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The Arc of Indiana E-Newsletter

Indiana Special Needs Magazine – June 2022

Practical Pointers for Medical Professionals

DDRS has contracted with The Arc of Indiana to provide a series of webinars for case managers and providers of home and community based Medicaid Waiver services under the Family Supports Waiver and Community Integration and Habilitation (CIH) Waiver. Case managers and providers are encouraged to register for each webinar. However, webinars will be recorded and available at The Arc of Indiana Academy for viewing at a later date.

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Welcome to the Autism Acceptance Month! This month is dedicated to not only awareness, but acceptance, action, inclusion and celebration. Continue to stay connected and check out all the latest news at the Autism Society of Indiana. Our mission is to create connections, empowering everyone in the Autism community with the resources needed to live fully. Let us walk alongside you this year because The Connection is YOU! If you have any questions or concerns please reply to the sender and/or send an email directly to mlove@inautism.org.

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It was back in June 2018 that Autism Eye first covered the campaign that Paula McGowan has led for health professionals to undergo compulsory training in autism and learning disabilities. It followed the death of her 18-year-old son, Oliver, after doctors dismissed the family’s warnings and gave him antipsychotic medication, despite medical records showing he had an intolerance to such drugs.

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Do your patients with ASD have trouble with toilet training? We created an infographic to help with the key ideas and strategies to help caregivers with toilet training. Online self-paced training on toilet training is coming out next month!

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The Supplemental Security Income (SSI) program provides critical support for millions of people with disabilities and their families to be able to afford necessities like food and rent. But SSI has many rules that make it hard for people to save money and get out of poverty.

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It’s been a very busy time for all of us at ARI with the resumption of our in-person scientific think tank, live online webinars, the facilitation of an expert panel for families and ASD individuals experiencing trauma in Ukraine, and the coordination of virtual presentations by a contingent of U.S. experts for the annual Moscow autism conference.

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Tuesday, May 3rd is Primary Election Day. Exercise your right to vote! Know your rights!

• You have the right to vote privately and independently.
• You have the right to vote, even if you have a guardian.
• You have the right to have assistance to vote.
  • Assistance must be requested before you enter the voting booth.
  • You may receive assistance from poll workers or a family member,
    friend, or another person of your choosing.
  • You may not receive assistance from your employer or union representative.
• You have the right to an accessible polling location. All locations must have at least one accessible voting machine and the facility, including entrances and pathways, must be accessible.

Find your polling place, check your ballot, and more at IndianaVoters.com

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Scientists have uncovered changes in neurological structure that could underlie the autism spectrum disorder known as Pitt Hopkins syndrome, thanks to the help of lab-grown brains developed from human cells.

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The federal public health emergency (PHE) has been extended to July 16, 2022. When the PHE ends, many of the policies put in place during the PHE will also end. During the PHE, states, including Indiana, have been prohibited from removing anyone from Medicaid programs (with limited exceptions). For example, states could not remove someone due to an increase in income or change in “categorical eligibility” (e.g. pregnancy, age, disability) that would ordinarily make them ineligible for Medicaid. This prohibition will end when the federal public health emergency ends.

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Our stars for April have smashed a world record. Friends Isaac Kenyon and Jordan Williams rowed 500km in tandem non-stop over 48 hours earlier this month to raise money for charity during World Autism Acceptance Week. The previous record was 36 hours.

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Brain scans of babies in the womb may reveal whether a child is at risk for developing autism later in life, early research suggests.

A small study of 39 fetuses found that, by 25 weeks of gestation, certain brain regions looked different in the unborn babies who went on to be diagnosed with autism compared with those who were not diagnosed with the condition.

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Last week state and local leaders of The Arc gathered in Washington D.C. for the annual Disability Policy Seminar. Pictured left to right: Jeff Patton, The Arc of Wabash County; Hannah Carlock and Kim Dodson, The Arc of Indiana; and Stan Keepes, The Arc Southwest Indiana.

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Welcome to the Autism Acceptance Month! This month is dedicated to not only awareness, but acceptance, action, inclusion and celebration. Continue to stay connected and check out all the latest news at the Autism Society of Indiana.

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Thank you to all the passionate stakeholders who attended the March IIACC meeting. We look forward to continuing collaboration for the benefit of individuals with ASD and communities statewide. Make sure to check over the resources and start signing up for our next quarterly meeting on June 2, 2022! Also, take a look back at March’s meeting for resources and meeting materials at https://indiananetwork.org/.

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In addition to our advocacy efforts,The Arc of Indiana is committed to directly serving people with disabilities to lead fuller, more inclusive lives.The Arc’s Erskine Green Training Institute provides postsecondary vocational training that leads to employment. 76% of EGTI graduates, including Payton Kemper, are employed 18 months post-graduation. Payton works full time, with benefits, at IU Health Ball Memorial Hospital.

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IIACC is looking for participants from Indiana who are impacted by ASD, including, but not limited to, individuals with ASD over 18 years of age, their family members and caregivers, education personnel, medical professionals, justice and public safety personnel, community providers, and employers. Potential participants can participate in an online, anonymous survey. The needs assessment survey takes approximately 10-15 minutes to complete. Additionally, if you want to take part in an interview or focus group, IIACC would love to get your insights! Schedule your interview!

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The new spring 2022 issue of Autism Eye Magazine is ready for you to read.

• In search of sensory solutions: how experts tackle sensory difficulties
• Exposed: councils bullying parents who ask for help
• Go outside: how open-air can boost learning and mental health
• Journey to a diagnosis: routes to an autism assessment, and why it’s so important to have one
• Fabulous holiday ideas
• Fighting on all fronts: families struggle to cope while slashed services haven’t recovered
• Could food be making your child anxious?

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The 2022 session of the Indiana General Assembly ended in the early morning hours of March 9th. Following are the legislative wins for Hoosiers with disabilities.

Lemon Law
The general assembly unanimously approved legislation to expand the state’s motor vehicle protection act, also known as the Lemon Law, to include accessible vehicles and accessible features.

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Briefly suppressing an overactive signaling pathway in juvenile mice that have an autism-linked mutation blocks them from developing some autism-like traits later, according to a new study. The findings help refine the exact timing of this “critical period” for intervention, the researchers say and have implications for therapies in people.

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30 Days of Autism events starts now! From luncheons to webinars to Family Night at a Pacer’s game – check out this calendar of fun-filled events for everyone.

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The 2022 session of the Indiana General Assembly wraps up at the end of the week. Important special education reforms are dead for this legislative session after the Indiana Senate voted down H.B. 1107. Important reforms do not always happen in one session – we will continue to fight the good fight. Click here to read WFYI’s report, ‘They should be embarrassed’: Advocates criticize Indiana Senate for 0-50 vote on special education bill.

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Some people with autism experience different sensations than you or I because of how their brains processes information from their senses. These senses include sight, sound, taste, touch, smell, temperature, and pain. Check out the HANDS in Autism® Sensory Experiences handout to learn more about ASD and to better these individuals with ASD’s sensory experiences and needs!

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Last week’s Senate Education Committee hearing on H.B. 1107, which would provide balance to parents in due process hearings by shifting the burden of proof to schools, was a reminder of just how lonely the special education policy space can be at the Statehouse. Over the years The Arc of Indiana has found ways to collaborate with colleagues in the education field, including the Indiana Conference of Special Education Administrators (ICASE) and the Indiana State Teachers Association (ISTA), but at that hearing, it was made clear that when parents feel empowered to fight for change, reality sets in.

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Hundreds of millions are spent on services that harm people with autism and learning disabilities. That’s the view of Sir Robert Buckland, Member of Parliament for South Swindon and an autism father. Buckland’s adult daughter is autistic. He told the House of Commons on Thursday (20 January) that mental health hospitals are failing people with autism and learning disabilities.

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The U.S. Food and Drug Administration (FDA) has granted ‘breakthrough device’ designation to a hair-based test designed to aid autism diagnosis. The acknowledgment shifts the test into a fast lane through the agency’s regulatory review process.

The test, called StrandDx, analyzes the levels of chemicals in a strand of a child’s hair to capture a snapshot of her ‘exposome’ — some of her cumulative environmental exposures and how she regulates certain essential nutrients. The measures suggest how a person’s physiology responds to her environment, which can predict her chances of having autism, says Manish Arora, Edith J. Baerwald Professor and vice chairman of environmental medicine and public health at the Icahn School of Medicine at Mount Sinai in New York City and co-founder of New York-based Linus Biotechnology, which is developing the test.

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The purpose of this study is to partner with families to collect information about health and development from the comfort of their homes. Specifically, we are interested in exploring how genetic, biological, nutritional, and environmental information relates to health and development. All study activities are conducted remotely with virtual support from our research team.

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Breaking News!

About Special Kids (ASK) and Family Voices Indiana have merged together to create Indiana Family to Family.

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For families touched by autism, navigating Christmas can be stressful enough without seeing their children look on at fun activities they would find too overwhelming to take part in. So our Stars of the Month are a couple whose young son suffers from a rare genetic condition and who have created an all-inclusive, free-of-charge Santa’s grotto designed to bring the magic of Christmas to other children with special needs or a disability.

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Beginning January 1, 2022, the following six case management agencies will be the sole providers of Medicaid Waiver case management services:

• Indiana Professional Management Group (IPMG)
• Unity of Indiana
• Inspire Case Management
• Connections Case Management
• The Columbus Organization
• CareStar of Indiana

Individuals and families who use a case management agency other than the six selected agencies must choose a new agency by December 14, 2021.

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Experimental compound, which has received orphan drug and pediatric rare disease designations from the FDA, displays effectiveness in treating symptoms of Autism and Alzheimer’s disease.

• Researchers developed a novel model to assess the effect of this experimental drug on symptoms related to autism, intellectual disabilities, and Alzheimer’s disease, and found that a short protein segment called NAP remedies a broad spectrum of symptoms.
• The symptoms that were remedied using NAP: slow development, poor communication, and brains with a relatively small number of synapses, low electrical activity, and protein aggregate similar to those found in Alzheimer’s patients.

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We are excited to announce the launch of The Arc of Indiana Academy, a new home to The Arc of Indiana Advocacy Training Program and Erskine Green Training Institute (EGTI) Workplace and Independent Living Support Subscription.

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We are excited to announce that About Special Kids and Family Voices Indiana are joining together to create a new organization to better serve families of children and youth with special healthcare needs and the professionals who serve these children in Indiana. ASK and FVI are two strong family-centered organizations who have functioned separately for many years. We have chosen to come together to strengthen our services, broaden our reach and maximize our funding. At the center is a commitment to better serve families and professionals through the power of shared experience and the value of professional partnerships.

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Could your family benefit from learning more about communication and conflict resolution? 

Over the course of a four-week program, families in the SPARC project get information about conflict and how it can impact marital, parent-child, and sibling relationships, as well as information on how to resolve conflict and have more productive conversations as a couple and with their typically developing teams.

Transition to Adulthood, Employability, and Post-Secondary Inclusive Practices

If you are a transition, employment, or VR specialist and/or work with transition-age students with ASD/DD, our training is for you. During the three days of intensive training, you will learn about and implement strategies and supports with transition-age students to help them get ready for employment. The knowledge and skills you will gain can be immediately applied to your setting! By the way, you can take this training online!

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New Budget Framework Would Provide Historic Investment in Disability Services System

From The Arc of the United States, Thursday, October 28 – “Today, President Biden announced the Build Back Better budget framework that would make significant investments in our nation, people with disabilities, their families, and the direct support workforce. This new deal includes $150 billion for Medicaid home and community-based services, or HCBS, which provide the support people with disabilities need to be a part of their community, and better pay for the workers that support them … We urge Congress to act quickly on this plan, add more funding for HCBS as negotiations continue, and fulfill the promise on paid leave. Change can’t come soon enough for millions of people with disabilities and their families.”

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The Bureau of Developmental Disability Services (BDDS) has selected six case management agencies to provide Medicaid Waiver case management services for recipients of the Family Supports Waiver and Community Integration and Habilitation (CIH) Waiver beginning January 1, 2022. Individuals and families who do not use one of the six selected case management agencies need to choose a new agency by December 14, 2021.

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What better way to get into the spirit of the fall season than to join Easterseals Virtual Camp for spooky crafts?

From October 25th through 29th, campers can dive into all things hauntingly creative, just in time for Halloween, so be sure to register soon. Early registrants will have a chance to receive a free box of craft supplies delivered to their home before camp starts! This offer lasts until October 13th so be sure to sign up today!

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The fall issue of our quarterly newsletter, The Arc News in Indiana, is at the printer, but you can read it now. Just click on the link for news on changes coming to Medicaid Waiver case management, Charting the LifeCourse, celebrating our 65th anniversary, Indiana’s new Education Scholarship Account program, a public policy wrap up, and updates from EGTI and The Arc Master Trust.

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My Small World Toy Store

Hats off to the team at My Small World Toy Store in Bath, which boldly placed the sign pictured above outside in the street to list all the ways it tries to be autism-friendly.

The store explained: “As a team who hold this cause so very close to our hearts – you may already know some of our team are parents to young children with autism and some are even autistic themselves – we understand the difficulties families can face in busy shopping environments.

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On the Road

Our travels continue throughout the state to thank members of the Indiana General Assembly who signed onto Concurrent Resolution 46, recognizing and honoring Direct Support Professionals (DSPs) for keeping Hoosiers with intellectual and developmental disabilities safe and healthy during the COVID-19 pandemic. Recently we joined staff, participants and area legislators at New Star in Northwest Indiana and at The Arc of Vigo County.

Thanks to Senator Karen Tallian and Representatives Mike Andrade, Pat Boy, Julie Olthoff and Hal Slager for your support of DSPs; and thanks to New Star President/CEO, Dan Strick for his advocacy during the legislative session and for hosting the event.

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This e-newsletter provides obstetricians, pediatricians, and nurses with links to the latest research on ways to understand and to help children and adults on the autism spectrum. Please feel free to send us your comments and feedback email us.

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Lt. Governor Crouch Joins in SAI July Issues Forum

Lt. Governor Suzanne Crouch joined in Self-Advocates of Indiana’s July Issues Forum. Check out their great discussion on the 2021 legislative session, 1102 Task Force and advocating for disability rights. Watch Here

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DSP Wage Increase & FS Waiver Budget Cap Increase Update

As part of its 2021 State Budget Bill, the Indiana Legislature included a 14% rate increase for direct support professionals through the efforts of partners such as The Arc of Indiana and INARF. The intent of these funds is to support the overall goal of increasing the statewide average DSP wage to $15 an hour. Therefore, the rate increase requires an authorized service provider to use at least 95% of the amount of the increase in the reimbursement rate to pay payroll tax liabilities and to increase the wages and benefits paid to eligible direct care staff.

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Facing the Future Together Indiana’s Transition Conference

The conference will be facilitated by the Center on Community Living and Careers (CCLC) of the Indiana Institute on Disability and Community. During the conference, state and national speakers will present about benefits, future planning, transition assessments and IEP’s, jobs and career planning, postsecondary education, independent living, new assistive technology, and more.

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The Arc of Indiana was established in 1956 by parents of children with intellectual and developmental disabilities (IDD) who joined together to build a better and more accepting world for their children. With over 30,000 members and 42 chapters in Indiana, and 140,000 members in over 700 chapters nationwide, The Arc is the largest national community-based organization advocating for and serving people with IDD and their families.

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Northeast LCC Strategy to Increase ASD Awareness

You can help educators and students both gain more awareness about autism spectrum disorder (ASD). Check out the HANDS in Autism® Information Card and Bookmark. The Northeast Local Community Cadre (LCC) is currently disseminating this resource across its region to reduce stigma and increase empathy for individuals with autism and related disorders.

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Home Safety Month – Burns and Scalds

Summertime can be a great time for cookouts and outdoor fires! While roasting marshmallows may be a fun activities for many kids and families, it is also important to know how to prevent and treat burns and scalds. For tips and facts about burns and scalds and how to prevent them, check out the Safe Kids Worldwide website!

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OLIVER: DOCTOR FACES INVESTIGATION

Almost five years after the death of autistic teen Oliver McGowan, the General Medical Council (GMC) has announced an investigation into the doctor who prescribed an antipsychotic that an inquest ruled was a “significant factor” in his death.

Dr Monica Mohan prescribed Olanzapine to Oliver, 18, at Southmead Hospital in Bristol in 2016.

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The Arc of Indiana communicates to a wide ranging audience through a variety of platforms. How are we doing? What can we do better? What should we be doing that we are not doing?

Please help us improve our communication efforts by completing our short 2021 Communications Survey. We welcome and appreciate your feedback!

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May 2-May 8th is Children’s Mental Health Awareness Week! Check out the National Federation of Families website and join the conversation to raise awareness and end prejudice and discrimination around the topic of mental health. There are many ways to get engaged through events, activities, and tools throughout the week!

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Join in a webinar on Thursday, June 3, 2:00 p.m. ET, to learn about federal legislation to grow and improve home and community based services.

Only decades ago, there were few options or supports for someone with intellectual and developmental disabilities (IDD) to live and participate in their community.

Though we’ve made great progress, our current systems are holding us back from what’s truly possible. People still face long waitlists for services, shortages and turnover of direct support workers, and a lack of affordable and accessible housing.

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It is with great pleasure that we wish a warm welcome to Keana Thompson. Keana will be joining us for seven months as an intern as she completes her degree in Social Work from Indiana Wesleyan University. Keana sends this message to you – our ASK friends and supporters:

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At the end of the legislative session, State Representative Ed Clere authored a concurrent resolution honoring Direct Support Professions:

Whereas, more than 26,000 Hoosiers work in Indiana as Direct Support Professionals (DSPs), providing exemplary personal and critical support and services to thousands of people with intellectual and developmental disabilities (I/DD);

Whereas, DSPs provide individualized supports, including navigating daily life, employment, transportation, finances, medical appointments, and hobbies in order to help people with I/DD learn or retain their independence, become involved in their local communities, and hopefully lead a high quality life 1with family and friends;

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After his remarkable 2017 Boston Marathon qualification, the 500 Festival appointed Andrew as their first ever Running Ambassador. Andrew’s goal is to build community through running. #NOlimits2Caring is Andrew’s newest Running Ambassador initiative. Each time Andrew races, a small nonprofit will benefit.

For the 2021 Carmel Marathon, Andrew chose ASK as the nonprofit to support. His efforts have resulted in bringing not only critical funds but also awareness to ASK and our mission. Andrew chose ASK in part, because it was the organization that first supported his father, Craig, twenty years ago in navigating the special education process when Andrew was entering Kindergarten.

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Coronavirus has had an enormous impact on all Americans’ sleep habits, but COVID-19 has been especially hard on children with autism who already deal with sleep-related issues.

It’s an especially critical issue because a new 2020 CDC report analyzing 2016 school data shows that autism is on the rise. The biennial update reports that one in 54 children is diagnosed with autism by age eight, up almost 10% from 2014.

“The world of autism has changed considerably since we were founded in 2005 when the estimated prevalence was 1 in 166,” says Autism Speaks President and Chief Executive Officer Angela Geiger.

Living with autism has its challenges, but life is made considerably more challenging when one isn’t armed with the sleep the body needs to function properly.

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We would like to thank everyone that came to the March Indiana Interagency Autism Coordinating Council (IIACC) meeting! The IIACC, supported by FSSA, and facilitated by Hands in Autism® is the Council that assists in implementation and dissemination of innovative activities through facilitation, informing directions and increasing public understanding and awareness of the state’s collective priorities, activities, programs, policies, and research. We look forward to see you July 2nd 2021!

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Individual differences in basic perceptual and cognitive functions have been shown to affect speech perception, language and literacy skills, as well as social and emotional development.

In turn, individual differences in language and literacy skills have been shown to be highly predictive of overall academic achievement.

Both genetic and environmental factors have been shown to contribute to individual differences in basic perceptual, cognitive and language abilities.

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Paying for college is a complicated process for any aspiring student. It’s a process that raises a ton of questions: What’s a Pell Grant? What’s a Perkins Loan? Do I have to pay anything back? For students with a disability, those questions are even more complicated.

The good news: A disability is not an impediment to a college education. There are plenty of resources for those who need help applying and paying for it.

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First Steps is partnering with an IU Occupational Therapy Doctoral Student and needs your help! They are seeking feedback to improve First Steps services to families. Families will be asked to attend one 60 to 90 minute online focus group in order to share your family’s experience in the First Steps Program.

The results will help design a training for First Step Providers that will lead to improved cultural awareness and family engagement and ultimately better outcomes for children served in early intervention.

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