Archive for the ‘Advocacy’ Category

Insurance Coverage for Autism Related Services

Thursday, February 4th, 2010
Help Make Autism Insurance Coverage a Reality in

New York State

Bills have been proposed in both the New York State Assembly (A.6888-B) and New York State Senate (S.6123), which would provide better coverage for the diagnosis and treatment of individuals with autism in New York State.

The bills propose amendments to the Insurance Law to provide coverage in every policy, group policy, and/or medical indemnity, hospital service or health service corporation, for the diagnosis and treatment of autism spectrum disorders.  They further provide that treatment of autism spectrum disorders shall include psychiatric care, including direct, consultative and diagnostic services; habilitative or rehabilitative care; pediatric and developmental pediatric care; anesthesiological care and anesthetic services; neurological care; gastroenterogical care; endocrinological care, including behavioral, speech, occupational and physical therapies as well as social skills education training.

Historically, autism has been misidentified as a psychiatric disorder, and has been excluded from coverage by health insurance carriers.  New York State Insurance Law was significantly changed in 2006, by requiring insurers to provide all medical services to people with autism that would be provided to people without autism.  This law has helped ameliorate the problem, but it does not specify health care services specific to the treatment and diagnosis of autism.

Please support A.6888-B and S.6123 by contacting your local representatives, Assemblymember Koon and Senator Huntley.

CONTACT INFORMATION
A brief letter, fax or telephone call to you local representatives in support of these bills could help ensure that our friends, family, and children with autism are properly diagnosed and provided with the treatments they so desperately need…

  • Assemblyman Koon :( 518) 455-5784; Address: Legislative Office Building, Room 643, Albany, New York 12248.
  • Senator Shirley Huntley :( 518) 455-3531; Fax: (518) 426-6859; Address: Legislative Office Building, Room 803, Albany, New York 12248.
  • Your own Assembly Member.  To find your Assembly member, call (518) 455-4100 or go to www.assembly.state.ny.us/mem/
  • Your own State Senator.  To find your State Senator, call (518) 455-2800 or go to www.nysenate.gov.
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Seinfeld and Bruce raising More than Awareness for Autism

Thursday, November 12th, 2009

Pitch in $100 to support our work on behalf of those affected by autism by 11:59 PM EST on Friday, Nov. 13, and you could be chosen to receive two complimentary tickets to the Concert for Autism Speaks on Nov. 17.

Contribute now for a chance to win tickets to see Seinfeld and Springsteen

http://action.autismspeaks.org/Donate100

It’s not often that you’ll find Jerry Seinfeld, the Boss, and a Beltway star like Meet the Press’s David Gregory under one roof.

But they’ll all join us on Nov. 17 at Carnegie Hall to celebrate the movement we’ve built together to change the future for all who struggle with autism spectrum disorders.

In support of that movement and our shared goal, can you pitch in now?

http://action.autismspeaks.org/Donate100

By donating today, you will support our work to fund biomedical research on autism spectrum disorders, helping people affected by them live better lives.

Side benefit: you could join us as a special guest on the 17th as we laugh, rock and cheer at Carnegie Hall.

Thank you for all that you do.

Hope to see you on the 17th,

Mark Roithmayr
President, Autism Speaks

P.S. — If you want to be sure not to miss what’s certain to be an unforgettable night, purchase a ticket for the Concert for Autism Speaks here:

http://action.autismspeaks.org/Nov17Tickets

Recruit Autistics for the right job and its Magic

Thursday, October 1st, 2009

Finally a positive article about Autism and why not, the attention, focus and commitment to detail found in most Autistics would make anybody a more productive worker, and they probably wont gossip too much either.

Radical Ideas from

Thorkil Sonne: Recruit Autistics

By Drake Bennett

Most occupations require people skills. But for some, a preternatural capacity for concentration and near-total recall matter more. Those jobs, entrepreneur Thorkil Sonne says, could use a little autism.

Sonne reached this conclusion six years ago, after his youngest son was diagnosed with the mysterious developmental disorder. “At first I was in agony and despair,” he recalls. “Then came the thought of what happens when he grows up.”

In Sonne’s native Denmark, as elsewhere, autistics are typically considered unemployable. But Sonne worked in IT, a field more suited to people with autism and related conditions like Asperger’s syndrome. “As a general view, they have excellent memory and strong attention to detail. They are persistent and good at following structures and routines,” he says. In other words, they’re born software engineers.

In 2004, Sonne quit his job at a telecom firm and founded Specialisterne (Danish for “Specialists”), an IT consultancy that hires mostly people with autism-spectrum disorders. Its nearly 60 consultants ferret out software errors for companies like Microsoft and Cisco Systems. Recently, the firm has expanded into other detail-centered work-like keeping track of Denmark’s fiber-optic network, so crews laying new lines don’t accidentally cut old ones.  Read more at WIRED.com

New Study Sheds New Light on Parents’ Life-Long Fears, Anxieties and Critical Supports Needed to Raise a Child with Autism

Friday, August 21st, 2009

With autism, parents have extreme concerns about future independence, finances and isolation, compared to more common worries of parents with typically developing children

(Washington, December 16, 2008) — Parents of children with autism are struggling with a host of worries that impact every aspect of their lives, and are particularly fearful that their family will lack the life-long supports needed to address the significant challenges of autism, according to a new study released today by Easter Seals and made possible by MassMutual Financial Group.

Easter Seals’ Living with Autism Study results reveal parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal connections, and employment and housing opportunities — and with good reason.

Autism is a growing public health crisis, with millions of families desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need, especially for adults with autism.

“The study quantifies what we’ve heard anecdotally over the years,” says Patricia Wright, Ph.D., MPH, Easter Seals national director, autism services. “The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need to be independent.”

Study Shows Parents’ Hope for Independence . . . Financial and Otherwise
The nationwide study provides new insight into the ongoing challenges facing individuals and families living with autism, particularly their concerns about the future. It’s unique in that it closely considers and quantifies the very real concerns of parents of children with autism in relation to parents of typically developing children.

A sampling of the findings:

  • Parents of children living with autism are very concerned about their children fitting into society, with very few feeling their children will be able to:
    • Make his or her own life decisions (14% compared to 65% of parents with typically developing children)
    • Have friends in the community (17% compared to 57% of typical parents)
    • Have a spouse or life partner (9% compared to 51% of typical parents)
    • Be valued by their community (18% compared to 50% of typical parents)
    • Participate in recreational activities (20% compared to 50% of typical parents)
  • Children with autism also are less likely than their typically developing peers to have bank accounts (37% vs. 55%) and use electronic products like cell phones (9% vs. 41%) or MP3 players (23% vs. 49%) — all tools of mainstream society.
  • Many parents of children with autism report they’re “financially drowning,” with concerns for their children’s financial independence seeming to far surpass the worries of typical parents. Seventy-four percent of parents of children with autism fear their children will not have enough financial support after they die, while only 18% of typical parents share this fear.

    They also express extreme financial strains and costs associated with caring for a child with autism, with more than half stating that the cost of caring for my child:

    • Drains my family’s current financial resources (52% compared to 13% of typical parents)
    • Will drain my family’s future finances (50% compared to 10% of typical parents)
    • Will cause me to fall short of cash during retirement (54% compared to 13% of typical parents)
  • Key to adult independence is employment, yet only 24% of teenagers with autism have looked for a job, compared to 77% of their typically developing peers. And 76% of parents of children with autism are concerned about their child’s future employment, when only 35% of typical parents share this fear.

“Families living with autism face so many challenges on a daily basis,” says John Chandler, senior vice president and chief marketing officer of MassMutual’s U.S. Insurance Group. “But this study has really brought home for us how much stress they face when it comes to their current financial situation, the future of their child with autism, their other children and their own retirement. Our hundreds of Special Care Planners across the country are in a great position to help make at least this part of their struggle easier.”

As an Easter Seals corporate partner and the study sponsor, MassMutual is committed to serving people living with autism and other disabilities through its exclusive SpecialCareSM program, an innovative solution that gives families with individuals with special needs access to information, specialists, and financial strategies that can help improve their quality of life.

Easter Seals worked with Harris Interactive, and in cooperation with the Autism Society of America, to conduct the Living with Autism Study and survey 1,652 parents of children who have autism and 917 parents of typically developing children about daily life, relationships, independence, education, housing, employment, finances and healthcare.*

Study Findings to Drive Solutions
“Easter Seals strives to make data-based-decisions,” Wright says. “With this study, the disparities that parents of typically developing children and parents of children with autism experience can now be shared via solid numbers.”

Easter Seals will use the study results to raise awareness of and advocate for the life-long services millions of families living with autism desperately need — including school to work transitions, employment support, residential and community support, and financial planning.

“For parents of kids with autism, there are no simple answers,” adds Wright. “There is an urgent need for increased funding and services — especially for adults with autism. Easter Seals wants to help change all of this and make a difference for families living with autism today.”

*Methodology
This Easter Seals’ Living with Autism Study was conducted online within the United States by Harris Interactive on behalf of Easter Seals between June 16 and July 17, 2008 among 1,652 parents of children age 30 and under who have autism and 917 parents of typically developing children age 30 and under. No estimates of theoretical sampling error can be calculated; a full methodology is available.

About Easter Seals
Autism is a lifelong disability that affects the way a person’s brain functions, involving challenges in communication, social skills, and behaviors. While there is no known cause or cure, autism is treatable and people with autism can — and do — lead meaningful lives. Easter Seals is the leading non-profit provider of services for individuals with autism, developmental disabilities, physical disabilities and other special needs. For nearly 90 years, we have been offering help and hope to children and adults living with disabilities, and to the families who love them. Through therapy, training, education and support services, Easter Seals creates life-changing solutions so that people with disabilities can live, learn, work and play. Visit www.easterseals.com or http://www.actforautism.org/ to learn more about autism, find services at an Easter Seals near you, or help change the lives of people living with autism by becoming a donor or volunteer.

About Harris Interactive®
Harris Interactive is a global leader in custom market research. With a long and rich history in multimodal research that is powered by our science and technology, we assist clients in achieving business results. Harris Interactive serves clients globally through our North American, European and Asian offices and a network of independent market research firms. For more information, please visit http://www.harrisinteractive.com/.

About MassMutual Financial Group
MassMutual is a leader in helping people with disabilities and other special needs and their families through its exclusive SpecialCareSM Program, an innovative outreach initiative that provides access to information, specialists, and financial solutions that can help improve the quality of life for people with disabilities and other special needs and their families and caregivers. For more information and resources on autism, go to www.massmutual.com/autism.

MassMutual Financial Group is a marketing name for Massachusetts Mutual Life Insurance Company (MassMutual) and its affiliated companies and sales representatives. MassMutual and its subsidiaries had more than $500 billion in assets under management at year-end 2007. Assets under management include assets and certain external investment funds managed by MassMutual’s subsidiaries. Founded in 1851, MassMutual is a mutually owned financial protection, accumulation and income management company headquartered in Springfield, Mass. MassMutual’s major affiliates include: OppenheimerFunds, Inc.; Babson Capital Management LLC; Baring Asset Management Limited; Cornerstone Real Estate Advisers LLC; The First Mercantile Trust Company; MML Investors Services, Inc., member FINRA and SIPC (http://www.finra.org/ and http://www.sipc.org/); MassMutual International LLC and The MassMutual Trust Company, FSB. MassMutual is on the Internet at http://www.massmutual.com/.

About the Autism Society of America (ASA)
ASA, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy. For more information, visit http://www.autism-society.org/.

Why isnt Autism covered by insurance?

Thursday, May 28th, 2009

We recently we received this email from Autism Speaks, an organization that is doing great job these days with Autism Awareness. The email speaks of the promise of Autism Treatments being covered by insurance. I say-Why stop at New York State? Why not make it nationwide or worldwide?  Governor Plain, Senator McCain since it was part of your platform, why does the support you promised have to end with the election? President Obama and VP Biden, a good idea is a good idea. We can all do more to be supportive of Autism sufferers as we should for anyone suffering with a disease or sickness.

But seriously, can anyone imagine the cost of cancer care, surgery and treatments,  not being covered by insurance? Hundreds of thousands of dollars a month or more that I am aware of and I am 1000000% thrilled that it is mostly 100% covered by insurance. That is how it should be in the medical system we have today.

Given the high degree of clinical research data showing how treatments can help benefit Autism sufferers, essentially at every age and stage of life but especially before the age of 3, 7 and 12 years of age. The time has come to get serious about Autism and insurance companies need to step up and begin covering for the treatment of Autism, and government needs to somehow impose on either the insurance comanies or themselves a retro-active refund of coverage or tax credit for prior years spending because $20, $30, $50,000 a year or more on treatment don’t last too long even while making a very healthy six figure income .  We insure our health, not against specific diseases- at least that’s what I’ve always thought I was buying into with insurance -does anyone know how that works? Send me a comment..  Does this mean a child with Autism will never be able to be covered by insurance because of a pre-existing condition that has a real chance of being reversed with proper treatment coverage in the first place? Ok you getthe point..

Perhaps the folks I mention above need to watch the movie Sicko by Michael Moore, because it seems to me a lot of people are getting it right when it comes to medical care and it isn’t in the United States of America- which few love more than I.

Here is the email. Get Involved and Take Care.

Imagine a time when autism treatment is covered by insurance. That dream can be a reality for New York state.

Thank you! For 10 years, the autism community has been coming together for Autism Speaks. This year alone over 50,000 strong will unite in Walk Now for Autism Speaks in Long Island, New York City, Rochester, Central New York, Capital Region, Sullivan County, Greater Hudson Valley and Westchester County – raising money and awareness for Autism Speaks, the world’s largest autism advocacy organization in the world. Your time, talent, resources and donations help move ground-breaking research forward and to advance the autism cause. Dollars raised through our Walk Now for Autism Speaks program are the fuel for all of our efforts!

New York State’s time is NOW for insurance legislation. New York has the ability to pass insurance reform this session.

Over the next few weeks we will be in a critical time for this legislation and we will be asking for all of New York state to take action – calling and emailing their senators and assembly members.

“OPT IN” for news about this legislations and action alerts about how you can help. Sign up for Autism Votes today at www.autismvotes.org. If you don’t register you will not receive the action alerts.

Be part of history! Have your voice heard in Albany. Help make it possible for families to get coverage for autism.

The time for this legislation is now – and you can make it happen. You have already taken the first step of being part of our grassroots efforts in New York state by participating or supporting our Walk program. Take the next step and help the almost 130,000 families in New York state who live with autism every day get the coverage they deserve.

UPDATE – It was great to see Sarah Palin marching alongside others at the Autism Walk in Westchester, NY this weekend. Keep it up Sarah, our children need high level partners and supporters in government.

ATTN New Yorkers: State Assembly to Hold Hearing on Autism Services

Friday, December 12th, 2008

The Assembly Standing Committee on Insurance will hold a Public Hearing regarding the Treatment of Autism Spectrum Disorder on Thursday, December 18, 2008 at 10am to discuss the management of Autism in New York State with specific attention to early diagnosis and intervention. The meeting will be held in Chancellor’s Hall in the State Education Building at 89 Washington Avenue (use the entrance on Hawk Street) in Albany.

During the hearing, testimony will be presented to evaluate programs and treatment options that already exist in this state for children with ASD, as well as evaluating what can be done to improve their living standards and assist families and caregivers with their many burdens, including financial, of dealing with Autism Spectrum Disorders.

This is the perfect opportunity for our community to demonstrate to the NYS Assembly that the autism community is dedicated to these issues – enough to show up in the winter cold and at holiday time – it’s just that important!

HOW CAN YOU HELP?

1) DRIVE TO ALBANY! This is a great chance for our community to demonstrate how important this issue is moving forward with our physical presence.  Please plan on attending.  We want to PACK THE ROOM!

2)  FORWARD THIS EMAIL FAR AND WIDE! Again, we want to pack the room so send this to anyone that you think could attend: neighbors, coworkers, family members, your child’s therapists!

3) REGISTER TO STAY INFORMED! If you haven’t signed up already, please visit the Autism Votes website and sign up to receive action alerts as we move forward on autism insurance reform in the state of New York!

Thank you for your help in this effort,

Your New York State Chapter Advocacy Chairs:

Jim Fahey, CAC – All New York State
NewYorkCAC@autismspeaks.org

Julie Rotunno, CAC – New York City
NYCCAC@autismspeaks.org

Julie Buick, CAC – Rochester
RochesterCAC@autismspeaks.org

Sharan DePalma, CAC – Westchester
WestchesterCAC@autismspeaks.org