April, 2012 - INDEX

Month: April 2012

25
Apr
2012

INDEX Provides Resources to Individuals with Autism in Massachusetts

This month we were fortunate to hear from Amy Weinstock , Director of the Autism Insurance Resource Center, (AIRC) at New England INDEX. The Center provides information and support to self-advocates, family members, providers, employers and educators on issues related to medical insurance for autism treatment.

Amy spearheaded the passage of , “An Act Relative to Insurance Coverage for Autism” (ARICA), which took effect in Massachusetts on January 1, 2011. Since passage, there have been many questions relating to the implementation of the law, including who is eligible, what treatments are covered and how to access coverage.

For information on any issues concerning insurance coverage for autism-related treatments & services, call AIRC at (800) 642-0249 or email at info@disabilityinfo.org. Be sure to check out Amy Weinstock’s monthly webinars, FAQs and to sign up for the insurance updates.

Autism Support

Autism Support Centers
The Autism Support Centers are a great starting point for parents to get guidance and support with information about autism, services in their area, and future trainings. Many of the staff are parents themselves, bringing a personal perspective.
Advocates for Autism of Massachusetts (AFAM)
AFAM is dedicated to improving and expanding the funding and resources for Massachusetts citizens with an ASD by educating and informing legislators and policy-makers.
Asperger’s Association of New England (AANE)
A resource and support center serving the Boston / New England area for individuals with Asperger Syndrome, high-functioning autism and their families. AANE website has a database of support groups, family grants, specialized programs, conferences, trainings and more. For more information and how AANE can help you, call 617-393-3824.

18
Apr
2012

Autism Insurance – One Family’s Story

categories: Autism

It’s Monday, April 2 and I’m waiting to deliver remarks at the “Light it Up Blue” celebration at UMass Medical School. A mom approaches me with her son and I ask him how he’s doing.

“Great” he replies with a big smile and, good eye contact. I ask him how old he is and he proudly holds up four fingers. And then he says, “When I am thirteen I want to be a teacher like Jean”, (his ABA therapist). Then his mother stepped up to me and quietly said, “I want you to know how grateful I am. You passed the autism insurance law a month before my son, (the future ABA therapist!), was diagnosed with autism. It has made such a difference in our lives”.

I reflected back to the signing of the insurance law at Fenway Park, when I said this victory was not just for the crowds assembled, but for the families who would be sitting in a doctor’s office the following day and the next. . . . receiving the diagnosis that had pierced through so many of the hearts and souls of the parents in the stands that day.

And here was that mom I’d spoken of, right in front of me, with her child who had benefited from the treatments we fought so hard for him to be able to access.

At the Autism Insurance Resource Center, the calls keep coming

In our first year, the Autism Insurance Resource Center, received over 600 calls. And as word gets around that we are there to help, the calls continue to increase.

They are people needing information; help in understanding the law; advice about dealing with insurance denials or problems with finding providers. On bad days, I feel like we should answer the phone “complaint central”. But frankly, we’re there for the problems. We help people access coverage. We help them navigate the system.

Insurance is complicated. Insurance for treatment like ABA, that’s never been covered, is even more complicated. It’s a lot of square pegs, round holes, and sometimes brick walls. But we work with people. If it’s a square peg, we try to round the edges. If it’s a brick wall, we look for a way around it.

We try to help. We think we do a good job. And when I meet a little boy who holds up four fingers and tells me he’s going to grow up to be a therapist, I know we do.

To learn more about resources for individuals on the spectrum, join us for next week’s blog. We have a lot of information we’d like to share.

13
Apr
2012

Autism-Got insurance?

categories: Autism

Twelve years ago our daughter was diagnosed with autism. At the time, the doctor explained to us that autism was a neurological condition, and there was effective treatment that could help her. We had good health insurance and we’d always paid our premiums, so we assumed that insurance would pay for the prescribed treatment.

Because when your child has a serious medical condition which can be effectively treated, that is what they do, right? That is the whole purpose of insurance, no? If she had cancer, insurance would cover chemotherapy. If she had a brain tumor, insurance would cover the surgery.

But our daughter had autism. And we were about to discover what so many autism parents already knew – that having even the most comprehensive insurance plan meant nothing in the face of autism.

got insurance? not if you have autism!

It wasn’t right. It had to change. And though my knowledge of the system consisted of an insurance card, a sick child, and no coverage for her treatment, I decided to do something about it.

As Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM), I organized a grassroots effort to pass legislation requiring health insurance to cover autism treatments. Over several years, our small group of parents, armed with no more than an idea and a passionate determination, slowly made our way… from a legislator’s office in the basement of the State House to Fenway Park, we had the honor of watching Governor Patrick sign our bill into law in front of hundreds of people.

got insurance? now what?

We celebrated the victory. We had a new law. It was one of the strongest in the country. But even as the ink dried, we knew there was still work to be done. Because autism treatment had not historically been covered by insurance, the entire community –from families to professionals- all had questions about how the new law would work.

Recognizing this tremendous need for information and support, UMass Medical School established the Autism Insurance Resource Center at New England INDEX last year. I am honored to direct the Center, and proud of the work that we do in educating the community about autism insurance laws and in helping people with autism obtain coverage.

I wish I could say that our work is done; unfortunately true systemic change is slow. But we’ve proven that a small group of parents –armed with no more than an idea and a passion to do what is right – can make it happen.

Next week we will discuss how the law is working and how the Center is helping the Autism Community access coverage under the law.

got insurance? yes we do!

About the author

Amy Weinstock is the Director of the Autism Insurance Resource Center at New England INDEX. She served as Chair of the Insurance Committee of Advocates for Autism of Massachusetts (AFAM) and led the grassroots effort to pass Massachusetts’ Autism Insurance Law.