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‘Aging Out’: How Does the New Federal Health Care Law Impact Coverage for Young Adults?

December 14, 2011 1 comment

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.

October is National Disability Employment Awareness Month

October 4, 2011 1 comment

President Obama has issue a proclamation in recognition of National Disability Employment Awareness Month.

The President says, “During National Disability Employment Awareness Month, we recognize the skills that people with disabilities bring to our workforce, and we rededicate ourselves to improving employment opportunities in both the public and private sectors for those living with disabilities.”

Click here to read the full proclamation.

And visit Autism in the Workplace on the Autism Speaks web site.

CARA: It Took a Community

September 28, 2011 5 comments

This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.

I couldn’t be happier to share once again the news that we all had been waiting for…the Combating Autism Reauthorization Act is on its way to President Obama. Late Monday night, the U.S. Senate passed HR2005, the same bill that passed the House of Representatives last week.

For those who followed the chain of events during the past week, the band of four Senators who had placed a “hold” on the bill agreed to allow CARA to pass the Senate under the Unanimous Consent procedure. Their only condition was a request to the U.S. Government Accountability Office (GAO) to undertake an investigation on the federal funding of autism research, a request Autism Speaks has long supported to ensure our scarce federal research funds are spent wisely.

So now we have a law…well technically it becomes a law once President Obama signs it later this week!  $693 million in authorizations for autism research for the next three years.

Our success in the Senate this week and the House of Representatives last week was the result of a rare show of bipartisan leadership in today’s Congress. In the Senate, we thank our two original sponsors, Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY), along with the chairman of the Health, Education, Labor and Pensions Committee chairman, Sen. Tom Harkin (D-IA). Senate Majority Leader Harry Reid (D-NV) and Minority Leader Mitch McConnell (R-KY) also earn our thanks by enabling our bill to move through a crowded agenda and on to the Senate floor for a final vote. In the House of Representatives, a team effort between Reps. Chris Smith (R-NJ), the prime sponsor of HR.2005, and Mike Doyle (D-PA) was assisted by House Majority Leader Eric Cantor (R-VA) who expedited consideration of the bill.

But this team effort extended well beyond the Beltway. The tens of thousands of Autism Speaks grassroots supporters and advocates across the United States who we called upon time and time again to make their voices heard played a central role in this success. A special thanks goes out to the entire Autism Speaks Field team for its incredible responsiveness and for rallying the troops from Maine to Florida, Texas to Minnesota and from Washington to the Tijuana border. Our grassroots efforts have never been better! And our thanks must also go to our partner organizations in this effort, the Autism Society of America, the Association of University Centers on Disabilities, the Consortium for Citizens with Disabilities, Easter Seals, the American Academy of Pediatrics, and the National Association of Councils on Developmental Disabilities.

The final enactment of CARA will be of enormous benefit to the autism research community that is making advancements on an almost daily basis. Because of CARA,  the research enterprise will be able to continue to grow, without interruption, to find the answers our community so desperately needs and deserves.

On behalf of the 3 million Americans who wake up every day with the challenges of autism, the professionals who work daily to care for them, the scientists who are dedicating their careers to finding the answers and all of those who are committing their lives to improve the futures for those living with autism, thank you!  Today is a better day because of what WE ACCOMPLISHED TOGETHER.

Countdown to CARA: On to the Senate!

September 7, 2011 Leave a comment

September 7 was an important day for the nation’s autism community as Congress began the effort to renew the landmark 2006 Combating Autism Act. By unanimous voice vote, the Senate Health, Education, Labor and Pensions (HELP) Committee moved S.1094, a bill which would renew the act for another three years, out of committee and on to the full Senate for a floor vote. While an important step, the HELP vote was just the first of several that Congress will need to complete by September 30 when the law expires.

To keep up the momentum, it is important that advocates urge those U.S. Senators who have yet to cosponsor S.1094, the Combating Autism Reauthorization Act (CARA), to do so immediately. Nearly a third of the Senate has signed on to the bill, including five new cosponsors this week, but we need more. Visit our CARA Action Center to learn how.

Getting the bill voted out of the HELP committee required that a quorum of 12 Senators were in attendance. An intensive grassroots efforts by Autism Speaks through the Labor Day weekend helped ensure that 14 members attended and all voted to approve the bill for consideration by the full Senate. When that vote will occur is uncertain.

In the U.S. House of Representatives, the CARA bill (HR.2005) similarly must first move out of the Energy & Commerce Committee before it can go to a full vote on the House floor. But before the committee acts, it must receive confirmation from Rep. Eric Cantor (R-VA), as the House Majority Leader, that he will allow the bill to go to a floor vote. Autism Speaks has launched a radio ad campaign in Rep. Cantor’s home district (Richmond-Harrisonburg) encouraging him to support CARA. Leader Cantor was a co-sponsor of the 2006 CAA, serves on the Congressional Autism Caucus and has attended Walk Now for Autism Speaks events in the past.

The original 2006 act authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. CARA would continue funding at current levels, authorizing $693 million over the next three years, without adding to the federal debt. The 2006 law was critical by establishing autism as a national health priority. Federal funding was increased by virtue of the 2006 law, leading to significant advances in the understanding of autism. The CAA 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, critical studies are underway and promising new interventions have been developed for children with autism, helping them to lead more independent lives, thereby reducing the need for publicly funded special education and social services.

Once a final bill is voted out of Congress, it goes to President Obama who has promised to sign a reauthorization bill this year. ALL of these steps must be completed by September 30 when the original act expires. To track the progress of the CARA legislation, visit the CARA home page at Autism Votes.

“Lighting” the White House Blue

April 2, 2011 28 comments

The autism community came together to urge President Obama and his staff to light the White House blue as a symbol and statement to the world about autism. While we still have hope that it will happen one day, we took matters into our own hands this Saturday, April 2, 2011.

Over one hundred Autism Speaks supporters gathered on Pennsylvania Avenue in front of the White House to commemorate the fourth annual World Autism Awareness Day and to light it blue with their presence, hope  and love for the community.

“We are gathered here today to help shine a light on autism,” said Jayne Tobin, whose sister and brother-in-law, Suzanne and Bob Wright, founded Autism Speaks in 2005.  “The children gathered here with their families, just like my grandnephew, represent the fastest growing developmental disability in the world.  It is imperative that our government and the world take action against autism.”

Rebecca Grazel, a student at George Washington University, took dozens of pictures of the blue-clad volunteers.  “By telling those who were in the dark about this empowering day and the disorder itself, we are ensuring that others will spread the word.    What is a bigger sign of awareness and support than showing up in the hub of our nation’s capital, wearing blue, and documenting this momentous occasion of countless others doing the same?  I am so happy to be a part of it.”

Read the passionate and moving posts on the “Light the White House blue for autism awareness” blog that features incredible posts from Jess, Mrs. Sergeant Major, Suzanne, Kerry, Wills, Laura and Amy.

 

A Boy and the Budget

February 17, 2011 11 comments

This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.

President Obama’s Federal Budget for the Fiscal Year 2012 allocated funding to various programs and initiatives designed to help “Win the Future for People with Disabilities.” These proposals include: expanding autism research, increasing support for workers with disabilities, and increasing funding for the education of children with disabilities. Click here to read more.

Have you met my son Jack?  He’s pretty awesome. Ok, I’m kind of biased, but he really is.  He’s handsome and smart, with a goofy sense of humor.  He loves to play the violin, go bowling with his friends, eat pizza and watch old Tom & Jerry cartoons. He has two brothers, who are equally awesome, and they spend a lot of time being gross boys together. You know, laughing about gross boy things. Jack likes hotels a lot and spends a lot of time researching them, because he wants to own a hotel when he grows up.

Sounds pretty typical on paper, doesn’t it?  Jack has autism. And in that one word, anything typical goes right out the window… and fast.

His past, present and future are anything but typical.   As his mother, I am plagued by questions about how my baby boy “got” autism.  I am constantly fighting someone for access to insurance coverage, or for his therapies, or for appropriate educational services.  Like most parents of a child with autism, I lie awake at night wondering how my child will support himself, because although he is very smart, the social and communication deficits that are the core of autism will make sustainable employment very challenging – and that’s if there is even a company that would hire him.

One out of every 110 people in America today is a “Jack.”  The tsunami is coming.

In my life as Connecticut’s advocacy chair, I try to read and process as much as I can about policy and legislation that may impact all of the “Jacks” here in my state, so I can be as effective as possible when communicating the needs of our community to state and federal policy makers.  I am NOT a policy maker, but I’m a mom advocating for my very own Jack and every time I see “autism” in a legislative document, I consider it a victory.  Having been at this autism gig for over seven years now – helping my state enact autism insurance reform law, as well as cultivating a close working relationship with elected officials –  I also have a pretty decent understanding of what it takes to get policy-makers to pay attention to the issues that affect individuals with disabilities like autism.

I recently read President Obama’s federal budget proposal for people with disabilities, which became the impetus for this blog piece.  I was pleased to see that the President’s proposal included funding for research through the NIH (National Institute of Health), so that we can get to the root of the autism epidemic and provide appropriate treatments for our families.  The President’s proposal also includes “a $200 million increase for the Individuals with Disabilities Education Act (IDEA) State Grants to provide a high quality education and help offset state and local education costs for children with disabilities.”  Among other recommendations, the President’s budget plan proposes funding to encourage workforce innovation to make jobs accessible to people with disabilities (as Walgreens Distribution Centers has done) and suggests appropriating “$24 million to the Department of Labor for the Disability Employment Initiative, which awards grants to build the capacity of One-Stop Career Centers to serve individuals with disabilities.”

I might actually sleep a bit tonight knowing these proposals exist. I’m also comforted knowing that Autism Speaks has developed resources for kids like Jack as they make their way through adolescence towards adulthood (see links below).

Make no mistake, this is not a political endorsement.  Autism is not defined by a political party. It is defined by the families who live it day in and day out.  That being said, I do hope our elected officials in Washington, DC read this blog entry and take it to heart.  One out of every 110 people in this country are relying on them to help us take care of our precious children.

For more information:

Read Summary of President Obama’s FY2012 Federal Budget for Individual’s with Disabilities

Download the Autism Speaks Transition Tool Kit

Visit Advancing Futures for Adults with Autism (AFAA) website

Health Care Reform: What Does it Mean for the Autism Community?

March 23, 2010 8 comments
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