Autism Speaks Hails Landmark Federal Decision Calling Key Autism Therapy a ‘Medical’ Service Eligible for Insurance

Autism Speaks Hails Landmark Federal Decision Calling Key Autism Therapy a ‘Medical’ Service Eligible for Insurance, Autism Votes, An Autism Speaks™ Initiative, May 30, 2012

Indiana Resource Center for Autism (IRCA)

The IRCA “conducts training, consultations, engages in research, and disseminates information to build local community capacity to support children and adults on the autism spectrum.” Website resources include articles, visual supports, workshop and event listings, and services available in the state.

Autism Society of Indiana (ASI)

The ASI vision is to be “a leading resource in Indiana for connecting people who live with autism, and those who care about them, with resources, support, advocacy and information tailored to their unique needs. ASI strives to create communities throughout the state in which people on the autism spectrum and their families are empowered, supported and fully embraced by their community.”

Insurance Advocacy Resource Center (IARC)

The Arc Insurance Advocacy Resource Center (IARC) helps “families of a loved one with a developmental disability navigate their private insurance policies and increase knowledge of basic health insurance issues, including the Affordable Care Act,” with a commitment to “all people with intellectual and developmental disabilities realizing their goals of learning, living, working and fully participating in the community.”

About Special Kids (ASK)

ASK is an Indiana-based parent-to-parent organization that works throughout the state to “give support, answer questions and provide information and resources” to families with special-needs children. Their staff parent liaisons, who are parents of special needs children and extensively trained, help families “anticipate child and family needs, identify appropriate resources, and access community systems to help them meet the needs of their children.”

Meet the Little Star clinical team at our May 3 Newburgh Center open house!

Little Star is proud to invite the community and prospective Little Star parents to tour our newest center in Newburgh.

On Wednesday, May 3, from 6 p.m. to 7:30 p.m., we welcome you to come check out our latest ABA therapy center, meet our clinical team and learn how you can enroll your child to be a part of the Little Star family.

You can find us at 3777 Haley Dr., Newburgh 47630.

Have questions? Please direct to them to our family services director, Victoria Blessing-Wade, at 317-249-2242 or [email protected].

We can’t wait to meet you!

Former Autism Speaks leader joins Little Star Center

Dan Unumb, former executive director of the Autism Speaks Legal Resource Center, is now a part-time contractor working in partnership with Little Star Center.

Dan is advocating for families at Little Star Center and throughout the state as they face legal challenges with insurance coverage. He also is in the development stages of a new Autism Legal Resource Center to support families impacted by autism across the country. Dan and his wife, Lorri, have a son, Ryan, who is impacted by autism. Dan is passionate about his work with Little Star Center and long-term goal to create a national Legal Resource Center. Read on to learn more about Dan’s work.

What attracted you to joining Little Star Center? Innovative and talented personnel. Mary (Rosswurm) has great vision and Tim (Courtney) has expertise. Everyone has a commitment to quality services and wanting to do more. I am grateful for the Board of Directors  at Little Star Center for their foresight in ensuring that the Autism Resource Center continues on now that Autism Speaks has decided to discontinue it.

What will be your primary role for Little Star Center? To provide legal analysis of autism treatment coverage issues and legislation and consult with clinicians to be sure that families do not face undue barriers to their treatment or limitations to their treatment that are not allowed under their insurance plan.

How did you get into this field of work? My 15-year-old son, Ryan, was diagnosed with autism at the age of 2. At the time, I was an attorney with the U.S. Department of Justice. While my wife, Lorri, and I had great insurance, we found that it did not cover ABA therapy, even though every autism expert recommended it.

Lorri and I literally worked to pay for ABA therapy for Ryan. It’s basically you, a checkbook and a therapist. We sold our house and moved to South Carolina to be near family and have a home that was less expensive. When we took a breath, we realized ABA therapy is medically necessary and there should be insurance coverage – and there should be insurance coverage to pay for it.

Dan with his son, Ryan, age 15, who was diagnosed with autism at age 2.

We found a clause under Medicaid and started to work on getting coverage in South Carolina. We formed groups, pooled our money and met with legislators. After we got a bill through both the house and the senate in South Carolina, the governor vetoed it. This was in 2007. We got people to rally at the last minute to get the veto overwritten. This bill is now known as Ryan’s Law.

Since that time, we have created a national summit where professionals come together to address various laws and insurance coverage requirements. I ended up working for Autism Speaks, where I was the executive director of the Legal Resource Center until it was discontinued late last year. Lorri continues to serve as vice president of government of affairs.

What will the legal resource center provide to families when it is established? The benefits will be direct and indirect. We will have an educational emphasis where we educate and train other lawyers in this area. We will provide resources for parents to help them understand what they can do on their own behalf and offer them a broad network of attorneys in which they can use (for insurance issues).

What do you think is the biggest challenge facing families seeking ongoing ABA therapy for their child with autism? The healthcare law and what is going to happen nationally with Medicaid and private insurance will impact all of us. Families need the tools and rights to ensure coverage for this medically necessary condition. It will be important to have a state law mandate that includes broad coverage.

What do you enjoy most about serving families affected by autism? Everyone’s path is different and I appreciate that more and more—from behavior issues to non-verbal challenges. I feel a kinship with these parents. I enjoy the impact we can make with our advocacy work. It advances the ball. It will have a lifelong impact for the children directly involved and for their families and future generations.

Establishing good sleep habits for children with autism

By Dr. Breanne Hartley, BCBA-D
Senior Clinical Director

Approximately 25 percent of children have sleep problems. For children with autism, this percentage significantly increases to approximately 45-80 percent.  It is extremely important for all children to get proper rest. A child who is not well rested will often demonstrate irritability, problem behavior, and potentially impaired academic performance.

One of the most frequent sleep problems that children both with and without a diagnosis of autism have is onset latency, which is when a child has trouble falling asleep. It can often be even more difficult for your child to fall asleep in the summer when the days are longer and the nights are brighter. Some strategies to help decrease the time it takes for children with autism to fall asleep are:

Establish a bedtime routine
Start and maintain a regular bedtime, preceded by several calming activities that occur at the same time each night. For example, coloring from 7:30-7:45 p.m., bath from 7:45-8:15 p.m., read books from 8:15-8:30 p.m., bedtime at 8:30 p.m.

Limit physical activity
Physical activity is a must for healthy children. However, engaging in physical activity too close to a planned bedtime may interfere with falling asleep quickly. Consequently, encourage less rigorous activities closer to bedtime such as reading books, playing with blocks, arts and crafts, watching a movie, or playing board games.

Eliminate naps
One reason your child may not be falling asleep quickly is that he or she may not be tired. If your child is dependent on a nap during the day, begin gradually decreasing the length of that day-time nap. For example, if your child is accustomed to a two-hour nap, begin waking your child from that nap about 10-15 minutes earlier each week. This will allow for a transition away from napping in approximately two months.

Limit caffeine
It is no surprise that caffeine is a stimulant and should, therefore, be limited prior to sleep. Sodas are typically culprits of housing enough caffeine to keep your little ones awake, but also keep in mind that chocolate also contains caffeine. Therefore, limiting chocolate and foods that contains chocolate (like the summer favorite, chocolate ice cream) will be beneficial.

Reserve the bedroom for sleeping
Oftentimes, children’s bedrooms can serve a dual function as a playroom that houses many toys. Begin to reserve your child’s room solely for sleeping. Clearing out all toys and other distractions will help to establish the bedroom as a calm place that is kept for sleep.

Establish sleep expectations
It is common for children to get out of bed shortly after they are tucked in at night. Establish clear expectations so that your child understands he is not to get out of bed after bedtime. Resist the temptation to welcome your child into your bed to sleep for the night, as this may increase future instances of getting out of bed.

Faded bedtime
Another strategy is to keep your child awake until much later in the evening, past the time he typically falls asleep (for example, 11:30 p.m. versus 9 p.m.). This strategy helps a child fall asleep much more quickly because the child should be extremely tired. Then, gradually move bedtime up in small intervals of time (11:30 p.m., 11:15 p.m., 11 p.m., etc) until you reach a “reasonable” bedtime.