Tag: autism resources


May
2013

The Massachusetts Act Early Campaign: Because Early Identification is Important to Us

categories: Autism, Education, Family

Female and baby girl reading book, baby is pointing at bookThroughout the month of April, we’ve heard from members of the Massachusetts Act Early state team who have shared heartfelt stories about why identifying autism and other developmental disorders matters to them.

Who We Are

Our team is made up of parents, medical professionals, educators, autism resource specialists, human services program managers, public health practitioners, university faculty and many others.

We lead an interdisciplinary, collaborative statewide effort “to educate parents and professionals about healthy childhood development, early warning signs of autism and other developmental disorders, the importance of routine developmental screening and timely early intervention whenever there is a concern.”

What We Do

Our statewide coalition works to strengthen state and community systems for the early identification and intervention of children with signs of developmental disabilities, such as autism spectrum disorders.

The coalition envisions a future that uses a family-centered model that overcomes geographic, socioeconomic, cultural, and linguistic barriers to assure equal access to developmental screening for all children in the Commonwealth. This mission and vision drives every action Mass Act Early takes to make a critical difference in the lives of children and their families.

Our current goals include:

    1. Public outreach to increase awareness of autism spectrum and related disorders.
    2. Training for early childhood, health care, and educational professionals.
    3. Shortening the wait times between screening and diagnosis as well as diagnosis and intervention.
    4. Developing culturally competent autism screening materials and training curricula for early childhood educators, community health centers and pediatric practices across Massachusetts.

How We Do It

Our web site at www.maactearly.org  contains free downloadable materials about healthy developmental milestones in young children for families, early childhood professionals, and health care providers.

Most of these materials were developed by the Centers for Disease Control and Prevention (CDC). The CDC developed them for the national “Learn the Signs. Act Early” public awareness program, of which the MA Act Early initiative is the local state chapter.

Additionally, the CDC‘s online Autism Case Training (ACT) course covers identifying, diagnosing, and managing autism spectrum disorders.
There are three modules, which can be taken separately or together. They are based on real-life scenarios and include up-to-date information, illustrative videos, and pertinent references and resources.

Free continuing education credits (CME, CNE, and CEU) are available for each of the modules.

Our Priority: Cultural and Linguistic Equity in Massachusetts

The MA Act Early state team has set a priority of reducing early identification disparities for families who are from culturally, ethnically, and linguistically diverse backgrounds, particularly if their primary language is not English.

To that end, we have developed the “Considering Culture in Autism Screening” guide and toolkit which includes a clinician’s tips guide, a Massachusetts resource sheet “Referrals at a Glance”, and the validated M-CHAT screening tool in five languages. It also comes with instructions, a scoring sheet and the follow-up interview.

Make Early Identification Your Goal Too!

Visit the MA Act Early website often. “Like” us on Facebook and help spread the word!

Early identification may be important to any of us. It could be due to skyrocketing prevalence rates, a beloved family member living with an autism spectrum disorder, a sense of profound professional purpose to improve the quality of life or any number of other reasons.

Whatever raises your own concerns about early identification, please join us in making a lasting difference. Positive outcomes are within our reach!

About the AuthorElaine Gabovitch

Elaine Gabovitch, MPA serves as state team leader for the Massachusetts Act Early program and as one of 25 national ambassadors appointed by the Centers for Disease Control and Prevention (CDC) to promote the “Learn the Signs. Act Early.” public health program in Massachusetts. For more information, visit www.maactearly.org . She is also the Director of Family and Community Partnerships for the UMass Medical School-Eunice Kennedy Shriver Center, family faculty in the Shriver Center’s LEND program, and an instructor in the UMMS Department of Family Medicine & Community Health.


Apr
2013

Early Identification Makes a Difference: An Educator’s Perspective

categories: Autism, Family

ToddlerThis week we are pleased to introduce Jason Travers PhD, BCBA-D, an Assistant Professor of Special Education at the University of Massachusetts Amherst. Jason will share his personal experience with early identification and the impact it made on his life.

My Work Begins

I began my work in autism while studying for my Bachelor’s degree in Special Education at UNLV in 2000. I had quit a construction job to return to college and the decision was taking a financial toll on me and my new wife.

There were many fliers in the hallways of the College of Education requesting candidates to help with early intensive behavior intervention in home-based programs for children with autism. I figured it would be a great way to get some experience and make a little money.

Soon I was working for and with three families which included sons with autism. It was a decision that would come to define me as a professional.

Meeting Alex

Perhaps the most influential moment was my experience with Alex and his family. Alex had recently been diagnosed with autism when his parents contacted me about starting up an intervention program.

A couple of weeks later, I arrived at their home with a few other behavior therapists and an experienced consultant. The family was desperate for help and needed support.

For several months prior to our arrival, Alex struggled to communicate with his parents and relied primarily on inappropriate behavior to get his needs met. I could tell they were a loving family, but they were also unsure of what to do to improve the situation.

Beginning Our Treatment

I was eager to begin our effort and over the next couple of days we began teaching play, communication, and other behaviors. Initially I found it very challenging as Alex refused hand over hand prompting.

The other children I had been working with had established these skills before my arrival. I was unsure what to do and so were Alex’s parents.

The consultant, however, continued with the procedures and by the morning of the second day things had changed dramatically.

Making A Breakthrough

There were six of us in a small bedroom when Alex began to respond to our spoken directions. We spread around the room and took turns asking him to “come here.” We cheered every time he went to the person who called him and he loved our cheering.

A few minutes later he completed a puzzle, played with some blocks, and said “buh” to request bubbles. Alex’s parents were overcome with tears of joy as they felt they were witnessing nothing short of a miracle.

Just two days before their son was unable to answer to his name, had never “asked” for anything, and couldn’t follow simple directions. I was amazed at the quick transformation and still get emotional whenever I think about it.

Committing To Help

I was immediately convinced that day that I would base my career around autism and began planning accordingly. I continued to teach Alex for 9 months and documented his progress before leaving to start a job as a special education teacher.

During those months, Alex began speaking to communicate, drawing and writing, playing appropriately, and went to the movies and other places in the community with his family.

Goals for the Future

This experience was a defining moment in my life and has fueled my career. While working as a special educator for students with autism, I earned my Master’s degree in special education with an emphasis on autism and developmental disabilities. Eventually I earned a PhD in special education. I now conduct research and teach courses related to behavior analysis and autism at UMass Amherst.

After 13 years, the memory of those first days with Alex remains vivid and powerful. Alex and many other children like him have inspired my professional goal: to help all families affected by autism gain access to quality services that will allow their child to achieve their full potential.

Early identification and early intensive behavior intervention is critical to this goal and the reason why I am involved with Massachusetts Act Early.

About the author

Jason Travers, PhD, BCBA-D is an assistant professor of special education at the University of Massachusetts Amherst. He researches the efficacy of technology to prevent contextually inappropriate behavior and promote early literacy skills of learners with autism. Jason also investigates the disproportionate representation of diverse children with autism.


Apr
2013

One in a Million: A Physician’s Perspective

categories: Autism, Family

Baby-in-green-bathThis article is the next in our series on Early Identification and was written by Dr. Stephanie Blenner. Dr. Blenner is from Boston Medical Center and is a member of the MA Act Early Steering Committee. She is also a LEND alum.

Three in One Thousand

She had long hair and unyielding eyes. I was only a resident at the time, so I sat to the side while the attending physician told the mother that her child had something called autism.

He explained it was a neurodevelopmental disorder. When she asked what to do, he told her to spend time with her at home.

At 3, she was too young for school or formal intervention. When we left the room, he told me I was lucky to meet a child with autism because it was so rare.

One in Eighty-Eight

Over 15 years later, we see children with autism every day in our clinical program. We never tell families it is rare or that they should wait to intervene. Instead we talk about how common autism is, how many other families have sat in their shoes, and the importance of early intervention.

We do this in English, in Spanish, in Vietnamese, sometimes with both parents, sometimes with just the mother or another family member. As clinicians, we do this so often the packets of printed information for families need to be restocked weekly.

This is our job as health professionals, to assure children are screened, diagnosed and receive the intervention that can make such a difference.

One in Fifty

Autism awareness requires more than just describing what autism is, explaining that it is common and that early treatment is critical.

We also need to to let people know that while autism is all too common, children with autism are not.

That each is singularly unique and special. That the chance to identify a child with autism early means that, through intervention, their community will have a unique opportunity. They will be able to know and appreciate that child as possibly only those closest know them; as the individual behind the disorder.

In this way, as we work together on autism awareness, we remind ourselves why this work is important. That the most recent sobering 1 in 50 statistic belies what each of us privileged to do this work knows, that each child is more truly one in a million.


Apr
2013

Why Early Identification is Important to Me: A Parent’s Point of View

categories: Autism

Picture of a BabyThis month we are pleased to introduce Elaine Gabovitch, a respected professional in the field of disabilities. Elaine has many titles; State team leader, Faculty Member, and Director to name a few. Yet this month, she shares a personal view from one of her most important roles in life, parent of a child with autism.

It’s personal

Every year in April, people who care about autism observe and even celebrate Autism Awareness Month. One thing I personally celebrate is how far we’ve come in identifying autism spectrum disorders in young children.

It was 18 years ago when early identification became vitally important for our son. Back then, I didn’t know a thing about autism, but I knew our son wasn’t meeting his developmental milestones on time. When we shared our concerns with his pediatrician, he advised us to “wait and see.”

Instead, I self-referred to Early Intervention who evaluated my son and sent us to specialists. Soon he received a diagnosis, Early Identification services started, and our long trip forward began. Over time, I met other parents whose pediatricians also reassured them to “wait and see.”

It was a growing problem in need of a solution.

That was back in the 90’s, and while early identification has come a long way since then, it still has a long way to go with heightened public awareness.

It’s Prevalent

Only last year, the CDC estimated that every one in 88 children has an autism spectrum disorder. That’s one in every 54 boys and one in every 252 girls. This past month, a parent telephone survey study reported one in 50 children may be diagnosed on the spectrum.

That’s 2% of all children!

It’s Urgent

Early intervention works. The earlier the screening, the better the results for children and families. But for children who have families from diverse cultural and racial backgrounds, real disparities exist. We can and must do better.

By teaching all families about healthy developmental milestones and what to do when concerned, we can do better. And by training all pediatric clinicians about screening, we can change the conversation from “let’s wait and see,” to “let’s do a routine screen,” leveling the playing field for all children.

It’s Treatable

Take it from me, autism spectrum disorders are treatable. Over the years I have met many children with autism and their families and each has a different story to tell. Early intervention was a crucial part of those stories, as it helped beyond what those families could possibly have imagined at the time of diagnosis.

Identification is the key to getting help. Let’s build awareness here in Massachusetts by getting everyone on board through education, participation and identification.

Over the month of April, we’ll hear from other members of the Massachusetts Act Early state team about why early identification is important to them too.

About the authorElaine Gabovitch

Elaine Gabovitch, MPA is the Director of Family & Community Partnerships for the UMass Medical School-Eunice Kennedy Shriver Center, family faculty in the Shriver Center’s LEND program, and an instructor in the UMMS Department of Family Medicine & Community Health. She currently serves as state team leader for the Massachusetts Act Early program and as one of 25 national ambassadors appointed by the Centers for Disease Control and Prevention (CDC) to promote the “Learn the Signs. Act Early.” public health program in Massachusetts. For more information, visit the Massachusetts Act Early Web Site


Dec
2012

Dad vs. Man by Lou Melgarejo at Lou’s Land

categories: Autism

I first “met” Lou Melgarejo when someone forwarded me a link to his YouTube video about his daughter, Bianca and their journey into the world of autism. As a parent, I struggled mightily over the years every time someone said “tell me about your daughter?”, “what is autism?”, “why is it so hard for you?”, and other basic questions. Basic questions which I never felt I could adequately answer.Lou’s video answers these – clearly, powerfully, poignantly. So now, instead of trying to answer these questions, I just send them the  “Fixing” Autism – YouTube link.

I later had the pleasure of meeting Lou in person, and began to follow his blog. Amongst the wonderful posts, is one called “Dad vs. Man”. The title is self-explanatory, but it’s a topic that’s infrequently discussed, and one I know many fathers struggle with.

We are honored that Lou has shared this. We welcome your comments, and invite you to forward this to fathers, mothers, grandparents, and anyone who loves someone with autism. Thank you Lou.

 

Father and child

Being a dad doesn’t mean you can’t be a man. When you have a child with special needs, they need their dads to be as involved as possible. Being a dad makes you a BETTER man.

Some men feel that the two are mutually exclusive. Scratch that. Some women feel that way too, so I guess it is some PEOPLE feel that being a dad means you can’t be a man.

Why do I say this? I say this because to me it is almost like there is an opinion out there that a guy has to turn in his “Man Card” in order to be fully vested in their kids. By that I mean that they take part in and are an active participant in ALL of the day to day routines of their kid’s lives that their schedule allows.

It is a disturbing phenomenon that I see firsthand almost every day. In the vast majority of events, therapies and functions that I attend, I am one of the only guys if not the only man in the room. At first I chalked it up to my unusual work schedule; my days off are in the middle of the week which allow me to be really active in Bianca’s week. But I work nights when I do work, so I am able to participate in weekend activities as well… and again, I am in the minority by a LONG shot.

So how do we get more dads involved? What is it that allows some men the ability to be fully participatory, and others stand-offish providers? I am sure Freud would have a lot to say on that subject. I wish I could tell you why it is that I look at my kids and want to do everything with them, while other guys can’t wait to get out of the house and escape. All I can do is re-assure the other men out there that being an involved dad does not make you any less of a man.

Sometime I fear that when a person is moved by one of my blogs or videos, they build up a false impression of who I am and almost emasculate me. I think that is a natural reaction but I don’t want to portray myself as something I am not. Maybe by talking a little bit about who I am as an Autism Dad, other men may feel comfortable enough to become more active in their child’s life.

So let me tell you about myself. I am fiercely family-centric. I put my family before anything, but I also make certain that I allow time for myself. I have the incredible good fortune of working in sports entertainment television. So when I go to work, I take the “Autism Dad” hat off and go into full sports geek mode. I enjoy testosterone heavy debauchery. I love going out with my guy pals and doing guy things just like any other man. I have a horrible fantasy football team with a funny, but dirty name. We were winless this year… thanks Jamaal Charles! I am so glad I decided not to keep Frank Gore this year to go with one of the few every down backs in the NFL.

I enjoy going to bars with the guys, but I don’t drink like I used to when I didn’t have responsibilities or a 45 minute drive back home from where we would hang out. I love dirty comedians and humor that walks the edge and makes me squirm. I have a thick skin and can understand the difference between a joke and an insult. I am a HUGE Howard Stern fan and have listened to probably every show in its entirety for close to 15 years.

I make time for my heathen activities, but it is in moderation. You have to have balance, but when it comes to balancing a family, the scale has to tip largely in the families favor. I do nothing without thinking of my family first. They are what is important and help to define me as a human being and keep me grounded. Also, they NEED me.

Particularly when talking about kids on the spectrum, an active father is VITAL in their development. We are talking about kids that usually have socialization problems so they need every interaction they can get at any given moment. They need help in pulling themselves out of their isolation that is ASD.

I was never a great hitter in baseball, so I have no clue what it is like to hit a homerun. I have never experienced dunking a basketball. I can only imagine that being able to do either one of those feats makes you feel like a king. You know what gives me that same kind of juice? Receiving an unsolicited hug from my daughter, Bianca signing that she wants to eat or when she REALLY wants a particular thing to eat… asking for it, my daughter using the toilet and signing the word “potty”, and on the rare occasion that I get an “I love you” out of Bianca… forget about it. That is like winning the Super Bowl.

I know having a kid with special needs is tough on a man. We have to fight a million urges every day to put things right. We put enormous amounts of pressure on ourselves to fix things that we perceive to not be right. We deal with stress in a very different way than women. We aren’t talkative by nature and when we do talk to our other guy friends; it is rarely about something as deep as the tougher moments of raising a kid with autism or the like. We usually talk about (stand by for a shocker ladies) sports, women, more sports, jokes, entertainment, and did I say women and sports? So basically our conversations are knuckle-dragging, not-so-intellectual type stuff. We rarely vent our concerns and frustrations about the real challenges that we face in life. When I do bring something up about an issue or challenge to one of my closer friends, it is usually in a less than politically correct manner. We have the kind of relationship where subtext is completely understood, so I can joke about my life with him in ways that I can with nobody else. That is a vital relationship and helps to keep me sane.

If the man is not a “fixer” he might be a “provider type”. These dads are the types of guys that feel that the solution to the problem is to just work themselves to death providing for the family. This is good for the family from an economic perspective, but I have found in my observations that it is the least rewarding or impactful in terms of bonding with your children. Kids don’t really get that “daddy is gone because he loves you”. Kids just think that all the stuff in their house was free anyway. At least that is what they think during the most important years of development. Even if you try to explain the importance of money and how it is gained and used, if you were to ask your child would he/she rather have daddy go to work or stay home and play with them, I guarantee you the vast majority of the kids are going to choose the quality time with dad.

To be fair, many dads caught in the provider role share that sentiment. The problem is that they feel trapped and are convinced that the time away from the family and earing the paycheck are for the greater good of the familial unit.

I beg to differ.

Men are not the only ones responsible for perpetuating the checked-out dad. Wives have a bit to do with it as well. Whether it is that the wife feels like there is not an open line of communication to tell the father that she would like him to be more involved, or she thinks he has too much on his plate providing for the family, or she just enjoys cashing in the checks, many moms just accept the status quo as is without complaint. I encourage women to talk to their husbands and express your concerns. It may be difficult for the guy to understand, he may be defensive but if you perceive that he is not engaged enough in your child’s life you owe it not just to the child to inform his/her father… you owe it to the father as well.

One way not to approach your man if you feel he needs to be more engaged is by comparing him to dads around you that you see as being more vested. I am aware of it happening with other couples that we have interactions with and this does not go over well. In fact, it usually results in the man distancing himself even more. Just tell him what YOU need and what you believe your child needs. Honesty is key.

I really hope that something clicks and I start to see more men at functions and taking their kids to therapy. It is going to be 2012 and I think we can get involved without it hurting our street cred. Plus it would be nice to be able to vent to another guy about how much Jamaal Charles’ torn ACL stinks in a keeper league, how funny Mike Judge was on the Stern Show, or who I would rather be stuck on a deserted island with for all of eternity, Salma Hayek or Sofia Vergara.

It isn’t Dad vs. Man… it is Dad AND Man.
To read more blogs by Lou Melgarejo go to https://lous-land.blogspot.com

 


Apr
2012

INDEX Provides Resources to Individuals with Autism in Massachusetts

categories: Autism, Education

Multicolored Puzzle Piece Symbolizing Autism Awareness

 

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. 

Other Helpful Links

New England INDEX  also has an extensive database of disability resources for individuals with ASD; check out our MNIP Autism Fact Sheet for an overview of information.

Autism Speaks also offers a listing of autism resources in Massachusetts  listed by age group & categories.

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.

Apr
2012

Autism Insurance – One Family’s Story

categories: Autism

UMass lit up blue

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.


Apr
2012

Autism-Got insurance?

categories: Autism

Gov Patrick signing Autism Insurance bill

 

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 effortAmy Weinstock speaking at signing of the Autism Insurance bill to pass Massachusetts’ Autism Insurance Law.

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