bureau shows that 49.1 million Americans are poor. People with developmental and other disabilities, who continue to face the highest unemployment rates, are overrepresented in that number. Especially in times of a weak economy and high unemployment rates, programs that support people with disabilities – such as supported employment, family supports, food stamps, Medicaid and other community based supports and services – must continue and be protected from across-the-board budget cuts.
CCD urges the Congress to work in a bipartisan manner to enact balanced reforms while investing in its most valued resource – the American people.
The Consortium for Citizens with Disabilities is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self-determination, independence, empowerment, integration and inclusion of children and adults with disabilities in all aspects of society.
Autism Speaks Endorses ABLE Bill Creating Tax-free Savings Accounts
Parents raising children with disabilities, including autism, could soon save for their futures with tax-free “529″ savings accounts without jeopardizing their eligibility for other benefits.
The new accounts would be authorized under the Achieving a Better Life Experience (ABLE) Act of 2011, which was introduced today in Congress with the support of Autism Speaks, The Arc, the National Down Syndrome Society and a host of other disability rights groups.
The ABLE Act, sponsored with bi-partisan support in the House by Congressman Ander Crenshaw (R-FL) and Congresswoman Cathy McMorris Rodgers (R-WA), and in the Senate by Senators Robert Casey, Jr. (D-PA) and Richard Burr (R-NC), would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings to tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs.
“This is important, common sense legislation that will provide an incredible financial boost to families affected by autism and other disabilities who are struggling to pay for critical services,” said Bob Wright, Co-founder of Autism Speaks. “If we allow families to save tax-free for college, it is only fair that they be permitted to save to meet the needs of all of their children.”
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.
“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,” said Peter Bell, Autism Speaks executive vice president of programs and services, who spoke at a Capitol Hill press conference where the introduction of the bill was announced.
“Providing care for adults with autism is often far more expensive than for children, yet there are fewer funding resources. As more and more of our children with autism age to adulthood, our hands remain tied in planning for their future, said Bell. “The need for new resources to provide them with necessary care and services is imperative.”
Nora Fitzpatrick and Robert Stephens of Gaithersburg, MD, whose six-year-old daughter, Rory, has autism say the ABLE accounts could help then plan for a more secure future when Rory will join the rising tide of Americans with autism who enter adulthood without assurances of services or financial security.
“In the past four years we have seen huge strides in improvement as well as baby steps,” said Nora. “We’ve also seen behavioral issues pop up and health issues that have set Rory back. The uncertainty of everything is a huge part of the equation for us. The opportunity to start a 529 plan for Rory would be a great way to give us some certainty and comfort for the future.”
Learn more about the ABLE Act on autismvotes.org and ask your members of Congress to cosponsor the ABLE Act.
House Co-sponsor Rep. Ander Crenshaw (R-Florida) dicussed the ABLE Act in a House floor speech on Thursday, November 17.
Floortime and a Spiritual Discovery
Ben G. of Michigan received floortime therapy through The PLAY Project Intervention for Autism, one of Autism Speaks’ first community grant recipients. His mother, Lisa, reports how his progress has led to his writing a sermon that he read at his Bar Mitzvah to his friends and family.
My husband and I have a 13-year-old son, Ben, whose symptoms appeared when he was very, very young. Ben started getting occupational therapy, physical therapy, speech therapy and sensory integrative therapy at 14 months of age, then at 30 months came under the care of Dr. Rick Solomon in 2001. Still, Ben didn’t speak. In fact, he was a mess.
We were family #19 in the PLAY Project. Thanks to the PLAY Project and excellent speech therapists, Ben is doing well today. He is a seventh grader in a regular classroom, although he gets support through extra study hall and help with his reading comprehension. His grades are good (nothing below a B). He seems to be having a normal childhood.
Ben’s Bar Mitzvah was on October 22nd, and his friends (73 of them, to be exact) were coming. (Better yet, he is getting invited to the Bar Mitzvahs of other kids that he knows.) Ben’s Bar Mitzvah fell on the day when Jews read the creation story in synagogues around the world. Because Ben is really interested in weather and space, we were delighted that he was assigned a Torah portion that he could identify with.
But, Ben had to write a sermon.
Here is a copy of Ben’s sermon for you to read. It’s a real testament to the way his brain works (e.g. I told him we would read how God created the universe, and he expected there to be a recipe!) But, it also shows that autistic children can recover to the point of being spiritual.
Dr. Solomon, his wife, the PLAY Project consultant who worked with Ben for three years, and the speech therapist who worked with Ben for five years will all be at his Bar Mitzvah—with bells on! (You should have seen Ben’s face when I used that expression to describe their excitement!) We are looking forward to a great celebration—made possible by the great work that folks do to help autistic children get well and reach their true potential.
If you ever need a child as “living proof” that early intervention works, Ben is Exhibit A. I shudder to think what would have happened without the PLAY Project.
Autism Speaks awarded Dr. Solomon’s institute a $15,000 grant in 2007 for a project called Training Respite Care Providers in The PLAY Project Intervention for Autism.
The PLAY Project is a practical application of DIR (Developmental, Individual-differences and Relationship). Dr. Solomon and his group have trained nearly 200 therapists and teachers in 70 agencies across 22 states to train parents to implement The PLAY Project with children. This project was a collaboration with Lansing Area Parents Respite Center to train its staff of respite care providers in The PLAY Project techniques. By training respite care providers, they improved engagement and interaction with the children that they work with.
This was a pilot project to develop a new model for respite care for children with autism spectrum disorder.
