Support ABLE Accounts

The only problem I have is the income level for claiming this as a deduction. The deduction for joint filers phases out at $60,000. Two working parents in an urban area easily make that limit as an AGI, though it does not mean they are moneyed by any stretch of the imagination. Lifting the AGI cap higher would help more families to be able to save that $2000 year with a tax benefit, which would be so helpful as we all struggle with bills. Still, the bill is worth supporting.

AUTISM SPEAKS APPLAUDS THE INTRODUCTION OF THE ABLE ACCOUNTS ACT - S. 493

NEW YORK, NY (February 27, 2009) -- Autism Speaks, the nation’s largest autism science and advocacy organization, today applauded Senators Robert Casey (D-PA), Orrin Hatch (R-UT), and Christopher Dodd (D-CT) for introducing S. 493, the ABLE Accounts Act of 2009, which would encourage individuals with autism and other disabilities and their families to save, tax-free, for disability-related expenses. Senators Richard Burr (R-NC), Edward Kennedy (D-MA), and Sam Brownback (R-KS) are the bill’s original co-sponsors.

The ABLE Accounts Act of 2009 – or Achieving a Better Life Experience Act – would amend the IRS code to provide for the establishment of savings accounts “for the purpose of supporting individuals with disabilities to maintain health, independence, and quality of life.” Similar in many respects to existing 529 college savings plans, these accounts will be exempt from federal taxation, provided certain rules are met. The legislation’s intent is to supplement rather than to replace benefits provided by other sources, including Medicaid and private insurance.

Accounts will have a contribution limit of $500,000 but will grow tax free and will not have any effect on the disabled individual’s ability to collect from other means tested federal programs, such as Medicaid, food stamps, and federal housing assistance. Allowable expenses include: preschool education; postsecondary education; tutoring; special education services; training; employment supports; personal assistance supports; community-based supports; respite care; clothing; assistive technology; home modifications; out-of-pocket medical, vision, or dental expenses; transportation vehicle purchases or modifications; insurance premiums; habilitation and rehabilitation services; funeral and burial expenses; and other services or products allowed by regulation.

“We commend Senators Casey, Dodd, Hatch, Brownback, Burr and Kennedy for spearheading the legislative process to create these vitally important savings accounts, which will reduce an unreasonable financial burden for millions of families and end discrimination against individuals with disabilities in the federal tax code,” said Bob Wright, co-founder of Autism Speaks. “If parents are entitled to save, tax-free, to send their child to Yale, they should be able to save in the same way to help every child meet his or her full potential.”

My family: We're coming to DC, but we aren't coming to see you...

I am so bummed. My sister and her kids are coming over spring break. Fabulous, no. Clearly issues are there, given the title of this point. They are coming over their break, March 16 through 19, days in which I will still be at work. They are staying at my mom's house. And they are going to do the tourist thing in a serious way, only setting foot in Virginia for the last day to go to Mt. Vernon and Reagan National Airport. I have two personal days left, with one allocated for travel to Christine's graduation and another half set aside for the annual IEP meeting for Jimmy. Yes, mine take hours. Moreover, I had two meetings that week - regular school board on Monday and joint session on Tuesday. Wednesday is Jimmy's therapy session, so I don't even have an evening to sneak over across the bridge for dinner.

Arrghhh...

And the hitmakers keep coming...

Berlin is playing this year's Regeneration Tour. In DC, it will be at the always lovely venue of Wolftrap. I will be very happy to see Terri play, though it is always bittersweet as I was friendly with some of the guys in the band. Ric Olsen and John Crawford are two of the nicest guys you can ever hope to meet. Bands Reunited happened when I was too pregnant to travel, so I missed my once in a lifetime reunion. This girl still dreams that lightning would somehow strike twice, though she is old enough to know better. But I will be there to welcome Terri back to DC.

Oops...

We just realized that we didn't move the snow shovels from the townhouse. Big oops when the snow is six inches deep in your driveway.

Can't wait for the DVD...

Jai Ho - Slumdog Millionaire (English Subs)
Uploaded by aka71691

Snow day?

In March? It's been a while since that has happened. The daffodils are going to be confused...

By Kari Pugh

Published: February 28, 2009

It might’ve been in the 60s on Friday, but weather forecasters are predicting a snowstorm this weekend.

The National Weather Service has issued a winter storm watch for the Washington region, including Prince William County, Manassas and Manassas Park, from Sunday night through Monday morning.

Forecasters say a low pressure center moving up the Atlantic Coast could bring more than five inches of snow starting late Sunday.

I was supposed to shop with my mom and she has already called to cancel. I haven't seen her in six weeks. Damn snow-pocalypse. I wanted to see my mommy. :( And when Jimmy has a therapy cancellation for weather, it doesn't get made up.

Poop.

The Illness That Never Ends...

Jimmy got sent home from daycare... after spending most of the day apparently crashed out on a beanbag in the classroom. I think the lingering nature of the virus going around the schools and his Risperdal had the collective effect of transforming him into Captain Narcolepsy. He was barely improved, thus his early pick up from extended care. I am sending him back in the morning to school. I don't feel great about it and I will leave early if I need to.

I have been working hard on a bunch of things, so I have been falling behind on my posting. But I got a letter in the mail next week that I am completely overdue in posting about. So that will likely come tomorrow.

I am such a nerd...

Yay!

For T and Becky...

T, get a sitter. The hubby can spare you for one evening. Becky, come up or I will come down... The DC show means you will be here for Mom's birthday!!! And Jimmy's if you make it a long weekend.

I have been looking forward to seeing DM again... since the last time. Music gives me such joy. It is the best mood elevator ever. I am really stoked.

Depeche Mode - 2009 Tour Dates (cities only)
Friday, July 24th Toronto
Saturday, July 25th Montreal
Tuesday, July 28th Washington, DC
Friday, July 31st Boston
Saturday, August 1st Atlantic City
Monday, August 3rd New York
Monday, August 10th Seattle
Wednesday, August 12th San Francisco
Friday, August 14th San Diego
Sunday, August 16th Los Angeles
Monday, August 17th Los Angeles
Thursday, August 20th Santa Barbara
Saturday, August 22nd Las Vegas
Sunday, August 23rd Phoenix
Tuesday, August 25th Salt Lake City
Thursday, August 27th Denver
Saturday, August 29th Dallas
Sunday, August 30th Houston
Tuesday, Sept 1st Atlanta
Friday, Sept 4th Tampa
Saturday, Sept 5th Ft. Lauderdale

For T...

It's been a long time, I shouldn't have left you, without a dope beat to step to...

The Pet Shop Boys performing at the BRIT Awards with Lady GaGa and the most beloved Brandon Flowers!!!!

Parents Sue Kaiser

And I applaud them for it. I have a special disdain for Kaiser. They drug their feet on Jimmy's diagnosis, took too long to give a referral on the whole ear thing, and inserted his ear tubes incorrectly on two occasions. More relevant in this case is Kaiser and all other insurers in California are mandated to provide care. They are passing it back to the schools, saying it isn't their responsibility. Ridiculous.

I will always err on the side of Kaiser being inept at meeting the needs of its members, but I will say that this case and so many like them is the whole reason for research. I think the vaccine issue and the fear of litigation on the part of the medical industry has really diminished their interest in support research into autism. This is a medical condition - the denial of this on the part of the insurance industry is the only thing that has spared them from having to meet the medical treatment needs of children with autism. The only thing I think the insurance industry would support is the development of prenatal diagnostic testing so that children with autism would be "selected" out of the gene pool. I would put money on seeing that long before we see better treatments for children with autism.

The Cougar Annual Art Show

Hopefully DH will send me some pictures to post, but this time, both Jimmy and Jacob had stuff in the honors' gallery. The art teacher told me that Jimmy put every tactile thing he could on his sculpture. His seascape was impressive. Jacob did a feather painting and what looked like a sponge painting. I will try to get pics up tomorrow. The art show is always huge for us, as it is one of the few things that Jimmy sort of gets equally represented in. And it isn't forced. When he did his kindergarten graduation concert, it was the teachers holding him on the risers while he... well, declined to sing with the rest of the children. In this, it wasn't just task completion. You can look at his work and see some part of him come out. It is very cool.

Epic meltdown...

''

Wait until 2:50 mark... she puts the blame where it likely belongs... ;)

Autism Coverage Bill Fails

Here is the article that touches the low points of the legislative experience of the two autism bills in Virginia. Saslaw's attempt at a joke isn't shocking. From the VPAP site, his contributors include:

$12,500 Anthem Richmond
$11,000 Va Hospital & Healthcare Assn Richmond
$1,500 Aetna Life & Casualty Hartford, CT

My connection timeout before I could get through his eight pages of contributions, mostly from companies. I guess in Virginia, businesses have a better shot getting legislation stopped when they lay out this kind of cash on lawmakers.

Autism Coverage Bill Fails
Senate's Move, House Panel's Inaction Anger Advocates
By Fredrick Kunkle
Washington Post Staff Writer
Thursday, February 12, 2009; B07

RICHMOND, Feb. 11 -- The Senate has effectively killed a bill that would have required insurers to cover autistic children, pleasing business lobbies that argued against new mandates but enraging parents who vowed revenge at the polls.

The fight over mandating autism coverage has gathered intensity nationwide and resonated especially strongly in Loudoun County and other fast-growing areas of Northern Virginia with high numbers of children.

Anger about the bill's defeat late Tuesday was magnified by what appeared to be a flip remark by a Northern Virginia lawmaker who had offered qualified backing for the cause. Moments after the vote on the bill concluded a late session, Majority Leader Richard L. Saslaw (D-Fairfax) took the floor.

"I'd inquire of the clerk: Who won?" Saslaw said with a grin. "We had a pool going."

The Senate clerk replied with a smile: "That's not appropriate, senator."

Advocates of the bill thought Saslaw's question referred to a wager on the bill's fate.

"Our parents just felt like their kids were made some sort of a joke, an office wager," said Judith Ursitti, regional director for Autism Speaks, a nonprofit organization.

But Saslaw, who had attempted to broker a compromise on the autism bill, said yesterday that his joke was a victim of bad timing. The office pool he referred to, Saslaw said, concerned the hour at which the Senate's session would end. Saslaw said it was tradition to wager on the timing of "crossover," the final session when each chamber concludes work on legislation that must be referred to its counterpart. Saslaw said he regretted the bill's failure.

"I did everything I could to get this thing out of here," he said.

More than 100 people, including educators, lawmakers, and families with autistic children, assembled in July at a community center in Lansdowne on the Potomac to organize their campaign. They enlisted not only other parents of autistic children but also their friends in what became known as the Loudoun Project. They traveled by the busload to the capital and trooped to lawmakers' offices wearing huge buttons saying, "Autism Votes in Virginia," often with their autistic children in tow.

"We promised a daily presence," said Pasquale "Pat" DiBari, a Leesburg resident and early organizer. "We really went above and beyond to tell legislators our personal stories."

Allying themselves with Autism Speaks, parents entered about 20,000 supporters into their database, and they flooded lawmakers' inboxes with more than 7,000 e-mails, winning bipartisan backing from Dels. Robert G. Marshall (R-Prince William) and David E. Poisson (D-Loudoun). Sen. Jill Holtzman Vogel (R-Winchester) carried a bill in the Senate.

But the legislation met resistance from the business community, which argued that a recession was the worst time to impose a costly mandate.

"I'm very sympathetic to the parents and children caught up in this terrible condition," said Hugh Keogh, president of the Virginia Chamber of Commerce. "[But] our numbers show a decreasing amount of employers who are able to offer health-care insurance every year, and mandates are a part of that."

Reginald N. Jones, a lobbyist for the Virginia Association of Health Plans, said one estimate suggested that the costs of autism coverage could be as much as $40 million a year in Virginia, despite a provision that would cap expenses at $36,000 per child per year.

"It would probably become the second most expensive mandate in Virginia, and maybe the first," Jones said.

The bill quickly met resistance. The House Commerce and Labor Committee took no action on it, infuriating advocates who noted the unpleasant irony that the bill suffered the same fate as some of their children. "To receive the silent treatment was really stunning," DiBari, 40, said.

Jodi Folta, 39, an accountant who lives in Ashburn, said advocates were mystified by the actions of Del. Thomas Davis Rust (R-Fairfax), a member of the Commerce and Labor Committee. Rust appeared to be a friend of the cause, turning up at a rally on the capitol grounds, but he showed no effort to advance it, Folta said.

"He's on our unhappy list," Folta said.

Rust did not respond to a message at his office seeking comment.

In the Senate, Vogel sought compromise by limiting the mandated coverage to children younger than 12. Saslaw cut the age further, to 6 years old. But efforts at compromise failed.

"I've struggled with this bill, and I think everybody here has struggled with this bill," said Sen. Kenneth W. Stolle (R-Virginia Beach) before asking that the bill go back to the Finance Committee, where it would effectively die this year. "The legislative process is an ugly process, and this has been particularly ugly."

Staff writer Tim Craig contributed to this report.

My World Has Been Rocked...

So my friend, the one that I found recently, is five years out from having Hodgkin's Disease and thriving. We have exchanged long e-mails and spoken on the phone. She was and is an amazing person for just being who she is. But knowing that she went through chemo, nearly died at one point, and is here for me to find five years later. It is something that keeps rattling around in my brain over and over as just an amazing blessing on so many levels. My world feels differently to me than it did two weeks ago. I don't think I can offer any other explanation than that.

Happy, happy, happy

If I could justify a $22 pair of flip flops, I would simply would have to buy these...



I would just have to get a bag to match...

Sad, sad, sad

Well, the State Senate version of the autism bill is stuck in committee, where coverage was cut from 21 until the age of 6. Apparently, if they haven't gotten "better" by the age of six, we are just supposed to give up. Such crap. Expect this come back year after year - parents love their children. We don't give up.

The really sad thing is I am a Democrat. Senator Chuck Colgan was the head of the committee on this bill. I haven't been able to ascertain his stance on the legislation, but I am disappointed that this wasn't able to get out of his committee this year and all that the coverage wasn't broader. I don't blame him personally, but I would very much like to know what went on. In contrast, Republican Delegate Jackson Miller's stock shot up with me tremendously. He was committed to this bill for months. I will always appreciate his efforts.

CNN Autism 911

I was talking to someone tonight and I realized that I hadn't posted the CNN Autism 911 article and follow up story links.

So here you go...

Autism Bill Stalls in the House

Autism Bill Stalls In House
By Erika Jacobson

(Created: Wednesday, February 4, 2009 3:39 PM EST)

Loudoun parents who have spent months working to get legislation passed in Richmond that would provide health insurance coverage for families with children suffering from autism were dealt a blow this week, when the House of Delegates subcommittee on Commerce and Labor was silent on the issue.

After what Lansdowne resident Pat DiBari called 45 minutes of "testimony and great questions and dialogue back and forth" there was "absolute silence" from the eight present subcommittee members, he said.

"Nothing. No action. Zero," DiBari said Tuesday evening. "They chose not to vote. Families are stunned, outraged, disappointed, you name the emotion."

Going into Tuesday night's subcommittee meeting DiBari and other parents who have been advocating for passage of HB1588 were optimistic. Since last year, parents from Northern Virginia have begun to reach out to parents of autistic children around the state to support legislation introduced by Del. Bob Marshall (R-13) that would mandate medical coverage of habilitative services for children. The bill describes habilitative services as "health and social services directed toward increasing and maintaining the physical, intellectual, emotional, and social functioning of developmentally delayed individuals, including occupational, physical, and speech therapy; assistance, training, supervision, and monitoring in the areas of self-care, sensory and motor development, interpersonal skills, communication, and socialization; and reduction or elimination of maladaptive behavior."

In a statement released Wednesday afternoon, Marshall said the lack of action on the part of the subcommittee was a "display of complete indifference" and said he had told the members of the subcommittee who were present that "silence is not a morally acceptable response to this situation."

"Three members who favored HB 1588 were not present. I pointed out to the subcommittee that they had the ability to recommend reporting the bill to the full Labor and Commerce Committee without any recommendation. That was also met with silence," Marshall wrote. "I noted to Del. Terry Kilgore, who chairs the full Labor and Commerce Committee, that he has the authority to bring up HB 1588 regardless of the actions of the subcommittee. He said he would not do that. Again, silence is not an acceptable response. Legislators are sent to Richmond to confront issues not duck them."

Last spring the bill also was left in committee, but was regenerated this year and there were hopes that it would gain support in both chambers of the General Assembly.

"I think it's been an uphill battle, but we've got a lot of people on both sides supporting it," Jodi Folta, who founded the Loudoun County Autism Network with DiBari, said before the subcommittee meeting.

Members of the Loudoun County Autism Network have said Marshall's legislation would take a large burden off of parents of autistic children, many of whom are facing medical bills ranging from $10,000 to $50,000 per year and are having to take out home equity loans and second mortgages to cover the cost.

According to the national organization Autism Speaks, one in 150 people will be diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined.

The Loudoun Board of Supervisors, the Leesburg Town Council and the Loudoun School Board have all expressed support for the bill, but one of the big events that led parents to be hopeful was the debate that occurred in the Mandated Benefits Commission in November, a day DiBari called "a roller coaster ride."

"We thought it was just a vote, but it ended up being a debate," he said. "We were scrambling on our Blackberrys to get them the answers they needed."

Ultimately, the commission voted to support the bill and by January supporters of the bill believed they had at least half of the House of Delegates in support of the bill, which places a $36,000 cap on the annual maximum benefit coverage for families. In January, almost 300 people, including several delegates and senators, gathered at the state capitol building for a rally in support of the bill and since then there have been parents and supporters at the capitol building every day talking to legislators.

"They've been meeting with delegates and telling their stories," DiBari said.

Indeed, Del. David Poisson (D-32), who has become a co-patron of the bill, said it is the families who have made a difference.

"The parents have been very transparent," he said. "They have revealed more about their lives that we would certainly expect from anyone else who comes before the General Assembly."

Most of the opposition to the bill has come from the business sector, including the Virginia Chamber of Commerce. Concerns have been raised that requiring businesses to cover autism treatment in their insurance would put too much of a burden on business owners. But that's a claim that DiBari, Folta and other reject.

"We have to look what this is going to do to families in Virginia. Not just one or two, but a large number of them," Poisson said. "Over the longer term, what toll is that likely to take, not only on the families, but on Virginia as a whole? The less these parents are able to take care of these burdens on their own, the more they are going to be reliant on services."

Monday, a study prepared by a consulting firm on the costs associated with HB1588 was released and the data showed that premiums would rise only $1.90 per month per covered person. Autism Speaks at one time estimated the monthly cost to be $3 or $4.

"We're really excited about this because it's based on this actual bill," Folta said. "It's based on the cap in this bill. It's based on the number of kids in this state."

Folta and DiBari had hoped the new numbers would silence some of the critics that said the bill would be too expensive for businesses, but Tuesday's lack of a vote left them questioning.

"There's a health care crisis, but we can't hold these young children hostage because there's a larger problem with the system in this country," DiBari said. "We think this is a reasonable bill that could immediately impact 10,000 families."

The bill does not cover all families with children suffering from autism. It leaves out state government employees and those companies that self-insure, but those omissions were not done easily, Folta said.

"It doesn't cover state employees, but that is because of the budget," she said. "In this climate it wouldn't even work."

Other bills that are designed to try an address the issue of autism treatment, specifically those that make it a school system issue, have also failed at the General Assembly and parents are hoping legislators are beginning to realize that HB1588 is really the only way to help autistic children.

"A lot of addressing their needs is addressing their everyday needs," DiBari said. "Those are things that need to be addressed before school age. They're missing the prime target of ages."

Since the failure to get a motion from the subcommittee, parents are regrouping, hoping that there is still a chance for the house bill. Parents are hoping to reach out to Del. Terry Kilgore (R-1), chairman of the Commerce and Labor Committee, who was not present at the subcommittee meeting, and Del. William J. Howell (R-28), who is Speaker of the House, to demand a vote on the bill.

Parents are also planning to shift a majority of their focus to members of the Senate Commerce and Labor Committee, which is reviewing an identical bill filed by Sen. Jill Holtzman Vogel (R-27). Vogel's SB1260 is scheduled to come before the committee for consideration next week.

All members of the Loudoun delegation, DiBari says, have expressed their support for both bills, but only Del. Tom Rust (R-86) sits on the House of Delegates Commerce and Labor Committee. Sen. Mark Herring (D-33) sits on the Senate committee.

While parents are still hoping for a result that will bring them the relief they desperately need, DiBari and Folta both say they are happy that Loudoun's elected officials have taken up the reins of the autism coverage issue.