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NBC’s Andrea Mitchell Airs Plight of Military Families

February 3, 2012 7 comments

NBC correspondent Andrea Mitchell examined the plight of military families raising kids with autism, interviewing military spouse Rachel Kenyon, whose husband has served multiple deployments to Afghanistan, and Peter Bell, Autism Speaks executive vice president for programs and services. On MSNBC’s Andrea Mitchell Reports, Kenyon described the difficulties military families encounter in finding services for their children and the disruption caused by multiple deployments.

Bell discussed the Caring for Military Kids with Autism Act (HR.2288) which would ensure that the military’s TRICARE insurance program covers all military personnel, regardless of their duty status. As now structured, members of the military lose autism benefits for their children when they retire, even when wounded in action and medically retired. At a Congressional briefing Tuesday on the issue, Rep. John Larson of Connecticut, the sponsor of HR.2288, called the treatment of military families raising loved ones with autism “immoral.”

Categories: Government Relations

Military Families Tell Their Stories at Congressional Briefing

January 31, 2012 12 comments

Military families finally got their say before Congress today about the injustice of losing autism benefits for their children when they retire, even when due to being wounded in action. More than 100 members of the military and their supporters jammed into a Capitol Hill briefing today to talk about the special difficulties military families face caring for children with autism.

Hosted by Sen. Kirsten Gillibrand of New York and Congressman John Larson of Connecticut, the briefing also provided military families an opportunity to explain how they lose autism benefits once they or their spouse leaves active duty because of the current operation of the military’s TRICARE insurance program. A bill now before Congress, the Caring for Military Kids with Autism Act (HR.2288), would right that wrong by assuring that members of the military, regardless of their duty status are covered

 

Stuart Spielman, senior policy advisor and counsel for Autism Speaks, said many of the challenges faced by military families “do not have simple solutions.  There are good and bad school districts for special education.  Moving from one place to another may mean going to the back of a waiting list for Medicaid or some other program.  With access to behavioral treatments like applied behavior analysis, however, there is something we can do right now,” he said, in urging support for HR.2288.

Military members and their spouses at the briefing spoke of the difficulties they face accessing care and sufficient treatments for their children while on active duty, and their fears of losing all autism benefits when they retire.

Rachel Kenyon, the wife of a Connecticut Army Reserve platoon sergeant, related how her husband learned that their daughter had been diagnosed with autism while he was on his second tour of duty in Afghanistan.

“‘What does that mean?’ he said. ‘Please. Please tell me that she isn’t going to fall down the deep dark hole of autism.’  But I had no answers for him. I had no hope to offer.”

Jeremy Hilton, a Navy veteran whose wife serves in the Air Force, explained how frequent redeployments  and being stationed in areas with few available providers frustrated their efforts to provide care for their daughter.

Karen Driscoll, the wife of a Marine Corps helicopter pilot with 27 years of service, questioned how members of the military can focus on their mission when worried about uncertain care for their children with autism back home. “Our family is in debt because of TRICARE limitations on ABA therapy,” she said. “We are struggling. And my husband is a Colonel.”

Geri Dawson, Ph.D., chief science officer for Autism Speaks, provided background about autism, the rapid rise in prevalence and the special challenges faced by military families. “Studies show that…families of children with autism experience high levels of stress. For military families, this is compounded by the stresses associated with their service. When one parent is on active duty, the other may be facing these responsibilities alone. When a parent returns from active duty, their families may have the additional challenges of a parent with service-related mental or physical health problems.”

Leading up the briefing, Autism Speaks reached out to the military community to submit their stories by video. You can watch these compelling stories below. In addition, many others posted their comments through Facebook or in reply to blogs.

“There is almost nothing more stressful than the combination of military life and a child with special needs,” said Melanie Pinto-Garcia.

Janice Allmann McGreevy, posted: “The government needs to understand that our heroes are not automatons. They are subject to emotions. They need to be supported, and that means knowing that their families are not fighting nonsensical battles here at home.”

You can help our brave members of the military. Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here. Read more about this issue from the Huffington Post.


Ask your Member of Congress to support the Caring for Military Kids with Autism Act here. To learn more about military families and autism, visit the Autism Votes Military page here.

Troops in Contact

January 26, 2012 4 comments

The following blog post by an Army Sergeant Major deployed to Afghanistan, who must remain otherwise anonymous, demonstrates vividly the extraordinary challenges faced by our military members raising children with autism. Visit ‘Welcome to Stim City‘ to follow Mrs. Sergeant Major’s Blog and to read original post.

Military families will finally get a chance to tell their stories to Congress on Tuesday, January 31. Learn more here.

The satellite radio crackles to life; “Iron Gray TOC, this is Butcher 6 receiving indirect fire at this time”.  The radio operator answers the call; “This is Iron Gray TOC.  Roger, requesting air support at this time.”

Troops in Contact (yes that means what you think it does) were a daily occurrence as an Infantry Battalion Operations Sergeant Major in Afghanistan.  I had dealt with quite a few of these by February 2010 while working the Tactical Operations Center (TOC) in theater.  I had learned to deal with them in a cold, detached manner dispensing assets such as artillery, air support and helicopter support to assist in the fight against the Taliban.

So when I heard those words “[RM] has autism” through a poor overseas cellphone connection I was initially unmoved.  My training kicked in.  Clear the airspace and give me a fire mission of 155mm artillery

It wasn’t until I got back to my bunk after a 17-hour shift did the words sink in.  AUTISM!?  Artillery isn’t going to help that.

Maybe it was the distance from home or the 130-degree Afghanistan heat that removed me from the reality of what I had heard.  I just could not believe my little girl had autism.  Yes, she was born with multiple disabilities but autism was never on the radar.  Having a nephew on the spectrum, I knew the very broad and somewhat vague meaning of an autism diagnosis, but stumbling through one in a war zone left me asking what is autism?  Probably not a good idea to sidetrack my Intelligence Section asking them to research that one for me.  To say I was busy during this deployment would be a gross understatement.  The TOC was the heart of the Battalion’s operations and the heart never stopped beating.  However, I had managed to find a few spare moments to Google “autism” which confirmed my suspicion that artillery was not the kind of support needed to be called in this time around.  Instead, my Googling from Afghanistan proved that the primary assets for this mission would include treatments such as Applied Behavior Analysis (ABA), speech, occupational and physical therapies.  I assumed RM’s school would be all over that.  Evidently, as it turned out the school system in our town was not a “Friendly” element.

Never leave a fallen comrade.

Failure in my business is not an option and it would appear that my town was accepting defeat and leaving my little girl behind.  I was appalled.  Months went by with frequent calls from Mrs. SGM sharing the emotional and often fruitless results of meetings with the town, special education lawyers and one very rude town special education administrator.  It began to affect my performance.  I struggled to focus on my daily responsibilities and at times had to force the issue of autism out of my mind.  Staying focused meant ignoring my family so that I didn’t get a soldier killed in theater.

I decided to weigh in on the issue with the town.  Lucky were the town personnel who were failing my child that were out of range of my artillery support.  I think one of the frustrating things for me was the inability to affect how the fight with the town was going from Afghanistan.  Mrs. SGM gave updates almost daily. I cannot take credit for the battle that was fought and won in regards to getting RM her required therapies at an outplacement school.  Mrs. SGM led that assault and is now deep in the trenches to change TRICARE military insurance to make autism benefits accessible to all dependents as standard care.  Doing so will not take the shock, fear and disbelief out of receiving an autism diagnosis, but it will help diminish the confusion, frustration and roadblocks to success in getting our kids what they need.

TRICARE should be like Combat Support.  It should be there when you need it with no questions asked or forms to fill out and should be ready to provide cover for all Troops in Contact including our precious military children with autism.

Military Families: Let Congress Hear Your Voice!

January 25, 2012 1 comment

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

December 27, 2011 10 comments

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 AB)

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?

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.

Autism Speaks Recognizes Pearl Harbor Day and our Military Families

December 7, 2011 4 comments


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!

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!


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